Just an update on my situation.

[jmmilliorn]

It is now several weeks since both my RTX infusions, and I feel much better. The MTX was really making me sick, but I just thought it was the WG making me feel bad. I wake up most mornings amazed that I feel so good. Everyone says I look well to them. I still feel a little shaky sometimes, but overall I feel pretty good. But, I am still carrying around the 40 lbs of excess weight the prednisone put on me. Mostly in the belly, neck and face, too. I regret that I gave into my hunger so easily with all those carbs. My Pred dose is down from 60mg to only 10 mg per day and I am supposed to start taking Azathioprine tablets soon I'm told. I look forward to getting off the steroids of course. Seeing my WG doc at the Cleveland Clinic in August.

I am still very weak and short of breath if I exert myself more than a minute or two. Can't work on the ranch yet. Even carrying in groceries or climbing a few stairs tires me out, and the blood clot in the right leg (courtesy of WG) makes getting up and down more difficult. Just had the old leg scanned. The clot is a little better, but the doc says it has probably turned to "concrete" and I'll be living with a fat leg, compression socks and blood thinner the rest of my life. Still on Coumadin. I do think I am getting a little stronger each week, but the progress is much slower than I expected or hoped. But, progress is progress. I want to start walking for exercise, but it has been over 100F in Texas every day for a month. Even at 10PM it is still near 100F.

I am having a CT scan of my lungs in July to see if the nodule they found in April is bigger or smaller. I hope it is gone since I am feeling so good now.

After a recent trip to the dentist to have a tooth capped, I developed Muscle Trismus (lock jaw). In researching it, I saw that it is one of the many symptoms of vasculitis. Now I'm wondering if I got it from the five shots of anesthetic in the jaw muscle or not. Coincidence? Hmmm. Still can barely get one finger in my mouth after two weeks of muscle relaxers and rubber appliances between the teeth.

I thought I'd share all this just in case someone wants to comment or in case someone else is experiencing similar symptoms and wondering if they are the only ones. I do that all the time.

Best regards to all you fellow Weggies.

[Sangye]

Thanks for the update, Mike. I've been wondering how you were doing these days. It sounds like things are moving along. With Wegs, even if they're improving very slowly it's better than the big setbacks.

Before I was dx'ed, I had the severe migratory joint pain for a year. Every so often it would affect my jaw. I could barely open my mouth--a finger's width, like you said. More than that caused severe 10 out of 10 jaw pain. It usually only lasted 24 hrs or so.

I sure wish I hadn't gained all the weight, either. I didn't know pred caused weight gain in the beginning. It's hard to convince people who are on the high doses that they'll be really sorry when it comes time to try and get the weight off. We all assume we'll be in good physical shape to do it, but that isn't always the case.

[Psyborg]

Glad you are feeling better JM :) I hope the jaw starts to feel better soon. I know I've developed tooth grinding recently myself, I can't keep the mouth guard in all night. I wake up and just want it out in the middle of the night. I can't imagine lock jaw...that's gotta be rough.

[jmmilliorn]

Thanks for the reply. I'm on week two of the lock jaw.

[jmmilliorn]

I think I clench at night. I wake up sometimes with sore jaw muscles.

[elephant]

Glad your getting better. Never had a problem with my jaw.

[pberggren1]

I am sorry to hear about the lock jaw Mike.

But I am glad to hear about your increased energy and overall feeling better. I hope you guys can get some good rain soon and the temps will lower a bit. Walking is good. I try to do it every day but with the heat and mosquitios and of course the SOB I don't get very far or fast.

[jmmilliorn]

I am sorry to hear about the lock jaw Mike.

But I am glad to hear about your increased energy and overall feeling better. I hope you guys can get some good rain soon and the temps will lower a bit. Walking is good. I try to do it every day but with the heat and mosquitios and of course the SOB I don't get very far or fast.
Can you see any improvement since your RTX infusions Phil?

[pberggren1]

I honestly can't see any improvement yet. I have my last of 4 infusions this Thursday on July 7, my birthday. I think once August rolls around I should start to feel better. I think the high dose pulse steroids make me feel crappy as well for a week after the infusions. I will be starting back on the AZA as well on July 14. It sounds like we are almost in the same boat. I have only gained about 15 pounds this go around on pred.

