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!

Comments

Unknown 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.
Unknown 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!!
Unknown 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.
GretchCannon said…
Did Cellcept help any of your cognitive problems anyone?
Sara Gorman said…
That's a great question. I can't really say that cellcept specifically helped those symptoms, because I know that when I have those cognitive issues, they seem to go hand in hand with my pain, fatigue, etc. I do know that after two months on cellcept, I felt significantly better all around, which definitely included the cognitive. When you feel better, so many things fall by the way side, know what I mean? :) thanks for asking!
98387lupie said…
Has ANYONE been helped with neurological issues such as PN with Cellcept? It doesn't look like it...
Unknown said…
I hope you have better luck than I did with Benlysta. I was on it for 18 months and ended up in assisted living. After my wonder drug, Cytoxan, I'm out and improved but re-experiencing flares. CellCept is next. Thanks for the helpful comments.
Unknown said…
That's what I'm looking for also. Cytoxan knocked mine out but you have to be at a deadly stage before most rheumies will prescribe. After all my Cytoxan doses, we're looking for something as maintenance. I'm hoping CellCept will be it.
Sara Gorman said…
Tater patty - I hope CC is the solution for you! Thanks for commenting.
Anonymous said…
I'm on gabapin for n.p it has worked wonders
Sara Gorman said…
Believe it or not, the vet just put our dog on a form of gabapin for arthritis/pinched nerve, and he's doing great. Glad you mentioned it!
Unknown said…
I HAVE SLE-LUPUS SINCE 2008 AND I WAS ON PLAQUENIL THEN THEY TOOK ME OFF TO GIVE ME IMMURAN AND I WAS ON THAT FOR SIX YEARS AND NOW MY BODY IS REJECTING IT. SO NOW THE DR WANTS TO GIVE ME CELLCEPT WHICH I READ THE SIDE-AFFECTS AND IM SO SCARED BUT I DONT WANT TO DIE EITHER. SO I HAVE NOTHING AT THIS TIME WHILE IM WAITING FOR THE NEW MEDICINE. I PRAY THAT I WONT HAVE SIDE EFFECTS WITH THIS NEW MEDS.

HAS ANYONE EXPERIENCE THIS TYPE OF MEDICINE HAVING LUPUS AND NOT ON STERIODS?
Sara Gorman said…
So sorry to hear the immurabe isn't working. You know I can't say enough great things about cellcept. I've been on it a second time (now for 1 1/2 years), and it's working wonders. I hope you have success. Be sure to discuss your concerns with the doctor - as mine was able to address a few of my big issues. So so so glad I took the leap. I'm a changed woman because of it! Best wishes.
meta said…
This comment has been removed by a blog administrator.
meta said…
Plaquenil caused mood swings and anger with me. It was stpped and my mood swings anger stopped. Today my doc put me on celcept for lupus. I hope it works
meta said…
Plaquenil caused mood swings and anger with me. It was stpped and my mood swings anger stopped. Today my doc put me on celcept for lupus. I hope it works
Karnold said…
I had been on immuran for the last 5 years with good results until this past April. Now my body does not seem to be tolerating it. My liver enzymes keep going up. I am wondering if anyone else has experienced this. Now the Dr is switching me to cellcept and 25 of prednisone. I am a bit nervous because my liver enzymes are still elevated. But the Dr said we need to get the lupus under control.
meta said…
Imuran didnt work for me. I got alot of the side effects. After 2 months my doc stopped it. Im on cellcept. My 1st week and its a blessing. My lupus symptoms are better.
meta said…
Imuran didnt work for me. I got alot of the side effects. After 2 months my doc stopped it. Im on cellcept. My 1st week and its a blessing. My lupus symptoms are better.
Sara Gorman said…
I hope you continue to improve. Welcome to tge I heart Cellcept club! :)
Sara Gorman said…
"the" I heart Cellcept club, rather!
Anonymous said…
Hi - do you HAVE to take prednisone with celcept??
