PDA

View Full Version : Rituximab Round Four



Sangye
05-17-2011, 12:30 PM
I start another round of rtx tomorrow but I'm not looking forward to it. I just hope it works this time. I'm in awful shape right now and feel like my lungs are becoming more inflamed each day. I wish the rtx didn't completely flatten me for 6 weeks like it does. You guys who tolerate it well (and even have quick relief of Wegs symptoms!) are luckier than you can possibly know. It takes every ounce of courage I have to walk in that infusion clinic knowing how I'll feel within an hour, much less the coming weeks.

Well, it's 10:30 and I have to be up by 5:30. Goodnight all, I'll let you know how it goes tomorrow.

gurinbasra
05-17-2011, 01:04 PM
Sangye, I do feel for you because I am one of those who does well and I pretty much had my first two when you did and yes, I am grateful that I feel mostly normal with only two infusions. Be strong enough just to get youself through it and I'll be sending some good strong vibes your way. I hope this one works for you! It's been hard reading about how you're still struggling and it's about time you got a break. Finger and toes and everything else is crossed - good luck.

vdub
05-17-2011, 01:19 PM
Best of luck! Keep your computer handy and let us know how things go....

Deanne Hull
05-17-2011, 01:36 PM
Best Wishes

Thakator
05-17-2011, 02:34 PM
Sangye,
May you find unexpected peace on this day of dread. And kudos to you for boldly going forth to meet it. Ron

kulharv
05-17-2011, 04:26 PM
b est of luck sangye!

Geoff
05-17-2011, 06:35 PM
Good Luck Sangye, fingers crossed for a better reaction and long term stability.

Chris G
05-17-2011, 10:19 PM
Be strong Sangye. I'm sending you good vibes today......and a hug:hug1:

mishb
05-17-2011, 11:38 PM
Good luck for round 4 Sangye. I hope all goes well for you...maybe this one will be the one.
One small step in front of the other, slow and steady.......you are going to win.

Keep smiling
Michelle

Brooke
05-18-2011, 02:48 AM
Good luck today Sangye!! Try and hang in there and hopefully this round of infusions will do the trick!!

Fran
05-18-2011, 02:49 AM
Hi Sangye.

Hoping for good things this time around - you surely deserve it !!

Best wishes Fran x

Sangye
05-18-2011, 06:29 AM
Thanks everyone-- very nice to come home to such kind posts! I just got home and it's doing its usual thing. I feel like death warmed over. Gonna go lay down. I might check in again tonight. Thanks again. :smile1:

mama2005
05-18-2011, 07:08 AM
I hope it went well and works faster for ya

Chris G
05-18-2011, 07:27 AM
Thanks everyone-- very nice to come home to such kind posts! I just got home and it's doing its usual thing. I feel like death warmed over. Gonna go lay down. I might check in again tonight. Thanks again. :smile1:

Damn. I'm sorry it's kicking your butt again. Isn't there SOMETHING they can give you that will help with the side effects?

Look to the future & keep your chin up as best you can. The Dhali Lama awaits your visit! :biggrin1:

pberggren1
05-18-2011, 07:53 AM
I prefer death cooled over. :w00t:

Widthofacircle
05-18-2011, 07:58 AM
Best of luck Sangye. Hope all goes well

Barbara1966
05-18-2011, 08:58 AM
Stay strong, sending you all my prayers and love.

Daggar
05-18-2011, 09:54 AM
Don't be long S... you're needed!:wink1:

elephant
05-18-2011, 10:21 AM
Take care of yourself Sangye! Have a nice rest and come back when your ready!

Sangye
05-18-2011, 10:25 AM
Damn. I'm sorry it's kicking your butt again. Isn't there SOMETHING they can give you that will help with the side effects?

Look to the future & keep your chin up as best you can. The Dhali Lama awaits your visit! :biggrin1:
Dr Seo thinks it has to do with how it's made--nothing to do about it. I also get bad side effects from the high dose pred. It increases my intracranial pressure. Very unpleasant, I gotta say.

I'm so looking forward to the Dalai Lama's teachings. I thought it was only one day (which is incredible in itself) but it's actually 10. Ho boy, I hope I'm in good shape by then.

Sangye
05-18-2011, 10:44 AM
I got some info from the JHU infusion clinic nurses today about the dosing and administration of rtx. The clinic is very conservative about how they administer rtx so they have a low rate of allergic reactions.