[jmmilliorn]

They didn't change my steroids for my infusions.

[pberggren1]

I got 1000mg the first infusion then 500mg for the next 3.

[vdub]

Well, Mike, I'm tapering off the MTX beginning tomorrow and I'm having a tooth cap installed on Thur. Hope it doesn't lead to lock jaw..... I'll keep you in mind as the process continues....

[Rose Cozzette]

Thanks for the reply. I'm on week two of the lock jaw.boy, if its not one thing its another. I just had some dental work done and have TMJ probs from before, now feels like my teeth dont meet. still have to get the crown put on today so as usual will caution the dentist. its the dental assts that dont pay attention.if you know of a PT who does myofascial therapy, this would help the jaw. good luck.

[jmmilliorn]

Still can't open my jaws all the way. Mh.y dentist tried muscle relaxers and a rubber device called the Aqualizer. Didn't help. Now I'm being sent to a TMJ doc next week. I can only open up about one inch. The dentist says it should be at least double that. I did read that this condition was one symptom of Vasculitis but after two infusions of RTX and no other WG symptoms, I can't believe this is not related to my recent dental work. Its always something isn't it?

[vdub]

Your situation seems just too weird. I'm kind of with you in that it sounds as if it's related to the dental work.... Keep us posted....

[Psyborg]

Did the root canal the tooth by any chance? I know they had to do root canals on two of mine as the risk of infection was significantly higher while suppressed. I was just wondering if maybe you've got an infection in the area the capped now? With out drugs some of the primary signs they might look for would be invisible. I had no pain in my tooth until it became unbearably sensitive to Heat and Cold.

[Sangye]

Mike, I suggest you see a chiropractor.

[jmmilliorn]

Mike, I suggest you see a chiropractor.

I've been going to one for weeks. Hasn't heaped my jaw but I'm getting feeling in my little fingers on the left hand again though. I have an appt with a TMJ specialist next week.

[jmmilliorn]

I started Azathioprine tonight. 3 tablets per day. 50mg. each. Hope I don't react to them like I did the Methotrexate. Also taper to 8 mg pred tomorrow.

[Chris G]

Do you take fosamax (alendeonate sodium)? There's quite a bit of info on the internet about fosamax causing jaw damage.....osteonecrosis of the jaw. If you take another bone loss prevention drug you might want to look it up as well.

[jmmilliorn]

Do you take fosamax (alendeonate sodium)? There's quite a bit of info on the internet about fosamax causing jaw damage.....osteonecrosis of the jaw. If you take another bone loss prevention drug you might want to look it up as well.

No. Not taking that. Never heard of it. I feel so good since my RTX infusions I regret having to start taking the azathioprine. I'm afraid it will make me feel drugged or something.

[Sangye]

I've been going to one for weeks. Hasn't heaped my jaw but I'm getting feeling in my little fingers on the left hand again though. I have an appt with a TMJ specialist next week.
Glad to hear about your fingers-- that's promising. I hope the specialist can help you.

[drz]

No. Not taking that. Never heard of it. I feel so good since my RTX infusions I regret having to start taking the azathioprine. I'm afraid it will make me feel drugged or something.
I haven't had any such feeling from taking it the past several months. I think the biggest risk from it is elevated liver enzymes which I have had and need to monitor closely.

[jmmilliorn]

I haven't had any such feeling from taking it the past several months. I think the biggest risk from it is elevated liver enzymes which I have had and need to monitor closely.

From Fosamax or Azathioprine?

[drz]

From Fosamax or Azathioprine?

The azathioprine. Fosomax has other risks but I take them both.

[Rose Cozzette]

Do you take fosamax (alendeonate sodium)? There's quite a bit of info on the internet about fosamax causing jaw damage.....osteonecrosis of the jaw. If you take another bone loss prevention drug you might want to look it up as well.had not heard of this before but does not surprise me, lots of probs w/fosamax et al. I cant take it.

[elephant]

Did they do a CT scan?

[jmmilliorn]

Did they do a CT scan?

Yes, but I don't have the results yet.

[elephant]

Hope you find out soon!

[Rose Cozzette]

Yes, but I don't have the results yet.any results yet? bet its even hotter there than it is here in CO. yuck...

