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Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/1/2011 12:14 PM (GMT -6)   
Hey guys,
 
For those who are or have been on Cellcept, how long did it take for you to notice improvements/deficits?  Thanks!
Moderator of Lupus and Fibromyalgia forums

37 years old, diagnosed in 2000. SLE, Fibromyalgia, APS, Sjogrens, Raynauds, Thrombocytopenia, Vasculitis, Stroke – 2002, Bilateral sacroilitis, Clinical Depression/PTSD/Anxiety/panic disorder, Optic Neuritis. Prednisone, Cellcept, Plaquenil, Coumadin, Cozaar, Zoloft, Didrocal, Seroquel

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 3/1/2011 2:10 PM (GMT -6)   
Three to four weeks after a couple of weeks ramping up to the full dose, I noticed a few extra hairs falling from my head. Not too many. I think it was more like 2-3 months till I noticed improvement in brain function, which was the BIG symptom that prompted me to try it.

Hang in there,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/1/2011 5:50 PM (GMT -6)   
Thanks Lynnwood,
 
I've been on it for 16 days after starting on 500mg twice a day for 2 weeks, and now 1000mg twice a day.  Not sure how I'm feeling to be honest.  I'm having quite a bit of hair loss, bloating, gas (burping), weight gain, and more joint pain than before.  I was on Imuran for a decade and it just stopped working for me, so that's why I switched over to Cellcept.  I'm hoping these side effects go away.
Moderator of Lupus and Fibromyalgia forums

37 years old, diagnosed in 2000. SLE, Fibromyalgia, APS, Sjogrens, Raynauds, Thrombocytopenia, Vasculitis, Stroke – 2002, Bilateral sacroilitis, Clinical Depression/PTSD/Anxiety/panic disorder, Optic Neuritis. Prednisone, Cellcept, Plaquenil, Coumadin, Cozaar, Zoloft, Didrocal, Seroquel

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 3/1/2011 5:55 PM (GMT -6)   
I didn't notice any bloating, burping, weight gain or more joint pain. But maybe I was so relived that *something* might be helping my cognitive issues that I didn't notice. I admit I lost a year or two in there somewhere between 2002 and the present.

The 18 month course of Cellcept really helped me a lot, and I've continued to improve since then. I hope you get similar results soon.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 3/1/2011 6:03 PM (GMT -6)   
Been on CellCept (actually now it is the generic) for 20 months. Took 2-3 weeks to get up to full dose of 2 pills twice a day. My overall swelling/inflammation started to improve after about 6 weeks. about 2 weeks after that I realized I was "stronger". I could do more, remember more and (I know this sounds funny) do two or more things at once. My concentration had improved! I have noticed that my hair thinned out quite a bit and I do not seem to have as much muscle mass as I used to but both of those could also be signs of aging. LOL!

Good Luck!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/1/2011 6:09 PM (GMT -6)   
Thank you ladies!
 
Fran, are you taking Myfortic, the generic name?  Is it exactly the same as the brand name?  It would save me $100/month if I switched to the generic.  It's definitely worth thinking about before I need to order my next prescription.
 
I hope it works as well for me as it has for you both!
Moderator of Lupus and Fibromyalgia forums

37 years old, diagnosed in 2000. SLE, Fibromyalgia, APS, Sjogrens, Raynauds, Thrombocytopenia, Vasculitis, Stroke – 2002, Bilateral sacroilitis, Clinical Depression/PTSD/Anxiety/panic disorder, Optic Neuritis. Prednisone, Cellcept, Plaquenil, Coumadin, Cozaar, Zoloft, Didrocal, Seroquel

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 3/1/2011 6:21 PM (GMT -6)   
Hi Ginny,

The name on the bottle is Mycophenolat 500 mg tablets. I took name brand for the first 4 months or so and then the generic came out and I switched. The generic works as well for me as the name brand did. And I save over $100.00 a month in copay on just that one drug! Hope it works for you. I tried Imuran first and a severe reaction. The CellCept was a much better fit for me. Hope it goes well for you!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/3/2011 10:42 PM (GMT -6)   
You're not going to believe this.... I had an adverse reaction to the Cellcept when I started taking 1000mg x 2 daily.  Started that dose last Sunday and ever since then I have been having weakness, dizziness, balance issues, strange "head" buzzing, no appetite, flu symptoms. So I called my rheumy and her nurse told me to immediately stop taking it.  I'll talk with my rheumy tomorrow.  Good thing this was discovered before I shelled out another $400 for my next prescription! 
 
I was on Imuran for 10 years and it just stopped doing its job.  Now I don't know what I'll be taking.... Cyclosporine is overkill as I don't have any kidney involvement.  Cytoxan is overkill too.  I wonder how I'd do just on Prednisone?  Hmmmmm.  A conundrum.
Moderator of Lupus and Fibromyalgia forums

37 years old, diagnosed in 2000. SLE, Fibromyalgia, APS, Sjogrens, Raynauds, Thrombocytopenia, Vasculitis, Stroke – 2002, Bilateral sacroilitis, Clinical Depression/PTSD/Anxiety/panic disorder, Optic Neuritis. Prednisone, Cellcept, Plaquenil, Coumadin, Cozaar, Zoloft, Didrocal, Seroquel

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 3/3/2011 10:48 PM (GMT -6)   
I could be wrong, but I think the "big three" are Imuran, Cellcept, and MTX. So maybe MTX will be next for you.

It's just so strange what works for each of us, and why we have such different responses. Imuran never did do anything for me, but Cellcept was a lifesaver.

Best wishes!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

FW
Regular Member


Date Joined May 2007
Total Posts : 482
   Posted 3/4/2011 12:04 AM (GMT -6)   
Ginny, Checked in to see how things were going and I am so sorry you reacted to the Cellcept. This is such a frustrating disease. Hope the reaction passes and you feel better, quickly.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim, Zantac.
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.

onei
New Member


Date Joined Mar 2011
Total Posts : 3
   Posted 3/9/2011 8:16 PM (GMT -6)   
I'm new to this forum. I'm on my third relapse of TTP. There associating this disease to my auto-immune disorder. The Mayo Clinic is calling it Mixed Up Connective Tissue Disease. Sjogren's, Scleroderma, Lupus etc. I was originally DX with this back in 1977 and have been mostly in remission all this time. Yes, I've had the achy/stiff joints and such but nothing I couldn't deal with. I relocated my family from the damp Pennsylvania climate to the dry Arizona climate and believe it or not it helped deal with the auto-immune issues. Last July the TTP hit and I've had two relapses since. I'm in the second one right now going through plasma exchanges and hence why they want to try CellCept to see if they can slow this disease down. I'm looking for individuals who are on CellCept that can answer questions like when to take it, what not to take it with etc. I'm on several meds that seem to have at least a small side interaction with this drug so I'm trying to figure out when to take all these without causing each other an issue. Can I take it with nexium in the morning or does it have to be taken on its own? Do I take with meals or on an empty stomach? Will it mix with my blood pressure meds; Metropolol, Lisiniprill and Minoxidil? How about my supplements; Probiotics, magnesium, calcium, zinc, B-Complex, B-1, Folic Acid? Any feedback will be welcomed. TIA wink

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 3/9/2011 10:55 PM (GMT -6)   
www.drugstore.com/pharmacy/drugchecker/default.asp is a very good place to check interactions between medications, including over the counter ones
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde
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