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How Long Have You Been On Cellcept?


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14 replies to this topic

#1 barefut

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Posted 08 August 2007 - 06:38 PM

How long have you been on Cellcept?

If you have been "stable" for a year or more, has your doctor recomended that you switch to something else or go off immunosuppressants altogether?

Thanks,
Barefut

#2 Sarahp

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Posted 08 August 2007 - 11:46 PM

Hi Barefut

I have been on 3000mg Cellcept for one year and have been stable. I am also on 400mg Plaquenil, 5mg Prednisone, Nexium, Coumadin, Nifedipine, Lipitor, and Enalapril. I received chemotherapy of Rituxin/Cytoxin 18 months ago and was then put on Cellcept 6 months later.

Rheum feels I should remain on the Cellcept. If my dsDNA remains negative and other blood tests are normal at my next blood test in 6 weeks I may be reducing the Cellcept dosage to 2000mg.

I am also interested in hearing how others have done who have reduced Cellcept or gone off it after being stable for a year or more. Good question.

Sarah

#3 Colleen

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Posted 09 August 2007 - 12:34 AM

I've only just started cellcept @1000mg. After this month my doctor will increase the dosage. Sorry I can't add any insight to your question but I'm interested in hearing responses.
Wishing Good Health to All,
Colleen

#4 janey

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Posted 09 August 2007 - 03:57 AM

I've been on Cellcept since early April, but on immunosuppresants since August 03. I was off immunosuppresant this year from January through March and my skin started thickening on my hands and swallowing became difficult again. My lung function took a nose dive, so hence the cellcept. I would love to come off immunosuppresants all together, but my body isn't ready for that quite yet.

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#5 Margaret

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Posted 09 August 2007 - 04:42 AM

Hi Everyone,

Can someone explain the difference between the Plaquenil and the Cellcept? Is Plaquenil considered an immunosuppressant or 'just' an anti-malaria drug that happens to work on Sclero? I noticed that Sarah is on both. Does one stay on one med till the symptoms flare up again and, then, switch to another? Just curious...........and still 'giddy' from this morning!!!

Take care, Everyone.
Margaret

#6 Clementine

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Posted 09 August 2007 - 05:44 AM

I am stable. I've asked my Dr. if I would ever go off Cellcept and he said no! That is so weird to me. I wonder what will happen when my body develops a tolerance to it. Won't that happen at some point? I am on the highest dose they currently give sclero patients, 3 grams a day.

I also worry about what happens to the body when the immune system is compromised for so long.
Jen

#7 RememberingToSmile

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Posted 09 August 2007 - 06:08 AM

I've been on Cellcept for about a year - my skin/joint symptoms have been great for many months. I was lucky and had a remarkable response to the Cellcept. We just lowered it from 3000 down to 2000 per day with no recurrence.

I was on plaquenil (400 mg/day) for the past year - just stopped it cold with no noticed problems.

I am also on a small bit if prednisone (tapering) and we are discussing adding methotrexate or IVIG to address a remaining issue with overlapping myositis. If so, we'll try to lower the Cellcept further/faster.

I think it is the general policy at the clinic I attend to start tapering off the Cellcept after stable for 8-12 months with the goal to be off completely with time. Depending on which organs are involved and overlapping issues.

Is this consistent with your doctor's plan/advise?

-RTS

#8 Clementine

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Posted 09 August 2007 - 06:55 AM

RTS,
I am on Cellcept for my lungs, as I have no skin involvement. Do you have organ involvement other than skin?
Jen

#9 Margaret

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Posted 09 August 2007 - 08:03 AM

Hi Everyone,

I asked Gareth's rheumatologist today the same question about Cellcept and Plaquenil. She said...........Plaquenil re-sets the autoimmune responce rather than suppressing the immune system. It helps the body reduce autoimmune tendencies and inflammation.

So.........I guess as long as that works for Gareth, then, there would be no need for the Cellcept or other autoimmune drugs.

Take care, Everyone.
Margaret

#10 Kamlesh

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Posted 09 August 2007 - 08:06 AM

I started on Penicillamine, it helped little to start with, but in a few months it showed no further improvement and my lungs were worsening. So I switched to Cellcept 3000 mg, stayed on it for about 18 months. My last PFT showed not only my lungs have stabilized, but improved considerably due to Cellcept + I think breathing exercises. Also, my skin was soft. So, my pulmonary specialist suggested reducing dose to 2000 mg and my rheumatologist agreed with it.

