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JJ-Knitter

How long on CellCept

9 posts in this topic

How long are most people kept on CellCept? If there are no serious side effects, can a person be on it 'forever'? How about if things seem to be stable? Can it be discontinued without the scleroderma flaring up again?

I know that with things like cyclophosphamide there's usually a maximum recommended treatment duration, but I don't think I've ever seen any thing like that for CellCept or Imuran.

Happy Autumn to all us Northern Hemisphere folks and I guess it's hooray for Spring for the folks below the equator!

JJ

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Hi JJ, I only started taking CellCept 3 weeks ago. I asked the rheumatlogist how long I would be on it. He said that in rheumatology, if it appears to be working and no serious ide effects I would take it idenfinitely. I did ask that in that case how do you know whether it is the Cellcept working or just a natural remisssion in the disease. He didn't really answer that one- think he thought I was being difficult!

 

Lizzie

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Hi JJ & Lizzie ,

 

I find this an intersting question because I have asked the same about my son being on the Plaquenil. The rheumatologist said that as long as it is working and there are no side affects, then he will stay on it. I got the impression that they really don't know......they are afraid to take him off it for fear that the UCTD/Sclero will flare up worse than before. I wonder if there are studies pertaining to these diseases once taken off meds?

 

Take care, Everyone.

Margaret

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Hello All

 

I am into my 7th side effect free month of Cellcept. My rhuematologist mentioned 1 to 3 years and when the disease plateaus and becomes inactive Cellcept will stop. This then assumes the disease plateaus and becomes inactive in 1 to 3 years but I have also been told this period can be 1 to 5 years. Guessing then you could be on Cellcept for 5 years.

 

It must be a drug that can be used indefinately because organ transplant patients use it and they nust be on it for years or forever.

 

For myself I will be on it until the disease plateaus which I hope will be within 3 years.

 

Take care

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi JJ ~

 

In the beginning, my rheumatologist and pulmonologist both suggested 2 years and then a taper off. I have been on 2000mgs for just over 2 1/2 years.

 

At the 2 year mark my rheumatologist suggested I stay the course for fear that going off would negatively affect my mobility since that is where I have been having the most problems. However, with my pulmonologist's blessing, I attempted a taper and felt it immediately. rheumatologist was right and I am staying on Cellcept at 2000mgs. I have tolerated it very well and continue to have my bloodwork done every 3 months.

 

It is true that transplant patients do take Cellcept for life. So as long as one tolerates it well and has labs checked regularly, I don't see anything wrong with staying on it if it seems to be helping.


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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I was first on Cellcept for a year, during which it stoppped and reversed most of my Diffuse skin issues. It was an amazing drug for me.

 

The original plan was to be on it for around 2 years. (first at 3g/day then 2 g/day maintenance) However it didn't keep my muscle/myositis and joint issues under control, so they tried switching me to another med. It seemed to be working but then my skin symptoms flared dramatically. Oops - too early.

 

Now I've been on both drugs for awhile and they are trying via IVIG to get me down to only the Cellcept again. They watch me for anemia, mostly because of the two medications, not just the Cellcept. My expectation is that within a couple years, I should be able to taper again.

 

Thank goodness the Cellcept worked on my skin symptoms the second time, too.

 

 

Margaret- I too have heard that people can be on Plaquenil indefinitely; as long as you watch for retina problems. I was on it before my skin symtom exploded. My opthamologist said problems are quite rare, but to come in for field testing (retinal) and exam once a year. I've talked to many with Lupus and RA who only use the Plaquenil to keep theor disease under control.

 

-RTS

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JJ,

I've been on cellcept for 1.5 years. My rheumatologist said that if my next pft shows that the lungs continue to be stable that he would start weaning me off it. My next pft is in January. As far as coming off it completely, it's unknown. I was off all immunosuppressants for about 4 months in 2007 and some symptoms such as skin rash and difficulty swallowing started to come back. The swallowing problem never corrected itself once I started on cellcept so I go in for a barium swallow test tomorrow.

 

Since cellcept is an immunosuppressant, I would "guess' that as long as you show you need it, one could stay on it indefinitely. That's between you and your doctors. I know people that have been on Methotrexate for many, many years. Another one of those person to person decisions.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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JJ,

 

I've been on Cellcept since February of this year. So far no adverse side effects or complaints. Since I'm only on two medications it would be easy to pinpoint if there was a problem with either. The other one I take is pain medication for my arthritic pain and I've been taking that for 10 years now. Also no side effects.

 

Coincidentally my youngest brother has been taking Cellcept for his heart transpalnt procedure and he hasn't had any problems with the medication either. If anything the symptoms he does deal with are connected with his transplant and the other multiple medications.

 

For me Cellcept is the only drug that works to keep scleroderma from resurfacing. I just have to be careful to avoid being around people that are sick or making sure I get my flu shot once a year. I see my rheumatologist every three months and have regular tests done to monitor my health. Like Janey, I'll probably be on it indefinitely too.

 

 

Hugs,

Razz


Live well, Laugh often, Love much

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Hi Razz and all,

 

Thanks for the input! I'm at the 15 months stage and it's not causing me any problems. I've achieved stability (not necessarily mental stability, mind you) and not had any side effects. It's kind of become my security blanket. I should have thought about the transplant folks - one of my closest friends is 10+ years on a successful kidney transplant and has taken CellCept almost the entire time.

 

Hugs to you all!

 

JJ

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