The 2-infusion protocol: 1,000mg of rtx each infusion for every patient (ie, not based on height/ weight).
The 4-infusion protocol: Dose is 375mg/m2 per infusion, so the actual dose you receive is calculated based on your height and weight.

I'm pretty fat, so on the 4-infusion protocol I get 900mg of rtx each infusion (total 3,600mg). That's a lot more rtx than I got on the 2-infusion protocol (2,000mg) and is probably why it didn't work for me. It makes me wonder if "larger" people need the 4-infusions but smaller people do okay with 2. A smaller person would receive similar doses using either protocol. I'll definitely ask Dr Seo if he's seen that trend.

The nurses also told me:
--The rtx (at any dose) should be given in a 500 ml bag of saline. Some infusion centers are using 250ml to speed up the infusion, but this is too fast and makes it more likely to have a reaction to the rtx. The nurses said the studies used 500 ml of saline.

-- Appropriate "pre-meds" need to be given to all patients--solumedrol and Benadryl. I get 100mg solumedrol. Some of their patients even get 150mg. They now give the solumedrol and Benadryl and wait 30 min before starting the rtx. This has decreased allergic reactions.

Rtx is a genetically-engineered antibody. The pre-meds work by sort of hiding the rtx from your immune system so it can go in unnoticed. You don't want to form antibodies to those antibodies or you'll be unable to take more rtx.

Kathie28
05-18-2011, 11:36 AM
Hang in there Sangye. I sure hope the 4 infusions is the answer for you. I can only imagine how hard it is to go in for a treatment that you know is going to make you miserable.

marta
05-18-2011, 12:30 PM
Sangye, I've been thinking about you all day today. I hope that the grosseness goes away faster this time and you don't have to go through this exercise for a long long time. Take care of yourself, pamper your sick little body and keep that wonderful spirit alive and kicking as it always does. Be healthy! Lots of love and healing vibes coming your way across the continent.

flana
05-18-2011, 01:04 PM
Wishing you a speedy recovery Sangye... I just heard of someone who took rtx and is now doing very well indeed... you will do too... you'll be in my prayers tonight...

Daggar
05-18-2011, 02:42 PM
Ah hah, I knew you'd be back ... the "needed" comment earlier was to keep that fire lit (the chiro/professional side)

Now get some "needed" R&R ... hope you can get a good night sleep!

pberggren1
05-18-2011, 02:44 PM
Thanks again for the good info Sangye. How on earth are you going to be able to do 10 days with the Dali Lama?

Brooke
05-18-2011, 11:19 PM
Thanks for the info Sangye and I hope you get to feeling better soon.
My doc at Mayo had me do the solumedrol the first infusion this time but the other 3, I didn't receive it. Just the tylenol and benedryl.....

Sangye
05-19-2011, 01:13 AM
Thanks you guys. :smile1:

Marta, I've got to do rtx every 6 months indefinitely. Oy, I don't even wanna think about it!

Raj, yup this is my 4th round of rtx. The first two worked well. Both were needed to fully put out a severe flare. I'm hoping this one gets things under control.

Daggar, ha! You know me too well. Even when I was laying down I was reviewing and organizing the info from the nurses in my head so I could share it.

Phil, I dunno. I'll do my best. There is tremendous blessing in making the attempt, and it often clears the obstacles. I've had that happen twice with the Dalai Lama and many times with my own lama and other lamas. It's very rare to be able to receive teachings and blessings like this--worth any added exhaustion or whatever.

Brooke, yikes. I think that's taking a very big and unnecessary risk. Even though I've never had even the slightest allergic reaction to rtx, Dr Seo and the infusion clinic would never treat me without solumedrol on board. Each time you receive it (even with pre-meds) you are more likely to become allergic to it. Unless you're already on very high dose pred, having solumedrol seems to be necessary.

Brooke
05-19-2011, 02:09 AM
Each time you receive Rituxan, you are more likely to become allergic to it?
I will have to ask my Mayo doc, I am not sure why I just received for the first one.
Does the pred or solumedrol have something to do with someone having a reaction? - Or is it like you stated above, it hides the Rituxan from your immune system?
I havent been on pred since last year, I wonder if that has something to do with it.

