Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Tapering off CellCept


  • Please log in to reply
14 replies to this topic

#1 barefut

barefut

    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 26 June 2008 - 03:40 AM

Hi All,

If you have tapered down or off of Cellcept, what has been your experience with that?

Did any old symptoms resurface? Did present symptoms get worse? Any new symptoms?

Thanks for your input!

#2 Bird Lady

Bird Lady

    Silver Member

  • Members
  • PipPipPipPip
  • 118 posts
  • Location:Southport NC

Posted 26 June 2008 - 04:34 AM

Hi Barefut, I came off Cellcept cold turkey and didn't experience any problems. No worsening of symptoms. I was off for 2 or 3 months and then started Cytoxin in the SCOT study. Can I ask why you're coming off Cellcept? Are you going to start another treatment? Good luck, Birdman
Hugs for All,

Julie (Bird Lady)

#3 Gidget

Gidget

    Silver Member

  • Members
  • PipPipPipPip
  • 201 posts

Posted 26 June 2008 - 06:30 AM

Hi Barefut,
I was on Cellcept for 3-4 weeks and stopped cold turkey with no problems at all.
Regards, Gidget

#4 barefut

barefut

    Platinum Member

  • Topic Starter
  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 26 June 2008 - 04:52 PM

Thanks for your replies Birdman and Gidget,

I have been on 2000mg Cellcept for 2 1/2 years and pulmon. doctor wanted to wean me off since lungs have remained stable. rheumatologist wanted to keep me on for fear I would suffer more muscle/joint pain/stiffness. Pulmon. doctor didn't have any other treatment on the agenda.

I am nearing the time to renew my Patient Assistance with Roche (Cellcept nearly gone) and was wondering if maybe I should just try going off or reducing dosage at least but I am a bit wary so wanted to hear others' experiences.

Thanks for sharing yours.

#5 rlbrussell

rlbrussell

    Senior Bronze Member

  • Members
  • PipPipPip
  • 45 posts
  • Location:Chapel Hill, NC

Posted 27 June 2008 - 06:10 AM

I was tapering off of cellcept slowly and unfortunately my symptoms returned after being completely off for one month. My skin started to get really tight on my legs and after two weeks I had new skin tightening all over my body. So I am back on my 3grams of cellcept and fortunately things have slowed down again.

Rosalinda
Rosa
Diffuse Sclero
dx Jan 2006

#6 LisaBulman

LisaBulman

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,135 posts
  • Location:Massachusetts

Posted 29 June 2008 - 03:11 AM

Barefut,
I don't have any experience with cellcept but I would have a plan in place with your dr.'s. For example if you are tapering off and you feel you are getting worse, you should know what to do immediately so you don't have to make phone calls to your dr and wait for a call back. Good luck on your decision and plaese be sure to let us know what you decide.

Hugs,
Lisa
Lisa Bulman
(Retired) ISN/SCTC List Coordinator
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Fundraiser
International Scleroderma Network (ISN)

#7 RememberingToSmile

RememberingToSmile

    Silver Member

  • Members
  • PipPipPipPip
  • 104 posts

Posted 29 June 2008 - 09:54 AM

I was on 3g/day Cellcept for over a year and I responded incredibly well and the thickened skin on my arms and legs mostly reversed and my larger joints were more flexible than ever. My muscle fatigue was still a problem, though, so we switched over to Methotrexate MTX for maintenance.

We overlapped the drugs for two months then I stopped the Cellcept completely. I had no problems for a few months, then my skin started turning red all over (no itching at first). Then after 4 months, the distressing skin itching, burning and thickening returned. In retrospect, I should have recognized the red skin (it was very red, but not painful...) as an early sign for me.

I went right back on the Cellcept and had considerable relief after 1 month. Now, five months later, the worst areas are slowly loosening up again.

Good Luck - and like Lisa said above, consider talking to the doctor to discuss how to recognize a flare coming on.



-RTS

#8 barefut

barefut

    Platinum Member

  • Topic Starter
  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 15 July 2008 - 02:42 PM

Hi Again Guys,

Well, I have tapered myself down from 2000mg to 1500mg for a week and a half now and already I have noticed swelling in my calves and increased tightening around my mouth, as well as a lot more stiffness in my hips and shoulders.

I am bummed. I was really hoping I could reduce dosage or even go off completely. I don't think I'll be able to. I am going to stick it out for awhile longer though to see if things sort of level off.

Thank you all for sharing your experiences with me. I really do appreciate it!

#9 Peggy

Peggy

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 635 posts
  • Location:Minnesota

Posted 16 July 2008 - 05:12 AM

After the black box warning that came out last week about Cellcept I am inclined to ask my doctor if it's safe to take. I know of some doctors who are taking all of their patients off of it due to the severity of the black box warning. I too have had my skin not be so tight and I also think my lungs are better but I don't want to have any type of brain attack from the Cellcept so I don't know what to do.

Warm hugs,

Peggy

#10 Gidget

Gidget

    Silver Member

  • Members
  • PipPipPipPip
  • 201 posts

Posted 16 July 2008 - 05:57 AM

Peggy,
If you like the immunos, then maybe you can switch to a lower dosage of Imuran or something similar to Cellcept. I did not do well on Cellcept and was off it within the month but the next suggestion given to me was to try a lower dosage of Imuran to replace the Cellcept. Only you know best but I think it takes a lot for the FDA to put out a black box warning -- I mean, look at all the warning signs they had for Viox and it still took them forever to do anything. So, I don't think they are treating Cellcept any different from how quickly they moved on Viox -- and meanwhile all those people on Viox were dying of heart attacks. But don't listen to me -- I'm in that Gleevec trial which can seriously damage my heart muscle -- and I only have one heart! So good luck with your decision. Gidget

#11 waverley

waverley

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 17 July 2008 - 05:56 AM

excuse me but what is a black box warning I also am taking cellcept but am hoping to come off soon thanks

#12 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 17 July 2008 - 06:19 AM

Waverly,
Welcome! I noticed you just joined us.

There was a recent forum discussion about it that you might want to read.

Look forward to hearing more about you!

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)

#13 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 17 July 2008 - 01:04 PM

Hi Barefut,

I presume you mean you might try tapering off CellCept only with your doctor's approval, right? It is certainly not anything to attempt on your own, without your doctor's knowledge and approval.

I'd suggest you make a doctor's appointment to discuss that issue alone and if you need to renew it, I think you'd want to have all your ducks in a row pretty soon.

That's just my two cents worth, of course...and some people find it's not even worth that much! :blink:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#14 barefut

barefut

    Platinum Member

  • Topic Starter
  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 17 July 2008 - 02:49 PM

Shelley,

At my last appointment, my pulmonary doctor suggested I taper down and eventually off. So I decided to try it. My rheumatologist suggested I stay on because she feared going off would negatively affect my mobility (which I think it has already)

I have an appt with rheumatologist on the 5th and will have her sign my Patient Assistance application for Cellcept renewal then. Quack - Quack! :rolleyes: :D

And your 2 cents is worth a million bucks B)

#15 waverley

waverley

    Newbie

  • Members
  • Pip
  • 2 posts

Posted 20 July 2008 - 04:22 PM

thanks for the imformation janey, this is my first time I have joined a fourm and have found it interesting ,also knowing you are not the only one out here having these awful health problems,i have mixed connective tissue disease so so have a little o about for diseases scleroderma being one of them, as I said I am on cellcept and was a bit concernd to read about hte black box, but thank you for sending me the imfo,i am off to see my doctor today so shall be talking to her about this thanks again waverley