Sara Gorman said…
Not to my knowledge. I just happened to already be on it when my doctor started me on cellcept. Also note that it's my understanding (and experience) that an antibiotic is no longer prescribed in conjunction with Cellcept. I've since started Cellcept a second time, and I've been on it for almost two years without any antibiotic. But you should always check with your doctor about your particular medication needs. Thanks for commenting!
Unknown said…
This comment has been removed by a blog administrator.
Anonymous said…
My 9-year-old daughter is starting micophenolate today. She will be tapering up to 2000mg in a 4-week period. I'm so worried because it is flu season and she goes back to school in a couple weeks. I trust her rheumy but I'm really nervous about this. Should she stay home from school if a classmate simply has a cough or the sniffles or is that going overboard?
Unknown said…
I think that's a little too much...lol (no offense). You can't keep her isolated from everything at all times. Just make sure she is practicing good hygiene at all times (that's a MUST). She definitely need to make proper hand-washing and disinfecting frequent daily tasks and avoid large crowds, hospitals, nursing homes and sick people as much as possible. I took Mycophenolate for about 2 years.
Anonymous said…
Jessica, do not listen to people who says only to avoid people who are sick and practice hand washing. I have severe SLE and took the doctors comments when they told me that I should go out into the world and live my life as if I just had the flu. Well, I almost died in the ICU about two years ago! If you love your little girl, keep her at home. Schools are germ havens and crowded. I know because I use to work in one. Plus, some people look healthy but have contagious diseases so one cannot always tell by looking. The warnings on the medications are not for decoration but to inform. I am also on this med and others and I take the warnings very seriously. Please take heed.
spedlady1976 said…
I was just diagnosed with Mixed Connective Tissue disease Disease in January 2016. My doctor started me on Plaquenil. I had no problems but noticed swelling in my hands after a couple weeks. So she prescribed a prednisone burst pak. 2 days into that I had the most insane reaction- totally covered with hives. 3 ER visits and 2 trips to the dermatologist later, we've decided the prednisone and I will not be partners in this venture. My rheumatologist has switched me to cellscept 500 mg 3x a day. Timing the doses is annoying. I do feel better although it's only been 2 weeks. However my feet and hands are swelling. Doc says it should subside on e the Cellscept kicks in. I have lot of pain and discomfort import in both hands, tingling, Raynaufs, and aching. Prior to my carpal tunnel surgery I took gabapentin which relieved Maisto of my symptoms. I am wondering if the gabapentin would help with the discomfort now. Little too soon to tell what effect the Cellscept is having but so far seems to be ok with the exception of the feet and hand swelling.
This has continues to be quite an
adjustmwnt- from diagnosis to trying to get treatment figured out. Is it always this crazy? I am researching diet and lifestyle accommodations and my doctor has referred me to the University of Michigan Rheumatology Clinic so we can get a handle on what's going on with me. She's pretty bewildered (my word, not hers!) about how rapidly different symptoms of my MCTD seem to be oresenting. Thanks for reading this.I welcome any and all feedback. Be well my friends.
spedlady1976 said…
I was just diagnosed with Mixed Connective Tissue disease Disease in January 2016. My doctor started me on Plaquenil. I had no problems but noticed swelling in my hands after a couple weeks. So she prescribed a prednisone burst pak. 2 days into that I had the most insane reaction- totally covered with hives. 3 ER visits and 2 trips to the dermatologist later, we've decided the prednisone and I will not be partners in this venture. My rheumatologist has switched me to cellscept 500 mg 3x a day. Timing the doses is annoying. I do feel better although it's only been 2 weeks. However my feet and hands are swelling. Doc says it should subside on e the Cellscept kicks in. I have lot of pain and discomfort import in both hands, tingling, Raynaufs, and aching. Prior to my carpal tunnel surgery I took gabapentin which relieved Maisto of my symptoms. I am wondering if the gabapentin would help with the discomfort now. Little too soon to tell what effect the Cellscept is having but so far seems to be ok with the exception of the feet and hand swelling.
