Rituximab

[gilders]

I know Rituximab treatment has been talked about plenty of times, but thought it still might be useful for me to give an up to date view for anyone due to start Rituximab.

Like a few other on this forum I'm on the Ritazarem trial. I had my first Rtx infusion on Wednesday (June 3rd 2015).

Treatment was due to start at 9am and it actually began not too long after that. Initial problem was trying to get a cannula into my vein. The nurse eventually found a suitable vein and changed the cannula to a smaller size.
I was given some pain killers (just simple paracetamol tablets) and had a bag of methylprednisolone via the drip (1G/1000mg). Anti nausea and antihistamines were also given via IV. The methylprednisolone took an hour and after that a bag a saline solution was used to flush it through, which took a further half hour.
I then started with the Rituximab at a very slow rate. After the first hour I'd only had 25mls. The rate was increased every half hour and I think the RTX, itself, took about 4.5 hours. I finally had another bag of saline to flush it through, which took another half hour and then had to hang around a final half hour to make sure I was ok. So the total time was 0900-1630.

For anyone worried I'd just like to say my experience has been quite positive with RTX. The only VERY slight issue was a slight itchiness behind my ears during infusion. I did feel very sickly at about 10.30pm back home which lasted about an hour and each morning since I've felt slightly sickly (it's now Saturday), but nothing too severe.
All my other issues have been to do with the other drugs used (pred and the anti-histamine/anti-nausea). The anti histamine made me very sleepy and I kept nodding off briefly, which wasn't a bad thing.
Many people seem to feel better when on pred, but I only seem to get the undesired side effects. It's really been messing with my brain and emotional state. I've been switching from a chatty mode (like I've had a few beers) to trying to hold the tears back, to getting really annoyed at the littlest thing. I've been on steroids for about 15 of the last 20 years and have really had enough of them now! I'm now on 60mg a day and know that all the other nasty symptoms such as debilitating cramps will be starting soon. Prior to the RTX on Wednesday I'd been on 10mg/day for the last 10 months and my face was slowly begining to return to normal, now I'm going to be ballooning up again :mad1:

I'll try to remember to update this thread after each infusion (I am useless and don't get around to writing as often as I feel I should). I'm due another infusion next Wednesday which should be far quicker as I won't need the bag of steroids and the rate that the RTX can be given will be started quicker as I didn't react to it this time. Then I have another dose the following Wednesday. I should have had the fourth infusion the Wednesday after, but I've been allowed to go on holiday to Portugal:thumbsup: for a couple of weeks and will have the fourth infusion the Thursday after I return.

[Pete]

Hope you get good results from rtx and that the research yields an effective treatment regimen. Enjoy your trip!

[Debbie C]

Why did they up your pred to 60 ? Was it just for the infusions. Hope you start to feel better again so you can enjoy your holiday

[drz]

That is a lot of pred. I remember getting 100 mg with transfusions and 500 mg when they thought I was having a flare. That amount of pred (1000 mg for transfusion and daily dosage of 60 mg) would certainly make me an emotional roller coaster, chatty, and moon faced too along with all the other pred side effects. Hope it is working well for you and that you getting a correct amount for your needs. We can all empathize with you and hope the treatment is very effective and recovery quick so you can feel better soon.

[gilders]

I think the high dose steroids is due to the trial. At the start of the trial everybody's treatment has to be the same so that all the results collected can be compared equally. As some people starting the trial may be having a severe flare and high doses would be needed, I guess everyone else on the trial has to start off on very high doses. The tapering plan should see me reduced to 15mg by July 29th. After that date I will be randomized as to whether I have RTX every 3 or 4 months for maintenance or return to Azathioprine (which I stopped on the morning of my first RTX infusion).

[Geoff]

Good Luck mate, good to hear from you. Hopefully you will get onto a stable level state and be able to get off the pred again. Keep us up to date with your treatment and info with the trial.

[PattyL]

Thank you, this has been very helpful to me. Dr has mentioned RTX to me, not sure when yet. Waiting on biopsy results before he starts treatment been on 60 mg pred 2 mo.

[blu4runner]

I am also in the Ritazarem trial. I had my first infusion in August 2013 and my prednisone was increased to 60mg per day to comply with the study protocol. I was having a flare when I started.
At the time for randomization I was selected to get the quarterly rituximab infusions. I had my last infusion on 4/8/15 and completely stopped the prednisone.
I have a follow up with my doctor, Peter Merkel, in August but I am very satisfied with the process and the team at UPenn Hospital and the care they have given me.

Best of luck and I hope the infusions work well for you as well

[gilders]

blu4runner, glad to hear the trial has been good for you.
I'm hoping to be pred free as soon as possible, but think the study protocol will force me to be on pred for 2 years. I guess they'll need to keep patient's meds as close as possible so that fair comparisons can be made.

I hope I get randomised for maintenance RTX instead of Azathioprine. It is looking like many years of azathioprine use is the cause of my immature, odd shaped red blood cells.

[annekat]

Great, report, Gilders, and thanks for your input, too, blu4runner. I had to look up the Ritazarem trial as I didn't know what it was. How great that it is an international effort by top docs. I hope things continue to go well for both of you and you end up in the randomized parts of the study that you would choose. In any case, never having taken RTX, this gives me some insight and encouragement in case I ever do.

[drz]

blu4runner, glad to hear the trial has been good for you.
I'm hoping to be pred free as soon as possible, but think the study protocol will force me to be on pred for 2 years. I guess they'll need to keep patient's meds as close as possible so that fair comparisons can be made.

I hope I get randomised for maintenance RTX instead of Azathioprine. It is looking like many years of azathioprine use is the cause of my immature, odd shaped red blood cells.

If the physicians agree with this assessment and think it is adverse to your health or that it poses a threat to your health, they will very likely change your treatment.

[woz]

Hi gliders, I hope the switch to rituximab works, from what I have heard and read it should, how long have you been on azathiaprine ( I have been on it for almost 2 years) and what problems have you had with it? I am hoping to go on rituximab towards the end of this year ( fingers crossed) as it is going to be placed on the Pharmaceutical benifits system in Australia, hopefully I will be able to access it.

Regards Woz.........

[Jaha]

Gilders,
I hope everything goes well for you with the RTX. I have had to have RTX, 6 times since 2012, the 2 TXS in a 2 wk. period. I had some reactions along the way and now they give me IV Benadryl, IV Solmedrol, and Tylenol, then run it very slowly. I have to continue to take Benadryl and Tylenol every four hrs. for 24 to 36 hrs., depending on how I'm feeling. I hope you enjoy your holiday and wish you all the best in the coming weeks in the Trial.

[gilders]

how long have you been on azathiaprine ( I have been on it for almost 2 years) and what problems have you had with it?

Regards Woz.........

Hi Woz,
I have been on Azathioprine for about 15 of the last 20 years. I've learnt from my new Dr that this is longer than what is recommended for this drug. As for what problems it has caused me, it's hard to say. I've been on many drugs and also have quite a few other conditions (some linked to Wegener's and other ones too), so it's hard for me and Drs to decided what causes various problems with health. One thing that it 99% certain to be caused by my long term Azathioprine use is the immature, odd-shaped red blood cells.

I hope you manage to get the funding for RTX. As I'm in a trial there was no issue. At the start of this most recent relapse I'm having I think I should have started with RTX, but think it wasn't offered due to cost. I think the rules in the UK (according to NICE) is that cyclophosphamide must be used first before RTX can be authorised.

[gilders]

An update on week 2 of trial (infusion #2).
I was under the impression that with RTX each subsequent infusion should be more pleasant than the last. Unfortunately that wasn't the case this week.

The whole infusion was expected to be done with about 2 hours quicker than the first one as there was no need for IV steroids this time and the rate of infusion could begin quicker as I didn't react adversely during the first infusion. Overall it took almost as long as the first infusion as it didn't go 100% smoothly.

As usual trying to get a cannula in to a suitable vein and get it working was an issue. Finally it looked like it was working. It felt uncomfortable, but seemed to be working. After it had been used for blood samples and being flushed out after anti histamines I was connected to my bag of RTX (814mg for those who are interested). At this point the uncomfortable feeling became more of a painful feeling. I knew something wasn't right and my wife called the nurse. She said she wasn't concerned as there was no swelling near the cannula and it wasn't a "burining" pain I was feeling. She asked me to move my are slightly as maybe keeping it in one position may have been causing discomfort. This made the pain worse. She then slightly touched the cannula to slightly re-position it. At this point the pain was unbearable and the infusion machine began to beep - the RTX was not able to be pushed through at this point. She then said, "you must have known there wasn't something right with the cannula". It was removed and a couple of other people had a look at my veins. Another cannula was put in and this was also uncomfortable and at times painful, but it did last long enough for the rest of the RTX to be infused.

I felt much sicklier during this infusion than the first one and while the first time I was quite relaxed, this time I was constantly looking at the IV bag thinking "how much longer?".
I don't want to worry other people who may be due to have RTX. I'm sure the slight complications I had on this second infusion was due to my body (dodgy veins) rather than the RTX itslef. In fact, the sickness may have been down to the stress of failing cannulas which always make me anxious rather than the RTX. I didn't feel as sickly at night and the following mornings like I did after the first infusion, but have felt more tired. The tiredness could be due to the fact I've been a little more active this week.

Hope all goes well with my next infusion on Wednesday as I'm due to fly to Portugal the morning after.

I'll carry on to update so long as there's an internet connection at the villa in Portugal.

[Pete]

Now that they know about your "dodgy" veins, I hope the next infusion goes smoothly. I felt a little tired the day after my two infusions, but drove off on two vacation trips (6-10 hours drive away) with no problems. Hope you can enjoy your holiday.

[Geoff]

cannula's, dont you just hate them. I have to admit out of everything we have to go through and endure, that little piece of kit is my bette noir!
They are of course a necessary evil, and that's the only way i can accept them!
Are you fully hydrated before your infussion Gilders? It has been hot of late and I find that i need to dink more and more water. That does help with the veins I believe.
Good luck next week and then sit back and enjoy your time in Portugal!!

[Jaha]

Gilders, so you had troubles with the 2nd tx. They may have been running it to fast for your veins to take. I wish you all the best for your next one and that you enjoy your trip.

[gilders]

Gilders, so you had troubles with the 2nd tx. They may have been running it to fast for your veins to take. I wish you all the best for your next one and that you enjoy your trip.

Thanks Jaha. I'll certainly ask them not to do it any faster on my third one on Wednesday.

My feet are so badly swollen at the moment I can hardly walk. Dr Jayne doesn't think this is due to RTX though. It's likley to be due to Amlodopine, high dose steroids and one of my other drugs (I'm so forgetful at the moment with the steroids). The fact that my kdneys are at stage 4 also makes my feet swell. I'll be quite happy relaxing in and by the pool on holiday with a good selection of books. My usual holidays involve lots of exploring (at a gentle pace), but this year I think I'll just want to relax and try some local food (peri peri chicken).

[Jaha]

Gilders, Sorry about the feet swelling. Just take it easy on holiday. I have learned along the way,if nothing else in this journey, that little things are just as pleasurable. The fact of just being able to travel and being away from home to me is exciting. The local food does sound like a great adventure, enjoy!:thumbsup:

[gilders]

I have learned along the way,if nothing else in this journey, that little things are just as pleasurable.

This might sound stupid and it might be the pred talking (it really doesn't agree with me), but I think you are so right.
I've been getting stressed/annoyed with my 18 year old son as I'm still tidying up after him, even though I'm not feeling very good at the moment. But then I stop for a second and start to think in the future I may be absolutely unable to tidy up after myself never mind my son. This then makes me grateful that although it's a pain tidying up after him, at least I'm still able to do it - I'd miss it if I couldn't physically do it! Hope that makes sense:confused1:

[gilders]

Are you fully hydrated before your infussion Gilders?

Good point about dehydration. I know when I have to give a pint of blood for my haemochromatosis drinking plenty before has helped.
My infusions for rtx start in the morning and although I try to drink plenty before I still maybe slightly dehydrated as I urinate so much during the night. I also take diuretics to make me urinate. Plus the fact that my feet and legs swell could mean that as fluids I do have in my body are just under my skin, rather than in the correct places (organs/blood steam), maybe that makes me dehydrated (or perhaps the steroids are making talk a load of nonsense again :confused1:)

Hope you have a good time in Majorca, Geoff!

