Comment from: Mrs V, 35-44 on Treatment for 1-6 months Published: December 23

My 45 year old husband was given CellCept in May 2008 to help his kidney function improve following a 2005 bone marrow transplant for Leukemia. The CellCept caused a rare but fatal brain virus called PML of which we received no warning. My husband lost his sight, all bodily functions, laid in a hospital bed from July 29, 2008 until he died in my arms on September 20, 2008. His doctor described PML as having a slow stroke everyday.

Related Reading: cellcept | leukemia | stroke

Comment from: 55-64 on Treatment for 2-5 years (Patient) Published: October 31

CellCept replaced prednisone as treatment for autoimmune hepatitus after finding I was allergic to all normal treatments for this disease. I have had no adverse effects.

Related Reading: prednisone

Comment from: Kathy, 55-64 on Treatment for 10+ years (Patient) Published: April 01

I have had lupus for over 25 yrs . Have dealt with Chronic kidney failure for 15. Tried lg. dosages of prednisone and IV cytoxin for over 2 yrs. Many anti-inflammatory drugs. Then Cell-Cept. I would be on dialysis & transplant list had this drug not been used. It has stabilized my creatinine level at around 2. I take 2000 mg. daily. I have less joint pain now and function better than 20 yrs. ago. For those who are experiencing diarrea - once your system has gotten used to the med and your condition improves - often a lower dosage helps prevent diarrea. I also found that the generic version (possibly something in the coating) caused stomach "rolling" and distress and switched back to original Cell-Cept. This drug is a life saver, but lots of bloodwork will be necessary. Lupus is livable. I am a walking example and so thankful to be alive.

Related Reading: lupus | kidney failure

Comment from: Vic F, 65-74 Female on Treatment for 1-2 years (Patient) Published: October 27

My Doctor is using CellCept to treat my MG. Other Meds did not work. This works very well.

Comment from: 25-34 Female on Treatment for 1-2 years (Patient) Published: November 11

I developed a very rare problem with swelling in the optic nerve in my eye. Tests showed it was an autoimmune problem. I was put on a steroid to reduce the swelling in the optic nerve. Imuran made me very very sick so I was put on Cellcept knowing it had never been used in any case similar to mine, but it seems to have worked very well up to this point and has gotten me off the steroid I have been on.

Related Reading: imuran | cellcept

Comment from: 45-54 on Treatment for 2-5 years (Patient) Published: September 22

I have had good luck with this drug. I was concerned when I found out that it can cause bad brain viruses. I tried to get off it and as I tried to wean myself off all of my MG syptoms started to come back and I didn't want to go to the depths of hell I was at before so I decided to take my chances. I feel like I am playing Russian Roulette but I don't feel like I have a choice.

Comment from: Dr. CMS, 45-54 on Treatment for 1-6 months (Patient) Published: December 28

I was prescribed CellCept for severe, progressive, ocular MG in early Oct. I have been on the drug 3 months but have developed severe taste perversion, ageusia, a horrible sick, mold/dead salmon taste in my mouth, nausea, abdominal pain, and diarrhea. If I eat a banana it tastes like I am eating the skin/peel of a bananna. The GI intolerance is going to make me stop taking the drug. I have no appetite and have lost weight. My ocular MG is better, but I am also taking high dose steroids. Rest is my best medicine.

Related Reading: mold | abdominal pain

Comment from: Backroadwalker , on Treatment for 2-5 years (Patient) Published: November 12

I take 1750 mg of cellcept per day for an autoimmune disease called dermatomyositis. When my doctor and I were looking for solutions to managing this illness, we went through many other drugs before we got to cellcept. After having violent nausea from the other drugs, I was so grateful to find cellcept- especially after my doctor mentioned it was my last hope! I have been on it for 2 years now and am happy to report that for the most part, the disease is managed (I have to also take Amlodapine and prednisone, but they are pretty low doses). I found that I am able to take cellcept only once a day, at night (versus the recommended 2x day), with my doc's permission and because my bloodwork is ok with that setup. Otherwise, I became too fatigued taking it during the day. I do, like others here, experience thinning hair. I find that I prefer the name brand to the generic, and this might relate to dietary sensitives I have. One of the generics makes me really fatigued, but when I went back to the name brand and another generic, I was ok. I don't really know what to expect long term at at age 39, I hope not to be on it forever. Still, I'm extremely grateful for this drug- it's helped me conquer a pretty terrible disease!

Related Reading: cellcept

Comment from: 45-54 on Treatment for 2-5 years (Patient) Published: May 14

I have been taking Cellcept for 2 years; for Scleroderma with ILD (lung disease). Currently taking 1500 mg BID. Also taking prednisone; now down to 15mg from 60 mg. My Drs are weaning me off the prednisone due to side effects from being on it for 3 yrs. After reading comments from others, I'm thinking I have more side effects related to Cellcept than I previously thought. I have a lot of pain in my feet, hair loss, insomnia, diarrhea and slow wound healing. I'm extremely careful about being around anyone who is sick and I wash my hands a lot to prevent getting viruses, etc.

Related Reading: cellcept | scleroderma | prednisone

Published: September 21

I'm losing my hair. Wanted some info on this.

