Has anyone been on Cellcept? I was on oral cytoxan for several months and the side effects were quite brutal. My new rheumatologist just changed me to Cellcept @ 2000mg/daily along with 10mg Prednisone. So far the side effects are nothing compared with the Cytoxan. I was wondering if anyone else had been treated with Cellcept and what the results were. Thanks--Stephanie

Hi Stephanie I wondered how you are doing on Cellcept. I had 6 doses of IV cytoxan last year which didn't help me, I have been on Imuran for 9 months and my CK dipped in April to 79 but recently it is back over 1000 so they are changing me to Cellcept next month (when I get back from my holiday - I didn't want to risk being any worse while I'm away). I will be starting on 250mg per day for first week, 500mg week two, 1000mg week three with low dose prednisolone. Have you had any side effects, and has the new regime helped with your symptoms? Thanks Alison

Hi, I haven't posted before, but my husband was diagnosed with Antisynthetase syndrome in January. At that time, his CK was normal and he only had a cough and ILD. He was on Cellcept 1000mg twice a day since about the end of January with tapering Prednisone. When the Presnisone was tapered too fast a few weeks ago, (a mix up with a mail order pharmacy) his CK went up to over 9,000. His Predisone was increased to 60mg and he ended up in the hospital with a high fever and pneumonia. He is now only on the high dose prednisone. He saw the rheumatologist at UC San Francisco on Monday, and they suggested Immuran, but they wanted him to see the Interstial Lung Disease docs, so we will go back to San Francisco Friday. We will let you know what they prescribe. The previously suggested Tacrolimus if the Cellcept did not work, but all the other docs he ses are very reluctant to prescribe it. Bev

PS-the only real side effect of the Cellcept was having to use the bathroom several times a day, but it wasn't really diarrhea. Bev

Hi Alison, I recently was seen at the Myositis Center at Johns Hopkins Medical Center in Baltimore, Maryland, USA. The pulmonologist and neurologist I saw said the cellcept was doing nothing for me. I am currently on 3000mg/daily and 10mg of prednisone/daily. The pulmonologist has recommended IVIG with ten hour infusions once a month for five months then transition to immuran. I am having terrible joint pain and more muscle weakness than I have ever had before. I was on oral Cytoxan for two and a half months at a very high dose. During that time I did not have any joint pain, but the other side effects were brutal. The only side effects from the cellcept has been diahrea and high heart rate. I am still waiting insurance approval for starting the IVIG. The last ten months have been the worst for me since this whole journey began over two years ago. The doctor from Johns Hopkins assures me she can get me into remission within a year. I also had some headaches with the cellcept at first, but those have subsided. I have been on cellcept for four months now. Hope this information helps, keep fighting!

Thanks Bev and Stephanie This disease is so frustrating that there is not just one medication that helps everyone. Thank you for your responses; I'm not looking forward to the switch to Cellcept, especially that it takes so long to work so I will have to rely on the pred to keep me mobile (which i hate taking). I googled the John Hopkins centre, and was very envious! It must be so nice to be seen in one place, rather than be sent to different hospitals for different parts of this condition. I am seen at 3 different hospitals for lungs, skin & rheumatology, and another for general myositis check up, and it's very frustrating when the 3 hospitals don't confer with one another, and I end up as a messenger between them all! I wish your husband well for Friday Bev Take care Alison

Alison - Your run-around sounds horrible, playing messenger among the docs. What city are you in? (By the way, some other current postings are in the IVIG - Antisynthetase forum.) Greg

Hi Greg I live in the UK, near Brighton on the coast, and travel to London for a lot of my consultations. Good to hear from your recent posts that things are improving for you...it's a long road to remission but i'm hopeful we will all get there with our tailor-made therapies! Take care Alison

Alison - Right, tailor-made therapies for essentially different illnesses, which makes it very hard to carry one person's experience over into another person's world of ailment and remedy. I'm extremely happy with the care I'm getting in NYC, not to disparage Baltimore, and not to make unfounded predictions about variations in myositis and the implications for remission and relapse. The variability is extreme. Even the personal histories concerning side-effects seem highly individual. Some day, maybe more will be known with the sort of certainty that lets people evaluate alternative therapies better. But it looks like that day will be a long time coming... Greg

hello My doctor just prescribed Cellcept today and I am a little nervous about taking it. I am glad after 12 years of thinking I had something else to finally know what I do have ..........but at the same time it is very scary to me.