[Jaha]

Gilders, I have had many ups and downs, a little like you. It doesn't sound stupid, the Preds do distort thinking,but there always seems to be those people in your life (mine is always family members), that seem to push the stress buttons. When I can do little things, some days, like getting groceries in, doing laundry, sweeping the floor or cooking a good meal it makes me feel normal and a little accomplished. If I by chance I get to do some planting of flowers or yard work I'm in heaven. I do feel like the button pushers see this as, what have you done for me lately and then just run away with their neediness. I wish you all the best today with your next infusion. Try to take some water with you to drink and also maybe they can give you some Tylenol, along with the Benadryl, it could help with the swelling. I have had reactions more times than not and have to have a real slow drip and also take Tylenol and Benadryl afterwards for 24 to 48 hrs.to bad, so I don't have to bad of side effects. All the best to you and remember to just breath!:biggrin1:

[Mas78]

gilders,
I know from previous posts that you have had blood clots like myself. do you wear the 30-40 mmHg stocking for your swelling? I get by with the 20-30 on my left leg now but I have worn the 30-40 in the past when I also had kidney issues.
I've also got the rolling veins in my right arm, but my left arm is fine. I find nurses usually prefer to draw from the right arm if they can, and if they are one I haven't had before I let them try my right arm but they rarely get it and then they resort to my left arm. do you find they hit the vein better in one arm than the other? if so be sure to tell them.
Don't feel that you are rambling, I think you are asking good questions and posting good information that is going to help a lot of people.

Enjoy your Holiday ( Vacation for us here in the US ) as we could all benefit from those now and then.

[gilders]

Hi mas78,
Funny you should bring up blood clots. Just had my INR checked and it's still on the rise even though I stopped some anti-biotics over 2 weeks ago and keep lowering my warfarin.
I've just had a phone call from my local hospital saying that I must find a Medical centre whilst abroad (Portugal) to get my INR checked and to liaise back with local hospital to check my warfarin dose. Obviously with flying I need it to be as safely "thin" as possible.
As for stockings, I only ever wear them on flights and I'm not sure what "tightness" they are. Maybe I need to consider wearing them more frequently, although they're not going to look too great while I'm sunbathing with my shorts on in Portugal :blushing:

I don't really have a better arm for bloods and canulas. But I do have a particularly naughty vein that everyone is convinced is a great vein to use. They always try this particular vein no matter what i tell them and they either keep missing it or soon after hitting it it collapses.

[rudder]

My Doctors are suggesting that Rituximab may a alternative to the the Methotrexate I have been taking since 2001. I am currently anemic and had a bone marrow biopsy to determine what is causing my anemia but no answers. Does anyone know if Medicare will pay for this drug? Thanks

[Pete]

My Doctors are suggesting that Rituximab may a alternative to the the Methotrexate I have been taking since 2001. I am currently anemic and had a bone marrow biopsy to determine what is causing my anemia but no answers. Does anyone know if Medicare will pay for this drug? Thanks

They should cover it as long as you get their pre-approval before treatment. Your doc will have to contact them and explain the need.

[gilders]

Hello all!
A quick report on round/week 3 of Rituximab.
I listened to your advice and made sure I was well hydrated. I didn't get much sleep the night before as I kept needing the toilet and had a few sips of water each time I woke up. Bacon sandwich for breakfast with lots of drinks and I was ready to do battle with the damn cannula. It seemed to work! First attempt and it went in and lasted for the full duration. I kept my arm rigid throughout, scared that moving it would stop it working.
From start to finish, including flushing, removing cannula, etc, it only took 5 hours.
I felt tired for an hour after the antihistamines and anti nausea drugs, but otherwise felt great during the infusion.

After the infusion I was extremely tired and this has lasted for 48 hours. Admittedly during this 48 hour period we had a fairly long drive to hotel by the airport, a flight to Portugal and a drive to the beautiful villa I'm now at.

As mentioned, post infusion has made me incredibly tired and weak, but I managed a dip in the pool before those blasted cramps kicked in.

It has been strange how each infusion has effected me different, but some nausea and tiredness is a little price to pay for what I hope is some effective long term treatment.

Think I'll have a drive to Albufeira tomorrow to find a medical centre ready for my INR check.

[Geoff]

Good result! glad you got to Portugal in one piece, now relax and let the good stuff do its work. :thumbup:

[Eduardo]

I received 4 infusions of RTX last december, one before, one at Christhima's day, one at New Yar's day (good way to start 2015) and the last one ane week later. I'm very well now, almost whithout pred, next week I'll stop. For me was very good, no side efects and I hope no flares for a long time. Doe's anyone here know's something about remission time after RTX treatment?

[gilders]

Hi Eduardo,
Glad to hear Rituximab has been working well for you. Especially good to hear you're coming off the pred quickly. I've been on pred for many years and the side effects are bad.
As for remission, no one can tell how long. Some people can only achieve remission whilst on drugs such as pred, others can be drug free and if really lucky never relapse. I don't think the method in which you achieve remission (rtx vs ctx vs mtx etc) has an effect on how long remission is likely to last, but there is research into which method/treatment is best for maintaining remission (daily tablets such as azathioprine vs occasional infusions of rtx, etc)

I wish you well in your remission and hope it lasts a very long time!

[Eduardo]

Hi Gilders!
I forget to tell all my WG history. Diagnosed in 2004 after 3 years started the symptoms. Remission whith ctx + pred, 10 years maintened whith azathioprine. A flare last year, the doctor recomended RTX because the side effects of ctx. Now I'm 5mg of pred in alternate days + azathioprine (I've never stopped that during RTX treatment), in July I'll stop pred. My question is because sometimes I become litlle anxious about flares and as RTX treatments are pretty new, I want to now about the ones who is in long time remission after RTX treatment.

[ThePowerCouple]

Gilders,
Thanks for sharing your experience with Rituximab. :thumbup:

[woz]

Thanks for all the updates Gliders, all the best with the treatment.

Regards Woz.

[Debbie C]

Gilders,so glad to hear the infusion went well. Like Geoff said now its time to sit back and enjoy your holiday. Hope the inr turns out well....Take care

[gilders]

Not so much an update on Rituximab treatment, but just wanted to mention that my appointment with neurologist went well - Wegener's hasn't damaged my brain (about the only part of my body it hasn't damaged).
I've also been banned from taking codeine based pain killers for my severe headaches. Apparently when the pain relieving effect of codeine wears off it causes headaches, this leads to a vicious circle of using codeine to combat something that it causes itself.

The holiday/vacation in Portugal was perfect. Just what I needed and hopefully the break from blood tests and cannulas may have given my veins chance to get ready for my 4th and final rituximab infusion on Thursday (which I'll report on on this thread).
My INR did go well. I was surprised as I'm still bruising ridiculously easily, but I had it rechecked at my local hospital and it was still in range.

Overall everything seems to be going well. My main concern is my feet and ankles which are still swelling badly, so long as it's not due to my kidneys becoming worse, I'm happy.

[Jaha]

I so happy that your trip was refreshing and restful, you really needed that. I am wishing you all the best with your 4th infusion. Take care and let us know how things go for you.

[gilders]

Hello again,
I'm back with my report on my fourth and final (at least for a while) Rituximab infusion.
Even though I made sure I was well hydrated and my veins had had a 3 week break from needles and cannulas, I had my usual problems with the cannula. It took 3 cannulas and 3 nurses, but once the third one was working, it lasted for the whole duration.
Much like infusion #3 the infusions of anti histamines, anti nausea, rituximab and the flushes in between went perfectly. No ill effects whatsoever, just tiredness.
Travelling on the way home I slept most of the way and had slight nausea in the evening. I put the blame of the extreme fatigue the couple of days after infusion #3 on the fact that we went to Portugal immediately after my treatment, but after this fourth infusion I was also extremely fatigued the whole day after.

My overall conclusion on Rituximab is that there is nothing to worry about.
Apart from during the first infusion when my face felt ever so slightly hot and flustered, the only side effects have been a little nausea and fatigue. Admittedly the fatigue has been pretty crushing for me, but as I already suffer from severe fatigue, maybe the effect on other patients won't be so bad. The longest this "worse than usual" fatigue lasted was 48hrs, so nothing really to worry about.

I would strongly advise against driving home after the infusions. Even if the first one goes well, as I found the fatigue post infusion was worse on my last 2 infusions.

If there's any specific questions anyone wants to ask, feel free to reply to this post or send a personal message.

[Miska]

Thank you for this post. I am going to do Rtx infusions soon. (I had a second opinion at the Cleveland Clinic). You answered a lot of my questions! I know there are probably thousand ways to give it but is 1 infusions/ every week for 4 weeks common?

[gilders]

Hi Miska. 1 dose per week for 4 consecutive weeks is not usual, it is a higher than usual dose that they have decided to use for the Ritazarem clinical trial that I am on. I was told that I had the option of the trial or regular treatment. Regular treatment would have been 1 rtx dose, then 2 weeks later 1 more dose. This would then be followed by a maintenance dose once every 6 months.
On the trial, if I'm randomised to continue with rtx as maintenance, then I will have another dose every 4 months. Therefore, on the trial, I'll be having roughly twice as much rtx as the regular routine. I can't really say whether that's a good or bad thing.

[Pete]

Thank you for this post. I am going to do Rtx infusions soon. (I had a second opinion at the Cleveland Clinic). You answered a lot of my questions! I know there are probably thousand ways to give it but is 1 infusions/ every week for 4 weeks common?

I also see a rheumy at Cleveland Clinic (Dr Villa Forte) for GPA/Wegs. About 18 months ago, she rx'd 2 infusions of rtx two weeks apart. These were nonevents as far as side effects were concerned. Now, I'm getting set up for 4 weekly infusions this month. I will also be coming off mtx as I begin these treatments and will stay off it. I stayed on 15-20 mg of mtx/week during my first treatments.

I get my rtx at Ohio State under the supervision of a nephrologist who was on the team who dx'd me. Saves the time and expense of driving 2+ hours one-way to Cleveland for treatment.

[LCL2013]

I had my quarterly appointment with Dr. Villa Forte at the Cleveland Clinic on Friday the 10th. I've been on Cellcept (2 tabs twice/day) since March and was down to 10mg prednisone and feeling really good, until I caught some sort of virus last Wednesday that really put me down for the day.

Anyway, Dr. Villa Forte doesn't believe I'm in remission because of the look of my cells when she ran a urinalysis. My sed rate is about 56, but my previous doctor was never able to get it in the normal range. So, Dr. Villa Forte wants me to start the Rituximab infusions. I'll do them here at a local Rheumy's office so that I don't have to make the 3 1/2 hour (each way) drive to Cleveland. She also took me back up to 20 mg prednisone. Boooo! I had stopped taking the Cellcept when I got sick last week (at the advice of my personal doctor) in order to give my body the chance to fight off the virus. Dr. Villa Forte also instructed me to discontinue the Cellcept entirely as I wait for word on scheduling the Rituximab infusion.

I feel so crappy right now with this cold - at least I hope my symptoms are just a cold and not my Wegs flaring in my sinuses. :-/ I'm a little nervous about the infusions, but also excited about the possibility of remission and finally going off Pred after 2 years - been as high as 80mg (initial start of treatment) and down as low as 5mg (very briefly last fall before I came down with bronchitis).

[Pete]

I feel so crappy right now with this cold - at least I hope my symptoms are just a cold and not my Wegs flaring in my sinuses. :-/ I'm a little nervous about the infusions, but also excited about the possibility of remission and finally going off Pred after 2 years - been as high as 80mg (initial start of treatment) and down as low as 5mg (very briefly last fall before I came down with bronchitis).

I've had a cold recently as well - got it from my two year-old granddaughter. I took Zicam for about four days and got to feeling better. Still have a lingering, loose cough that is occasionally productive. I'm on mtx until my rtx infusions are scheduled, then off. I had tapered down to 2 mg of pred when I started having joint pain and more fatigue. Went back up to 5 mg pred and felt better. Then, I e-mailed Dr Villa Forte about it. She was OK with the 5 mg pred and instructed me to get rtx.

[LCL2013]

Pete,

Sorry to hear you've been suffering through a cold as well. Being around small children (my daughter is 7) is tricky. This time though I actually got my cold from my sister-in-law.

Dr. Villa Forte (who happens to be in Brazil right now until 4 August taking a well-deserved vacation, I hope) told me to stay off the Cellcept in anticipation of me QUICKLY proceeding to RTX infusion. To accommodate my desire to have the infusions done locally she said she would send my local Rheumy a letter to proceed with said infusion therapy. 6 days pass and I hear nothing so I call CC and learn that the letter did not get sent. Dr. sends it from Brazil (you rock Dr. V-F). I call the local Rheumy and am told it has been 2 1/2 years since I've been there so I will need to make an appt with the doc before we can proceed with anything. Okay, that's fine. "When can I see the doc?" First available appointment is 26 August. "But...that's over a month from now!" Sorry that's the soonest we can get you in. OMG!