[jmmilliorn]

any results yet? bet its even hotter there than it is here in CO. yuck...

Finally got the CT scan results. THe nodule had calcified and was a granuloma. Only 2mm. No problem. Already had to quit taking the AZA eventhough tht blood test said I could take AZA, I had a bad reaction to it. Got VERY sick. Dr. V-F at the CC said don't take anything till I see her next month. Maybe I'm already in remission, but she is afraid to chance it.

[marta]

Maybe I'm already in remission, but she is afraid to chance it.

From your mouth to God's ears (I know, no religious comments, but you know what I mean):wink1:

[Rose Cozzette]

Finally got the CT scan results. THe nodule had calcified and was a granuloma. Only 2mm. No problem. Already had to quit taking the AZA eventhough tht blood test said I could take AZA, I had a bad reaction to it. Got VERY sick. Dr. V-F at the CC said don't take anything till I see her next month. Maybe I'm already in remission, but she is afraid to chance it. well good, glad to hear it. I cant take AZA either which is how I ended up on cellcept. the docs are very hesitant to say we are in remission since the smallest thing seems to set us off again. but it is what it is and we cant move on if we wait for "ideal conditions" to come. we are no longer w/in the norms so ...

[jmmilliorn]

The Aza cloud has finally worn off and I'm not feeling any more side effects. Reduced pred. to 7mg yesterday. Next week I go to 6 mg. Can't wait to get off the stuff after over a year of taking it. Rose, maybe Dr. Villa Forte will give me cellcept too since the MTX and AZA both made me sick. Or maybe she will just let me see how long I can go without symptoms. Does anyone know if you can just take a 3rd 1000 mg infusion of RTX if you start to show symptoms again without going back to 60 mg prednisone per day? I feel pretty good now, but I'm still week as a kitten and short of breath if I walk, climb, carry or try to do much.

[Sangye]

Unless you're having a major flare, you shouldn't need to go back on 60mg pred the next time you do rtx. But they don't give just one infusion. You'd get either 2 or 4, depending on the protocol your doctor uses.

[Rose Cozzette]

The Aza cloud has finally worn off and I'm not feeling any more side effects. Reduced pred. to 7mg yesterday. Next week I go to 6 mg. Can't wait to get off the stuff after over a year of taking it. Rose, maybe Dr. Villa Forte will give me cellcept too since the MTX and AZA both made me sick. Or maybe she will just let me see how long I can go without symptoms. Does anyone know if you can just take a 3rd 1000 mg infusion of RTX if you start to show symptoms again without going back to 60 mg prednisone per day? I feel pretty good now, but I'm still week as a kitten and short of breath if I walk, climb, carry or try to do much. please go slow on the preds decrease, heeding Sangye's words and others, as I found out myself, that small flareups can occur and set you back. I am still trying to get back to 3mgs and am having to go slower than before. many symptons show up with the decrease. when I was raised on the preds it was short term, just a day or so and then had to start down again, not from the high but still higher than I had been. I want off too but my body dictates how fast I can go. :glare:

[Rose Cozzette]

please go slow on the preds decrease, heeding Sangye's words and others, as I found out myself, that small flareups can occur and set you back. I am still trying to get back to 3mgs and am having to go slower than before. many symptons show up with the decrease. when I was raised on the preds it was short term, just a day or so and then had to start down again, not from the high but still higher than I had been. I want off too but my body dictates how fast I can go. :glare: forgot to say that I also am weak and get short of breath exertion. very frustrating as I would like to do more.

[norcalian]

I'm curious about the normal flare-up protocol with Prednisone...If a Weggie flares-up and gets another round of RTX - how much pred, if any, are they typically placed on? For suture flare-ups I wouldn't mind the RTX infusions...it's the pred I can't stand the thought of.

[pberggren1]

I'm curious about the normal flare-up protocol with Prednisone...If a Weggie flares-up and gets another round of RTX - how much pred, if any, are they typically placed on? For suture flare-ups I wouldn't mind the RTX infusions...it's the pred I can't stand the thought of.

The amount of pred if any at all is very individualistic with each case. You might not need any at all. But most people will need some as Wegs is an inflamatory disease. If the ESR and CRP are way up there then you will most likely need a lot of pred and will start on a high dose again. But if your doc stays on top of things and has you go for blood work at least once a month or better yet, every 2 weeks, then one can get on top of a rising ESR and CRP before they get too high.