Comment from: Kate, 55-64 on Treatment for 6 months - 1 year (Patient) Published: September 29

I'v been taking CellCept for Hypersensitivity pneumonitis, a lung disease. I take 2000mg a day. For me it has been a life saver, I went from hardly being able to breath which made me unable to walk very well to breathing normally and able to lead a much better life. It hasn't cured me but I feel a lot better. I do have side effects mainly feeling sick, stomach cramps, diarrhoea and loss of appetite. I also feel tired but it is worth taking the drug for being able to breath and I feel there is a future now which I didn't before.

Comment from: gardencitykansas, 25-34 on Treatment for 2-5 years (Patient) Published: February 09

I have SLE. Was diagnosed in August 2005. Went to the doctor to get a cream for the skin rash on my face. When they told me that I had SLE, I cried. My daughter had just turned 9 months and the fact of dying soon scared me. My stage of lupus is currently at 2 and have taken CellCept since November 2006. The worst side effect of this medication for me is the hair loss. I wear bandanas and hats to cover this side effect since I am only 33 years old. Wigs do not help me due to the fact that they itch alot. The fatigue wears on me alot too. My doctor is weaning me off of prednisone also. Kind of scared to because the hair I have left is from using the steroids. My doctor has told me that I will probably start to lose my hair again. Another side effect is loss of sexual desire. My husband feels neglected by me due to the fact of not having a sex drive like we used to when we were first married. Just being tired all the time, going to school full time, and taking care of the family adds on to all the fatigue from this medication. And not feeling "sexy" anymore due to the hair loss has really put a damper on my poor husband. He does everything in his power to make me feel wanted and loved . He has been my backbone since going thru this whole ordeal...

Related Reading: rash | lupus | hair loss

Comment from: Living with Lupus, 35-44 on Treatment for 2-5 years (Patient) Published: September 04

I have taken cellcept for almost 4 years for Lupus SLE. It has been the best immunosuppressive with the least side effects (has helped me to greatly reduce the prednisone). However, I have that it has caused some stomach problems (stomach upset and diarrhea). I need to be on this drug but wished the stomach issues would go away. Overall this is much better than prednisone. One more thing, the cellcept didn't fully help my Lupus. I found that I need Rituxan as well. That is what saved me, the Rituxan.

Related Reading: cellcept | lupus | diarrhea

Published: March 07

I have been taking CellCept for minimal change disease/nephrotic syndrome. I have experienced minimal side effects and have seen great improvement over the last year.

Comment from: 55-64 Female on Treatment for 6 months - 1 year (Patient) Published: April 07

Have a very rare disease WEGENER'S GRANULOMATOSIS (vasculitis).No known cure.I have had this for one year. I was treated with CYTOXAN and 60mg PREDNISONE for four months then put on CELLCEPT 500MG twice a day. Now taking 10MG prednisone.No side effects at this time. Lab work getting better and I have more energy.My Drs say this drug is very effective for many diseases. It sure been a life saver for me.

Related Reading: vasculitis | cytoxan | prednisone


Kidney Stones: Symptoms, Causes, and Treatment See Slideshow
Comment from: kraftykitchen, 55-64 on Treatment for 1-6 months (Patient) Published: May 19

I was prescribed this medication along with Prednisone to treat an autoimune disease that began as a resh that eventually covered my body and developed into blistering on my torso, arms and especially my feet. A 17 day hospital stay and diagnosis from Mayo Clinic has put me on the road to recovery. I am very tired and fighting an infection/cold/cough that has lasted 3 weeks. I find that I need additional rest and being diabetic must make sure that all meds and meals are on time and on a regular schedule. Keeping my blood sugars in normal range has taken extra care. The swelling has been confined to my legs and ankles. Taking a water pill make additional potassium necessary and being anemic I have increased my diet to include more iron rich foods. Because this particular autoimune disease is rare, there is little information out there. Even the dermotologist/internist/wound clinic staff has had to do additional research. I may look into an on-line support group. Other info on Cellcept for this condition suggests that treatment can take 6-8 years and that it may go into remission. What a journey!

Related Reading: prednisone | cough | cellcept

Comment from: alingle, 45-54 on Treatment for 2-5 years (Patient) Published: September 26

I take 2000mg cellcept daily. I have systemic scleroderma I have lung fibrosis, GI problems,reynolds, and have recently developed bladder problems. I have been taking cellcept for nearly 3 years. So far my lung function has stabelized which is great but i suffer from alot of infections, severe joint and muscle pain and fatigue. I dont know if this is from my disease or side effects fom cellcept my doctor gives me no answers. Anyone out there got any idea's.

Related Reading: cellcept | scleroderma | fatigue

Comment from: Sharon L, 55-64 on Treatment for 2-5 years (Patient) Published: July 26

I've been diagnosed with Devic's Disease and have been taking CellCept for 2 years.Before taking Cellcept I would have a relapse every year but since have not had a single one nor have there been any side effects. I'm currently prescibed 2000mg/day

Related Reading: cellcept

Comment from: 45-54 on Treatment for 6 months - 1 year (Patient) Published: April 18

Don't underestimate how immunocompromised this medication leaves you. Although the Cellcept was by far more effective than any other medication we tried I'm not sure it was worth it. I took 1500 mg/day and after about six months I came down with a very severe case of shingles on my head, face and eye that landed me in the hospital and affected my vision. We discontinued the Cellcept when that happened. The positives I can say for the medication are that it di help the lupus symptoms and after about a two week adjustment period of stomach pain and intermittant nausea I adjusted to it well and wasn't bothered by any more side effects.

Related Reading: shingles | lupus

Comment from: smashsmom, 55-64 on Treatment for 6 months - 1 year (Patient) Published: February 13

I have had Lupus for more than 20 yrs. I was taken off Plaquenil which was very effective in controlling the lupus because of severe eye side effects. Began treatment with Cellcept in Feb 2010 and it seemed to be very effective in treating my symptoms. I was taking 1000mg per day with no side effects. In fact I hadn't felt that well in many, many years and was pleased with the drug. But by Dec. 2010 I suddenly became very sick with 105* fever and severe back pain. Both with no known cause. After a few days in the hospital I was diagnosed with sepsis. I had no obvious infection to lead to sepsis. In fact the morning of when I was taken to the hospital until an hour before I fell sick I felt great. I had a staph infection and staph is all over everyone's skin. It must have found a small cut to enter and my suppressed immune system lead to the sepsis. It was a very scary situation. I was hospitalized for 9 days and went home with a port for continuing the antibiotics for 4 weeks X 4 times a day. I visit my Rheumatologist in April to decide what treatment I will try next. I havbe a feeling it may still by Cellcept. But I am terrified now of what may happen. I read that cellcept caused sepsis in 2 % of users. I was extremely healthy except for the lupus before this incident - other than lupus no other health problems. Was very active, walked 3 miles everyday plus lots of other activities and responsibilities. It has been 7 weeeks and I am still having problems from the sepsis.

Related Reading: lupus | plaquenil | fever

Comment from: ljames0195, 35-44 on Treatment for 1-6 months (Patient) Published: October 03

I began Cellcept 8/1/08 for MG - Current dosage 1500 mg. Was taking 2000 mg a day, but it made me so tired and weak that I couldn't function. I'm also on 60mg of predisone. Side effects for me are tired, weak, constipation, and hair loss. I've just developed a rash on my neck and wonder if it could be another side effect. Would love to email with others who have MG to share experiences and info. [email protected]

Related Reading: cellcept | constipation | hair loss

Comment from: 13-18 on Treatment for 2-5 years (Patient) Published: November 17

I'm 18 and I have anterior uveitis combined with juvenile rheumatoid arthritis. I use this medication as a replacement for weekly methotrexate injections (methotrexate made me very very sick and stunted my growth. I most definitely don't recommend it). I take one full dose (1500mg suspension) every morning about 15 minutes before breakfast and it works wonders. Some of the side effects they don't list on here are increased vaginal discharge (a total bitch) and trouble sleeping when taken after about 5pm. This medicine definitely causes fatigue and sluggishness, along with heightened anxiety, especially in people who already suffer from agoraphobia and panic attacks (me). It also masks fevers and many other symptoms of third party illnesses. Overall, I think this medicine does the job for which it's intended, but you can't expect there to be no side effects for a drug as powerful as this one.

Comment from: kristinarich, 19-24 on Treatment for less than 1 month (Patient) Published: January 15

I absolutely hate this drug! I have systemic lupus erythematosis and have been on plaquinil which has helped a little. I did chemo with cytoxin which kind of helped but finished that treatment sept. 2010. I added cellcept to give a good push in the right direction but after only 4 days I feel much worse. It's a hassle to make sure to have a full stomache to take it because otherwise I almost throw up. I'm already way weak and this has made me weaker, given me more joint pain than I already have, body aches, chills, hot flashes, constipation, negative mood changes, insomnia, and some itchiness. All of these side-effects are listed in my research on this drug. I stopped taking it today and still feel side-effects, hopefully they will go away soon. The trend I notice in the reviews on different sites about this drug is that there's an 8 out of 10 chance you will have a good experience with it. I guess I'm part of that unfortunate 2 out of 10. Try at your own risk!

Related Reading: lupus | cellcept | hot flashes

Comment from: [email protected], 55-64 on Treatment for 6 months - 1 year (Patient) Published: June 03

I have been on 2000 mg of this drug since Oct. 2010 for my lungs. Hypersensitivity Pneumonitis, which the doctors think was caused by my 3 cockatiels. Once I started taking this drug I started feeling better and not as short of breath. Still taking it and return to Stanford Hospital, Palo Alto, CA in Oct. 2011 for another check up.

Related Reading: hypersensitivity pneumonitis

Comment from: balletmom, 55-64 on Treatment for 1-2 years (Patient) Published: October 22

I have Chronic Hep C and rheumatoid arthritis. Cellcept is the one drug both my doctors agree on. It seems to help the rheumatoid.


The only purpose of the kidneys is to filter blood. See Answer

Medical Editor: John P. Cunha, DO, FACOEP

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