Sangye
05-19-2011, 02:31 AM
Yes, each time your body is exposed to rtx it's more likely to figure it out and become allergic to it. This is true of any of the biological drugs. The body has to be fooled into accepting them. However, it isn't a given that someone will eventually develop an allergy to rtx. It's just that you want to do everything to lower the chances.

Since you're not on any pred (yay!) that would make it more necessary to have solumedrol with the rtx. The solumedrol is what hides the rtx from your immune system, along with Benadryl. Dr Seo told me he'd never go lower than 80mg solumedrol.

Brooke
05-19-2011, 02:43 AM
I have my follow up at Mayo the end of this summer, I will have to ask her about this.

Sangye
05-19-2011, 02:46 AM
It'll be good to have the extra info from another Wegs doc. I see Dr Seo in June or July and will ask him, too. Since rtx is being used much more he might have new info.

Chris G
05-19-2011, 02:48 AM
So Sangye - you're back on the board tending to all of our needs :mellow:, but how are you feeling today?????

Sangye
05-19-2011, 03:07 AM
LOL I feel pretty lousy but better than yesterday. Every time I get my hopes up but this is the usual pattern-- feel like death on treatment day, next day not as bad, then 2 days after treatment everything goes downhill. I'm still really weak today and have shuddering chills. My face is hot, hot, hot and I don't mean good-looking. :rolleyes1:

jane
05-19-2011, 05:53 AM
Hi,
am off for my next dose of Rit. on Friday. have to say it has been a miracle for me but I have to gut out the 6 weeks of feeling rubbish in order to get my life back. I find that once it kicks in I am mostly free from the worst symptoms - coughing, aches, sinus probs, backache, colitis etc. Thinking of you and just remember we are lucky to have this treatment. xx Jane

NicShaf
05-19-2011, 06:44 AM
Hope you're feeling better, Sangye.

Sangye
05-19-2011, 07:07 AM
Jane, you are one of a small percentage of people who also has this negative reaction to rtx for 6 weeks. I might be in more of a celebratory mood if I could actually get my life back in between treatments!

Brooke
05-20-2011, 01:59 AM
Hi Sangye, I cant remember if I have asked you this before. If your B-Cells are gone from your first Rituxan Infusion, why would they do another round so quickly? It obviously must do something if they would do it so soon. My doc said I would do the Rituxan again once my B-Cells came back. I suppose if I was having major issues between rounds, they would do something....

Sangye
05-20-2011, 02:13 AM
It's a good question. In my case it seems that I start to get symptoms of active Wegs a few months before the B cells repopulate. I don't know if it's theory or if it's been proven, but I've read that not all the B cells are destroyed with rtx--that some actually hide in the body. I'll ask Dr Seo about this at my next appt.

When I did my first round of rtx, I was in a severe flare with alveolar hemorrhaging. It stopped the hemorrhaging but a number of other symptoms continued. We repeated it within 5 months which got things fully under control for the first time in 4 years. Likewise, in February the 2 infusions made my lungs feel better but everything else continued to be a problem. It might have been enough rtx to zero out my B cells on paper, but it wasn't enough to control the Wegs.

ScreaminMeanie
05-24-2011, 05:18 AM
I hope you are feeling better today, Sangye.

Sangye
05-24-2011, 06:27 AM
Not yet, but thank you. Tomorrow is the 2nd infusion. Oy.

Brooke
05-25-2011, 04:02 AM
Good luck today Sangye!!

Lightwarrior
05-25-2011, 08:51 AM
Not yet, but thank you. Tomorrow is the 2nd infusion. Oy.

Strong legs, strong legs, strong legs, light, light, light, warmth, warmth, warmth, energy, energy, energy, no nausea, no nausea, no nausea. Home with comfortable sleep, home with comfortable sleep, home with comfortable sleep.

Remember the movie Beetle juice, with Alec Baldwin, Geena Davis and Michael Keeton and if they called his name 3 times (beetlejuice) he would appear. I'm trying to use that philosophy to influence the way you feel after your infusion today.

ScreaminMeanie
05-25-2011, 10:22 AM
Strong legs, strong legs, strong legs, light, light, light, warmth, warmth, warmth, energy, energy, energy, no nausea, no nausea, no nausea. Home with comfortable sleep, home with comfortable sleep, home with comfortable sleep. Wegs into remission, Wegs into remission, Wegs into remission.

Repeated, with addition!

elephant
05-25-2011, 10:55 AM
Wish you luck tomorrow. Hope tomorrow brings you more energy.

