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Started cellcept


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#1 pieski

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Posted 08 November 2008 - 10:31 AM

I just started cellcept yesterday and am wondering if any of you had initial side effects? I am really, really tired today and am hoping that it is just a coincidence :(
~ Teresa~

#2 lizzie

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Posted 08 November 2008 - 11:42 AM

Hi Teresa, I stated taking CellCept nine weeks. the only side effect I noticed in the early days was stomach cramps and loose bowels and that stopped pretty quickly. I don't recall being more tired than usual - but as feel pretty tired most of the time may not have noticed it as a side effect. Hope you have more energy soon
Lizzie

#3 Amanda Thorpe

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Posted 08 November 2008 - 12:51 PM

Hello Teresa

I have been on cellcept over a year and I could not say whether my tiredness is it or the disease. As far as I am aware I don't have any side effects. Way in the beginning I did have bouts of nausea but we were never sure which meds caused it. I believe cellcept prevented further skin progression and has even improved bits.

Having only been on it a day it may be coinsidence as it takes awhile to get into the system I think.

I'm in the middle of a fatigue fest at the moment, no amount of sleep is enough and it can last for weeks but it passes then comes back etc.

I would persevere with cellcept because until you reap any benefits it's difficult to decide whether they outweigh any side effects, also side effects can come and go but the benefits stay. :)

Take care.

Amanda
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#4 Wohali

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Posted 08 November 2008 - 02:19 PM

Amanda,

Do you think the Cellcept is causing the fatigue or is it the Sclero? I'm having severe fatigue the past few weeks where all I want to do is sleep or else sit and vegetate. I barely feel like fixing something to eat even.

#5 Peggy

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Posted 08 November 2008 - 03:53 PM

I've been on the cellcept for about 9 months now. I have terrible fatigue but I think its from the disease itself. I haven't had any side effects that I'm aware of with the cellcept. I have noticed some softening of my skin on the top of my hands only. Other than that I actually had the doseage increased at my quarterly visit in October due to it not providing any noticeable results that the doctor was happy with it. Good luck and I hope you start feeling energized soon and have great results with the cellcept.

Warm hugs,

Peggy

#6 ashu

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Posted 08 November 2008 - 06:36 PM

Hello'

My daughter is on 250mg% two times daily . of course this is alow dose .since 9 months she is on this tablet. she is tolerating well fortunately. you need to check your bloodcounts frequently.

With regards'

DR; DAMAYANTI

M/O ASHU.

#7 Amanda Thorpe

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Posted 10 November 2008 - 04:56 PM

Wohali

I assume the fatigue is the sclero. I get what I call fatigue fests where all I can do is sleep, can last weeks.

Fatigue is a common sclero symptom.

Amanda
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#8 Ardis

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Posted 01 January 2009 - 06:00 PM

Hi everyone, I too just started Cellcept and I must say that I am not comfortable about it. I was diagnosed with scleroderma 10 years ago and have been on at least 6 different medications through the years, none of them helpful. Several years ago Humira was prescribed and I subsequently developed many infections. I was very sick. I discontinued it and swore I would never go on an immune suppressant again. Four days ago, my rheumatologist said it would be a grave mistake if I did not start Cellcept, as I recently developed coronary artery disease that necessitated insertion of cardiac stents and an induced heart attack. My rheumatologist believes my scleroderma caused it all. I'm feeling scared and depressed. So here I am wondering if Cellcept is going to make me deathly ill or will it slow down the progression of my scleroderma and prevent future cardiac problems. Any advice out there? I've just discovered your website. What a blessing.

#9 lizzie

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Posted 02 January 2009 - 12:05 AM

Hi Ardis and welcome to the forum. I can understand that after your past experience that you are wary of taking Cellcept. However, I think the general consensus is that Cellcept causes little in the way of side effects , so the chances are that you will feel fine while taking it. I have been on Cellcept since September 08 and other than mild bowel looseness the first few days have felt fine, and in fact, although those all around seem to have been suffering colds and flu, I have remained cold and flu free. The question of whether it will slow the progression of your Ssc is more difficult. I was prescribed it as my skin had started thickening more rapidly, it still seems to be progessing slowly , but it is only early days (I was told thatCellcept takes 3 months to kick in) and I don't know what I would have been like without the Cellcept. I think others in this forum have had postive effects. If I were in your position I would be inclined to give the Cellcept a try.

Lizzie

#10 Snowbird

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Posted 02 January 2009 - 04:52 AM

Hi Ardis

I can offer no better advice that what you have already received...so I would just like to say hello and welcome...I believe you will find this site most helpful.
Sending good wishes your way!

#11 Jeannie McClelland

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Posted 02 January 2009 - 06:38 AM

Hi all,

I've been on CellCept at 2 grams a day - and like most others, noticed a few side effects at first that could have been attributable to other things. It seems to have stopped the lung fibrosis in its tracks, so I'm obviously comfortable about taking it. I've been on that dosage for about a year and a half, maybe 2 years. Once in a while I need to drop back a bit for a couple of weeks, but that's about it.

The monthly blood checks are an absolute necessity, though.

Fatigue seems to be a major recurring issue with most of us. (See also: Fatigue) and is a frequent topic here on the Forum. I get bouts of it too and am fortunate enough to be able to go take a nap whenever I need one.

Warm wishes,
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#12 jefa

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Posted 02 January 2009 - 07:44 AM

Hi, Ardis and Welcome. So glad you found us here at the ISN Sclero Forums. I have had no experience at all with Cellcept, but you can always use the search forum button above to find previous discussions.

Search results for Cellcept (by topic).
Warm wishes,
Jefa

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#13 Amanda Thorpe

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Posted 02 January 2009 - 12:48 PM

Hello Ardis

I was taking cellcept for 13 months @2grams a day and it improved my skin. Initially I had a bit of nausea but can't be certain in was the cellcept as I was also taking strong pain meds at the time. I would say overall the benefits outweighed any side effects.

However I started getting frequent headaches/migraines for some 6 months and in desperation stopped the cellcept although my rheumatologist was sure it was not the cause. I have been off it now for 4 weeks and the jury's still out regarding the migraines but I am sure it was causing the headaches that came on every couple of days and were bad enough to send me to bed. I assume this based on the fact that they have stopped. Of course at some point soon I will go back on it to make sure this is no coinsidence.

I was only ill with a virus once whilst on cellcept, less frequent than when not on it and no infections.

Cellcept is touted as the most well tolerated immuno suppressant and most people's posts about it have been positive. I suppose you've got nothing to loose and everything to gain by trying it as if you don't like it just stop it, you'll be no worse off just back where you started.

Hope this helps and take care.

Amanda
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