So, ginbo43, what's the diagnosis for which the Cellcept is being prescribed? Is it because of particular symptoms? Greg

Hey Greg, they thought for 12 years that I had dermatomyocitis but after much testing and new symptoms and a new doctor I might add....they have diagnosed me with antisynthetase Syndrome. The doctor is hoping it will clear my hands up as well as help with the lungs......says no more prednisone. Gina

Thanks Gina, and good luck! Do you happen to know which antibodies confirmed the anti-synthetase syndrome from your blood-work? I have "anti-OJ" myself, a rare one, but being so rare it doesn't appear to predict much. I'm having a double biopsy Monday to investigate whether there might be an underlying cancer, responsible (on one theory) for my "sudden" polymyositis florescence, even though "anti-OJ" is not normally associated with cancer, according to "mainstream" views... Greg

Hi Gina, I have been on cellcept since late April 2010. I have Jo-1 Antisythetase with Dermatomyositis. My mechanics hands have almost completely cleared up, but my lungs are still the issue. I still have "ground glass opacities" throughout both lower lobes. I haven't had any side effects from the cellcept except an occasional bout of diarrhea. I still take 10mg of prednisone a day as well, down from 60mg in January. I also just started IVIg infusions. I hope the cellcept works for you! Stephanie

Hi Gina Good luck with the Cellcept, let us know how it goes. I'd be interested to hear, as I am due to switch to Cellcept on 5th October. I'm currently on Imuran but my CK has been creeping up over the last three months and yesterday was 1583, so am stopping the Imuran after our holiday. I'm worried about side effects so delayed starting the Cellcept until I get back. What treatments did you used to take when you were thought to have dermatomyositis? Guessing you have the split skin and roughness on your hands? Mine have flared up really badly and look awful. I'm so ashamed of them. Lets hope the cellcept helps. Greg. I'll be thinking of you on Monday. What are you having biopsied (if you don't mind me asking...if you do, feel free to ignore!) Hope all goes well and you get answers quickly. Take care Alison

Hi Alison - Both biopsies are in the chest area, one in my upper left lobe (a growth of some sort, maybe maximum of 1.8 inches across, very roughly) and one "area of concern" roughly at my sternum, that was interpreted (due to unusually high glucose take-up) from a recent positron emission tomography (PET-) scan imagery. It's the pulmonologist who is spearheading the cancer quest, and I think it's his "pet" theory that cancer cells could have "confused" (my term) the autoimmune system and led (since those cells are coded as "my body") to a myositis "behavior" of attacking my musculature, etc., as myositis does. The rheumatologist, on the other hand, while anxious to rule cancer out in a "general way" and thus supportive of CT-scanning and other testing (such as colonoscopy) is more skeptical, I think, regarding the likelihood of a "cancer genesis" for the myositis. Thanks for good wishes! Here's hoping I don't need them (too much). There are answers I just don't want to get... Greg

Greg, I have the anti JO-1 is that the same as yours? this is all still sorta new to me as it has always been my sed rate and cpk that were so high this is a new thing showing up. I will sure be thinkin about you Monday as well and hope everything turns out to be clear with the biopsies. Stephanie, thanks so much for the positive feedback on cellcept. I hope it works as well for me. Hope things continue to go well for you. Alison, yes, I too have the horrible hands that embarrass me to death and even worse hurt like I can't even put into words. I have taken lots and lots of prednisone and methotrexate as well as placquinil. I realy wasn't too excited hearing I have to take a new medicine.....have sorta been in denial. The doctors are mostly worried about my lungs and they aren't not doin so well and my latest ct scan showed 2 mm non calcified nodules in my left lobe. My mom died from lung cancer when she was 55 so I am a little nervous. They assure me we will watch it very closely. Thank you all for your responses.....sure makes me feel better to know I am not alone in the journey. Gina