[JanW]

Everything I have seen with folks on pred on this board (and I am one of those weggies with moderate disease that has never had it as part of my regimen) suggests that it is literally all over the map -- much more so than the dosing with any other drug that we take.

[Rose Cozzette]

I'm curious about the normal flare-up protocol with Prednisone...If a Weggie flares-up and gets another round of RTX - how much pred, if any, are they typically placed on? For suture flare-ups I wouldn't mind the RTX infusions...it's the pred I can't stand the thought of. yah. like Phil said, it is so individual. I never had to go back on rtx but have had to go up on preds for short term and then start to go down again. frustrating but cant be helped. we have to go on how the labs show and how we feel.

[jmmilliorn]

yah. like Phil said, it is so individual. I never had to go back on rtx but have had to go up on preds for short term and then start to go down again. frustrating but cant be helped. we have to go on how the labs show and how we feel.

I was wondering the same thing as Phil. I couldn't take MTX or AZA, but maybe if I have more symptoms I can take RTX infusions again. Wonder what the pred dose would be. Surely I wouldn't have to go back to 60mg again. I hope.

[norcalian]

That's the thing...I was on 80 mg of pred for six weeks at the beginning of my treatment (I think it stayed that way that long because of my sudden kidney involvement after the hospital). Last time I met with my rheumy, he made it sound as though I would probably be doing RTX every couple of years to handle flares...he compared it to his RA patients. He said that he thought CTX would bring a more lasting remission...but it was a harsh way to go. So if that is true for me (and with the variability of this disease, who knows for sure) I don't mind doing the RTX treatments, but I would not want to go back on high doses of pred every time...to me, that would make doing a round of CTX for a more lasting remission worth it. But it sounds like from what Phil is saying that as long as we catch the inflammation early, perhaps if there is pred included in the treatment it probably won't be to the degree that I am doing it now (I'm still at 50 mg/d).

[JanW]

Honestly, I think that while your rheumy may think that ctx provides a more lasting remission than rtx, studies haven't proven this out. If anything because ctx has been used longer, there are more people who can say, "I was in remission for 12 years after taking ctx." but in studies both drugs have proved equally effective.

[Rose Cozzette]

I was wondering the same thing as Phil. I couldn't take MTX or AZA, but maybe if I have more symptoms I can take RTX infusions again. Wonder what the pred dose would be. Surely I wouldn't have to go back to 60mg again. I hope.from my experience the increase in preds is temporary, just a day or so, and then go down to a lesser dose, for me 25 and then 10 the second time, and then start the decrease again. it is harmful to the body to stay on high doses of preds, other problems emerge that are as life threatening as the WG. so I figure I would rather not add any other into the mess.

[Rose Cozzette]

Honestly, I think that while your rheumy may think that ctx provides a more lasting remission than rtx, studies haven't proven this out. If anything because ctx has been used longer, there are more people who can say, "I was in remission for 12 years after taking ctx." but in studies both drugs have proved equally effective.
all of these heavy duty drugs do some good but if taken too long are worse than the disease. I do prefer quality of life before quantity if the drug is going to cause me to be miserable in ways that mean more incapacitation than I am already experiencing.

[Chris G]

So, Mike - what are they going to do about your jaw? Did I read it correctly? There's a wg calcification causing your jaw problem?

[jmmilliorn]

So, Mike - what are they going to do about your jaw? Did I read it correctly? There's a wg calcification causing your jaw problem?

Well it took a month of physical therapy, but I finally got the jaw unlocked and back to normal. Unfortunately, I still have more dental work to have done, and I'm afraid it will happen again. The doctor that I went to see about the muscle trismus said that because I'm on coumadin for the blood clot in the leg, the jaw muscle probably got a big bruise from the shots the dentist gave me. My arms bruise during the night sometime and I'm not that rough a sleeper.

[jmmilliorn]

I got a call today from Dr. Villa Forte's assistant. She said my latest monthly blood test showed a decrease in both white and red blood cell counts. Until now, my red blood cell counts have been gradually climbing and I was encouraged that my anemia was getting better since the Rituximab I took in April and May. I don't recall any mention of my white blood cell counts before this. I have felt extra tired lately, but I assumed it was because I'm tapering off prednisone 1 mg/week. Down to 5mg this week. Haven't been on any chemo since my allergic reaction to Imuran in early July. Not sure what's going on. I have an appointment at the CC next Friday, the 19th, and they are going to do another blood test then. I guess I'll just be curious till then.