I check my insurance for the name of another local Rheumy who is in-network. I call - she has experience with WG and they perform infusions. They will need a referral from my family physician. "Okay, no problem. What would be the earliest appt available?" Next week. "Awesome!" I'm now trying to confirm that my Fam Physician sent the referral so I can schedule my appt and notify Dr. V-F's office to send them the letter. I'll still have to wait while they send the pre-auth through my insurance for the infusion, which could take a couple of weeks. Really nervous about only being on 20mg of Pred to control the WGs for potentially another 3 weeks or more. :crying:

[Pete]

LCL2013,

Dr VF indeed rocks. She probably sent my treatment instructions to Dr Bhatt at OSU just before she left. I've always gotten prompt responses from her.

I spent last week working thru OSU Nephrology before I stumbled across Dr Bhatt's number. I called Monday morning and saw him early Monday afternoon. The infusion center has the order. Just waiting for insurance to approve $80k worth of rtx...

[LCL2013]

Pete,

That's great that everything moved along so quickly. My insurance already approved my infusion, but that was back in March or April, and it to have the infusion performed at the CC. So, useless to me when I'm going to have it done elsewhere. I'm hoping that the fact that they've approved it once already will help speed things along. <fingers crossed>

[kaysee]

LCL, better check with your insurance company to make sure the treatments are still approved. When I had my infusions the insurance company set a window of time by which it had to be done. My Dr office had to work within that window of time to make sure that all four of my weekly infusions could be scheduled. Just because it was approved back in March or April, may mot mean it is still approved. Just as a precaution I would check with them.

[LCL2013]

Well, it looks like my Rtx infusions are a go! My first one is schedule for next Friday, 31 July and I will finish on Wednesday 19 August. I'm nervous, excited, a little impatient to get started. I'm right at 2 weeks of nothing but 20mg prednisone and getting a little anxious, even though I still feel pretty good. Starting to develop some swelling in both knees, both ankles, and two toes of my right foot, but nothing painful.

The insurance came through like a charm. I had to call the specialty pharmacy to have the previous Pre-Auth with Cleveland Clinic cancelled and the local Rheumy quickly received the authorization for the treatment starting 29 July, but it has to be completed within 5 weeks. Thankfully, the Rheumy was able to get me scheduled very quickly as well.

The scheduling nurse commented that my dosage will be 500 (mg?) versus the more common 1,000 (mg?). Can others tell me what their dosage was and if they were given a reason for said dosage?

Thanks!
Linda

[Pete]

Hi Linda,

My upcoming round of rtx will be 375 mg/sq meter. Gotta get a TB test before I can get the infusions...

[gilders]

814mg for me. I think dosage is altered for body weight (currently 95KG for me).

[LCL2013]

I didn't think about that, gilders. Thank you.

Pete - I also had to have a TB test done, as well as a chest x-ray. Managed to get them in the same day I met with the new Rheumy and the results for both were back the next day.

[Pete]

I didn't think about that, gilders. Thank you.

Pete - I also had to have a TB test done, as well as a chest x-ray. Managed to get them in the same day I met with the new Rheumy and the results for both were back the next day.

If the nephrologist hasn't ordered the TB test by noon on Monday, I'll ask my PCP to order it.

[gilders]

I started this thread as a reference for people who maybe due to start Rituximab. Now that I've completed my 4 infusions, I thought I wouldn't need to do any more updates. But as things don't seem to be going exactly to plan I thought I may as well do another update.

Firstly, a little back ground info that may make my current situation more understandable. Autumn/Fall 2012 first symptoms of relapse/flare (ANCA positive, fatigue beginning to worsen, etc). I usually relapse aggressively and my kidneys are first to be "attacked". This time kidneys were coping and I was only slowly feeling worse. Therefore a nasal biopsy wasn't performed until approx 12 months since start of symptoms. Autumn/Fall 2013 relapse/flare confirmed and my usual treatment of Pred and AZA commenced. This treatment is usually effective and fairly quickly does it's job for me, but this time, much like the relapse itself, it took a long time for things to settle and by the start of this year my kidneys had been damaged a little further.
By Spring 2015 my local Drs were sure that I was in remission. Bloods tests had been good (with the occasional blip) for a few months, yet I still felt more fatigued than usual. The things that concerned me were the fact that if my Dr believed I was in remission why hadn't he lowered my Pred or Aza for about 8 months?

I got in touch with Dr Jayne at another hospital as, as far as I'm aware, he's the "main man" in the UK for Vasculitis. I met him in April and he said that he would consider my Wegener's to be "grumbling", i.e. active, but not aggressively and was certain a reduction in meds would lead to a full blown flare. The decision was taken to increase Pred, stop Aza and start Rituximab.
This meant that if I was already in remission then I might not feel any benefit, but at least we should know for definite after all the RTX that I'm now in remission and the worse fatigue was something I'd have to accept as the the "new me".
If I was still slightly active (grumbling) then the 4 infusions of RTX and high dose pred will knock it in to remission.

I never thought of an option 3. I may actually become worse after the Rituximab and high dose pred. Unfortunately, this seems to be where I'm heading. I have been feeling even more fatigued than any period over the last few years, but put it down to post RTX infusions, but my last infusion was over 2 weeks ago. I've started with the nose bleeds again and my kidney results are worsening.
I had an appointment with one of Dr Jayne's colleagues yesterday and he was concerned. He wanted to increase my steroids but I persuaded him otherwise. I was due for my next appointment in a month, but he has changed it for 2 weeks time to see if there is any improvement (if not I don't think I'll win my no steroid increase argument). He has repeated some blood tests and if the kidneys show any more deterioration I will be back in for a kidney biopsy within a few days (my local hospital would probably have a couple of months waiting period so I'm impressed with this hospital).

I was really pinning all my hopes on Rituximab and it's been quite a battle to receive it (had to take part in a clinical trial to guarantee I'd receive it). I can't tolerate cyclophosphamide so I'm not left with many options as far as the "big guns" of treating Wegener's.

I've certainly not given up hope on RTX working for me and there is nothing during this experience that would make me think no to trying RTX for anyone else who needs it.

[Pete]

Hi Gilders,

It is very disappointing to read of further deterioration after rtx. That said, I've read that it takes several weeks to a couple of months for the drug to take full effect. I hope you start to improve soon.

On a personal note, I get my TB test on Monday. It looks like my first rtx infusion will be the first week in August at the earliest.

[annekat]

Thanks, Gilders. I have not yet been a candidate for RTX but have taken my lifetime quota of CTX, I think. So it is good to know what others go through with the RTX, and that the results are not always as hoped, in case I ever need it. I'm hoping that in your case, as Pete suggested, you just need more time with it. I'm glad you are staying with Dr. Jayne and his colleagues, who seem to know what is best for you, and that you'll follow through with their advice on the steroids if things don't get better soon.

[woz]

Thanks for the update Gliders, sorry to hear that you are a little unwell, like pete posted, It can can take a little time to get the desired effect, lets hope it kicks in soon, and you can get back to normal. Will see my ruemy in a month, i will hopefully find out more info regarding Rituximabs use in Australia.

All the best......Woz.

[Geoff]

Hi Gilders, sorry to read your latest post, I know how dispiriting it can be when we pin our hopes on a drug or treatment and things don't pan out quite how we envisaged.

I was surprised how long, i.e several months, before i felt any improvement after taking RTX, and in fact it wasnt until i finished the 2 year cycle of infussions before i finally platformed out. I am hoping that this will be the way it works out for you my friend.

Phsychologically its great to have Dr Jayne or your case and the full weight of the Addenbrooke's team behind him. Their quickness to deal with issues is also very encouraging and we know they will keep close to you all the way.

I'm not into Clinic 12 until friday 28th August and so i hope to hear that you have stabilised out before then. If you need a bit of moral support, give me a call and i would be only too happy to pop up to Cambridge and meet up.

All the best and take it one thing at a time.

[Alysia]

Dear gilders.
I am sorry that you are not doing well.
Please consider the following: after smoldering (grumbling) for about 4 years it took me 2 rounds of rtx to get into remmission, 6 months between them, 2000 mg each.
My hypothesis is that the rtx didnt yet start working for you and since you stopped the aza, you are not "covered". Maybe you should be back to the aza ?
The longer the smoldering, the longer it takes to get into remmission. Kind of stubborn wg.
How much is your creatinine ?
Is plasma pheresis an option ?
As for the fatigue, for me2 after each round of rtx (and I already had 5) I have about a month of crazy fatigue and pains all over the body, like after car accident.
Hang in there. Praying for you, my friend, and asking my sweet dr. Phil to help you from his good place in the presence of God. We can count on him.
please update us.

[PattyL]

Hi Gliders, I just started rtx July 25th. I will have my next infusion in 2 weeks I was told that is when I will start to notice a difference. Sorry to hear rtx did not help you. I also have kidney,lung,involvement I was diagnosed over 20 yrs ago. Hope this does the trick for me. No side effects.

[LCL2013]

Hi Gilders. I'm so sorry to read that you're feeling worse rather than better after your round of infusions. Hopefully, what others say will happen for you and you'll begin to improve as time goes on.

I'm a little nervous now about my first infusion on Friday. I too never considered an Option 3, that I might actually be worse afterwards. I'm still only on 20mg of Prednisone and, other than some joint swelling, I don't feel too bad. I know things are happening (fluid is starting to build up in my ears again) but they haven't really impacted me yet.

Please keep us posted on how you're feeling and I really hope you start to see improvement soon.
Linda

[gilders]

Thanks for all your kind words and support.
I'm really not in too bad of a place at the moment.
Blood results relating to WG activity are good. I know blood tests only tell half the story, but good results are still better than bad. I don't actually feel too bad if I'm resting (except for tiredness).
Although I'm feeling worse than pre-Rituximab, I can put this down to other reasons other than my Wegener's becoming more active - increased dose of steroids and lack of sleep.

Alysia - My creatinine result has improved slightly (288), but due to my symptoms my Dr has decided he still wants me to have the renal biopsy. This should be at the beginning of next week. He wants to see if there is any current inflammation or if it is all old damage.
I don't think you can have other immuno-suppressants whilst on RTX, such as Aza. I'm also trying to avoid Aza because I've been on it for about 15 of the last 20 years and it is causing odd-shapped, immature red blood cells.
I do agree with you about the longer the "smoulder" the longer it takes to get back in remission. This latest relapse started almost 3 years ago and diagnosis and treatment started almost 2 years ago. It's usually only taken about 6 months to get me back in remission, plus a few years still on treatment/meds.

Linda - Don't feel nervous about your first infusion on Friday. As I mentioned earlier, I don't regret trying RTX and, in fact, chances are I may need more/higher doses which I will accept.

Geoff - It's encouraging to hear that it can take quite some time to see the benefits from RTX. I was told that things should improve 6 weeks from first infusion. Perhaps because I'm not having an aggressive flare I won't see improvements for some time?
We will get to meet up. My appointment dates keep changing, so I'm trying to wait until things are a little more settled where I can plan a definite date and time.

Patty - I was also diagnosed just over 20 years ago. Hope the RTX goes well for you with no side effects. The only side effect that I'd consider bad is severe fatigue, but that may not be due to the RTX anyway (lack of sleep, one of my many other conditions, possibly WG becoming more active).

Geoff, Anne and Woz - Thank you.

I'll update with renal biopsy result. I suspect it will be old damage rather than active Wegener's causing inflammation, but we'll see. I hate renal biopsies. They're usually a quick and simple procedure, but things never seem to go as expected with me. The last time they had 15 attempts at obtaining a suitable specimen from my right kidney. They had to give up and move on to my left kidney where they succeeded after 5 attempts.

[annekat]

I don't think you can have other immuno-suppressants whilst on RTX, such as Aza. I'm also trying to avoid Aza because I've been on it for about 15 of the last 20 years and it is causing odd-shapped, immature red blood cells.


I'm sure I've read on here about people continuing to take another immunosuppressant while on RTX, or having an infusion of CTX before the RTX infusion (maybe not immediately before, but in close proximity). Perhaps this could vary with the case and the patient, and different docs have different points of view. Perhaps if you are new to RTX, they don't want to complicate things with additional meds. Or maybe in a more acute case, a newly dx'ed patient in grave danger would need to get a jump start with a faster acting med such as CTX. I don't remember specific mention of AZA, and your other reasons for wanting to avoid that at this point are understandable. I'm just wondering about this myself for the same reasons Alysia mentioned and would welcome any further discussion.

[Pete]

TB test was negative. First (of four) infusions scheduled for August 6. Will take last mtx on Wednesday.

