Posted 05 April 2009 - 06:11 PM
So, is it the taper or is it a flare? Seems like my flares usually have more to do with all over pain, stiffness and fatigue rather than isolated symptoms, so when I see my Pulmonologist Friday I am telling him I want to go back to 2000mg.
Anyone else have the same experience with a taper from Cellcept?
Posted 05 April 2009 - 11:31 PM
Sorry, you sound in quite a bad way.
I went from 2000mg of cellcept per day to zero overnight for 8 weeks and I don't remember any differences and certainly nothing like you've mentioned.
Speak to your doctor to see what they say, as always the difficulty is whether its meds or a flare or a change in the disease process, and sometimes we never know.
I have again abruptly stopped cellcept a few days ago and no noticable differences but then it's early days I guess.
I hope the doctor can give you useful information as well as symptom relieving treatment.
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
(Retired) ISN Sclero Forums Assistant Manager
(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)
Posted 06 April 2009 - 03:25 AM
My rheumatologist 'played around' trying to find a dosage that would leave my blood counts at an acceptable (albeit low) level, so I've been up, down, up, and down again. I think I've had a very mild increase in sypmtoms, but nothing like what you describe.
Hie thee to a doctor!
Best wishes and warm hugs,
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network
Posted 06 April 2009 - 10:36 AM
I stopped Cellcept completely in August 2007 from 3000mg due to low blood counts.
I am glad that I had no side effects or flare-ups.
Posted 06 April 2009 - 10:43 AM
Posted 07 April 2009 - 03:51 AM
I have been on and off Cellcept too, stopping cold turkey many times. I've not noticed anything odd happening. I sure hope you can get this figured out.
How low are you all's blood counts while on Cellcept? Mine are on the low end of normal. I must be lucky.
Do ya'll take an iron supplement?