Sangye
05-25-2011, 01:13 PM
LOL Thanks you guys. Made me giggle to think of Beetlejuice.

I'm feeling worse than last week--the infusions have a cumulative effect like that. I didn't sleep at all last night but the Benadryl today knocked me out pretty well for a few hours during the infusion. That was good because the IV was like a toothache the whole time. No choice with my lousy veins. Gonna call it a night.

vdub
05-25-2011, 01:24 PM
Speaking of teeth, my gums have been very sore and kind of falling apart. Apparently a known side-effect, but certainly irritating....

Good luck, Sangye!

pberggren1
05-25-2011, 04:21 PM
Speaking of teeth, my gums have been very sore and kind of falling apart. Apparently a known side-effect, but certainly irritating....

Good luck, Sangye!

That does not sound good for sure. Have you talked to Jane on the Forum here about this vdub? Does your doc know about this?

Sangye
05-26-2011, 01:27 AM
vdub, you mean a side effect of rtx? Haven't heard that one.

vdub
05-26-2011, 05:20 AM
I'm not sure what drug it is, but it's not rtx. I intend to ask the doc about it June. <long pause> I just looked it up -- it's the testosterone.... Oh well....

Sangye
05-26-2011, 05:34 AM
I was going to say it sounded like a hormone side effect. Ugh, so sorry. :sad:

Sangye
05-28-2011, 12:40 AM
Well, on top of having the rtx mack truck solidly parked on top of me, I now also have a cold. I had my 2nd (of 4) infusion Tuesday and in the middle of the night got a sore throat. (I knew it wasn't a rtx reaction because there was a little pus pocket on my tonsils. I also had been exposed to a cold on Sunday.)

Man, I can't believe how utterly drained I am. This morning is the worst-- I can barely make it around my little basement. I hope it clears up quickly. I'm gonna email Dr Seo and ask if I can still do the next infusion on Tuesday if the cold is hanging on by then. That's 5 days away, so I'm hoping it'll be gone. On top of feeling super lousy, I'm pretty upset that this might interrupt the timing of the infusions. If I had the energy, I might actually growl.

ScreaminMeanie
05-28-2011, 12:48 AM
Oh no. I dread the thought of catching anything while I'm immune suppressed. I did twice while I was on cytoxan, and it resulted in two hospital stays. :(

Sending you all my best healing thoughts and prayers so you can stay on your infusion schedule.

vdub
05-28-2011, 01:26 AM
I just got back from the doc.... I wasn't sure what I had, but was hoping it was allergies. Lungs are congested and developing a cough. He gave me an rx for antibiotics, but I'm not going to use it unless I really need to. My main reason for going to the doc was to make sure I wasn't starting something more serious. I'm still pretty gun-shy.

The mtx is kicking my butt today.... really achey and I'm certain Sangye has it 3 times as bad. Just no darned fun....

Sangye
05-28-2011, 01:32 AM
Just heard back from Dr Seo. He said even if I still have a cold on Tuesday I can get the next infusion--that after 2 infusions it won't make a difference (meaning the 3rd won't be that much more immune-suppressing). The only caveat was if the cold turned into pneumonia-- then no rtx of course.

Sangye
05-28-2011, 01:37 AM
I just got back from the doc.... I wasn't sure what I had, but was hoping it was allergies. Lungs are congested and developing a cough. He gave me an rx for antibiotics, but I'm not going to use it unless I really need to. My main reason for going to the doc was to make sure I wasn't starting something more serious. I'm still pretty gun-shy.

The mtx is kicking my butt today.... really achey and I'm certain Sangye has it 3 times as bad. Just no darned fun....
Oh no, vdub that doesn't sound good. When did you start the mtx? I'm concerned that could be an allergic reaction to it-- pneumonitis. It acts exactly like a chest cold or pneumonia.

If you get at all worse, I suggest you get a chest x-ray before starting antibiotics. Pneumonitis looks like "atypical" pneumonia on a chest x-ray. It's a well-known reaction to mtx but is often misdiagnosed as pneumonia or bronchitis. Been there, done that. Just keep an eye on things, okay?

vdub
05-28-2011, 01:42 AM
I'm sure glad I'm on this forum! I'll keep an eye on it. I've been on the mtx for 14 months. 15mg for 10 months, then bounced up to 25mg for the past 4 months.

I will definitly watch it....

BrianR
05-28-2011, 03:35 AM
vdub & Sangye.

Take care of yourselves and I hope things improve soon. I am not immune suppressed and still have cold symptoms after 3 weeks! Marta sounds like aunt Selma from the Simpsons and so far her chest is not getting any worse. She is under Drs orders that if she feels any worse at all she is to go to emerg and have a chest X-ray immediately. I ask her about 15 times a day if her chest feels the same, better or worse. I'm a nervous nag!!

Daggar
05-28-2011, 03:51 AM
Sorry to hear Marta has that cold..... seems to be going around in AB.

That's a pretty helpless feeling and even though you know it may be irritating to them you have to ask the same questions over and over to make sure you can respond quickly if it is more serious.

That went away for awhile but since Holly's taper from pred and the upcoming switch in meds I find myself doing it more and more.

Give her our greetings and best wishes!

Vdub - Sangaye - wow.... I've always thought of "tough" in a completely different way -- you, and many on here (incl Holly), have redefined the meaning of that word for me.

pberggren1
05-28-2011, 05:12 AM
Vdub - Sangaye - wow.... I've always thought of "tough" in a completely different way -- you, and many on here (incl Holly), have redefined the meaning of that word for me.

Don't forget about Batman!

drz
05-28-2011, 05:23 AM
I feel sorry for those of you suffering right now. Other people may think a cold is no big deal but when your immune system is shot it can be life threatening. My last cold turned into several infections and which caused a flare in the GPA and several weeks of misery and additional treatment. During that time there was also the fear I might get pneumonia along with the other infections.

I am glad you are all trying to take care of yourself and thank those who are watching over you and nagging you to be sure you are OK and not needing any more treatment. Things can change quickly as you all know so it pays to be vigilant. Hope every one gets better soon.

Daggar
05-28-2011, 05:34 AM
Don't forget about Batman!


oooops!! And Batman!!

Where did that handle come from?

pberggren1
05-28-2011, 09:25 AM
oooops!! And Batman!!

Where did that handle come from?

Long story. I had to deal with someone once like Batman would.

Rini
05-28-2011, 10:06 AM
Just heard back from Dr Seo. He said even if I still have a cold on Tuesday I can get the next infusion--that after 2 infusions it won't make a difference (meaning the 3rd won't be that much more immune-suppressing). The only caveat was if the cold turned into pneumonia-- then no rtx of course.


I wish you the best and hope it all passes quickly

Sangye
05-28-2011, 12:21 PM
Long story. I had to deal with someone once like Batman would.
I still laugh when I think of the story. It was priceless.

pberggren1
05-28-2011, 04:35 PM
I still laugh when I think of the story. It was priceless.

Just don't piss me off and you wont have to worry about being hung from a bridge.

Sangye
05-29-2011, 12:28 AM
LOL That's right. And you men out there better behave yourselves with the ladies!

Sangye
06-01-2011, 01:01 PM
Oh man, rtx infusion #3 today was super rough. I've had a splitting headache (sinus) for about 3 days. It got triggered by the cold I had last week but I know it's not infected or anything. It starts in the morning and sometimes eases up by night, then starts again the next day. Sure enough this morning it kicked in. The hit of 100 mg solumedrol eased it for a whopping 15 minutes. Hard to believe that much pred didn't touch it. It was a long, rough ride home. I always get a few hours of nausea on the infusion night. It started about 30 mins from home and I thought I was gonna throw up. I never do, but it was pretty bad. By the time I actually made it inside my house I was not a pretty sight!

Rini
06-01-2011, 01:31 PM
with just a little time this will be behind you, stay strong and get better quickly w/ rest.

vdub
06-01-2011, 07:07 PM
Tough times.... I'm sure this is going to be in my future eventually and I'm gaining a lot of insight from you and treetop. I hope both of you get this behind you soon.

Brooke
06-01-2011, 11:35 PM
I'm sorry you are going through this Sangye. Try to stay strong and I hope you start feeling better really soon!!! :hug1:

ScreaminMeanie
06-02-2011, 12:43 AM
I was thinking about you last night, Sangye and hoping this was getting easier for you. I really hope you feel better soon and that the Wegs dog takes a loooooooonnnnnnnng nap.

