Thursday, May 8, 2008

Prescriptions 101: CellCept

In an earlier post, I promised to share details of a few of the prescription drugs I've taken for Lupus over the years. In each drug posting, I'll relate my experience with one particular drug, the dosages I took, the side-effects I experienced, and my opinion of its effectiveness. As you know, body chemistry can differ greatly from one person to another, so a drug that works (or didn't work) for me might have an entirely different effect on you. Keep in mind these reviews are written from the perspective of a patient, and should not be considered as medical advice or instruction. The information provided should be used as reference only, or perhaps as a talking point in your next doctor's appointment.


The first drug up in the series - CellCept (generic name: mycophenolate mofetil);
My Rating: A big thumbs up!



I will admit, I'm biased when it comes to CellCept. I consider it one of the wonder drugs in the Lupus community. Within two months of starting the drug, my chronic joint pain began to subside (for good!), I was less fatigued, I had no incidence of angiodema (swelling), and my inflamed, sore throat and glands went away. Within months, my serology (blood tests) indicated that my disease was clinically quiescent (under control), and for once, my physical symptoms indicated the same. I suffered exactly ZERO side-effects from the drug, which was a new experience for me. Many of the other drugs prescribed for Lupus have known, serious side-effects, some of which are more troublesome than the symptoms of the disease itself.

Because CellCept is an immunosuppresant (originally designed to prevent the body from rejecting a kidney, liver, or heart following an organ transplant), my doctor prescribed an antibiotic (Bactrim) at the same time to ensure that my body was protected against infection. I was also on Prednisone for the first year and a half I was on CellCept, but the steroid was reduced to a low maintenance dose of 5 milligrams a day. Eventually, my doctor and I opted to try CellCept on its own, and I had no flare-up once I stopped Prednisone entirely.

Here are the finer points of CellCept:

Dosage: I started out taking 1000mg a day, and eventually ramped up to 2000mg a day (or 2 grams). Even with the increase in medication, I experienced no side-effects at all.

Known side-effects:
Again - I didn't have any of these -

*fever, chills, body aches, flu symptoms;
*easy bruising or bleeding, unusual weakness;
*coughing up blood or vomit that looks like coffee grounds;
*bloody, black, or tarry stools;
*painful or difficult urination;
*chest pain;
*feeling like you might pass out.

Less serious side effects may include:
*nausea, vomiting, stomach pain, diarrhea, or constipation;
*headache, mild weakness;
*swelling in your hands or feet;
*numbness or tingly feeling;
*anxiety, sleep problems (insomnia).

Increase risk of infection; Increased risk of lymphoma (I know - this last one is a biggie...but statistics (and my doctor) led me to believe that this risk was targeted more toward transplant patients than little ole' me.)

Administering: Finding time to take this drug is tricky - you have to take it 1 hour before you eat, or 2 hours after you eat. For awhile, I was taking it three times a day, and found it impossible to figure out when I could eat, when I couldn't, and when to take the pills. I had about a 15 minute window in the morning, afternoon, and evening - and if I missed it, my mealtimes got all screwy. And forget about a late night snack! Soon after I started the drug, I asked my doctor if we could switch to only twice a day, and things got a lot easier to manage. Now that I've switched to another medication that has no time restrictions, though, I admit I'm loving the flexibility!

Cost: Expensive. For the 2 gram dosage I was taking, a monthly prescription retailed for over $800/month. Thankfully, my insurance at the time covered it completely (aside from a $40 monthly copay). I was able to reduce that copay to $20/month by mail-ordering my prescription in a 3-month supply, saving me more than $200 a year. The insurance I currently have covers the drug, but because of my prescription drug annual maximum, they'll only cover two months of a year's worth of medication. I'm not currently taking CellCept, so I figure I'll cross this financial bridge when I come to it.

