CellCept (mycophenolate mofetil): Qu...

CellCept (mycophenolate mofetil): Quarter of patients in small...

There are 134 comments on the About.com story from Nov 24, 2005, titled CellCept (mycophenolate mofetil): Quarter of patients in small.... In it, About.com reports that:

Treating lupus patients suffering from kidney inflammation with CellCept may be more effective in inducing remission than treating them with the standard regimen of intravenous cyclophosphamide .

Join the discussion below, or Read more at About.com.

Kels HELP

Carlsbad, CA

#106 Jun 1, 2009
I have at times had anger towards my mother because she would never stop smoking .Because I was sick at
birth with the worst Asthma I did not come home for weeks from the hospital because I needed this see through tent that would zip around my bed and blow my breathing treatment all night. The Doctors her Please do not smoke in front of that child she did nothing to help me and I get this picture of a baby that is me trying to breath in my smoke filled blanket.
I had a big zest for life and fast forward this story to Hawaii about 10 years ago I wanted to move there and open a private snorkeling business my Asthma was a pain but I dealt with it I got all kinds of side effects except pimples and gaining weight. Now here is the son or a bitch! All of a sudden I cant breath it was nothing like Asthma. I had just woke up that mourning and tried to bend down to get something and I thought I was dying I was fine as long as I did not move. A ton of 911 calls I get the news I have Pulmonary Fibrosis
I knew it was bad the doctor called my mother to fly in to talk it was that serious. She shows up and says she could night have me come home (My mother lives in a 6 bedroom house) The doctor proceeds to tell UCSD is the best place for me its 40 miles from your house. NO ok she gone. My doctor did what he could I did mexotrate I did interferon gamma 1 B for over a year and half and 2000mg of CELLCEPT and mucuamist please excuse my spelling. I was 36 years old and finally I doubled my weight I always weighted 140 lbs NOW my teeth have rotted oh yeah I am on o2 24 hours a day plus I cant read.And my hair is falling out.
There is a statement that they say sometimes the cure is worse then the disease but with what I have there is no cure for it! I saved my money to come to north county and go to UCSD but I have to tell you I dont know myself anymore. Yeah my Mother lives 20 miles away and has never come see me in ICU here or seen me at all.
Please anyone help me I am so scared there is sooooooooooo much more but you would not believe it.
I am a good woman and a world traveler, musician, and a poet I love people, I love to surf, scuba dive,
sit with friends and drink nice red wine and talk. I am just a shell of who I used to be.
Please any takers on this subject? I am alone, Someone help me I am scared.

Please write me here or write me at [email protected]

Sincerely,
Kels
MPA

Graettinger, IA

#107 Jun 1, 2009
Freida wrote:
I have been taking CellCept @2yrs. I am having trouble with insurance wanting to pay for the medicine in the mg strength that I need. Has anyone encountered this problem? It seems like they only want to pay for the medicine if you have had a transplant. Any suggestion would be greatly appreciated.
I take CellCept for MPA, and like you, have not had a transplant. For my insurance company (Humana) I have to hae a completed "Prior Authorization Form" completed by my Dr and sent to the company to get coverage. I am having to repeat that step now to see if I can get the generic!(You would think the company would be glad to have me buying the cheaper version!) Good luck!
Kels Sorry m pity pot

Carlsbad, CA

#108 Jun 1, 2009
Sorry good hearted people I really wrote a book! I should just stuck to the side effects. Last night was just a hard night. I need so much help I dont even know where to start. Last night I pulled out a whole chunk of my hair out it left a bald spot I just cried and I have always weighed 140 at 5'6 now I have gain my weight and I look like a freak of nature it does not look like fat my arms are huge I my huge! My legs are so swollen that I have to make a opening place on my foot so all the water can drain out. I swear it drains about an 8oz glass there is some blood but not much. My teeth have broken off! My eyes are so bad and I am a musician and I could not play because my fingers were cramping or I am out of breath I love life and this is tuff for me. hate this water weight does anyone know anything to help start getting the weight off? All of this is from except Prednisone and Cell-cept at 2000mg and the Prenisone is at 80mg.