[Aunnie]

Hi J.Mike,

I haven't been on this chat for a long while,but I found your story interesting.
I'll try to give my Weg story(Readera Digest )version.
Dx'd in 2007,Prenisone since then,can't get below 7mg after many tries.I've tried Methotrexate,Cytoxan,Imuran,Cellcept and haven't been able to get into remission .I started RTX last Sept 2010,2 infusions each time.Again in March and am due again in Sept.I felt last fall that RTX helped(I have 80 mg pred. while being infused).
Since being Dx'd in 2007 I've always had SOB,I went to aPulmonary Spec and had all the breathing tests,all normal.
This spring I had major stomach surgery(Nissen Fundaplication and hiatal hernia repair).Soon after surgery I had SOB badly,my standing heartrate was 140.Readmitted and started on Atenolol,after many heart tests,all normal,AND the bottom line is the SOB(shortness of breath) IS caused by WEG or Granulomatosis Polyangitis.
I take 50 mg Atenolol daily and I can walk up stairs and not feel winded,yes it's another drug and another DR(Cardiologist)but it feels good not to be SOB most of the time.

Good luck to you and your WEG symptoms and I hope RTX helps you more.

Regards,Aunnie

[jmmilliorn]

So, Mike - what are they going to do about your jaw? Did I read it correctly? There's a wg calcification causing your jaw problem?

I think it was just an internal bruise from the dentist's shots. I'm on Coumadin.

[jmmilliorn]

Thanks, Aunnie. I am still weak and SOB, but based on what you've said, I will ask my cardiologist. Seeing him next week. I passed my nuclear stress test and the other tests, like you did. I thought when I got off the pred, I'd do better, but not yet. I'm down to 5mg/day.


Hi J.Mike,

I haven't been on this chat for a long while,but I found your story interesting.
I'll try to give my Weg story(Readera Digest )version.
Dx'd in 2007,Prenisone since then,can't get below 7mg after many tries.I've tried Methotrexate,Cytoxan,Imuran,Cellcept and haven't been able to get into remission .I started RTX last Sept 2010,2 infusions each time.Again in March and am due again in Sept.I felt last fall that RTX helped(I have 80 mg pred. while being infused).
Since being Dx'd in 2007 I've always had SOB,I went to aPulmonary Spec and had all the breathing tests,all normal.
This spring I had major stomach surgery(Nissen Fundaplication and hiatal hernia repair).Soon after surgery I had SOB badly,my standing heartrate was 140.Readmitted and started on Atenolol,after many heart tests,all normal,AND the bottom line is the SOB(shortness of breath) IS caused by WEG or Granulomatosis Polyangitis.
I take 50 mg Atenolol daily and I can walk up stairs and not feel winded,yes it's another drug and another DR(Cardiologist)but it feels good not to be SOB most of the time.

Good luck to you and your WEG symptoms and I hope RTX helps you more.

Regards,Aunnie

[norcalian]

Can you still feel the effects of pred at 5mg a day? I hear that some of the less desirable side-effects (moon-face) wears off once you hit 10-15mg/d. I wonder about the other effects...

[jmmilliorn]

I'm not sure. I'm definitely feeling the effects of cutting back. I run out of gas during the afternoon. I take mine at breakfast. I haven't lost any weight yet, but several people said my face looks thinner. I gained about 40 lbs. during the last year. Don't have my strength back, though I am anemic. As usual, it is hard to tell what causes what. Is it meds, WG, pred., or something else? All of the above maybe.



Can you still feel the effects of pred at 5mg a day? I hear that some of the less desirable side-effects (moon-face) wears off once you hit 10-15mg/d. I wonder about the other effects...

[vdub]

Is it meds, WG, pred., or something else? All of the above maybe.
Isn't that the truth?! Basically sucks.... I guess I should update my remission thread, but I'll wait a bit while I step down another notch with the mtx. Like you, I run out of energy about halfway through the day. The other really odd thing that happens is around 1500 or so, I feel really rotten. Low energy, indegestion, dizziness, sometimes a headache. I feel much better by 1700 whether I eat or not. The only thing I can think of is my regular dose of cortisone at 1400. More research is needed.....