[Alysia]

I am glad your creatinine is getting better gilders. Its important. You can be both on aza and rtx. My sweet Phil was for years.

[gilders]

I've just realised one of the reasons I currently won't be able to be on Aza and RTX - I'm on the Ritazarem clinical trial. As the trial is set up to see which is more effective - Traditional maintenance meds such as Aza or using RTX by itself as maintenance, than taking both would make the trail pointless.
I want to keep on the trial to help other people and future choices on how best to treat Wegeners, but I guess I should put my own health first as I'll be no use to the trial if things get "out of control". Obviously my drs will take me off the trial and give me the most appropriate treatment.

I actually had a phone call yesterday asking me to come straight down for a kidney biopsy. I explained that I hadn't stopped taking the warfarin and I was told I needed to be off it 5 days prior to biopsy. The nurse told me that it would be ok and they can reverse the effects of warfarin. I was under the impression that warfarin reversal was usually only used in emergencies. As I've had 3 or 4 DVTs I thought I better check with the specialist. He wasn't happy about warfarin reversal and cancelled the procedure. I now have to phone up on Monday to see if there's going to be any empty beds next week.

Glad the TB test was negative Pete. I'm sure you'll carry on with positive experience of RTX.

On a positive note. The nose bleeds that started just before my clinic appointment only lasted for 3 days and my sore throat seems to be clearing up.
Swollen feet and exhaustion are just as bad. If only I could sleep for more than 2 hours at a time, I'm sure I'd feel much better.

[Geoff]

Hope you get that biopsy sorted soon and some results to consider Gilders. Regarding the lack of sleep I have been on Zoplicone for some time now, es[ecially when i was on a high steroid doseage. I know some people hold their hands up in fear and shock with regards to sleeping tablets but lack of sleep is a "killer", and i found that by breaking that bad circle of 'no sleep' i had more to give to deal with the real issues.

I am tapering the doseage now i am down to 4mg of pred. Maybe you should give it a thought or two??

[Jaha]

Gilders,
I am so sorry that you do have to go thru with the biopsy now. I agree with Geoff about sometimes having to take something to help you sleep. I take Xanax at night to sleep other wise I can't sleep. We all know that sleeping heals the body and is very important for us with this disease. I have had 6 rounds of RTX and all but the last one was while taking Cellcept. The series I had in Nov 2014, really knocked me for a loop. I didn't feel good until I quit taking Cellcept in March2015 completely. I had told my Doc that I felt like I was being poisoned and was exhausted all the time. My Doc and I discussed the RTX study done in Europe, I assume now it's what you are in, she said that they were discovering that some patient's were being overly treated. I just had a one large RTX infusion on 6/29 and just this week I am starting to feel fairly well. My hope for you is that everything turns out good with your biopsy and that the RTX kicks in soon. Please take care of yourself dear friend.

[Birdie]

I've just realised one of the reasons I currently won't be able to be on Aza and RTX - I'm on the Ritazarem clinical trial. As the trial is set up to see which is more effective - Traditional maintenance meds such as Aza or using RTX by itself as maintenance, than taking both would make the trail pointless.
I want to keep on the trial to help other people and future choices on how best to treat Wegeners, but I guess I should put my own health first as I'll be no use to the trial if things get "out of control". Obviously my drs will take me off the trial and give me the most appropriate treatment.

I actually had a phone call yesterday asking me to come straight down for a kidney biopsy. I explained that I hadn't stopped taking the warfarin and I was told I needed to be off it 5 days prior to biopsy. The nurse told me that it would be ok and they can reverse the effects of warfarin. I was under the impression that warfarin reversal was usually only used in emergencies. As I've had 3 or 4 DVTs I thought I better check with the specialist. He wasn't happy about warfarin reversal and cancelled the procedure. I now have to phone up on Monday to see if there's going to be any empty beds next week.

On a positive note. The nose bleeds that started just before my clinic appointment only lasted for 3 days and my sore throat seems to be clearing up.
Swollen feet and exhaustion are just as bad. If only I could sleep for more than 2 hours at a time, I'm sure I'd feel much better.

Now that's a list of current issues and I'd guess it's incomplete as well. I hope it's not overwhelming to an expert like you, it was for me.

On the sleep issue... the advice I got was to jog around the block a few times, that'll make you sleepy. Uhm, people don't get it.

Hang in there.

[Pete]

And the liquid gold has begun flowing into me...

[LCL2013]

I had my first treatment last Friday, Pete. Had a small reaction (itchy ears and throat and even around my mouth), but the Benedryl took care of it. Good luck today! I get treatment #2 tomorrow.

Can someone remind me again how long it takes the Rituxan to start working? Other than these infusions, I'm only on 20mg of Prednisone and the roving joint pain is a real pain. Hope no other, unseen, damage is going on as I wait for the Rituximab to do its thing.

[gilders]

I'm home ....... for 2 days:sad:
Got the phone call Monday which asked me to come down to Addenbroke's (Cambridge hospital) for observations and to prepare for kidney biopsy on Tuesday. I was then due to return home Wednesday.
Well I actually made it home just after midnight Friday night/Saturday morning, but only for the weekend. I didn't even get the biopsy as it was too risky, but did get news that I almost certainly have another condition/illness to add to my list (possibly Glanzmann Thrombasthenia).2173 The bruise that you can see on my arm is from one pin-prick vaccine. It has travelled a far down as my wrist.
Obviously which such bruising from a single shot, biopsies are out of the question. It seems that although I have enough platelets, they don't work. My creatinine jumped to 345 and it was deiscussed about the benefits of plasmatherisis, but they can't create an access point due to bleeding risk. Aswell as kidney biopsy, another bone and boe marrow biopsy is needed, yet it's too risky to do anything more invasive than blood tests.
Usually it's not too tricky to counteract blood that either clots too easily or takes to long to clot (there's drugs that can be used). But I'm a very tricky case. Platelets are the first line of defence for cuts and injuries - they plug up the gap (cut) by sticking together (mine won't stick). Then other parts of your blood finish the job off, becoming "sticky" near the newly platelet-plugged cut. The other part of my blood is "sticky" - too sticky. Therefore I'm at great risk of bleeding to death, but also getting blood clots (I've already had at least 3 DVTs). Therefore the drs haven't worked out how to combat the DVT/blood clot risks without causing major bleeding issues.
I'm off all anti-coagulation in hospital and I'm plugged up to a machine that massages blood from my calfs 2174 For this weekend while I'm allowed home I've been put on a very low dose of Fragmin and regular compression stockings.

They did manage to do an ultrasound on kidneys. The image of the kidneys was very bright white which the radiologist explained that that occurs when kidneys are not working at all well. He also said he had found a cyst in the kidney. The dr later told me there were a few cysts with that were all normal (I guess she meant not dangerous) except for one which needs to be followed up on.

I think on my last post I'd said "I'm really not in too bad of a place" unfortunately I can't say that now. I'm having periods where I'm not feeling too bad, but then I'll only make it as far as the toilet and I'm about to pass out. I have not been this weak since I went through the initial period before I was diagnosed 20 years ago.
We (me and the drs) still don't know if my Wegener's is causing this severe weakness or the problem with platelets.

The current plan is simple - sort out the platelet problem as it's almost impossible to diagnose/investigate/treat any other problems when my blood won't clot. The pic of my left arm is my worse bruise (you can only see about half of it), but most of my body is now severely bruised except for face, knees and feet.

As this post is in my thread titled "Rituximab" I just want to explain that this new platelet issue isn't something that I'm warning people about as a potential side effect of Rituximab. I've had problems with severe bruising ever since diagnosed with Wegener's 20 years ago. Could Rituximab have made this platelet condition, which I guess I must have had for many years, worse? I really don't know, maybe the drs might figure that out next week.

[Pete]

Yikes!! That's a really scary problem. I hope they get it sorted out soon!

[gilders]

Thanks Pete.
Glad to hear your latest infusions have begun and I presume you're doing well with it.

[Pete]

Thanks Pete.
Glad to hear your latest infusions have begun and I presume you're doing well with it.

One down, three to go. So far, so good except for two restless nights thanks to the extra steroids...

[drz]

Sorry to hear about your problems. Sounds like a most unfortunate situation with no good fixes in sight. Hope they figure out something soon that works for you cause that is a most undesirable position to be in at this point.

[whatthewhat]

We're pulling for you!!

[Birdie]

Been there done that. Awww crap it aint fun. Sounds like you've got good care and enough experience to handle it. Find a way to keep a positive attitude, it makes all the difference.

Hospital tip #2: The transporters come to your room to take you to a lab, scan, x-ray or something. Act as if you're completely drugged out, off in space somewhere. On the cart lay on your side in a fetal position moaning a bit. As you're being pushed down the hall ask "Is my butt covered" in a quiet voice so they lean over and ask you to repeat your question. When they say yes, it's covered... you reply quietly "Could you please fix that?"

[woz]

Gilders, when it comes to luck, you have it all, and unfortunately my friend it has been bad , its just a matter of time before it changes to good, so hang in there, I can feel a change in the air, and its coming you way. I will even have an extra scotch for you out of my lucky scotch bottle. (lucky because there is still some in it)

Regards Woz....

[Alysia]

Oh. No. My dear friend gliders. I am so sorry for your sufferings. I wish I could help.
You are treated in the best place possible and you are a trooper. A fighter. Hang in there. I hope you will get better soon.
I pray for you and I ask my sweet dr. Phil to help you from his good place in heaven. Since dr. Phil is in charge, you dont need to worry.

[kaysee]

Gilders - sorry to hear about the bad time you are having. I pray that things will start getting better quickly. Hang in there.

[Jaha]

Gilders,
You are very courageous and I am so sorry that you going thru this study, has caused you addition problems. I'm wishing you all the best. I pray that your Docs come up with the right plan of care to get you back on the road to recovery.

[Pete]

Some details about my rtx infusion today. This was #2 of 4. Dosage was 375 mg/sq meter. Was given 650 mg of Tylenol and 10(?) mg of Benadryl at 9:15. 125 mg of Solu medrol followed at 9:17. Rtx started at 9:30 and finished at 12:40. Flow was constant at 100 ml/hr.

my wife and I went for a nice lunch afterward followed by a little window shopping in German Village. I've just been chilling since we got home around 3:00. Ready for the grandkids to visit tomorrow.

[gilders]

I'm home, hopefully for good!
The haemotologists are still trying to figure out what is causing the problem with the platelets. One of the drs said that she has only come across 2 cases of the problem I'm having with the platelets. One did get a diagnosis and the other patient never got an answer for what was happening. I really hope they figure out exactly what's going on.

My kidneys have made a significant turn around which is great. Due to this and the bleeding risk from my platelet problem, the kidney biopsy is a definite "no" for now. It was mentioned that the kidney improvement could be down to Rituximab finally kicking in to gear. This would also suggest that Wegener's/vasculitis was active in my kidneys again.

Jaha - I don't think the trial has caused the problems I'm having. It's probably just a coincidence that my health deteriorated since I started the trial and Rituximab, we can't be certain. In fact maybe I started the trial and Rituximab just at the right time. Perhaps if I wasn't on Rituximab already, this flare (if it is a flare causing the problems) would have got much more severe.

Pete - Glad to here the Rituximab doesn't slow you down one bit. Doing some window shopping afterwards - all I wanted was to sleep. Although I'm sure by the time the grandkids have gone home you'll be wanting some sleep. If you still have energy after grandkids then I want to know exactly what meds you take, your diet and everything about your life style so I can mimic it and get some energy back in my body.

Geoff came to visit me on Wednesday in Hospital. We had a good chat and I'm very grateful that he took the time out to visit. He was also a good luck charm - I got the good news that my kidneys were continuing to improve, the fact that Rituximab might be finally starting to work and most importantly I was allowed home the next day. The good luck carried on the next day when my son got his A level results. He got good enough grades to get in to his first choice Uni, plus an extra £1000 scholarship.

I'm still suffering from severe fatigue and weakness with only the slightest bit of exertion. I'm hopeful that this will improve along with the kidney improvement.

[Pete]

Pete - Glad to here the Rituximab doesn't slow you down one bit. Doing some window shopping afterwards - all I wanted was to sleep. Although I'm sure by the time the grandkids have gone home you'll be wanting some sleep. If you still have energy after grandkids then I want to know exactly what meds you take, your diet and everything about your life style so I can mimic it and get some energy back in my body.

It's really been pretty simple for me. I was in pretty good physical condition when I got sick - walked 2-4 miles most days, swam 1500 meters once or twice a week.

