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NicShaf
01-26-2011, 04:53 AM
My hands have been pretty shaky for a couple weeks now. I started my oral Cytoxan as of the first of the year, could this be tiredness/weakness from that? Has anyone else expirienced this?

Thanks.

DEE
01-26-2011, 04:59 AM
hi Nicola i was taking oral cxt and preds and had the shakes on and off which eventually settled hope they do the same for you DEEx

Sangye
01-26-2011, 05:18 AM
How much pred are you on? When I was on high doses my hands shook so much I couldn't write.

NicShaf
01-26-2011, 05:27 AM
I'm currently on 60mg/ day. I see my Rheumy next Monday, I'm hoping they will start lowering my Pred then. I've been on the 60mg/ day for almost 6 weeks now.

Thanks for the feedback, I'm glad to hear it's not just me and will hopefully start getting better.

DEE
01-26-2011, 05:47 AM
How much pred are you on? When I was on high doses my hands shook so much I couldn't write.

ditto to Sangye's post got better as preds were lowered :thumbup:

drz
01-26-2011, 05:55 AM
How much pred are you on? When I was on high doses my hands shook so much I couldn't write.

I had trouble eating due to shakes when on higher dosages of prednisone. I was also on higher dosages of Cytoxan at same time so don't know what caused shakes. shakes seemed to go away as both drugs were reduced.

NicShaf
01-26-2011, 06:24 AM
drz, I'm currently on 150mg/ day of Cytoxan, were you on a higher dose than that?

Wee Gerry
01-26-2011, 06:33 AM
I was diagnosed in December 2009. After treatment started I have had a few relapses. In November 2009, after being admitted to hospital, my Prednisilone was put back up to 80mg daily. It is now down to 30 mg and the shakes are disappearing. Now my biggest problem at night is that my throat is totally dry and my tongue is covered in yellow patches. My sense of taste is not very good now. I would be interested to hear if anyone else has the same and the treatment used before I see my doctor.

drz
01-26-2011, 07:08 AM
drz, I'm currently on 150mg/ day of Cytoxan, were you on a higher dose than that?
No that was my maximum of Cytoxan along with 70 mg prednisone at the top dosage. Both were reduced fairly quickly though.

gurinbasra
01-26-2011, 07:12 AM
I was up and down on Prednisone for two years and each time, I could tell the hand shakes for me was the Prednisone. I couldn't even match my credit card signature for a while! Along with that were the foot cramps (low potassium) but eating about 3 bananas a day helped keep that away and of course the confused & muddled mind, even a simple decision was so hard to make because there were all these emotions and thoughts going through my head.

Wow, it's a wonder I could even function back then, but Nicole, you'll get through it, just hang in there and crack a few jokes about the shaky hands and being high on drugs!

elephant
01-26-2011, 07:31 AM
That is a long time to be on 60 mg of prednisone. The shakes could be from the prednisone. The yellow patches need to be looked at. It go be fungi?

Sangye
01-26-2011, 08:14 AM
I agree-- way too long on 60 mg pred! That's very damaging. They shouldn't be using pred to get the disease under control--that's the job of the main immunosuppressant.

jola57
01-29-2011, 05:57 PM
I was on 60 mg pred for 3 months as well as 150 cytox after my flare and lung involvment. My hands had the pred shake especially in the morning. I slowly tapered off to 4mg after 1 and 1/2. I am now on mtx and 4mg pred and feeling good. Trust your doc to know what is best for you but also listen to your body and ask questions.

RCOSSIO
01-29-2011, 11:56 PM
NicShaf....When I started back in June 2008 150mg Cytoxan and 60mg pred...usually high initial dose and then tapered off. Currently 2000mg Cellcept and 2.5mg pred.

elephant
01-30-2011, 06:12 AM
How are yo doing Richard? Do you feel that you are wegeners free only being on Cellcept 2000mg and low dose of prednisone?

RCOSSIO
02-06-2011, 11:26 PM
So far yes...however I do notice a few more minor joint pains now after dropping the Cellcept close to a year now.

Sangye
02-07-2011, 01:22 AM
Stay on top of that joint pain, Richard. If it gets at all worse you might need to increase the cellcept or do something different. Wegs can easily smolder on cellcept.

renidrag
02-07-2011, 01:40 AM
I started out with 80mgs of pred and 200mgs of cytoxinin August of 09, off pred 02/10 and cytoxin ing 06/10. Did have shakes of the hands and very terrible cramping of the hands and fingers. Not good for a man that worked with his hands. Any way all has passed and my hands work ok as long as I don't overdo it.
Dale

RCOSSIO
02-07-2011, 02:46 AM
Sangye...I recently read an article, I believe by Dr. Hoffman from the Vasculitis Foundation and he had a study done about the effective use of Cellcept as a maintenace therapy. If I am not mistaken he wrote that Cellcept percentages were actually mediocre than other meds after the patient acheive remission after taking Cytoxan and then switching to Imuran or Methotraxate.

Then I started thinking about when you relapsed while taking Cellcept and I started thinking...is Cellcept a valuable medication to maintain my remission? Anyway, while I was on 3000mg I was doing fine and notice after dropping to 2000mg about six months ago the slight pains for the last three weeks.

BTW...as soon as I felt the "joint" discomfort I immediately ordered labs which I will do them Wednesday Feb 9th and see the Rheumy Feb 16th.

onatreetop
02-07-2011, 02:51 AM
I started on 60mgs of pred. with 100mg of cytox. in June 2009.Pred was up and down the pred. cytox. stayed the same for 13 monthes then switched to methotrexate 25mgs.The shakes were so bad that I couldnt write type hold anything. It was horrible. went to my GP and asked what I could do about it because I noticed my blood pressure went up and the pulse was like a hummingbird. He put me on blood presure meds and Valium to slow everything down and it works. I start shaking badly when it wears off again. So I take it with the modrol and avoid the shakes. Just another med I know but it helps me function so much better. No more people stairing at the red sweating and shaking freak in the middle of winter. I have 2 say I can heatup a room very easily. No coat needed.