[jmmilliorn]

Very interesting. And it is so hard to pin down cause and effect.


Isn't that the truth?! Basically sucks.... I guess I should update my remission thread, but I'll wait a bit while I step down another notch with the mtx. Like you, I run out of energy about halfway through the day. The other really odd thing that happens is around 1500 or so, I feel really rotten. Low energy, indegestion, dizziness, sometimes a headache. I feel much better by 1700 whether I eat or not. The only thing I can think of is my regular dose of cortisone at 1400. More research is needed.....

[Rose Cozzette]

Well it took a month of physical therapy, but I finally got the jaw unlocked and back to normal. Unfortunately, I still have more dental work to have done, and I'm afraid it will happen again. The doctor that I went to see about the muscle trismus said that because I'm on coumadin for the blood clot in the leg, the jaw muscle probably got a big bruise from the shots the dentist gave me. My arms bruise during the night sometime and I'm not that rough a sleeper.so glad the jaw problem is relieved. when I was having dental work done I told the dentist I am paranoid abt the work and to please stop often and bear with me, he did and it helped a lot. I told him how I cant tolerate pain very well now and he accomodated me. worth a try. :thumbsup:

[Rose Cozzette]

Hi J.Mike,

I haven't been on this chat for a long while,but I found your story interesting.
I'll try to give my Weg story(Readera Digest )version.
Dx'd in 2007,Prenisone since then,can't get below 7mg after many tries.I've tried Methotrexate,Cytoxan,Imuran,Cellcept and haven't been able to get into remission .I started RTX last Sept 2010,2 infusions each time.Again in March and am due again in Sept.I felt last fall that RTX helped(I have 80 mg pred. while being infused).
Since being Dx'd in 2007 I've always had SOB,I went to aPulmonary Spec and had all the breathing tests,all normal.
This spring I had major stomach surgery(Nissen Fundaplication and hiatal hernia repair).Soon after surgery I had SOB badly,my standing heartrate was 140.Readmitted and started on Atenolol,after many heart tests,all normal,AND the bottom line is the SOB(shortness of breath) IS caused by WEG or Granulomatosis Polyangitis.
I take 50 mg Atenolol daily and I can walk up stairs and not feel winded,yes it's another drug and another DR(Cardiologist)but it feels good not to be SOB most of the time.

Good luck to you and your WEG symptoms and I hope RTX helps you more.

Regards,AunnieI had not heard of the SOB being treated, what does the Atenolol actually do? my BP goes right up with any exertion and of course SOB.

[pberggren1]

I think Atenolol relaxes the heart muscles. But I could be totally wrong. Or maybe that is the Ramipril that does that.

[Rose Cozzette]

I think Atenolol relaxes the heart muscles. But I could be totally wrong. Or maybe that is the Ramipril that does that.well I need to check this out, hmmm...

[Aunnie]

Hi Rose,
Haven't checked in here in a few days...

The Atenolol slows my heart rate,lowers my BP ,and makes the SOB go away.
It makes me feel much stronger on a good day.

Hope this helps,
Aunnie :cool1:

[Rose Cozzette]

thanks, I did look it up and since I already take a diuretic for my BP I will ask my doc abt it. if my house would just seel then I would really see how much I can do. :ohmy:

[jmmilliorn]

Good visit at Cleveland Clinic today with Dr. Villa Forte. She is the greatest! New chemo for awhile longer though--Cellcept. Don't know much about it yet. I'll start tapering off the steroids again. The leg rash problem last week was considered minor. My anemia is slightly better. CT scans of the lungs and sinuses were clear. Back on track to future remission I hope. Last week's flare up was just a minor derailment I hope. I'm still very short of breath however.

[pberggren1]

Hopefully the Cellcept will work for you. It worked OK for me until I flared. I flared twice while on it.

[Sangye]

That's great, Mike. Those micro-flares can be scary. Glad you got it under control.

BTW Cellcept isn't chemo. It's a targeted therapy that kills B cells. Diarrhea seems to be the only problem people have with it, but not everyone has difficulty.

