Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.



  • Please log in to reply
3 replies to this topic

#1 Vanessa


    Senior Bronze Member

  • Members
  • PipPipPip
  • 94 posts
  • Location:Teddington Middx UK

Posted 04 May 2010 - 09:45 PM

Hi all,

I started on Cellcept 500mg morning and night but my WBC dropped too low within 10 days and I was taken off for a week then restarted on just one tablet for a week then, when all was ok, back up to 2 a day.

I have been on this dose for 2 weeks and my bloodtest yesterday has shown my wbc to be right back at the lowest allowed point.

I am wondering what kind of dose others are on. If I had to go down to, say, just one tablet a day would that be effective. I am reeally hoping that I can tolerate Cellcept as it seems so good.

Also, my long awaited and oh so exciting holiday Scandinavian cruise is on the 22nd of this month so I am crossing everything that I get sorted before I go.


#2 janey


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,113 posts
  • Location:New Mexico

Posted 05 May 2010 - 09:56 AM

I feel that you need to have a serious discussion with your doctor to determine if cellcept will even work for you. I have no idea what the minimum dosage is (I have no medical training what so ever), but the maximum dosage is 3 grams/day or 6 tablets (according to my rheumatologist). I was started off at 4 tablets per day and then increased to 6. My WBC has been unaffected by the cellcept (it's checked monthly). Since our bodies are all so different and since scleroderma affects each of us differently, maybe cellcept isn't the right immunosuppressant for you (if indeed that's what is causing the drop in WBC). Please discuss this with your doctor. There are other options.

Hope you have a marvelous Scandinavian cruise! Sounds like fun.
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,925 posts
  • Location:U.K.

Posted 05 May 2010 - 10:21 AM

Hello Vanessa

Janey's right you need to speak to your doctor/rheumatologist because you may not be able to tolerate the Cellcept. If you can't it's not the end of the world as there are other immunosuppressants like methotrexate.

You could give the specialist nurses at the Royal Free a call and see what they can suggest.

Take care.
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)

#4 Vanessa


    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 94 posts
  • Location:Teddington Middx UK

Posted 08 May 2010 - 03:17 AM

Thank you for your feedback on this. Your views are of such value and I really appreciate you.

I saw Doctor Ong at the Royal Free and he said that as my skin tightening and thickening is quite rapid - he could see quite a difference since I was there before 6 weeks ago- it was important for me to keep trying with the Cellcept staying on 2 even if my WBC falls a little below the 3.5 reccomended.

He then wants me to try and work up to 4 a day but not before I go away on 22nd of this month.

Fingers crossed. I do feel quite sickly though.