Chris G
06-02-2011, 01:05 AM
Oh Sangye I'm so sorry! I was hoping it would be getting easier.......I guess that's not how your body works, eh? Hugs to you.....:hug2:

Sangye
06-02-2011, 02:00 AM
Thanks you guys. Just one more infusion left next week and then another 2 weeks or so to recover.

vdub, please don't worry about having this type of reaction to the rtx. It's very unusual. The vast majority of people don't notice much of anything when getting rtx. I'm sure you'll be one of them.:smile1:

marta
06-02-2011, 07:27 AM
Sangye, I hope that after the next one you don't have to go through this for a long time... I know what you'll say, but you never know what tomorrow brings, a miracle of some sort might happen. Who knows. I'm so sorry that you have to go through this horrible experience to get better. It must be so hard to get yourself up and into it and take it with a feeling that it's actually going to help. I use to hate taking my meds at the start and my mom would tell me to not think that way before taking them and instead tell myself that they are great and are going in and going to help me. It was tough following her advice. I still have a hard time swallowing that nasty cocktail and thinking that it's all great, but I guess I'm here because of them, so she's right. Stay tough and live long and prosper as the Vulcans say.

Sangye
06-02-2011, 07:36 AM
Yeah, even though I know how it'll make me feel I still view the rtx as healing nectar and I still keep a door open in my mind that maybe it won't be bad this time.

We've tried the waiting between rtx and I just get worse and worse. The Wegs dog wakes up as soon as the rtx barely begins to wear off. So we're just gonna repeat it every 6 months and hopefully that'll keep the Wegs from waking up at all. And it'll be the 4 infusions each time. We've learned from trial and error!

marta
06-02-2011, 08:14 AM
I feel that way about the RTX too. So the plan is for you never to have B cells again? Do you think sometime in the future after a few infusions, they might reconsider this attack plan? I know it's really freaky to be experimenting and let the door stay open to see if that hungry, snarly dog decided to come in again or if it has gone down the neighbourhood looking for food elsewhere.

Sangye
06-02-2011, 08:29 AM
I don't know about forever--no one can answer that-- but in the foreseeable future the plan is every 6 months.

It's been too many years of active Wegs already: One year pre-diagnosis. Then after nearly 8 months on ctx and 2 months on mtx, the Wegs was not under control. Then 2.5 years on Cellcept and the Wegs was active the whole time. Then repeat ctx and 4 rounds of rtx for the next 2 years with Wegs activity returning constantly.... I accept that the Wegs dog on my street is gonna stay awake unless we do the treatments every 6 months (ie, before he wakes up again). I think we've proven--to my satisfaction and to Dr Seo's-- that we won't get a different result if we try the wait and see approach again and that it will only cause further damage.

elephant
06-02-2011, 09:42 AM
Crossing my fingers and toes that this time Sangye the Dog will sleep soundly and have endless dreams of dog bones and squirels.

Sangye
06-02-2011, 09:44 AM
LOL As long as he doesn't do the little kicky feet thing in his dreams like my dogs do.

drz
06-02-2011, 12:09 PM
My rheumatologist told me today that some of the early research on RTX is suggesting that people who were treated with RTX before going on CTX are doing better in getting into drug induced remissions and staying in them longer. Has any one else heard this or read about it?

Brooke
06-03-2011, 01:28 AM
I haven't heard anything about this. I can ask my doc at Mayo when I go there this Summer. I have only been on Rituxan (was on methotrexate first), no Cytoxin and hopefully never need that.

Sangye
06-08-2011, 12:29 PM
Rituximab Round Four: Done.

I feel awful tonight in the usual ways but glad it's over. It's hard to celebrate being done knowing that the next 2 weeks are gonna be hideous and I get to do it all over again in a mere 6 months.... but hey. I'll take it.

elephant
06-08-2011, 12:35 PM
Glad its done and over with Sangye, and will be here for you. Have a good night. I sure the Weg dog is out.

pberggren1
06-08-2011, 01:49 PM
Hopefully you will do better this six month term Sangye.

Sangye
06-09-2011, 12:43 AM
Man, I hope so. This morning I realized it's not really 6 months "off." It's 6 months between the start of each treatment. The treatments leave me non-functioning for 6 weeks each time, so my actual functioning time between treatments is actually 4.5 months (6 weeks less than 6 months). That was a highly unpleasant realization. :sad:

Hopefully I won't have complications during those 4.5 months and can recover some strength. His Holiness the Dalai Lama comes here in one month. I'm going to be strong for that.

vdub
06-09-2011, 06:49 AM
please don't worry about having this type of reaction to the rtx. It's very unusual. The vast majority of people don't notice much of anything when getting rtx. I'm sure you'll be one of them
I hope you are right, but that doesn't make me feel any better about you. Sooooo many people on this site are going through such trying times....