Since my 2012 flare, I've been pretty diligent about getting back into good physical condition. When I first started, I could walk maybe 200 yards before I was really tired. It took several months, but I worked up to walking about 3 miles in an hour in our neighborhood (that took a couple of months of about every third day walking). Last winter, I added light resistance training (suspended for the summer as I enjoy being outdoors more than in the gym). Now, I walk 3 miles 4-5 times a week. I'll resume weight training probably in late September or October, and I'll add lap swimming to the mix (gave it up for a few years because of eardrum damage - now healed).

Since last fall, my wife and I have made conscious decisions to eat healthier. We eat more fresh vegetables and fruits (organic usually), oily fish (salmon, tuna, swordfish), poultry, and our lusty cuts of red meat. We've been eating gluten free, but new research indicates that it doesn't do anything for non-celiac people, so I'll go back to whole wheat or multi-grain bread. We generally don't eat dessert when we eat at home.

A typical daily eating plan for me is:
>Breakfast: Black decaf coffee, oatmeal made with whole milk and a tablespoon of coconut oil with some berries.
>Lunch: Small roast beef sandwich, cup of Greek yogurt with fruit, and a banana (yogurt for the probiotics that bactrim kills and banana for potassium)
>Dinner: Tossed salad (or seasonal fresh salad), baked sweet potato with butter, meat.
>Evening snacks: Some nuts (I like salted cashews) or organic trail mix, a piece of fruit, occasionally some tortilla chips.
We eat out once or twice a week. In some restaurants we frequent, the meal is similar to home. In others, we indulge.


Meds: I just went off methotrexate and am in the midst of four infusions of rituximab. I'll be off mtx permanently. I've asked my rheumy about dropping folic acid as I was taking it to combat hair loss from mtx. (It worked) I'm down to 5 mg/day of prednisone, and will probably be able to go no lower than 3 mg/day (but I won't start tapering down until after my November appointment with my rheumy). I take bactrim three days a week. I also take flomax for urinary symptoms (had those before I got sick). I take 10 mg of loratadiene daily and 20 mg of phenylephrine daily to keep the sinuses clear. I take two calcium 600 mg + 800 mg vitamin D, a multivitamin, and an 81 mg aspirin daily.

The grandkids figure into the mix as I am the chief swing pusher and overseer of outdoor activities. We see them once or twice a week and generally have them for 4-5 hours (including their naps).

During the summer, I do all of my own gardening/landscaping. I hire the mowing on the advice of my pulmonologist who doesn't think the dust, mold, and pollen are good for me. I also try to get in 9 holds of golf weekly (walking and carrying my bag).

So that's what I do. Hope your docs can get you properly diagnosed, effectively treated, and back to a good life soon!

[annekat]

Gilders, I don't understand all the technicalities of your case, but I'm thrilled to hear that your kidney function has turned around, and also that Geoff visited you in the hospital! And big congrats to your grandson for getting into the school of his choice, and the scholarship!

[annekat]

Pete, you and your wife are a great example of how to live life and make the most of it with this crappy disease. I, for one, will never get tired of hearing about your regimen of healthful eating, exercise, and spending time with the grandkids.

[gilders]

And big congrats to your grandson for getting into the school of his choice, and the scholarship!

My grandson getting in to Uni really would be impressive! He's only 17 months:ohmy:
It's my 18 year old son that did well with his exams. I am only 37, although I suppose I'm a veteran when it comes to Wegener's, being diagnosed 20 years ago and still kicking it's butt when it rears it's ugly face:biggrin1:

[drz]

I would also agree that being in the trial is an unlikely cause of your difficulties but most likely it will get you some extra good attention since they surely don't want any causalities from their study groups. Best wishes for quick recovery.

[Birdie]

I, for one, will never get tired of hearing about your regimen of healthful eating, exercise, and spending time with the grandkids.

I could tell you about hanging out with 3 big birds? Andy, Eddie and Tyler. They are 15, 50+ and 31 years old.
:) :)

http://www.garyrin.com/birds/Birds.html

[Debbie C]

Gilders,so glad to hear that you are doing so much better and that you are home. Maybe Pete can lend you a few of his "spoons" until the fatigue gets better. I always thought you were older than 37,maybe its because you have suffered so long with this crap.
It is good news about your son....it would be better if it was your grandson, you'd have a genius on your hands !!! Take care,rest and hope you feel better soon.

[Alysia]

Thanks God you are getting better, gilders. I guess it took some time for the rtx to start working... its important to remember for those who will read this thread...
and I also asked my beautiful dr. Phil to help you from above, I bet he does. he already helped couple of weggies friends from his good place in the presence of God...
continue to get better and to update us.

[Geoff]

Hi Gilders,

Glad you got home safe and well, pity about the football result during the week, hope that didnt give you a relapse??!!

It appears that good news is on the horizon and hopefully some order of stability will come with it. Obviously you need to get some info on your platelets and get that sorted.

It was good to meet up with you in C5 and it brought back many memories for me, although i was in the ward above (they all look the same dont they!) Whenever you are back at Addenbrookes drop me a msg and perhaps we could catch up again. I am in on the 28th of this month.

Don't let the fatigue get you down, you just have to roll with the punches and wait for the RTX to kick in!!

[Pete]

Had my third infusion (of four) yesterday. All went well, but I experienced a new side effect last night - heartburn. I had a small gastric reflux about 10:30 last night and the heartburn started shortly after. Drank a little water, and it calmed down for awhile. However, I was restless (side effect from solumedrol) and didn't go to bed until nearly 2:00. Woke up at 4:30 and thought about what we might have in the house to relieve it. Found some peptobismol and took a couple of doses and that seems to have cleared things up. My usual side effects are mild fatigue the day after which I either push through (if necessary) or accommodate and the restlessness from the solumedrol. Other than these items, I've tolerated the drug pretty well.

I googled rituximab side effects, and these are listed, so I'm not concerned as long as the heartburn dissipates during the course of today.

[LCL2013]

Pete,

Sorry to hear you suffered some slight side effects. Hopefully that heartburn fades completely today.

I'm at work now after my last infusion this morning. I guess it's just wait and see now? I haven't had any bloodwork done in more than 6 weeks so I may do that tomorrow. Anyone know how long it will be before they tell me I can start reducing the prednisone?

[Birdie]

Had my third infusion (of four) yesterday.

So Pete, help me out here as I try to understand. What's the goal/expectation of the treatment? Oh no, I'm not just just asking the obvious, as in remission. You finish the four infusions with no more issues than this one... then what? Tap your toe for six months of blood tests to get an idea of how well it did it's job? Guessing of course. Is there something solid to use as an indicator?

Hope for the best for you,
Gary

[Pete]

So Pete, help me out here as I try to understand. What's the goal/expectation of the treatment? Oh no, I'm not just just asking the obvious, as in remission. You finish the four infusions with no more issues than this one... then what? Tap your toe for six months of blood tests to get an idea of how well it did it's job? Guessing of course. Is there something solid to use as an indicator?

Hope for the best for you,
Gary

Thanks Gary,

For me, the real goal is to be symptom free with no side effects. I've been fortunate to lead a very high quality of life with this dumb disease for most of the four years since dx. I want to keep that. However, for the past several months, even though I was on the minimum effective dose of mtx (15 mg/wk), I was wiped out for a couple of days after taking it. I could push through it if I really needed to, but I just didn't like the way I felt. Toward the end, I had tapered down to 3 mg of pred when I also started having symptoms (roaming joint pain, but especially in my hips). I upped the pred back to 5 mg. I also contacted my rheumy at Cleveland who decided to put me on rtx. I had a good experience with it when I had two doses in October 2013 - only very mild fatigue the day after. The new side effect was a bit of a surprise, but it's gone now. I'll just watch what I eat after the next one (less acidic foods).

For me, the key indicators are feeling well and maintaining a high quality of active life, and labs that show no disease activity - low sed rate and CRP and creatinine within normal limits (mine is just a little above the top of the normal range). I have labs monthly - CBC, metabolic panel, sed rate, CRP, and urinalysis.

[annekat]

My grandson getting in to Uni really would be impressive! He's only 17 months:ohmy:
It's my 18 year old son that did well with his exams. I am only 37, although I suppose I'm a veteran when it comes to Wegener's, being diagnosed 20 years ago and still kicking it's butt when it rears it's ugly face:biggrin1: Oops, well, congrats to your son, then! And you are pretty young to have a grandson, but it is all good! :smile1:

[Birdie]

For me, the key indicators are feeling well and maintaining a high quality of active life, and labs that show no disease activity - low sed rate and CRP and creatinine within normal limits (mine is just a little above the top of the normal range). I have labs monthly - CBC, metabolic panel, sed rate, CRP, and urinalysis.

So no single indicator that it's done it's job. Shown by not going backwards and maybe (fingers crossed) some improvement.

I'm trying to figure out how to get off 150mg Azathioprine and 5mg Prednisone. Before meeting you'all I had no idea it was possible without risk of almost immediate relapse. I don't want that. Really, it would suck. It was far to difficult to get where I am.

Thanks

[Jaha]

Gilders,
I am so happy to hear that your kidneys are improving, that's wonderful news! I didn't realize how young you are either. Congrats on your son's grades. I guess I was a bit confused ( which I get a lot of) concerning the trial being kind of questionable, with all the other issues you have. I'm sorry that I assumed that it might have added to your issues. You seem to have a very positive attitude about things, considering how long you have had to deal with this ugly disease. I am wishing you all the best and that things keep looking up for you. We are all at different stages in our journeys and any victories mean so much to all of us. Please take care of yourself and rest when you need to rest.

[gilders]

As some of you may recall, I am on the Ritazarem clinical trial and a couple of weeks ago I was randomised to continue with Rituximab as a maintenance therapy.

I received a larger dose than my previous 4 infusions (1000mg). I also had a bag of IV prednisolone which I wasn't expecting. All went well during the infusion, even the cannula didn't have any problems this time.

I had the usual fatigue during and immediately after the infusion, but this could be due to the IV anti-nausea and anti-histamines they give me, rather than Rituximab.

I have had a really bad August and September, but since this last Rituximab infusion, I've had 2 much improved weeks. Rituximab shouldn't work immediately and my kidney results have been deteriorating yet again. So I've no idea why I'm feeling a good bit better, just grateful!

I am due my next infusion in January.

[Alysia]

How much is your creatinine compared to before rtx ?

[annekat]

Good to hear from you, Gilders. Sorry to hear your kidney numbers are worse again, but so glad you are somehow feeling better anyway. No doubt the latest RTX will improve things again. It's great you got on that trial, as it shows how much it helps you. It seems that RTX may need to be an ongoing thing for you. Best to you, and continue to keep us updated!

[gilders]

How much is your creatinine compared to before rtx ?
Hi Alysia, hope you're well.
I'm not sure which measurements they use in Isreal for Creatinine, I know it's different in the US to UK. Here are my results, I've converted some (Hopefully correctly)-
Before my most recent relapse my creatine was hovering around 220 umol/L
During relapse it had been jumping around, but seemed to settle at about 250 umol/L (2.83 mg/dL)
I then had 4 RTX infusions at the end of June.
My creatinine rose and settled at about 270 umol/L.
It then rose to 300 umol/L around end July and spiked to 360 umol/L (4.07 mg/dL) just before I was due a kidney biopsy.
It then suddenly dropped to about 200 mid August. We had hoped it was Rtx doing it's magic, but seems like it was just an odd result.
It then settled around 265.
But my last test showed it had jumped back to just above 300.

So, it's a bit hard to answer your question until it's settled down. But it's roughly gone from 250 before Rtx to 300 at the last test.

[Alysia]

Thanks for sharing Pete. The numbers here are much the same but with a dot so the normal is 1.00 and below. I guess its 100 for you.
So your numbers are still high above the normal. I wonder why it jumps to 300.... ??
Sending my prayers and love ♡ please update us.

[Margaret_B]

Hello! I am a new member to this Forum. I appreciated this Thread very much. This is the first time I have had access to other people who have GPA. I am so happy I will be able to read your posts and share mine!

I was diagnosed with the disease in June of this year, following (4) months of mysterious symptoms such as swollen ankles, headaches, inflamed eyes (i.e. scleritis), and eventually, extreme fatigue, cough, coughing up blood, and severe off-and-on pain in my feet requiring me to use a wheelchair. I saw a general practitioner, a pulmonary doctor and a rheumatologist. None of them could diagnose me. However, the eye doctor I saw for the inflammation and pain in my eyes knew that I was dealing with an auto-immune illness. All the tests I was given by the other doctors kept turning up NOTHING. Why? Because they were looking for allergies, bacterial infections, TB, Rheumatoid Arthritis, Lupus or Lymes Disease! The eye doctor kept encouraging me to see a different rheumatologist she knew who was very skilled with making diagnoses in other patients she had who had undiagnosed auto-immune diseases.