Sangye
02-07-2011, 02:53 AM
Richard yes, we had some discussion about that article recently. It correlates with what I had been noticing casually--that people on cellcept seemed to have either smoldering Wegs or more frequent flares compared to those on imuran or mtx. (Not universally, of course.)

The problem with me was that the entire time I was on cellcept I was never in remission. Dr Seo thought I was, but we can clearly see now that I had "rumbling" Wegs. Even though my labs looked great the whole time, I had pretty bad joint pain that worsened following any activity-- a sure sign of active Wegs. When it was clear that the Wegs was flaring, we tried increasing my dose to 3,000 mg. I felt much better but it didn't kick in fast enough and my lungs started bleeding. Dr Seo said if I ever use cellcept again we'd use 3,000 mg.

pberggren1
02-07-2011, 06:41 AM
The first time I used Cellcept I flared within 6 weeks or less. That was at 2g. So the next time I went on it we started at 3g and have not flared since. But I am at 2g now and am beginning to wonder if I am not flaring now with what Sangy calls smoldering or rumbling Wegs. We tapered from 3g in July to 500mg in November. Then we jumped back up to 2g. I see the doc tomorrow so maybe he will have some more insight into this.

Sangye
02-07-2011, 12:41 PM
Phil, since the cellcept interferes with healing your lung infection, it may be that you have to allow for some Wegs activity while you fight the infection. Like if 3,000mg cellcept controls your Wegs 100%, you might have to do 2,000mg cellcept and live with Wegs that is only 80% controlled. It's risky because the Wegs can go wild or do silent damage, but the infection is a more immediate risk. I'd be interested in knowing if that's what your doc is thinking.

elephant
02-07-2011, 02:48 PM
Phil, I am on 2GM of cellcept and cyclosporine and it seems to keep my WG 90% controlled most of the time. I have not reached 100%, there are times when it has been 75%. That is when I increase the Bactrim. Lot of playing around to keep things in order.

pberggren1
02-07-2011, 03:52 PM
Sangye, you are on the ball. That is almost exactly what my doc already said. I asked him if it is alright to reduce the CC to say 1500 and he said no way, you do not want to run the risk of having a full blown flare but at the same time it would be nice to go off totally but is impossible with Wegs. He said the wegs might be slowly waking up but we have to focus more on the lung infection. He said if we don't treat this lung infection right it could mean I may have to have surgery to remove infected areas and he said that is a nasty last resort. He said he worked with lung surgeons back in the UK that had TB and CF patients and it was not a pretty sight. He also said the surgery itself could very likely wake up the Wegs. He said medicince like this is not a science but an art form trying to maintain a balance so one disease will not flare but trying to treat another that needs an immune response. I see him tomorrow afternoon, so I hope to get some answers from him then. If he still thinks that inhaling the Amikacin is worth a try then I am going to do it. I also see a new Pulmo in Regina, 3 hours from here, on Wed. So maybe he might have some helpful insight into my case.

02-07-2011, 07:52 PM
...He said medicince like this is not a science but an art form trying to maintain a balance so one disease will not flare but trying to treat another that needs an immune response.

Beautifull! That's what my doctor says too!
That it 's an art, I mean...

Hope your doctors will have some new insights that might help you, Phill!

Sangye
02-08-2011, 01:49 AM
I'm so glad you found that doctor, Phil. That's the right perspective to have when treating patients. Any doctor (medical or holistic) that tells you that treating any condition is straight-forward cookie-cutter is either incompetent or lying or both.

Dr Seo uses that same phrase and that's one of the reasons we get along well.

elephant
02-08-2011, 03:24 AM
Art and science go together!

drz
02-08-2011, 06:12 AM
Sangye, you are on the ball. That is almost exactly what my doc already said. I asked him if it is alright to reduce the CC to say 1500 and he said no way, you do not want to run the risk of having a full blown flare but at the same time it would be nice to go off totally but is impossible with Wegs. He said the wegs might be slowly waking up but we have to focus more on the lung infection. He said if we don't treat this lung infection right it could mean I may have to have surgery to remove infected areas and he said that is a nasty last resort. He said he worked with lung surgeons back in the UK that had TB and CF patients and it was not a pretty sight. He also said the surgery itself could very likely wake up the Wegs. He said medicince like this is not a science but an art form trying to maintain a balance so one disease will not flare but trying to treat another that needs an immune response. I see him tomorrow afternoon, so I hope to get some answers from him then. If he still thinks that inhaling the Amikacin is worth a try then I am going to do it. I also see a new Pulmo in Regina, 3 hours from here, on Wed. So maybe he might have some helpful insight into my case.

Good luck in finding right balance as you walk the tightrope of treating Wegener's disease and its complications.

RCOSSIO
02-08-2011, 11:30 AM
wow...amazing how this forum is on the money. Even though my joint pains on a scale of 1-5 is a one, I still exercise and ride my bike....BUT BUT BUT BUT....I don't want to take any chances and having it go to DEFCON 5...overnight. I am sure I will probably have to increase it to 3000mg where I was totally controlled.

Plus beach season.."even though for us Floridian is every year" is around the corner and the last thing I need is to also take a high level of prednisone as well and lie in the sand while some good samaritans from the seaquariam are throwing buckets of water to keep me alive. :ohmy::ohmy::ohmy:

for the record I do minimize my sun exposure...