Limitations: You cannot be pregnant when taking CellCept. This was a big stumbling block for me, but I realized that because the medication I was taking in lieu of CellCept wasn't controlling my disease, I wasn't healthy enough to get pregnant anyway. I opted to start CellCept, in hopes that down the road, it would help get my disease under control for good, allowing me to then switch back to another less potent drug that would be safe for pregnancy. And that's exactly what happened. After three very successful years on CellCept, with practically no disease flare-ups, I switched to Plaquenil (which is pregnancy-safe), waited three full months to make sure CellCept was out of my system, and then got the okay to start trying to have a baby. You know the rest of the story... and yes, Baby Bun will have a shrine to CellCept in his/her room.

I've heard more success stories than not with CellCept, although one of my friends in Lupus group did not have much luck with the drug. Her primary symptom was peripheral neuropathy at the time, and CellCept didn't seem to do much to help that. Thankfully, though, she was able to find another combination of drugs that has helped her pain subside.

That's it for CellCept. Next up: Prednisone!

41 comments:

Mandi said...

I have been on Cell Cept for over 3 years! It is the smallest blessing with the biggest return!!!! I LOVE IT!!! I have little to no side affect! I am down to 2mg of prednisone...when I had my first major flair up when I first got diagnosed I was at 120mg of prednisone! This is a huge improvement! I am at 3000mg a day! They were able to catch the lupus in time that it didn't do much damage to my kidneys! I don't know where I would be with out Cell Cept!

Judy said...

Hi I will be talking to my RA MD tomorrow about going on CellCept. I have not gotten a dx of Lupusas of yet (3 years) I'm thinking I will with this medication change. I take Methotrexate and prednisone (6MG) plus a boat load of other meds/supplements. I am hopeful that this will work. Its good to hear postive remarks etc. Thanks Judy

Laura said...

I know this is an old post but it's so relevant to where I'm at right now - after 14 years of different treatments for Stills (v similar to Lupus) I'm giving Cellcept a go. I haven't had any side effects so far but that's not what I'm worried about. I'm worried that I'm going to depend on a drug on which I can't even think of starting a family, which I'm desperate to do. Of course, as you say - you can't think about those things in the middle of a flare either but it's still a lot to get my head round. Anyways, your story gave me a bit of hope and an incentive to stay positive and look to the future, so thanks :)

Molly said...

I am currently on 60 mg of prednisone a day as they are trying to figure out how bad this Lupus business is. The doctors want to do chemo treatments after my biopsy, but did mention Cell Cept as an option. If it helps wean one off the Prednisone, how quickly does the face swelling and ridiculous appetite increase go away? I don't want to lose all this edema and find out I'm fat underneath!

Lynne said...

My daughter is just starting out on the generic of cellcept. She is down to 4 mg. of metholprednisone and is still on 400mg of plaquenel. Would love to hear from some of you who are on both plaquenel and cell cept. Most of her symptoms are under control but the doctor is trying to get her off steriods completely. I am hoping there are no side effects from this drug.

Anonymous said...

I have no been diagnosed with lupus yet! howver I do have autoimmune deseases ..such as graves desease, alopecia so far...my dr, calls it lupus kind of desease..myn ANA is very elevated though..
i am on prednisone, but wil be soon of it. on 7/21 i started on cellcept and I am on plaquenil as well. ....?? are the symptoms reversed/deceased with cellcept& plaquenil? email me at>>> knai79@yahoo.com..this blog gave me hope..

Anonymous said...

I've been on cell cept 800 mg for 2 months now. I am also taking 400mg of plaquenil and 20 mg of prednisone. I have been experiencing nausea, hot flashes, light headedness, and insomnia. Not really noticing and improvements with SLE flares and I realize that medicine takes time to work and my dose may need adjustment. Has anyone heard about Rituxen therapy? Any thoughts on it?

Anonymous said...

I have SLE and no pain from it but another problem arose. Nerve pain in my left leg and foot and muscle weakness causing me to walk with a cain. I did some research on lupus and im thinking it might be Peripheral neuropathy but all bloodwork is normal and shows no active signs of lupus. My doc suggested we try the drup Cytoxn but because of all the harmful side affects I said no. So now he wants to try CellCept. Im hoping that this will help the neuropathy because pain meds and injections has just been a waste of time and money and despite the fact that i been out of work because of this since June. All of your comments have been very helpful and I will continue to post updates. Thanks!

Squeaky said...

I just found your blog & am enjoying it very much. When you are able to sell the pill cases online, please let me know. How does this relate to CellCept? I just started it 2 weeks ago & those 4 big pills have thrown a wrench into my pill storage system. And like you, getting into a routine to not screw up meals & snacks has put a learning curve into the mix. Is this symptom hunger? Or is it from the new medication? Since I'm always snacking to avoid an upset stomach, I bet you can figure out which answer I think it is. TY for sharing your talents in helping the rest of us (even us old ones).

Kari said...
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Kari said...

My daughter was finally diagnosed with Lupus this last Spring. In the fall of 2009 she became gravely ill with still an undiagnosed virus, however, the doctors were suspicious of Lupus but never got a definite diagnosis. She became ill again and they feel Lupus is the cause. She had three rounds of Cytoxen and is not on CellCept, Plaquenil and prednisone. She is an entirely different person, very irratible and angry at the world. Understandably so. I am worried it the meds causing such a change in her. She refuses counseling and anti-depressents that her doctor has suggested.

Two things: I just want her to get her life back and back to the girl that was so excited about her future. Any advice? The second thing, has anyone had any luck getting CellCept for less through the drug manufacturer? Her insurance does not cover.

Im her sole support system and she is angry at me daily. I wont stop until she is self sufficient. I need suggestions! Thank You!

Nerdgirl said...

Went to the Rheumy this morning in the midst of this bad flare and he is suggesting to put me on Cellcept. Glad to hear that it worked so well for you. I hope my insurance will cover it!

Dorinda said...

Diagnosed 3 years ago - been on plaquinil,then immuran - these did not work for me - I've been on cellcept 1000mg daily 6 months now without a flare - also down to 20mg prednisone - I thank God for cellcept

Anonymous said...

Kari,

CellCept now come in a generic which is much cheaper. The manufacturer will also assist.

Cass

Anonymous said...

I am so thankful to have found your site and blogg. I was dx'd a number of years ago with Lupus and have struggled with accepting the symptoms that go with it - trying to be in control of it and pushing through the pain, etc. (as you describe in your book) I was recently put on CellCept-after challenging my doctor over the decision and getting my head wrapped around it. (I am a nurse-sometimes a huge negative.) No change yet but am encouraged by the postings. Thanks you for this site and all of the information.

Anonymous said...

I have been on CellCept for about 5 weeks and also take 300 mg of Plaquenil. How long do the headaches and light-headedness last? I feel better and my skin is better but I just feel ill and hope my doctor does not increase my dosage.

Anonymous said...

Hi I have just started celcept and the side effects scared me but I'm hoping to god that those side effects do not occur I am also on 20mg prednisone and 500 mg celcept for the first 2 weeks I hope this medication works I have stage 3 lupus nephiritis and I get a lot of joint pain in my legs and hands let god be with us all.

M said...

Just started cellcept today! I have high hopes!

Squeaky said...

I noticed headaches with taking plaquenil, prior to taking CellCept. If I made sure I ate enough before I took the plaquenil, I did alot better. Taking the Cellcept is difficult, with the same upset stomach symptoms. But if you work with it, it's better than letting the nephritis bet worse. Good luck to everyone!

Linda said...

I have been on Cell Cept for about eight months, after a year of other drugs that weren't helping. Since diagnosed with Undifferentiated Mixed Connective Disease (several lupus symtoms), I was in huge amounts of pain and for some time spent most of my time in bed. Was also on varying amounts of prednizone - from 15 to 30 mg. At high doses of Prednizone and 2000 mg of CC, I got a severe case of shingles and also a very bad staph infection. My point is - don't suppress your immune system too much with these drugs. Have since reduced my prednizone dozage to 10 mg. No more bad infectons. I am undergoing a slow but continued recovery - am able to get more done and enjoy life more. So - my final verdict on the CC is that it seems like a God send assuming my recovery continues.

Danielle Shaw said...

I was dx with Lupus 2/2010 and was recently dx with Lupus Nephritis in August. I started off taking 1000mg of CC a day with 30mg of Prednisone daily, and 400mg of Plaquenil daily. Like Linda, I too developoed a severe case of shingles that caused me to be hospitalized. My Nephrologist realized my immune system was suppressed too much and reduced my prednisone to 10mg daily. I recovered from shingles symptoms shortly after the reduction in prednisone. I just learned that my kidneys are functioning normal now compared to 5 months ago. I did experience the headaches and upset stomach, but it went away about a month or two after the start of treatment. So far, CellCept is working in my favor.

Sara Gorman said...

What fabulous feedback (that I'm just taking in now. My comment tracking system was a bit screwy!) Thanks to you all for sharing, and great comments about concerns of suppressing the immune system too much. As mentioned, my doc put me on the antibiotic, but I understand that's no longer done. Glad the cases of shingles subsided...best of luck with Cellcept, and for those of you starting it, I hope it becomes one of your favorites, too.

Jessica said...

Thanks for posting this! Starting Cellcept today with high hopes of managing my flares & avoiding Prednisone at all costs. Years of intermittent steroid use has messed up my endocrine system & adrenal glands. It causes hypokalemia (low potassium) which then leads cardiac arrhythmias like SVT. As if having SLE didn't cause enough trouble! Hahaha. So relieved to hear of everyone's easy adjustment to it. Thanks again for sharing and providing hope.

Sara Gorman said...

Best of luck with CC, jessica!!!

Anonymous said...

Im on 50o mg of plaquneill
50 mg of predisone
1000 mg of cellcept all Lupus symptoms still present
i have a marlar rash that is to the point of bleeding
Joint pains,nephritis of the kidneys
Now i keep passing out and the dizziness and fatigue is crippling my doc just increased my cellcept to 2000 mg
im really scared anybody have any advice

Sara Gorman said...

I'm sorry your disease is so active right now! 2000 mg of Cellcept really did the trick for me, so let's hope your doctor is on to something with the increase. I'm sure you stay in close contact with him, but it's imperative that the doc knows about the symptoms you described here, their severity, and how debilitated you are on a daily basis. It might be helpful to ask for a Plan - what his expectations are for the effect of the medications, what he feels is the most important symptoms to get under control, and what are the red flags he needs to know about in between appts. You need to make sure he understands how uncomfortable you are, and you want to know from him how the two of you are to communicate when you're in the midst of such disease activity. Best of luck - those meds have to start working!!

Cam said...

I am on 2000 mg of CellCept and have been for a year now after my rheumy ramped it up over 2 years. I also take Plaquenil though and have just been started on Benlysta infusions. I have had the feet swelling with the CellCept but I believe that is the only side effect I've had from it. I have Neuropathy too that the CellCept hasn't touched, but I take Neurontin for that and it helps. I still have flares and that is why I am starting the Benlysta with hopes that I can be off the CellCept and Prednisone. THanks for this blog, I hope you have one about Benlysta. If you need input about it if you haven't had it, I'd be happy to share my experience. :-)

Crikee said...

Started CellCept 2 days ago. Imuran did not help. Still taking Plaquenil. No prednisone. My lupus symptoms are severe peripheral neuropathy, starting to slur my words, fainting with prolonged standing and extreme fatigue. I'm terrified of developing PML while on it. Anyone with similar conditions? Any encouraging words? Thank you!!

Jordyn Broas said...
This comment has been removed by the author.
Anonymous said...

Starting CC today and scared. I'm on hydroxychloroquine and 60 mg prednisone along with medicines to try and ease headaches. Thanks for the uplifting posts, I'm very nervous!

danielle shaw said...

Don't be scared. I been on it for a year now. I started at 500mg twice daily and now I'm at 1000mg twice daily. I'm also on hydroxychloroquine 200mg twice daily as well as prednisone 20mg daily. I do want to tell you to be careful taking 60mg of prednisone with CC. Last year I was on 30mg of prednisone and 750mg of CC and got Shingles. I got very sick and ended up in the hospital for a week. CC suppresses the immune system as well as prednisone. So now my Dr make sure we go no higher than 20mg of prednisone. I don't want to scare you, but just want you to be cautious. I hope this helps you. Good luck and God bless you!

Anonymous said...

Anyone have experience with eight years on CellCept and over age 65? My husband, who was diagnosed with lupus eight years ago at age 65, is losing weight, leg strength, balance and is having increased foot neuropathy. He is on Plaquenil and is currently on 2.5 mg prednisone and 1500 mg CellCept; the lupus is in remission but there is progressive weakening all around.

Sara Gorman said...

Cam - I hope to have a guest blogger post about Benlysta soon. I'm anxious to hear how it's working for people. Be sure to watch for the post, and I hope you'll share in the comments about your own experience!

Sara Gorman said...

Crikee - Hope you were able to alert your doctor about those side-effects. I do hope you found luck with Cellcept - keep us posted!

Martin said...

My girlfriend was just diagnosed with lupus nephritis stage 4. It's very scary but all your comments are very comforting. Her dr. said she will be going on cellcept. I hope to follow up with more good reviews. Thank you

azannah11 said...

My daughter was diagnosed with Lupus 3 years ago after having miserable
years as a teenager. Her MD didn't get it. It wasn't until she got a blood clot that another doctor nailed it. She has found another doctor that takes a more aggressive approach to dealing with Lupus. Today she was prescribed CellCept. I hope it works as well for her.

Anonymous said...

SAra I see that you knew someone who was suffering with peripherally neuropathy...right one this is my only symptom but it is painful and driving he crazy. I am ion plaquenil and nothing else. My dr suggested Imuran but for all the reasons you discussed in your book I am reluctant to try immunosuppresants. Can you tell me if your friend found a drug that worked to treat her neuropathy? I am looking to get pregnant and am scared to do so while I am experiencing this pain.
Laura donofrio

Sara Gorman said...

darn, that neuropathy! my girlfriend said it can be terribly painful...so i'd defintely try to get that under control before gettimg pregnant. you'll need to be at your best for those nine months! i will check with my friend and see what worked for her. my doctor just recommended methotrexate for me...and i too am going through all of the same emotions i did the last time i went on what i consider a big gun drug (like immuran). i'm slowly coming to the realization though, that if what i:m using currently isn't working, i may need to change it up, much to my dismay. ah, the decisions we have to make! i'll keep u posted...

Squeaky said...

I have been on Neurontin (Gabapentin) for peripheral neuropathy. I just googled it & WebMD & the FDA recommend that this medicine be used cautiously during pregnancy. My Dr tried me on this years ago, at 100mg, which seemed useless. It was time to try it again (a different Dr). This time I am on 400mg 2-3 times a day. I do have relief now. I am also on Imuran, Plaquenil, Skelaxin & Celebrex. Prednisone helps me, but I have a bad reaction to it long term. At first, it is difficult to take these medications your Dr. prescribes, especially after you read the precautions & adverse reactions. But, as I have said to friends & relatives, we have to trust someone. If we don't try something, what will our quality of life be? Will we have a life? I have gotten a bit smarter about when I make a recommended change in medicine or addition of medicine. I try not to change during an important event week. I know how I feel now. I ask myself, can I wait one more week till my life isn't hectic so I can be aware of the side effects? Also, if one Dr changes a medicine, & another wants to as well, I'll change one at a time so I know which medicine it is the culprit if I am having trouble. Good luck everyone!

Sara Gorman said...

Oh, there is so much good stuff in your comment! Thanks so much for sharing. I went to the doctor recently, and when he recommended an unfavorable (at least in my mind) prescription change, I found myself recalling your advice that we have to "trust someone." If we don't try, we WON'T ever know, will we? I think it's a lot easier to believe that our doctors have our best interests in mind, than to second-guess them at each turn. As long as any concerns or hesitations I have are being addressed, I find that my doctor is truly the one guy I can count on! Your words ring true for me - thank you!

Anonymous said...

I have been on both plaquenel and cellcept only for 14 years and it has been great. I still sometimes but very seldom have a little abnormal pain but not for long.