This has continues to be quite an
adjustmwnt- from diagnosis to trying to get treatment figured out. Is it always this crazy? I am researching diet and lifestyle accommodations and my doctor has referred me to the University of Michigan Rheumatology Clinic so we can get a handle on what's going on with me. She's pretty bewildered (my word, not hers!) about how rapidly different symptoms of my MCTD seem to be oresenting. Thanks for reading this.I welcome any and all feedback. Be well my friends.
Sara Gorman said…
Sometimes it CAN be crazy- but hopefully that cellcept will kick in and you'll reach a new plateau that's a little more manageable. Diet, lifestyle and meds are key, so fingers are crossed for you! Just keep tracking those sypmtoms, and be sure to report back to the doc. And I would definitely mention gabapentin to the doc. She'll appreciate knowing what's worked for you in the past, and you'll discover if it's even a possibility with your new cocktail of meds. AND agreed that the timing can be a pain. I remember feeling like I had a 15 min window in the morning to eat. It was ridiculous! But as I felt better and better, I didn't mind as much :). And then I went down to 2 x day. Look what great things might be in store for you?! :) take care.
Alex Neil said…
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Anonymous said…
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98387lupie said…
Shame on you "Joy". Preying on sick people.
Unknown said…
Cellcept will be now my second medication I take with 10mg prednisone a day. Within these two months I've been amazed how much better I feel. Now complaints here bc I can't have children anyways. And I horrible reactions to plaqniel. I swear I have the best rheumatologist in the world. She has been a god send so far. Knock on wood
Sara Gorman said…
I'm so glad cellcept is working for you! That's great news - and so happy to hear that you and your doctor are working in sync. That's so important! Thanks for sharing.
Unknown said…
I begin Cellcept tomorrow. I am mostly nervous about the brain virus 😲i will be optimistic. Any advice on how to best protect yourself from others while immune system is vulnerable?
Sara Gorman said…
You are going to do great! As you read, Cellcept worked wonders for me, and many others have found the same. Even if it improves your symptoms, it's a win, right?!? There was a little nausea at the beginning, but it subsided quite quickly for me. Years ago, some docotrs (like mine) prescribed an antibiotic alongside cellcept (for the added protection you referenced), but i believe that strategy has gone by the wayside. That discontinued practice demonstrates to me that a vulnerable immune system, while a consideration, isn't too risky with cellcept. I think typical things like washing hands, not sharing drinks, etc are always good practices. My kids tease that i never get sick (because i don't catch their colds, flu, etc) even while on cellcept. I hope u find the same!
Unknown said…
Thank you for your reassurance. Cellcept seems to have alleviated symptoms after 4 doses. What a relief!
Sara Gorman said…
I'm hopeful for you!!! Take care and keep us posted. SG
Unknown said…
I have been taking cellcept for a few months and not yet feeling aby benefit from it. I had a two week break from it over Christmas due to a bad flu virus but just wondering how long it takes most people to work please? I was prescribed prednisolone at the same time but couldn't tolerate it and I'm also on plaquenil. I am in the UK and have sle, RA, fibro, reynauds, osteoarthritis and am only 39! Hoping life begins at 40. On a pkus side the only thing I have noticed is very small growths of new hair which I haven't had in over 20 years of having lupus.
Sara Gorman said…
Three cheers for hair growth! That is huge -- I hope the sprouts continue. It really did take a good 2-3 months before I thought, wow, i feel better. Sorry it's taking longer than hoped. Definitely share your feedback with your doctor. There should be options if over time, no improvement is seen. Take care and report back soon!
Unknown said…
Hi,I'm new to this,I've been diagnose with lupus,fibromalgia, and a few others,I spend most of my time in the house,the sun isn't my friend,also very depressed,doctor call in the medicine cellcept for me,I'll b picking it up on the 1st,I just want to know some foods that helps and anything helpful.