[elephant]

I am on Cellcept, it has worked for me , good luck...hopefully you won't have any side effects!

[Rose Cozzette]

I have been on cellcept for just over a yr and doing ok w/it. had stomach problems until took it closer to meals, not 1 hr before. sangye suggested that. just decreased to 750 daily. how much are you on? my high dose was 1500. went to 4 mgs of preds today and dec. 1/2 mg now as tolerated. had 2 small flareups w/cellcept but not bad. doc hopes to have me off it by end of year so hopefully...

[jmmilliorn]

I'm taking 500 mg twice a day to start with. Just started on 8/20/11. I think the plan is to increase the dose after a few weeks. I have to take a blood test at the end of two weeks to see how it is going. It upset my system a little the first two days, but not today. The worst part about the recent leg flare up is having to go back to 60 mg of steroids per day. I was down to 5mg and nearly off them. Now it it will take another 15 weeks to get back to where I was. I'm continually weak and shaky on my legs and short of breath. That really irritates me. My PCP says it is the steroids and that they rob your extremities of energy. Sounds logical.

[Rose Cozzette]

it seems that now I dont have to go so high on the preds with a flareup and then can come down more quickly until 5 and the go slow again. so maybe yu can look forward to this. I do feel better on this lower dose and can do more, tho still limited. sigh...

[Sangye]

I'm continually weak and shaky on my legs and short of breath. That really irritates me. My PCP says it is the steroids and that they rob your extremities of energy. Sounds logical.
I hope you get stronger soon, Mike. That was a very astute comment from your PCP. I've never heard an MD say that but it exactly how pred feels to me. Thanks for sharing. :smile1:

[elephant]

Hope you feel better Mike, keep an eye on the shortness of breath.

[jmmilliorn]

Week two of the Cellcept. No problems yet. I've begun taking short morning walks again this week. This is the first time I've been able to walk in about a year. I'm still very short of breath and gasp throughout the whole walk, but it feels good to get out of the house at last. The blood clot leg is not swelling as bad anymore. I wear the compression socks (footsmart.com has colors) religiously and elevate my ankle when it swells. Trying to get off the steroids again. I'm tapering back down from the 60mg again. Down to 40mg this week. Will take about 15 weeks total to get back to 5mg again where I was before my flare up in the left leg. Barbara and I want to take a cruise this Oct. with our church friends if I can muster the strength. Dr. V-F says I should be able to go. Hope so.

[Sangye]

That's good to hear, Mike. I hope things continue to go well for you. :thumbsup:

[Rose Cozzette]

glad to hear you are feeling better. keep up the good work.:thumbsup:

[pberggren1]

I sure hope the cellcept works for you Mike. If I remember correctly you cannot take ctxm mtx, and aza now, right?

[Psyborg]

I hope you can get on that cruise Mike :) It'll be a great stress reliever most likely :)

[jmmilliorn]

No. Didn't do well on those. They all made me violently ill. I'm walking 2 miles each morning now--gasping all the way, but walking.. Trying to increase my stamina for the cruise excursions. So far no ill effects from the Cellcept. Don't know if it is making me feel better or not. Is it even supposed to? Or does it just suppress your immune system. I thought the RTX made me feel better, too, but then I had that flare up a few weeks ago. I know the big culprit is the steroid dose. I'm still gaining weight even while trying to taper again. The gut is pushing on my lungs and diaphragm and making it harder to breathe.

[Sangye]

You should notice a gradual improvement in Wegs symptoms. It may be that most of your symptoms at this point are not actually due to Wegs but to the collateral damage-- eg, weight gain, muscle loss. Shortness of breath can be caused by lung inflammation but it can also be a result of past lung inflammation. It takes time to recover from active Wegs.

I think if you're able to walk 2 miles it's worth celebrating. Maybe it's not where you were before, and maybe you can't do it without being out of breath a bit, but it's still incredible to have the ability.

[drz]

You should notice a gradual improvement in Wegs symptoms. It may be that most of your symptoms at this point are not actually due to Wegs but to the collateral damage-- eg, weight gain, muscle loss. Shortness of breath can be caused by lung inflammation but it can also be a result of past lung inflammation. It takes time to recover from active Wegs.