Hi Gina It's always interesting to hear about everyones different journeys with this disease; and no matter how diverse our experiences, we all have one thing in common, and the support we can give each other is invaluable. Only you guys here, know exactly the same frustrations and worries, and understand in a way that those around us can't. Greg, I'll be keeping everything crossed for you, you must be so worried. I hope you don't have to wait too long for the results, and that the answers are the ones you want, not the ones you don't. Alison

Gina - my husband also diagnosed several years ago with dermatomyositis - now with positive anti Jo-1 and interstitial lung disease. I wrote a comment about this in another topic how his rheumatologist told us that autoimmune diseases can morph into another autoimmune disease. His CPK level several years ago was elevated but not now. It seems that the lung aspect of the disease is more prevalent with him rather than the arthritic component at this time although arthritic symptoms still giving him difficulty. His hands were particularly bad several years ago but are now OK. This disease is so variable in individuals. Greg - wishing you well with your tests. Dee.

I take Myfortic but a few weeks ago my AST was up higher than normal. My CK was down again in the normal range. I have the Anti-JO1 antibody. My mechanics hands are still acting up. My face is a mess of scars. I get spots on my face. I am now down to 10 mg of prednisone. My joints are acting up. We had some cold weather here over the weekend and my joints are hurting and stiff. I can't wait to go back to the rhuematologist and pulmonologist on the 5th on October. I will be comming up with a lot of questions for my doctors. If anyone has input on what I should be asking my docs please let me know. Jen

Greg- How did your biopsies go? I hope you are feeling better! Stephanie

I too was wondering how you are doing Greg. Today is my first official day on Cellcept......so far so good.

Well I can say I do think the Cellcept is making my fingers better. I can really see a difference in them and the soreness is gone. On the other hand it is very hard on my stomach.....hoping that will get better in time. Hope everyone has a good week. Gina

Hi Gina, Do you take anything for the stomach upset? I take Dexalin which is similar to Nexium and have had no problems with the Cellcept. I take 3g/daily. You might ask about adding a drug for acid reflux to your regiment if you don't already take one. I am glad it is helping your fingers! It helped mine too. Stephanie

Hey Stephanie, Im glad to hear the cellcept helped your fingers too......I was so hoping it would! I have already been taking nexium for a bad reflux problem but that doesnt help. Some days it's not as bad as others. I do think the side affects are gonna be worth the benefits though. Hope you are havin a good day. Gina

I take Prilosec for upset stomach. I started it when I was just on the 60 mg of Prednisone. Good luck with the stomach upset.

I started Cellcept yesterday after a week of increased prednisolone (20mg) to get my inflammation down before starting the cellcept. I had a great weeks holiday in France, and was so grateful to feel the benefits of the pred and be able to walk easier and feel better. For the last 3 days my whole body feels as though it is trembling, which I think is a side effect of the pred, and I have pain/throbbing in my calf muscles. I feel as though I have walked a marathon. I have to start the Cellcept gradually, 250mg week one, 500mg week two and 1000mg week three. I took my first dose at bedtime, does anyone have any tips of the best time to take it? I thought if i took it at bedtime, i might sleep through any nausea if it caused it. What do others do? Fingers crossed that the cellcept works for me. It's good to hear of positive results for others. Hope you are doing ok with your Cellcept start Gina - i've been thinking of you! Take care Alison

Hi Alison, Glad you had a good vacation. Sorry you are having trembling and calf aches. My hubby also has trembling from the pred, but mostly only his hands. He takes his Cellcept two times a day, he is up to one gram (1,000mg) two times a day. It should be taken on an empty stomach, so one hour before meals or two hours after. My husband has not had any nausea from it, only some frequent loose stools, but not enough to call diarrhea. Since he restarted the Cellcept three weeks ago, his cough has almost disapeared and he is feeling better. Sure hope it works for you too.

Hi Alison, It was nice to hear from you and always nice to know someone is thinking of you. I too have wondered how you were coming along. Well I have been on the Cellcept a couple of weeks now. I must say the first week was a little rough and i had major diarrhea and stomach pains. I am happy to report though that this second week I have had neither. :) My hands are 80% better already!!!! I take 500 mg and I take it twice a day. The pharmacist said to take it 1 hr before or 2 hrs after meals but my doctor said if the stomach upset was too much then I could take it with food. I really do feel the benefits outweigh the side affects and I hope that holds true for you too. I will be anxious to hear how you are doing. Gina

Hi Bev and Gina Thanks for the advice about the timing of the dose...your description of side effects might explain why my poor tummy is a bit sensitive! I'm so hopeful that this will work, especially with hearing positive reports on here. My lung doctor told me the first two years of this disease are the worst while they try to control it, I hope he was right as i'm half way through that time now, so hopefully better times are ahead. Take care Alison

Thanks to all of you for your informative posts. My daughter Natalie just got ill and was diagnosed with Anti-synthetase in Aug of this year. She also has mysositis, Raynuads and intersistial lung disease. Her docs already did the IVIG in mega doses, she was on large doses of prednisone. They are tapering that and have her on Cytoxan. Her pain was unbearable. She had multiple pulmonary emboli and pnuemothoraxes. They also think hers might be linked to a cancer even though everything is clear right now. I am a breast cancer survivor and she carries the BRCA1 gene deviation. Her disease has progressed extremely rapdily and she is now on a respiratory with 4 chest tubes and heavily sedated. We are waiting for a lung transplant. She is currently at Hopkins but is to be transferred to Pittsburgh UPMC this morning. I hope I made the right decision and she makes the flight. I thought we were alone in this so I am so glad to have found this forum. I will use all this information to constantly push her docs to try anything. Keep fighting the fight everyone and stay strong.

Hi Slam Your daughter's story is shocking, and you must be hurting so much to see her go through this. She is indeed very lucky to have you with her through this; I have shed many tears wishing for my own Mum to be around to comfort me, so I know that having you will be a great comfort to her. I wish you both well, and sincerely hope that your daughter makes a good recovery, and that you will keep in touch with how things go Take care Alison

Dear Slam, I have been in contact with Dr. Fred Miller MD/Ph.D. at the National Instititutes of Health. He is the leading researcher in the USA for auto-immune diseases, especially ASS, Dermatomyositis, and Myositis. He told me about Dr. Chester Ottis at Pittsburgh. Ottis is a pulmonologist. Dr. Miller suggested him if I could not get into see the folks at Johns Hopkins. Hopefully you can get your daughter to him! I am praying for your daughter and your family. Please keep us posted on her condition. God Bless Natalie, and you! Stephanie

Slam, I spelled his name wrong. It is CVhester Oddis at Pit. See the linbk : http://www.arthritis.pitt.edu/biooddis.htm Godsspeed! Stephanie

Dear Slam I wish the best to you and your daughter. Keep positive, and I will keep you in my prayers. Take are of yourself and those you love. Again please keep us posted Cathy

Hi Slam, I am sorry to hear about your daughter's situation. I am also the survivor of ASS after going through 3 months of ICU at Duke University Medical Center in 10/10/2008. I will never forget what I have gone through those 3 months in ICU. I am very happy that I have family like your daughter has you. Family's support is very important in a situation like this. Don't worry your daughter will be fine and recover well. I will keep her in my thoughts while I pray. Take care, Ramthebomb

Dear Slam, I hope your daughter gets better. I am a recent diagnosed and found this forum. I am so gratefull for this forum. I will keep her in my thoughts. How old is your daughter. I just turned 33 on Tuesday. My best advise is to not give up keep fighting for her. Jen

Slam, Holding you and your daughter in my thoughts So grateful she has you there fighting for her. Please keep posting questions as they come up... I have found these folks to be a wealth of information and very comforting. Kelly

My daughter is 29 and the single mother of an 8 yr old son. Right now they are trying to wean her off the ventilator and remove some chest tubes. OR they will remove her from the transplant list. Her anxiety is getting the best of her which then makes it harder for her to breathe. They are talking about starting her on CellCept. I need to look that up. She has been on mega steroids and Cytoxin.

Having been on those mega steroids, I know they alone can send your anxiety through the roof, keep you awake, make you weak and crazy jittery, etc. Hoping those mega doses are shutting down the Antisynthetase so her lungs can start to recover. I haven't been on cellcept but others here have. Hope she continues to improve. Glad she's got some fight in her - that's a good sign in my book. Kelly