Sara Gorman said…
I hope Cellcept is a winner for you. I'm sorry you're having such a hard time at present, but i hope in 6-8 weeks, once the cellcept starts working, you'll notice a change for the better. While there is no diet specifically designed for lupus, I found that avoiding/cutting back on dairy and meat really helped. I also avoided any natural inflammatory foods (like sweet peppers, tomatoes,etc) to try to feel the best i could. I also still avoid caffeine, but drink plenty of decaf hot tea. I highly recommend it, as it is soothing to the mind as well. :) Best of luck, and be sure to keep your doctor apprised of how you're feeling, mentally and physically. It all works in concert with one another, i think!
Anonymous said…
I was diagnosed with Lupus in 2001. My recent kidney biopsy showed that Lupus was active in my kidney so my doctor prescribed CC. I start my medication next week and I'm nervous about the side effects. I currently take Prednisone and Plaquneil daily. Any advice on taking this medication and consumption of alcohol?
Sara Gorman said…
I hope you have great success with CC!! My personal experience has been that drinking in moderation (one or two glasses of wine /week) has not had an adverse effect. But i do recall for the first 2-3years i was on the drug, i chose to abstain from alcohol completely, to give myself the best chance of letting the medicine do its thing. Best bet is to check with your doctor to come up with a plan to manage the medicine and alcohol consumption. I have high hopes for you! :)
wolverine-ette said…
I have been taking cellcept for about a month and a half now, working my way up to 1500 mg on the way to 2000. I am experiencing serious nausea and stomach discomfort and numbness and tingling in my legs. I am really unsure about whether I should hold out for the 8 week mark to see if I start feeling better or if I should throw in the towel. I have asked my doctor and she is not being very helpful. I am feeling so frustrated. I would hate to quit now but I am so uncomfortable! I just don't know what to do.
Sara Gorman said…
Wolverine-ette - I'm sorry the initial side-effects are so troublesome! I wish there were a right answer about stopping or continuing. Could your pharmacist be of any assistance? And what about asking your doctor for a plan, as in: what are you going to do at the 8 week mark if u stick with it, but symptoms continue? What are your treatment options if you stop? What benchmarks is your doc looking for in disease management? One other question for you - are you noticing any imorovement in symptoms at all? I know it's probably hard to distinguish with the other stuff you're feeling. I wish you luck. Keep us posted!
wolverine-ette said…
Hi Sara. Thank you so much for your response and thoughts. I really appreciate you taking the time. I am going to speak to my pharmacist about cellcept -- we know each other VERY well at this point and I trust her a lot. I have spoken to my doctor and I get the feeling she doesn't really know where to go from here. She has mentioned a clinical trial but that makes me nervous. In general, she seems to take the attitude that if my health is not in "danger" she is not that concerned. Chronic pain and discomfort doesn't seem to be a major priority for her. However, I have noticed some improvement in my fatigue on the cellcept -- I can actually make it through a day without napping and sometimes even have enough energy to make dinner for my husband. Thank you again. I will let you know what I decide!
Sara Gorman said…
Wolverine-ette - Those improvements sound great!! Enjoy the extra hour or two you've
found during the day. And glad you can talk to your pharmacist. I never thought i'd get to know mine so well either!! 💊💊Take care!
Sally said…
Hi all, just reading posts on Cellcept are great. I too have just recently started taking it approx 2 mths 3000mg per day I have SLE and Autoummune Hepatitis. It seems to be working wonders for me no major side affects other than the low grade temps. No complaints so far it early days.
Sara Gorman said…
Sally - I'm so glad to hear you're having success with CellCept! thanks for sharing and I hope those low grade temperatures subside soon! Take care - SG
Anonymous said…
I have had lupus since 22. I never had any kidney issues until this year--at age 44--I am beyond angry about this--I have never heard of it attacking your kidneys so late in the game--I have type 5--pure membranous nephropathy and very high protein in urine. I will be going on cellcept next week. I am still in shock.
PS Sara you and I met at a local LUPUS support group in 2007 and went out to dinner once. I am praying I do well on this medication as you are.
Maria
Sara Gorman said…
Maria - Hello!! It's been awhile! Thanks so much for commenting. I am hopeful that it will work as well for you, too. Let me know if you have any questions once you get started on the medication. You can email me directly at sara@despitelupus.com. Fingers are seriously crossed!!

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