On my 2nd visit with the new doctor, he diagnosed me with Wegener's (now re-named "Granulomatotis with Polyangiitis since Wegener was a Nazi). He had seen the disease before and put 2 and 2 together when he saw the CT Scan of my lungs (ground glass opacity) sent me for a test that identified the blood clot in my leg, and saw protein and blood in my urine test. The "lung" and kidney" connection made it very clear that it was the blood filtration systems in my body that were being attacked; a clear sign of GPA and Vasculitis. He sent me to the Johns Hopkins University Hospital in Baltimore, Maryland, that very day (the hospital is about an hour from where I live in Bethesda, Maryland. (NOTE: Clinical trials for use of Rituxamab were done at Johns Hopkins in 2011, and the nephrologist who treated me at Hopkins was involved with those clinical studies at the Hospital's Vasculitis Clinic. My new doctor knew that was the best place for me to be sent since the staff there was familiar with this otherwise rarely diagnosed disease.)

MEDICATIONS & TREATMENT. At Hopkins, I received outstanding treatment. Over the 18 days I spent there, I was given a kidney biopsy to confirm that I had GPA; (4) packed red blood cells transfusions over the course of (3) days because I was severely anemic from bleeding in my lungs and kidneys; a total of (7) Plasma-Pheresis exchanges during which my blood plasma was removed from my veins, separated from the other parts of my blood, and replaced with donated plasma (This "exchange" process removes the antibodies in my blood plasma that are attacking my own organs and replaces it with donors' plasma that does not have the antibodies in it. Google "Plasmapherisis" to learn more about this fascinating treatment that helped save my life!). Concurrently, on the first (3) days I was hospitalized, I received (1000 ml) of steroids per day to control the inflammation in my lungs and kidneys so they would stop bleeding out. After the (3) days of IV steroids, I was put on 60 mg a day by tablet. Then, I was given (3) infusions of 400 ml each Rituxamab, one week apart, using the same protocol described by our fellow member, gilders. I had NO bad reactions or after-effects, other than extreme fatigue, probably from the anti-histamine. My daily blood, urine and X-ray tests started to show immediate improvement!

OTHER TREATMENT. During my hospitalization, I was on oxygen because of my lung damage, intubated for (4) days because one of my lungs was punctured by mistake, had an IV Filter surgically placed in one of my main arteries in my leg to catch clots before they went to my lungs (I had a clot in my leg on the day I was admitted, and, because my lungs and kidneys were bleeding, I could not be put on blood thinners). I needed infusions of Potassium and fluids for dehydration every other day or so. When I was intubated, I had panic attacks because of the tube in my throat. The nursing staff was very prompt to give me an injection of Adivan (only .5 mg) every time I asked for one. That immediately helped me relax. After 4 days, I insisted the tube be taken out, against medical orders. That is another whole story but here I am, alive to talk about it!!!

REHAB. I participated in physical therapy and occupational therapy while in the hospital. I was the ONLY patient in ICU who insisted on getting out of bed and walking around the floor, even though I was very weak. I was determined to do all I could to get better and avoid going to a rehab center after my discharge. I had to have someone walk with me and push my oxygen tank around. I worked my way up to 10 laps on the floor and continued when taken out of ICU and put in a regular bed. I practiced blowing into an "incentive meter" to improve my lung capacity. I took lots of naps and ate very healthy meals, drank lots of water and restricted my visitors to only my husband and two adult children.

SINCE DISCHARGE. I have been home for 3 months. Between diagnosis and discharge, I lost 22 pounds and since coming home, put 14 pounds back on. I feel great and am very happy to be alive and living each day in the moment. I swim laps in my Condo's pool and recently worked up to walking two miles without stopping for a rest. I have had one additional infusion of Rituxamab, again, with no side effects. I developed steroid-induced high blood pressure and am on medication for that now. I have not developed diabetes, which I understand many people with GPA develop after being on steroids for a long time. I have no pain, sleep for 10 hours every night without interruption, and receive blood and urine tests every two weeks. My doctors call me after reviewing the results. They adjust my diet, medications, etc. accordingly. While I was still in the hospital, I called my employer and told her I was not coming back. I retired. Luckily, I turned 65 in July and had that option.

SINGLE CONCERN. I am in the process of tapering off the steroid. I am experiencing weird side-effects. I will start a new thread about this topic soon if I do not find a thread already started about tapering off steroids. I am really, really interested in hearing about other people's experiences because I am, quite frankly, afraid that tapering off of them will cause a huge flair and I will have a big set-back.

For now, goodnight! Good health to you all! margaret

[woz]

Glad you are feeling better Gilders, hope the Rituximab kicks in, and you feel even better, all the best.

Regards Woz....

[gilders]

Hello Margaret B and welcome!
It sounds like after some severe Wegener's activity you've responded well to treatment. I also think your positive attitude of getting out of bed and getting your body moving has also helped in your recovery.

As for your concern about steroids and tapering - everyone has their own opinion, but for me I always aim to reduced and eventually stop taking them. I was diagnosewd with WG just over 20 years ago so have now ended up with complications of long term steroid use. Therefore it has changed my view of being scared of reducing steroids in case of a relapse to being more concerned about the damage that they do. I have managed to have periods of remission whilst being "steroid free". I have had 4 relapses, each time has been whilst not having steroids. I am hopeful that when I eventually reduced my current steroids to zero, Rituximab infusions will keep wegener's in remmision without the need for steroids or other immune-suppressants such as Azathioprine.

I'm surprised you had potassium infusion with kidney involvement, I've been told to make sure I keep my potassium intake low due to renal failure (stage4-5).

By the way, we have a "New member introduction" thread. You might want to start a new thread there and copy your post to that area so everyone else can welcome you in case they miss it on this "Rituximab" thread.

All the best and keep us updated.

[Birdie]

SINGLE CONCERN. I am in the process of tapering off the steroid. I am experiencing weird side-effects. I will start a new thread about this topic soon if I do not find a thread already started about tapering off steroids. I am really, really interested in hearing about other people's experiences because I am, quite frankly, afraid that tapering off of them will cause a huge flair and I will have a big set-back.

First I'd like to say welcome and second... holy cow I wish I'd had that level of care. Just start a new thread, that's what the button is for.

When tapering prednisone you need to be constantly aware of your condition, every little pain, any changes anywhere, write down the changes to compare later. Don't be in a hurry, slow taper works. From 80 mg a day they had me drop in 20 mg increments. It did not work and several times I had to return to 80 mg until stable, then try & fail with the same reduction strategy. It took about a year to get off 80 mg per day.

I've been at 5 mg for a couple of years with no joint pain or inflamation, and nothing I'm certain is a Wegeners symptom. I have massive fatigue, far beyond anything I've heard anyone else describe. I attribute it to prednisone along with earthquakes and tornados since pred can cause so many issues. I finally got doctors approval to start prednisone reduction. I'll be reducing 1 mg at a time every few weeks. With luck I can get to one or none in four months, without any negative effect.

[Pete]

Hi Margaret,

Welcome to the "club". It seems you are getting first-rate care at JH.

I'll echo Gary's thoughts on pred tapers - slower is better. When I got off pred altogether, I tapered down from 10 mg at the rate of 1 mg/month. I did get to zero, but it only lasted a few months until symptoms started appearing again. Earlier this year, I got down to 3 mg/day again, and symptoms reappeared. I'm holding at 5 mg/day and doing well. I guess I'm ok with remaining on a low dose for the foreseeable future if I continue to be well as measured by my general sense of well-being and monthly labs.

[Debbie C]

Gilders ,hope the rtx kicks in soon and your numbers start to appear normal.Do be careful tapering the pred, you don't want o get sick again. Do keep us posted.


Margaret,welcome, unfortunately to the club ! Sounds like you are doing very well for just being dxed. But they did do a full treatment on you while in the hosp. Hope you continue to improve.

[gilders]

Gilders ,hope the rtx kicks in soon and your numbers start to appear normal.Do be careful tapering the pred, you don't want o get sick again
I've been on 7.5mg for a couple of weeks and I'm due to drop to 5mg on November 4th. My next drop after that isn't due until sometime next February, so I think I should be ok.:)

[Margaret_B]

THANKS Alysia, gilders, Birdie, Pete, Gary and Debra C. for responding to my post about Retuxamab -Medications. Your comments about Prednisone and tapering off of it really helped me! Before I read your comments, I posted a NEW THREAD under a title about Steroids. If you have the time to read the questions I included in my post, I would appreciate any other information you may want to add to what you already shared. From your comments I already KNOW I am going to INSIST that my doctor prescribe something for me other than the 20 mg. tablets I have now. I can cut them in 4 pieces (to get 5 mg doses) but I sure can't cut them any smaller than that with any accuracy! Thank you AGAIN for "being there" for me!

[Margaret_B]

Gilders,
Thanks for sharing about your remissions and relapses over the past 20 years that you have had GPA (I know most people on this site refer to it as "Wegener's", but I just cringe when I say or write the name since the guy, Wegener, was a Nazi who participated in medical experiments on human beings who were NOT voluntarily enrolled in a study! Would rather not immortalize his name by using it! Hope this comment is not so "political" that I get kicked off the Forum after only three days of being a member!).
First, BRAVO that you have learned to live with the illness for so many years! That inspires me!Second,I received Potassium in the hospital because my minerals were so messed up by the dehydration and bleeding that had happened in my body. But you are right; people like us with kidney disease due to GPA are usually put on low potassium diets. I am now on a LOW Potassium diet. Only prohibited food is bananas. A nutritionist (who accepted my insurance) gave me advice on serving size of other Potassium-rich foods. Instead of eating 1/2 of an avocado at a sitting, I eat 1/4. Instead of a whole orange, 1/2. Instead of 1 cup of oatmeal, 1/2 cup. Instead of lots of the greens and green vegetables I have eaten for years, eating only 1/2 cup servings of them and loading up on kale and cabbage when I want to eat a really big salad! Nice to know the nutritionist gave a thumbs up to foods I have avoided for years due to weight issues, like WHITE bread, WHITE rice, WHITE potatoes, WHITE noodles! Still, I should only be eating 1/2 cup servings of these foods, as well, but I AM enjoying eating them again after YEARS of eating whole grains, high-fiber foods, raw vegetables and fruits and lots of them. Most "Plant based" foods are high in Potassium.

The kidneys have to work very hard to filter out protein and cannot filter out potassium. So, I am also on a low protein diet.

For comparison's sake, my Creatinine tests every 2 weeks range between 1.11 and 1.25. I am diagnosed at Level 3a of Chronic Kidney Disease. If I can keep the strain off my kidneys by eating a low protein and low potassium diet, I hope it will help me forever avoid dialysis treatments.

Thanks for the warm welcome, everyone!~

[Treesie]

My nephrologist has me taking prescription potassium to help keep my levels in the normal range, even though I'm CKD 3. For some reason my body has trouble holding onto potassium and without the supplement my blood pressure starts to creep up.

I eat lots of veggies, bananas, drink coconut water every day and take my supplement. As long as I do this, I tend not to have much swelling and my blood pressure is around 115/75.

Even during my latest flare I've been able to keep my BP reasonably low. Only one more Rituxan infusion to go. Feeling better and my lab results are stabilized and a few readings are starting to head back into more normal ranges.

Went shopping on Tuesday afternoon after leaving the infusion lab. Only side effects are related to my sleep schedule, which always gets messed up by steroids. Either wide awake when I need to be sleeping or nodding off when I need to be alert. Make my husband drive when I'm like this!

Sent from my XT830C using Tapatalk

[Birdie]

I eat lots of veggies, bananas, drink coconut water every day and take my supplement. As long as I do this, I tend not to have much swelling and my blood pressure is around 115/75.

You are what you eat, so what's does coconut water make you? I've never heard of it so guessing it's like coconut milk, or is the same thing. What health value does it have?

[Treesie]

Coconut water is the juice inside of young coconuts. It is higher in potassium than bananas, lower in sugar, and has no fat. So, it isn't the same thing as coconut oil. Coconut oil is derived from the meat of more mature coconuts. You can find it in health food stores and even at Walmart.

Sent from my XT830C using Tapatalk

[Jaha]

Gilders,
So glad to hear you are feeling better, wishing you all the best with more improvement. Take care of yourself and keep us informed on your progress.

Margaret,
It sounds like you got the best of the best treatments and have recovered quite nicely. I'm glad you are doing so well and hope that your tapering of steroids works out well, just take it slow and easy. Welcome to the forum.

[Geoff]

Where's Sangye when you need her!!

Can we please keep on topic? This is Gilders thread good people.

[Bloom]

Hi everyone,

I am hoping to start rituximab, I think funding has been agreed. I have had IV cyclo- 8 infusions this year and methotrexate, neither of which have worked, I still have active disease and new stuff in my lungs.

I have to have a bronchoscopy beforehand and depending on that should start the rituximab. The last CT scan I had about 2 months ago showed evidence of infection as well as the other stuff (described as " tree in bud appearance", sounds nice though!) I am assuming the bronchoscopy is because of that. I had one last November, which didn't really show anything apart from bronchiectasis. I was tested for TB on two occasions last year, which was negative. I have had antibiotics and am on low dose Doxycycline.

Is this routine procedure, I am being treated in London? Also does anyone know if there is anything that would mean I couldn't have the rituximab.?

Best Wishes

Bloom.

[MaxD]

Bloom,

Here's hoping the Rituximab works for you. Just so you know, it is far less toxic than the previous meds you were subjected to, with fewer side effects. It stays in the body for 6 months or more, and does take a while to work, a couple of months, so be patient. Most likely you will know it's done it job when the flow cytometry results show that your peripheral B cells have been depleted.
They always check for TB and Hepatitis before administering Rituximab. And, of course, you cannot take any live vaccines (flu vaccine is OK) until the doc says its OK to do so.

Is the bronchoscopy being done to rule out possible additional complications?

Good luck, and keep us informed of your progress.

[gilders]

Is this routine procedure, I am being treated in London? Also does anyone know if there is anything that would mean I couldn't have the rituximab.?


Hi Bloom,

The only thing that doesn't seem "routine procedure" is the lack of prednisolone (unless you didn't mention it, but had it)
Cyclo will usually be used first as it often works and is much less expensive.

The only thing I can think of that would prevent you having RTX is if you've ever had hepatitis b and the funding problems.

It has taken about 3 1/2 months for me to feel any improvement from my first RTX infusion, so don't be too concerned if it doesn't work immediately. I was beginning to get worried as I couldn't tolerate Cyclo and some other treatments weren't an option due to kidney failure. I began to think if RTX doesn't work for me, I'm out of options and domed. But I am now slowly improving.

[Bloom]

Hi Max,
Thanks for your advice. I haven't had hepatitis B and the bronchoscopy appears to be to rule out a treatable infection given the appearance of my CT scan.
Bloom.

[Bloom]

Hi Gilders,

Thanks for your advice. I'm glad you're feeling better now. I have been on prednisolone since December 2014. I am now on 10mgs daily. I feel pretty despondent about any treatment working. Wegs doesn't seem to have affected my kidneys, although sometimes I do have blood in my urine but I suspect this is just bladder irritation from cyclo and methotrexate.

I am thinking about stopping treatment, I have been told quite clearly that life expectancy without treatment is poor, although I guess most of us know that. I feel though, that if treatment hasn't worked and the side effects are not good, I'm not sure about continuing. Steroids are reducing my bone density, I have severe osteoporosis. I hope to get to Australia to see my grandchildren next month.

I have this theory that the only result of treatment is that the Wegs is getting stronger, not rational I know!

Bloom

[gilders]

I really wouldn't stop the treatment. I know that being on treatment since Dec 2014 seems a long time, but with Wegener's improvements can be very slow. My most recent relapse began in Oct 2012 and I am still on Pred and Rtx after a long period on Azathioprine. I think I'm heading in the right direction now, but wouldn't like to think where I'd be at if I hadn't had any treatment.

[Birdie]

I feel pretty despondent about any treatment working. Wegs doesn't seem to have affected my kidneys, although sometimes I do have blood in my urine but I suspect this is just bladder irritation from cyclo and methotrexate.

I am thinking about stopping treatment, I have been told quite clearly that life expectancy without treatment is poor, although I guess most of us know that. I feel though, that if treatment hasn't worked and the side effects are not good, I'm not sure about continuing. Steroids are reducing my bone density, I have severe osteoporosis.

What makes you feel the treatment is not working? Sure there are side effects but the side effects are not so bad considering the alternative of letting Wegener's run it's natural course. For me, that would have been only a few more months, three and a half years ago.

I'd be more concerned about the blood in urine issue. First hand/severe experience tells me that "bladder irritation" is putting it far too mildly. I did a year and a half of 150 mg cyclo, a year after switching to Aza the bladder issue caused by the cyclo was very nearly the last straw for me. I suggest taking the issue very seriously, get medical attention directed that way as soon as you can.

[Jaha]

Bloom, I have been where you are at. I have taken every tx there is and RTX 7 TXs, it seemed like nothing was working. I have had a lot of complications from all of it. I dropped taking Cellcept daily and I'm now just doing the RTX every 6mos, along with Preds, Bactrium (3 times a week) and all the supplements. At first when I did RTX, they always kept me on my daily chemo with it and I always ended up with infections and on antibiotics or in the hospital. It seems like this last RTX took awhile to kick in but I think I'm doing better with the Wegs. So what I'm saying is one size does not fit all and I think that some of the complications really throw us off with whether our txs are working or not. All the best to you, hang in there.

[drz]

Progress in treating Wegs is seldom a straight line but usually many ups and downs which is why we often refer to it as a roller coaster ride. Bad times can hang on for what seems endless and some times this ends with a loss of life as we have experienced the loss of several of our members. But usually the outcome of correct treatment is improvement and often results in a drug induced remission. A few lucky ones even attain and maintain a successful long term remission without any maintenance drugs. Without treatment decades ago the average life expectancy after discovery of Wegs was usually a few weeks or months at the most.

If your treatment does not seem to be working for you or if you are searching or hoping for a better outcome and faster progress it behooves you to consult with a recognized expert to see if there is a better course of treatment that might be more effective. Part of good treatment is also some concurrent counseling and information about your treatment plan to help you accept and deal with the uncertainty of any treatment and to provide encouragement to help you work toward improvement if possible or prepare for the alternative if necessary. Depression is often a typical side effect from having a chronic illness but that can also usually respond to proper treatment.

Have you discuss your feelings and concerns with a trusted health care provider?

[nagesh]

My son diagnosed in 2009 with involment of kidneys eyes joints and skin,was on 6 cyclo infussions followed with azoran, bactrim & pred fully off symptoms, in 2013 had a flare in eyes and kidneys anca positive treated with rituximab 1 gm X 2 infusions, then all the symptoms cleared, followed with maintenance of azoran,pred and bactrim.
recently his protein in urine started raising, no other symptoms with anca negetive doctors assumed it as flare so as to not to take risk recomended rituximab 1 gm X 2 and 6 weeks back it is given, now, after six weeks protein leakage further more gone up from 1800 mg to 5500 mg.
worried about kidneys, usually how long it takes for rituximab to work and how better it works for kidneys,
Rheumatologist and nephrologist asked to repeat urine tests again shall meeting the doctros tomorrow.
any inputs are welcome

[Pete]

Could be kidney involvement resulting from GPA. Could be something else. Ask your son's doctors to investigate other causes. Just because he has GPA doesn't mean he can't have something else...

[nagesh]

Thanks Pete

Point noted, They are planning for kidney biopsy.

[whatthewhat]

May I ask how old he is?

[nagesh]

Hi whatthewhat

He is 19 years old

[Mark76]

My son diagnosed in 2009 with involment of kidneys eyes joints and skin,was on 6 cyclo infussions followed with azoran, bactrim & pred fully off symptoms, in 2013 had a flare in eyes and kidneys anca positive treated with rituximab 1 gm X 2 infusions, then all the symptoms cleared, followed with maintenance of azoran,pred and bactrim.
recently his protein in urine started raising, no other symptoms with anca negetive doctors assumed it as flare so as to not to take risk recomended rituximab 1 gm X 2 and 6 weeks back it is given, now, after six weeks protein leakage further more gone up from 1800 mg to 5500 mg.
worried about kidneys, usually how long it takes for rituximab to work and how better it works for kidneys,
Rheumatologist and nephrologist asked to repeat urine tests again shall meeting the doctros tomorrow.
any inputs are welcome
Ritiximab works straight away but clinically can take up to 60 days to show improvement if this makes sense.

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[nagesh]

Thanks for the replies,
Rhuematologist advised to up the steroids to high dose considering it as a big flare, shall be meeting him again after two weeks with repeat lab tests.

[Mark76]

Good luck!!...heres a question related to rx and cyc...im on bactrim as a prophylaxis...how long do people tend to stay on this antibiotic? For life??

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[Pete]

Good luck!!...heres a question related to rx and cyc...im on bactrim as a prophylaxis...how long do people tend to stay on this antibiotic? For life??

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I've been on bactrim DS 3x weekly since diagnosis. Since it's prophylaxis for a contagious disease, I expect to take it indefinitely.

[Mark76]

Yeah i just would have thought that once your white blood cells were back to normal you wouldn't need it anymore and really only needed with the chemo drugs...but yeah my dr just said to me just keep taking it even though i had my last round of cyc and ritiximab for hopefully a while

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[annekat]

Yeah i just would have thought that once your white blood cells were back to normal you wouldn't need it anymore and really only needed with the chemo drugs...but yeah my dr just said to me just keep taking it even though i had my last round of cyc and ritiximab for hopefully a while

Sent from my SM-G900I using Tapatalk I don't take RTX but was on CTX and now have been on MTX for 4 years or so.... I expect to need Bactrim as long as I'm on an immunosuppressant, which as Pete says, may be indefinitely. In your case, if you won't be needing CTX and RTX again for awhile, I'd think you'd need to wait at least until the RTX is out of your system, since it is said to take 2 or more months, for most people, for it to show effectiveness on your immune system. If you're getting another infusion in 6 months, that's about when it would be wearing off, from what I've heard. If you're not getting another one, and your WBC count looks good, and you appear to be in med-free remission, I'd think you could stop the Bactrim. But I'm not a doctor..... and I could be wrong about the RTX and how it works. It seems to be a little different for everyone.

[Mark76]

All good points annekat..how u been anyway? Im ok...just wish my sinuses would clear which i think is causing my blocked ear and constant cough...its been 5 weeks since my first cyclophosphomide infusion so i would have thought they should start to clear by now???

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[annekat]

All good points annekat..how u been anyway? Im ok...just wish my sinuses would clear which i think is causing my blocked ear and constant cough...its been 5 weeks since my first cyclophosphomide infusion so i would have thought they should start to clear by now???

Sent from my SM-G900I using Tapatalk Yes, CTX works pretty fast, usually, and cleared up my lungs fast, but I was on the daily oral pills rather than infusions and don't know what the differences would be. My sinuses took longer to clear than my lungs, and I've heard that is a tendency, for the sinuses to drag on and on. That's very likely what's causing your blocked ear and cough. I have extensive damage to the ears, with permanent hearing loss, and extensive erosion of the sinus bones and other structures of the nasal cavity. There's an upside; without defined sinus pockets, there's no place for mucus to collect and harbor infections, and less mucus produced overall. It sounds like maybe they caught yours earlier than the 2.5 years I went through before dx. This would greatly reduce the chances of the kind of permanent damage I and others have had. And I've gotten off easier than some, for sure. Now, 5 years after dx, I'm doing pretty well, still on the meds, but symptoms are not a lot, though there is still fatigue and some residual symptoms from permanent damage. I hope your sinuses clear up soon, or at least improve a lot. :smile1:

[MaxD]

Good luck!!...heres a question related to rx and cyc...im on bactrim as a prophylaxis...how long do people tend to stay on this antibiotic? For life??

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Bactrim is generally taken as long as you're on prednisone. When I stopped taking prednisone, I was advised to stop taking Bactrim.

[gilders]

On another post Anne welcomed me back and said she was looking forward to an update on my health, so I thought I'd share it here on this topic I started last year.
Well, while the world around me seems to be turning to crap, fortunately, my long standing Wegeners flare is finally in remission. I am in more pain now (feet, knees, lower back), but it's to be expected with reduction in pred.
My kidneys took another hammering during this relapse, but have now stabilised, albeit on boarderline for dialysis.
My Aunt died in December and my mum is currently battling cancer and going through chemo. Mentally although I have been very upset since December (the reason I've stayed away from this forum) I have been coping. But my dog's ill health and the news on Thursday that I may have to put her to sleep on Tuesday has pushed me beyond coping. Don't get me wrong, I don't plan on doing anything stupid. I spent over 20 years battling Wegeners to give up now. I just wish my dog could tell me if she wanted to carry on battling or would rather rest in peace now.
This should be a happy time now that I'm back in remission. I appologise to anyone currently in a flare, who may think I'm not being appreciative about being in remission, as I am.