Sangye
06-09-2011, 06:56 AM
Thanks vdub. :smile1:

Brooke
06-09-2011, 07:34 AM
Yay, you are done with this round!! Try and stay as positive as you can and we all hope this round did the trick for you!!

Sangye
06-09-2011, 07:40 AM
Thanks, Brooke. I think it'll be easier to be upbeat about it in another 2 weeks. Right now my legs are shaking if I stand long enough to brush my teeth. :unsure:

elephant
06-09-2011, 12:01 PM
Sleep good tonight Sangye. Hoping tomorrow you will be able to stand without shaking.

Chris G
06-10-2011, 03:35 AM
So glad you're finally finished with the rtx treatments. :thumbsup:
I hope the down time will be shorter than you expect. You deserve a much needed break!

Sangye
06-10-2011, 03:51 AM
Thanks you guys :smile1:

jmmilliorn
06-11-2011, 04:31 AM
I just talked to Dr Villa Forte at the Cleveland Clinic. She is going to start me on Imuran now that my two Rituximab infusions are completed. I will be taking 150 mg per day in three tablets. I may be taking Imuran for several months. I get to continue tapering off the steroids, too, but very slowly. I have had to stop taking them all in the morning. Once I got the dose below 15 mg/day, I was running out of gas during the night and having a rough morning until the new daily dose kicked in. Now I take some at breakfast as usual and the rest of the daily dose in the evening. I'm down to 12.5 mg/day and will go to 10 next Sat. These last two days I have had more energy than I've had in several months. I hope this means I've turned a corner on my recovery, but I'm afraid to celebrate yet. I can finally start walking again if this energy boost continues. My legs aren't as shaky now and I'm not as short of breath as I've been. I still have other problems to deal with--like the blood clot and the swallowing problem and a nodule in my right lung, but I may be seeing some real progress for the first time since January when I was first diagnosed.

Sangye
06-11-2011, 04:54 AM
That's great news, Mike! I bet your adrenals were just not getting what they needed for part of the day and it was manifesting as fatigue and shakiness. Very common. Remember that feeling, because it will be a useful indicator as you taper the pred, warning you when you've tapered too fast. Even though it's fresh in your mind right now, I suggest you write it down and describe it well. You wouldn't believe how much you start to forget as the months go by.

The blood clot and the nodule will take care of themselves with the drugs you're on. I hope you feel better every day. :smile1:

Rini
06-11-2011, 07:20 AM
Congratulations!:thumbsup:

vdub
06-11-2011, 07:42 AM
I may be seeing some real progress for the first time since January when I was first diagnosed.
Lets hope this trend continues! Nothing quite as good as being able to get around!

I was really hurting this morning and ended up sleeping half the morning away. Feeling pretty good now, tho.....

elephant
06-13-2011, 09:55 AM
J.Million, how often do you go to cleveland clinic? I had a lung nodule taken out, they werent sure if it was cancer or wgs. The whole time I knee it was wegs. How was it confirmed that it was a wegs lung nodule?

vdub
06-13-2011, 10:29 AM
I may be wrong, but I think they biopsy the tissue and look for granulomas. That is what they did with my pit and, among other things, that is what led them to the dx of WG -- they found granulomas.... I don't have the original dx letter with me, but I'm 99% sure that was the case.....

jmmilliorn
06-13-2011, 10:58 AM
E., I went in Jan to get diagnosed. Great trip. I went back in early April for a checkup, and then I went again the end of April when I had a toxic reaction to Methotrexate. That trip was unscheduled. Now that I've taken Rituximab, Dr. Villa Forte wants to see me again in August before she puts me on Azathoprine. It isn't on a regular basis, but I think she wants to see me a couple times a year at least until I go into remission (if I ever do) I have enough Aadvantage mileage that it is no problem money-wise. It is only a two hour flight for me. The care there is so much better than anywhere else, I don't mind going there.


J.Million, how often do you go to cleveland clinic? I had a lung nodule taken out, they werent sure if it was cancer or wgs. The whole time I knee it was wegs. How was it confirmed that it was a wegs lung nodule?