Please write me at [email protected] or here on this site Above is a URL for YouTube watch it I love to when I feel down.
Thanks
Kels
MPA

Graettinger, IA

#109 Jun 1, 2009
Kels HELP wrote:
I have at times had anger towards my mother because she would never stop smoking .Because I was sick at
birth with the worst Asthma I did not come home for weeks from the hospital because I needed this see through tent that would zip around my bed and blow my breathing treatment all night. The Doctors her Please do not smoke in front of that child she did nothing to help me and I get this picture of a baby that is me trying to breath in my smoke filled blanket.
I had a big zest for life and fast forward this story to Hawaii about 10 years ago I wanted to move there and open a private snorkeling business my Asthma was a pain but I dealt with it I got all kinds of side effects except pimples and gaining weight. Now here is the son or a bitch! All of a sudden I cant breath it was nothing like Asthma. I had just woke up that mourning and tried to bend down to get something and I thought I was dying I was fine as long as I did not move. A ton of 911 calls I get the news I have Pulmonary Fibrosis
I knew it was bad the doctor called my mother to fly in to talk it was that serious. She shows up and says she could night have me come home (My mother lives in a 6 bedroom house) The doctor proceeds to tell UCSD is the best place for me its 40 miles from your house. NO ok she gone. My doctor did what he could I did mexotrate I did interferon gamma 1 B for over a year and half and 2000mg of CELLCEPT and mucuamist please excuse my spelling. I was 36 years old and finally I doubled my weight I always weighted 140 lbs NOW my teeth have rotted oh yeah I am on o2 24 hours a day plus I cant read.And my hair is falling out.
There is a statement that they say sometimes the cure is worse then the disease but with what I have there is no cure for it! I saved my money to come to north county and go to UCSD but I have to tell you I dont know myself anymore. Yeah my Mother lives 20 miles away and has never come see me in ICU here or seen me at all.
Please anyone help me I am so scared there is sooooooooooo much more but you would not believe it.
I am a good woman and a world traveler, musician, and a poet I love people, I love to surf, scuba dive,
sit with friends and drink nice red wine and talk. I am just a shell of who I used to be.
Please any takers on this subject? I am alone, Someone help me I am scared.
Please write me here or write me at [email protected]
Sincerely,
Kels
I am feeling so much compassion for you right now.... I am a church goer in Iowa, and I feel that there are always good people who are willing to give you moral support when needed here in the "heartland" and I would hope also in California. I understand your anger at your mother, but that is something you must try to leave behind you and concentrate on yourself. I would suggest that there are probably support groups where you can meet for conversation and counseling from others who are facing similar scary situations. There are probably Tai Chi groups (there are 'chair' Tai Chi groups) that you could join and the meditation involved in that would be good for your breath control and peace of mind. The main thing is to not try to face it alone. Prayer, meditation and contemplation are very helpful to see you through difficult times. God bless you.
MPA

Graettinger, IA

#110 Jun 1, 2009
Kels Sorry m pity pot wrote:
Sorry good hearted people I really wrote a book! I should just stuck to the side effects. Last night was just a hard night. I need so much help I dont even know where to start. Last night I pulled out a whole chunk of my hair out it left a bald spot I just cried and I have always weighed 140 at 5'6 now I have gain my weight and I look like a freak of nature it does not look like fat my arms are huge I my huge! My legs are so swollen that I have to make a opening place on my foot so all the water can drain out. I swear it drains about an 8oz glass there is some blood but not much. My teeth have broken off! My eyes are so bad and I am a musician and I could not play because my fingers were cramping or I am out of breath I love life and this is tuff for me. hate this water weight does anyone know anything to help start getting the weight off? All of this is from except Prednisone and Cell-cept at 2000mg and the Prenisone is at 80mg.
http://www.youtube.com/watch?v =5Mio5-zXZnIXX
Please write me at [email protected] or here on this site Above is a URL for YouTube watch it I love to when I feel down.
Thanks
Kels
I am glad you are in better spirits today, but your health situation is so serious, I can understand why you would have down times. I have been on CellCept for 5 years, although not as strong a dosage as yours, but I don't think it is causing your fluid retention. If you ever get to reduce or quit the Prednisone, that should help.
fatmabibi

UK

#111 Nov 1, 2009
I diognise with lupus when i was pregnet. my pregnancy wasn't success.afterwards doctor put me on cellcept and prednisolone and my results are verygood but I gain weight 3stone.Nearly 2 years since i am taking cellcept.
Rick

Chester, VA

#112 Dec 13, 2009
CCA wrote:
I started taking Cellcept for scleroderma-Went on for 3 weeks-felt really sick, weak. Don't know if it was the medication or the disease. Went off for 2 weeks and felt great. Well, started back on it this week-hopefully I won't feel like that again.
<quoted text>
I have scleroderma now for about 7 years and skin, lung and espho are not good. I have been on the mycophenolate for 2 week so far and I just feel jittery and can't sleep but I'll have to see how it goes.
Rick

Chester, VA

#113 Dec 13, 2009
I have scleroderma now for about 7 years and skin, lung and espho are not good. I have been on the 1000mg mycophenolate and 60mg prednisone daily for 2 week so far and I just feel jittery and can't sleep and not that hungry but I'll have to see how it goes.
Rick

Chester, VA

#114 Dec 13, 2009
MPA wrote:
I have been on 1000mg Cellcept daily for MPA since 2005. I notice no side effects. I did try to go off of it for about a month during this time and had a flare and had to go back on it and also take Prednisone to control the MPA. If anyone else is dealing with MPA, I would like to hear from them.... it is also a 'lonely' disease. No one understands the limits it puts on me because it isn't obvious.
I am very concerned about the cost and would like to know if anyone has read anything about a generic version since the patent expires in a month!
I am on Mycopheloate 2000mg that is the genric
Sylvia

Susquehanna, PA

#115 Dec 19, 2009
I have bullous pemphigoid which was diagnosed 12 years ago. I was on prednisone until this past Oct. My dermatologist prescribed cellcept because of bone loss, and the prednisone no longer controlled the blisters. I have dropped some of the prednisone weight gain, but the blistering continues at 2500 mg of mycophenolate. The only side effect that troubles me is nausea. I'm hoping this will decrease as time goes by. Anyone have experience with cellcept for pemphigus or pemphigoid?
MPA

Manning, IA

#116 Dec 19, 2009
I have posted here about the frustration in trying to get a cheaper price now that generic Cellcept is availaable. I am in the 'doughnut hole' and have to pay the full price. Even after the generic was available it was cosing over $300 per month for 1000mg daily. I was ready to start making phone calls wherever I could and the last time I went it was only $95! Finally! I am hopeful that it will be even cheaper as time passes, because I feel that i will be taking it indefinitely.
Ren

Bedford, TX

#117 Feb 4, 2010
Does. Anyone know how long it takes for cellcept to lower protien? I have dx with lupus and kidney invobement.
Kerry Shakarjian

Buffalo, NY

#118 Feb 22, 2010
Lisa wrote:
I have been on Cellcept for nearly 5 months and have seen no effects or improvement of my Myasthenia Gravis. I am working diligently to get off the prednisone as it does not agree with me AT ALL. I have heard that Cellcept can cause cancer. Is it worth it? Especially since I haven't seen it be worth my while so far.
Lisa,
My mother just started taking Cellcept for the same exact reason as you, to get off prednisone while treating MG. I'd like to know if you've had any success in the past few years since your posting above and what you've learned about the cancer part. My mother is in Niagara Falls, NY but I live in Denver as well.

Thanks for your reasponse!
Rick

Chester, VA

#119 Apr 17, 2010
janie wrote:
I have just started Cellcept 2g a day for 2 months now for scleroderma and lung fibrosis. It may increase to 3gr a day. has anyone experienced hair loss? if so when did it start and how bad did it get?
I also have scleroderma with lung fibrosis, and raynalds. I am taking the same thing but no hair loss
Nutritionist1

Brockville, Canada

#120 Jul 26, 2010
My grandmother has pulmonary fibrosis/interstitial lung disease and is currently starting CellCept to ween off of Prednisone. None of the family likes the idea of the possible side effects. I am currently studying for my Master's Degree in Holistic Nutrition. I know from my studies and my own family's experience with auto-immune disease,(my brother has Crohn's Disease, but instead of steroid treatment chose to control his symptoms with diet changes and supplements and is doing wonderful--- no symptoms for 2 years). Most auto-immune diseases are triggered by common food allergies or sensitivities, such as dairy, wheat/gluten, soy, etc. and stress. Has anyone been to a Holistic MD or received Alternative treatment for pulmonary fibrosis/interstitial lung disease?
*Also, I would highly recommend to read The Maker's Diet by Jordan Rubin, ND; Eat Right 4 Your Type; and Ultra Prevention by Dr. Mark Hyman, MD.
These books greatly helped my brother, who also saw a Holistic MD and Nutritionist for his auto-immune disease.
Eleanor Reese

Bethlehem, PA

#121 Aug 6, 2010
Kathy wrote:
My sister-in-law was diagnosed with scleroderma about 5 years ago. Up until now,it has most affected her skin and esophagus, but recent lung studies have shown pulmonary fibrosis and the doctor is wanting to put her on CellCept. He says there are a lot of bad side-effects, but didn't really tell much more. Has anyone out there been put on CellCept for scleroderma? We could really use some information.
Reply: I have scleroderma & have been on Cellcept for about 2 years with no side effects. I usually take 2 pills @500 mg each every day. No stomach problems with the pill.
gina

Phenix City, AL

#122 Mar 23, 2011
Lisa wrote:
I have been on Cellcept for nearly 5 months and have seen no effects or improvement of my Myasthenia Gravis. I am working diligently to get off the prednisone as it does not agree with me AT ALL. I have heard that Cellcept can cause cancer. Is it worth it? Especially since I haven't seen it be worth my while so far.
i have mg and suppose to start celllcept ,but cant seem to bring myself to take it ,,im scard
gina

Phenix City, AL

#123 Mar 23, 2011
i have myasthenia gravis and suppose to start cellcept 2 months ago ,but i just cant seem to do it.ive been through so much, just dont want a nither let down
MPA

Villisca, IA

#124 Mar 23, 2011
I have commented previously that I have been on 1000mg per day of Cellcept since 2005 and have no side effects. It takes care of my problem, which is one of the many auto-immune diseases, microscopic polyangiitis.
Moni

Rochester, NY

#125 Apr 22, 2011
Martha wrote:
I have MS and taking Copaxone. It doesnt seem to be working effectively. My doctor wants to try a combination of the drug Cellcept and Copaxone for my therapy. Has anyone tried it with Copaxone? I would appreciate any response. Thank you.
I have been on Copaxone and Cellcept for 7 years now and have had remarkable results. I have had MS for 16 years. The course of the disease has been very aggressive. Before I started this treatment, I was about to go into a wheelchair. I was experiencing almost every symptom associated with MS and continued to sustain more and more damage (i.e. increased lesions). Once I started this combination therapy, within a year it was almost as if I no longer had MS and my last three MRIs showed not only no new damage, but also healing. Unfortunately, my neurologist cannot prescribe the Cellcept anymore and I am having difficulty finding a new neurologist to continue this combination therapy. They want me to only take the Copaxone and I do not want to do that. Without the Cellcept, I fear another relapse that I may not recover from. I understand the doctor may not want to take the risk associated with Cellcept, however, it is my risk to take. I feel it is a miracle treatment and the closest thing to a cure.

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