[annekat]

Thanks, Gilders. With all those unhappy things happening in your world, it's even more impressive that you are in remission, so congrats on that. Of course, your aunt, your mum, and your precious dog are more important than anything else going on right now, and no one would expect your being in remission to make you feel any better about those things. Just take good care of yourself and your loved ones at this difficult time.

[MikeG-2012]

On another post Anne welcomed me back and said she was looking forward to an update on my health, so I thought I'd share it here on this topic I started last year.
Well, while the world around me seems to be turning to crap, fortunately, my long standing Wegeners flare is finally in remission. I am in more pain now (feet, knees, lower back), but it's to be expected with reduction in pred.
My kidneys took another hammering during this relapse, but have now stabilized, albeit on borderline for dialysis.
My Aunt died in December and my mum is currently battling cancer and going through chemo. Mentally although I have been very upset since December (the reason I've stayed away from this forum) I have been coping. But my dog's ill health and the news on Thursday that I may have to put her to sleep on Tuesday has pushed me beyond coping. Don't get me wrong, I don't plan on doing anything stupid. I spent over 20 years battling Wegeners to give up now. I just wish my dog could tell me if she wanted to carry on battling or would rather rest in peace now. This should be a happy time now that I'm back in remission. I apologize to anyone currently in a flare, who may think I'm not being appreciative about being in remission, as I am.

Oh man Gilders. I've been there not so recently. I totally feel what you are going through. My extenuating circumstance was trying to find an assisted living facility for my wife's dad--one that I though would be worthy of taking care of him. I really struggling with getting him a good place--he's been my dad too for the past 26 years--longer than my parents.

Your dog will tell you. You will be able to see it in her eyes. Having just had to do that with our Lily, I completely understand how you feel, and believe me, you will miss her every day. But, we've learned to be strong people with this stupid disease, and I know that you can get through it! It will take time, but you will get through it.

Take care Gilders!!!!

[gilders]

Thanks Mike. I'm sat here reading and typing whilst she is sat with me. Can't bear the thought that I can see her and interact with her right this moment, but this time tomorrow she'll be gone (if we decide to euthanize her). I know once she's gone I'll think of loads of things I should have said or done with her during her last few days.
We've always gave her the best diet, but she loves food, so I've just got back from McDonald's with a small burger for her.

I'm not sure my "dog will tell me ". She's been unwell since the end of Feb, so logic tells me it's cruel to carry on. Perhaps it's more a case of me refusing to listen than her not telling me. She is now skin and bones, but her wooly coat disguises it well.

Sorry to hear about your struggles with finding suitable accommodation for your wife's dad. I have a similar situation with my Grandma. After a year of fighting for help with financing her nursing home costs, we finally got help (after my Aunt died in Dec and obviously couldn't contribute). Within 2 weeks of the nursing home agreeing to help out financially, she was placed in hospital under a "care order" as it was suspected that she had been neglected. She's now ready to leave hospital and we can't afford a different nursing home without financial help, but don't want her to return to a home where she was neglected.

Sorry to go off topic, so I'll add that Rituximab treatment still gets my seal of approval!

[Alysia]

On another post Anne welcomed me back and said she was looking forward to an update on my health, so I thought I'd share it here on this topic I started last year.
Well, while the world around me seems to be turning to crap, fortunately, my long standing Wegeners flare is finally in remission. I am in more pain now (feet, knees, lower back), but it's to be expected with reduction in pred.
My kidneys took another hammering during this relapse, but have now stabilised, albeit on boarderline for dialysis.
My Aunt died in December and my mum is currently battling cancer and going through chemo. Mentally although I have been very upset since December (the reason I've stayed away from this forum) I have been coping. But my dog's ill health and the news on Thursday that I may have to put her to sleep on Tuesday has pushed me beyond coping. Don't get me wrong, I don't plan on doing anything stupid. I spent over 20 years battling Wegeners to give up now. I just wish my dog could tell me if she wanted to carry on battling or would rather rest in peace now.
This should be a happy time now that I'm back in remission. I appologise to anyone currently in a flare, who may think I'm not being appreciative about being in remission, as I am.

Welcome back and thanks for sharing. Thanks God for your remission. Although life still demands a lot from you... Its tough to deal with it all, all at once but you are a vetteran. And I guess your mother is a good fighter, like you.
I am sorry for the loss of your aunt. May she rest in peace in the presence of God.
As for your pain - if you are back on a certain dose of pred - will you still have the pain ?
If I try to reduce pred under 5 mg I get crazy headaches and pains in joints and ears. So I dont try anymore. I guess I will be on it always.

[Jaha]

Gilders, I am so glad to hear about your remission. I am so sorry for all the other live stresses you are going through. Mike is right about your dear dog, she will let you know, and also you will know when it is time. It is so hard to make the decision and let go of such a dear friend.
It is never easy to deal with the emotional feelings of having a parent whom is so sick. I am sorry you are also having to go through that. I wish for you all the best with these terrible life stresses and that it doesn't way on your health.We are strong people, but sometimes enough is enough. Take care and it is good to hear from you.

[gilders]

Hi Alysia, my body doesn't cope well on higher doses of pred, I tend to get all the adverse side effects. Perhaps around 17 years of using them has made me more sensitive?
Plus the Ritazarem trial is strict on pred dose. I even have to return all the used pred pill packaging to show I've not missed a dose.

[Alysia]

Hi Alysia, my body doesn't cope well on higher doses of pred, I tend to get all the adverse side effects. Perhaps around 17 years of using them has made me more sensitive?
Plus the Ritazarem trial is strict on pred dose. I even have to return all the used pred pill packaging to show I've not missed a dose.

Well, I dont know if its a problem or a blessing that you cant have much pred... how much pred are you on ?

[gilders]

Well, I dont know if its a problem or a blessing that you cant have much pred... how much pred are you on ?
Just 5mg at the moment and foreseeable future.

Just started Allopurinol today, so that should help prevent gout. Just hope the interaction with Warfarin, Furosemide and Bisoprolol isn't too severe.

[gilders]

I started this topic about Rituximab after my first infusion about 15 months ago. I think it was my eighth infusion today.
It was the first time the cannula has worked from the start and through to the end, so that was great. As usual I was very tired and slept more than usual (maybe due to kidney funtion being worse than during previous infusions). I also felt nauseous after treatment had finished and then about 4 hours later once we'd reached home, but neither episode lasted long.
I was exremely ill after the last RTX infusion and my GP wanted to admit me in to hospital (I refused as I thought I'd be safer at home). I still think it was a virus. Today the specialist didn't think it would of been a virus as it took about 4 weeks to recover from, but also didn't think it was a reaction to RTX as previously I'd been well with it. He said if I have similar episode in the next few days they would not give me RTX again (Cyclophosphamide is a no go as I have bad reactions to that and Methotrexate would completely finish my kidneys off).
I have also started with nose bleeds and red crusty scabs and bogeys in my left nostril. He thinks it might be Wegener's activity. This worries me as the kidney transplant team won't assess me until I've been in remission for 18 months. With bleeding and bruising issues, it looks like I may not even be allowed a transplant anyway.

[gilders]

Another update as it's just after 01:30 and I can't sleep after my RTX earlier today. I'm quite awake due to bag of steroids they infused me with and which I'm used to, but I've got sharp pains and swelling in my stomach area.
I would still recommend Rituximab, but the fact that my kidneys have deteriorated further, I may be presently showing active Wegener's (bloody nose) and I may be reacting to the drug itself, as made my stamp of approval not so firm. Hopefully the tummy pain is just wind:blushing:. I've been watching what I've been eating the last 2 weeks, but after the IV steroids I needed to take a break on the 4 hour drive home and felt I deserved a reward, so burger, fries and milkshake it was. :wub:

[Jaha]

I am sorry that you are feeling so poorly after the infusion. You really did deserve that milkshake and burger. I am headed for my 9th infusion tx soon and every time I have one I have a reaction. They now give me IV Benadryl and afterwards I have to take 2 Tylenol and 2 Benadryl tabs every four hours, for up to 48 hours to calm my system down. I still have more down time then others, but I really think it works a bunch for me. Wishing you all the best, keep us informed on your progress and take care of yourself.

[Alysia]

I am sorry gilders.. I hope you got some rest & relief after all. Wouldnt it be better to still get rtx even if you have some reactions ? I read on another thread that your alternative is cellcept ? Is it as strong as rtx ? Are you on some pred ? Maybe it can also help to keep you in the remission zone ? Hang in there. Keeping you in my prayers ♡

Jana, can you please share what are your reactions to rtx and how long they last ?

[Debbie C]

Gilders,sorry to hear that you are not doing to well after the infusion. I had to chuckle when you said that last time you thought you would be better off at home then in the hosp. You are probably right there ! Maybe the burgers,fries and shake is what has your stomach all rattled. I know after bendging on carbs last weekend my stomach is still screaming at me. I know I bruise and bleed easily from the pred,could that be why you are and if that is the case why would they not consider you for a transplant. Hopefully the rtx will kick in quickly and put you in remission. Saying a prayer for you that you will be feeling better soon and there is some improvement to your kidneys. Rest up and take care :hug2:Keep us posted also

[gilders]

Just realised my last post was a fairly negative one post rtx infusion. I wanted to reassure people that rtx is overall a good treatment and soon after my last post I was back to normal (well, my normal).
Been very busy with purchasing new home. I love my current home, but it's not going to be suitable if my health deteriorates and when I'm on dialysis. My sister has loaned me the money and I now need to sell my current home quickly, but for as much as possible so that I can start to pay my sister back. So I've been de cluttering and getting the house in tip top shape. I'm absolutely exhausted and the house it looking so good I'll really miss it. It's the first house me and my wife bought together and which our kids grew up in, so we're quite attached to it.

[annekat]

Just realised my last post was a fairly negative one post rtx infusion. I wanted to reassure people that rtx is overall a good treatment and soon after my last post I was back to normal (well, my normal).
Been very busy with purchasing new home. I love my current home, but it's not going to be suitable if my health deteriorates and when I'm on dialysis. My sister has loaned me the money and I now need to sell my current home quickly, but for as much as possible so that I can start to pay my sister back. So I've been de cluttering and getting the house in tip top shape. I'm absolutely exhausted and the house it looking so good I'll really miss it. It's the first house me and my wife bought together and which our kids grew up in, so we're quite attached to it. I'm sorry you had to give up the home that you love, and hope you'll become attached to the new one in time. I'm glad to hear you are back to "normal" since the last post.

[Alysia]

I am sorry, Pete, that you have to sell your house and move. I hope the new house will bring new joys and more comfortable environment. How are your kidneys so far ?

[Jaha]

Pete,
I'm glad that you got along good after your infusions. Enjoy your new place and don't work to hard trying to sale the old one. Please take good care not to stress about the move, it will be the best thing in the long run. Take care of yourself!

[Pete]

I had my infusion on Monday. In general, I feel pretty well. The treatment was 1 gm of rituximab in 300 ml of saline. Got 125 ml of solu medrol, 25 mg of Benadryl, and 325 mg of Tylenol. I took a brief nap about halfway through. Afterward, I had a substantial lunch of German food. As Monday evening wore on, I felt tired, but not sleepy. I went to bed (first time) at midnight (usual bed time) and tossed until about 1:15. Got up, took 1000 mg Tylenol and went back to bed at 2:30. Got up at 7:00.

Tuesday, I felt almost normal, but not overly energetic. I slept almost 8 hours last night.

Today, I feel normal, but still a little tired. I'm going to take a walk in a little while to get the blood moving again.

All in all, my experience with rituximab has been good. What I described above has been typical for me.

[Alysia]

gilders how are you doing ?

[gilders]

Hi Alysia and all,
I'm doing well thank you. The kidney transplant process is taking such a long time, but at least my kidney function is remaining stable at around 16%.
I've been so busy getting our house in shape ready to put on sale (it actually went on sale 2 days ago). But nothing seems to run smoothly and there is a slight issue with some paper work not being completed for the ensuite bathroom conversion at the new house and our boiler breaking down at our current house. :predrage: I've had no time to visit the forum.
I've surprised myself with the amount of DIY work and general tidying that I've managed to do. I am completely worn out, but at least I can see a reason for it (I'm actually doing more exercise). I just wish that I had a few minutes in the day where I felt like I had just a little bit of energy, but I guess that won't happen until I get my new kidney (or give in and go on dialysis). But at least I'm managing to fight through the tiredness and get jobs done.

[Pete]

Hey Pete, I understand how much work it is to get a house ready for sale. I was pretty tired from that even when I was healthy. Here's wishing you a quick sale at a top dollar price!!

[Alysia]

Thanks for the update gilders. Thanks God that your kidneys are stable and that you can be active enough. Sounds good. Hang in there. Easier days will come soon. Keeping you in my prayers.