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Cellcept Taper

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#1 barefut


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Posted 05 April 2009 - 06:11 PM

Well it's been 2 months now since I went from 2000mg to 1500mg Cellcept. This past week the swelling in my hands returned as well as tightness in my face and jaw which has been worse than it ever has been. I can't open my mouth hardly at all and I'm spitting and drooling when I do. I've chewed up the insides of my cheeks and it feels like my tounge is too big for my mouth :P . My feet are also killing me again.

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?

#2 Amanda Thorpe

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Posted 05 April 2009 - 11:31 PM

Hello Barefut

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.

Take care.

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#3 Jeannie McClelland

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Posted 06 April 2009 - 03:25 AM

Hi Barefut,

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,
Jeannie McClelland
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#4 Sweet


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Posted 06 April 2009 - 03:45 AM

Hey Barefut,

I'm so sorry. That sounds miserable. Please call your doctor and see what he says. *hugs*
Warm and gentle hugs,

ISN Support Specialist
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#5 Kamlesh


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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.
Kind regards,


#6 fragiledancer2


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Posted 06 April 2009 - 10:43 AM

Hi Barefut- Twice in the past 5 years my doctor has taken me off Cellcept cold turkey and my symptoms returned totally by 3-4 months. I am now back on it. If he takes me off again I will ask him to taper it slowly. It seems like many people have diffuse Scl that keeps on going, and does not relent at 3-5 years as some physicans say. That means lifelong immunosuppressants. Bad news-chronic use will lead to other problems. Good news- we are staying alive and living better quality lives. Shirl.

#7 Clementine


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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?