At first, I started having itchy skin on the reduced dose. I consulted my rheumatologist again and he suggested using some skin care products like prescription cream, lotion as well as non prescription cream. These helped control my itchiness while my body was getting used to reduced dose. Now, I am on reduced dose of Cellcept for about two months and my skin itchiness is going down. My rheumatologist is OK with me to further go down to 1500 mg and I am thinking to reduce it further within few months. We need to remember prime role of Cellcept is to suppress immune system and used for organ transplant patients. It is a strong drug with many side effects including sleep disorder, nose bleeding, and mouth thrush (all of these I have gone through), so my goal would be to continue to reduce dose while controlling scleroderma. One more thing I do is to manage how I take Cellcept.

One of the side effects of Cellcept is sleep disorder and I have worked with my rheumatologist to concentrate dosage of Cellcept during day time as early as possible. He said it is OK to take 3 at one time wait for six hours and take one more instead of taking 2+2 twelve hours apart.
Kind regards,

Kamlesh


#11 RememberingToSmile

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Posted 09 August 2007 - 09:28 AM

Jen-

Luckily, I haven't had any lung (or kidney) issue - no sounds and last DLCO measured 80%. I know I am fortunate.

My worst issues are/were with the skin and muscles. I have several of the GI issues, awkward hands, and some early signs of cardiac involvement that have not progressed at all.

Muscle issues are the significant overlap for me - actually, I had the myositis symptoms first. Cellcept has kept them somewhat under control - but now that my skin issues are resolved, the doctor thinks we need to try another drug (methotrexate or IVIG) to get better myositis control.



You say your lungs are stable - have they improved at all on the Cellcept?

I recall an earlier discussion with my doctor that if I started to show lung involvement while on the Cellcept, we'd consider a move to Cytoxan... Also- I wonder how long transplant patients typically take the Cellcept.

All my best wishes to you.

-RTS

#12 Meg

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Posted 09 August 2007 - 06:04 PM

This is a great question ... and one I just discussed with my pulmy after being on Cellcept for 2 year's. I asked, "When can I expect to stop taking cellcept??" Sorry to say (for all of us in the same situation) that he had no answer. AND, I like this doctor and consider him a sclero "expert" at UCSF. He was honest with me and said that, since cellcept has been given to SD (and lupus) patients for such a short amount of time, he has no data about what happens with patients coming off of it. I have diffuse SD w/ lung involvement and my DCLO has been somewhat stable at between 57% - 62% since starting the cellcept. Also, my skin and joints got quite a bit better and have remained OK. I am a little afraid about being an experiment and stopping the drug to see what happens.... but I guess that is what I am going to do. After my next PFT next month (providing it is still in the same range), my pulmy and I have decided to reduce my dosage by 1/2 and SEE WHAT HAPPENS! I will be happy to report back with the results and appreciate hearing about any similar experiences out there. The only meds I take is cellcept and lisinopril (ACE inhibitor to protect my kidneys). Also, I should mention that I am also careful w/ my diet and take good vitamins & supplements too. Maybe this also is helping. Who knows?!
Best wishes for a happy ending to the experiment!
Meg

#13 barefut

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Posted 09 August 2007 - 07:05 PM

Meg,

I am in pretty much the same boat as you. I have diffuse and my DCLO has stayed between 67% - 70% for the past year.

My rheumatologist told me at last visit that since I have remained stable, pulm doctor may want to (or agree to) switch me to Imuran after I see him at next 6 mo check up in Sept.

They both know of my financial crisis and that I can't afford to pay the 30% my insurance does not cover. I have gone back into debt paying for it this past year and a half.

Anyway, I am a little worried about being a guinea pig too!

What dosage are you on now?

Maybe we can quit at the same time together and publish our own study! :lol:

I have Roche's patient assistance program applicaton ready to take to doctor to fill out but am afraid I will not qualify.

A year ago my rheumatologist said that Imuran would probably be the next choice but they REALLY wanted me to stay on Cellcept. (That made me feel like an experiment.) If they are both immunosuppressants, I wonder what big the difference is besides the price.

Do keep us posted on you!

Thanks,
Barefut

#14 peanut

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Posted 09 August 2007 - 08:59 PM

How long does it take for cellcept to reach full strength?

I'm taking Imuran now and it takes 6 months for full strength. I'm at 6 months and I don't think it's working.

peanut

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my HMO makes me wear a helmet...

#15 Clementine

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Posted 10 August 2007 - 05:45 AM

RTS,
My lungs have remained about the same...they have fluctuated slightly within the last year. Some tests were better, some were worse. The percentage of change was so slight that my Dr. counts them as stable.

I want to go off Cellcept too. I am afraid of it's long term effects.

Jen