I think if you're able to walk 2 miles it's worth celebrating. Maybe it's not where you were before, and maybe you can't do it without being out of breath a bit, but it's still incredible to have the ability.

Yea, that sounds great and rather amazing to me. Wow, a whole two miles!! A year after my release from the nursing home after several months I can on a good day walk about 1/2 mile at about 2 miles an hour. Often I need to rest for a few minutes along the way but so far i have made it back home every time with out needing to call for a ride. My dream is to be able to walk a whole mile at about three miles an hour, but any ability to walk anywhere beats being in a wheel chair, right?

[Sangye]

LOL Wow, a 1/2 mile! I can make it about 100 ft. On a good day.

[Rose Cozzette]

ditto what Sangye said on gradual improvement. I can only walk abt 1/2 mile and thats pretty slow. my aches really increase with the distance esp hips and feet. on cellcept my head got fuzzy and more memory probs which has improved as it is decreased. and you will lose wt as the preds is decreased, min e has happened slowly and is still coming down. think the diabetes affects wt also. what a tangled web! found a place to move to and have good offer on this house so ready to go!!

[jmmilliorn]

I'm having my throat operated on Thursday the 29th to repair or remove the Zenker. Won't know till I wake up if it was endoscopic or not. Doc says 50-50. Through the side of the neck is a much tougher operation and recovery. I'm so tired of choking and swallowing problems though I almost look forward to it. This is my second operation for swallowing problems. Not WG related. Probably caused by GERD.

Down to 15mg steroids again. Doing 2.5 less each week till I get to 10. Then I have to call Dr. Villa Forte for more instructions. Tolerating the Cellcept OK so far. Taking 1 gram daily.
Still walking in the mornings when I'm not too weak and shaky. Getting a little less short of breath but not losing any weight.

[Psyborg]

Best of luck Mike.

[RudiK]

Good luck, Mike, I hope it works out and corrects your problems with swallowing. All the best. Rudi K.

[Sangye]

Best of luck, Mike. Thanks for letting us know how you're doing!

[elephant]

Ditto! Hope you feel better soon.

[Rose Cozzette]

good luck Mike! hope it helps.

[jmmilliorn]

Thanks, Rose. I'm feeling positive and optimistic about the expected outcome. My surgeon is supposed to be the best at this.

[pberggren1]

I sure hope this works for you Mike.

[jmmilliorn]

Thanks, Phil. We'll know soon. Just praying it is an endoscopic procedure, not through the neck. I really dread waking up with a feeding tube out my nose for week or more.

[pberggren1]

Thanks, Phil. We'll know soon. Just praying it is an endoscopic procedure, not through the neck. I really dread waking up with a feeding tube out my nose for week or more.

I so know what you mean about the feeding tube. But you are strong and have much support from here and your family and God will give you the strength to get through it all.

[drz]

Best wishes for success in your surgery. Always hope for the best outcome but know you can handle whatever happens. Let us know how it goes!

[Rose Cozzette]

what happened with Jack? I had not known abt this and I am so sad. I will be offline now for a few days as am moving so hope to talk to you all next wk.

[jmmilliorn]

Well, I'm doing pretty good lately. Not too many symptoms. My shortness of breath has improved and I feel pretty good most days, though I tire easily. I'm down to 12MG pred for the second time this year and no flare ups since August. My Cleveland Clinic doc, Villa Forte, says I may get another Rituximab infusion in Dec. and then finish tapering off the steroids. May be drug free next year if all goes well. Only concern right now is my upcoming throat surgery on Thurs. Nov. 3rd for the swallowing problem--unrelated to WG. Hope it is endoscopic not through the neck. Won't know till I wake up. Repairing a Zenker that chokes me when I swallow. This is my second in a dozen years. Wish me well.

Mike

[mishb]

Good luck for Thursday Mike,
I'm sure after all you have been through this past year, the surgery will be a breeze (fingers crossed).

Next year is so close now - as a friend told me today, only 56 days till Christmas - you will be drug free in no time.

Take care

[Chris G]

Hi Mike! I don't think I've seen you on the board in a while! I'm glad to hear you're doing well, and the sob has let up some.

Good luck with the surgery! Keep us posted.

[Sangye]

Glad to hear you're doing so well, Mike. I'm hoping that next year finds you drug-free. :thumbsup: