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Celcept / Mycophenolate use?
Have you used Celcept , (Mycophenolate Mofetil)?
I am very interested in any feedback here eg how long, results, side effects, what particular type of Fibrosis, recommendation? I may need to make a decision pretty soon and input is important.
This drug was strongly suggested by my Rheumatologist who feels it has had a positive effect on a number of Fibrosis patients who have used this instead of OFEV. I had not run into this one but it sounds like its a lot less expensive and has fewer likely side effects, but similar results. It has been in use for quite a while (originally a cancer drug) and may be the only one I will try.
A forum member (John, Vet) recently indicated that he had been on this Mycophenolate, Cellcept for over 7 years I believe, but I can’t seem to find the article he had replied to. Would like to communicate ([email protected])
My interest is in those who have used this med since it looks like one that I might also use. So far I have decided to not go with Ofev for my RA Resistive form of Fibrosis. I need to do something soon if I am going to, since I will be running out of portable oxygen options and have to go to the heavy duty plug-ins for the house.
I am 84, on Inogen AT-Home at night on L4 for saturation levels of about 98%,
and daytime Inogen G5 on L5-L6 for maintaining saturation at about
88-92 when moving. Drop to 78% momentarily when first move and rebuild to
90%+ when stop for 3-4 minutes. Have had fibrosis showing its head for
more than 10 years but officially diagnosed in 2017. FV is not horrible but
DLCO 31%+/- Predicted.Heart stent last August may have improved DLCO from 21% to 31%Predicted. Very low, but if improvement I’ll take it. That’s the number that scares me
though…. Hypertension, in my mind may be a yellow flag that is missed in diagnoses and I have not been on any drugs for Hypertension yet. Maybe that’s next? -
15 Replies
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I was on Mycophenolate for 5 years until last October when I was hospitalized in a high flow oxygen ICU for acute respiratory failure due to Covid-19. I had also been on Hydroxychlorophine, Sulfasalazine and Rituxan infusion to suppress the immune system. I have RA induced fibrosis. The problem with these drugs is their intended suppression of your immune reaction to viral infections. Since I also have PAH from my PF I was also on Ofev. Since then I have been continued on Hydroxychloroquine and resumed Ofev. My DLOC has fallen from 40% to 30% predicted but it is impossible to tell how much is due to medication change and damage done from Covid. I am still hopeful the Ofev will stop or suppress the fibrosis. Ofev’s side effects are no fun but I haven’t been on lt long enough to determine if it is having results . Five years of Mycophenolate has not done the job and risked my life through immune system suppression.
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Diabenlo, did the Mycaphenolate cause any issues or side effects like the Ofev and could it be the reason you have not had worse condition until Covid?
I was doing fairly well until last May when I felt I might have had a touch of Covid or whatever and then things worsened. Dlco in particular dropped (21% pred), but may be inching back up a again.
I’ve been on Hydroxychloquine myself for a good number of years but no issues that I am aware of. I’m simply thinking that the Mycaphenolate for the lungs and the Tyvaso for the hypertension might hold things back without going overboard.
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Hi George. I was diagnosed with I LD a little over two years ago. In an attempt to get off a low daily maintenance of prednisone, I tried CellCept. I had a very bad reaction when I worked up to the highest dose of the day and had to stop taking it. After some time, I was advised to try it again and had the same results. I was just sick all over and didn’t want to leave the couch. However, I have heard through this group that many are able to use it successfully. I am on Ofev, 100 mg after reducing it down from 150 mg and seem to be tolerating that well. I only need oxygen at night while sleeping. I really do wish I could tolerate CellCept but it’s just doesn’t work for me. My sister has IPF and initially tried Esbriet and had the same results. Fortunately, she is able to tolerate Ofev quite well, so that works for the two of us girls. I would certainly give it a try if I were you because you don’t know until you try.
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I was diagnosed with interstitial lung disease caused by schleroderma one year and a half ago. I started mycophenolate immediately. I am not on a real strong dose so as not to suppress my immune system too much, but my lungs look better and my inflammation is down. I tolerate it very well. I only use 2 liters of oxygen at night with my cpap or when at altitude on a plane. My doctors and I feel good and hopeful about my status. I also do pulmonary therapy twice a week and my stats have continuously improved. I highly recommend pulmonary therapy.
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JSR, thanks for the input. Can you share what dose of Mycaphenilate you are on? I’m also curious what your Fv% and Dlco% are? So far I am considered RA-ILD of a resistive type but have held off on meds and moving carefully because of so many potential side effects.
Thinking the “cure” may be worse than the pain. So far I can handle the issues while hoping for changes in the available meds but that may change before long, who knows? Biggest concern is likely going beyond my Inogen limits in the interim.
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I am taking 1500 mg daily. Two 500 tabs in morning and one 500 tab at evening. I tried 4 but felt very fatigued. Since my inflammation was in the normal range my doctor let me take the 1500. I have not had any problems catching viruses or colds.
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I have been on it since 2020. Mine is caused by Antisynthetase syndrome. I take 3000mg a day three 500mg tablets twice a day. I also receive Rituximab infusions. The only real side effect from both I have see is killing my immune system so I also now receive IVIG infusions. It took a while for it to start working for me and once we tried to taper me down and off, I started to get worse and was back on oxygen 24/7 then. I only need my oxygen with exertion and while sleeping. I am about half your age also.
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George,
I was diagnosed with RA-ILD July 2022. My doctor put me on Mycophenolate, I take 2000MG a day, 1000MG in morning/1000MG in evening. I have had zero side effects/no problem taking it. My cough has improved by 98%. I have had no decrease in pulmonary function, also Chest CT scan shows no increased scarring. My doctor has been surprised that I have had such positive results taking Mycophenolate.
Tracy
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Thanks Tracy, thats what I’m looking for since my RA doctor is really insistent on me getting started. At my point in life I just don’t want anything that makes anything worse than it already is, if that makes sense?
My issue is that I have kind of plateaued and I hate to poke a sleeping tiger….
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I just read an article in JAMA (Journal of the American Medical Association) about ILD, and this was one aspect covered. Generally, perfenidone and nitedanib are used for IPF and mycophenolate mofetil more likely to be used (and effective) in ILD caused by connective tissue diseases. It has worked for me, Sjogren’s Syndrome being my CTD cause of ILD.
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Adele, my Rheumatoid Arthritis doctor may be thinking “Connective tissue” disease when pushing Mycophenylate where my Pulmonologists seem satisfied with IPF. Do you recall a specific test for Connective Tissue or was it more about inflammation indicators?
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I’ve taken mycophenolate since late January 2022, 1000 mg twice a day. Dramatic reduction of inflammation, improvement of PFT scores. No drug, of course, will reverse any scarring already present, and I still have all of that.
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Hi George, is your pulmonologist involved in the medicine discussion? Challenge is we all have different reactions and we can provide anecdotal information, but I’d be cautious with medical information. So, I have been on Mycophenolate for 9 years. During that time I’ve also tried rituximab infusions and prednisone but 5 years ago went to OFEV. Mycophenolate, my dosage is 6 500mg pills per day (3 in the morning and 3 at nite). I did go off it for a year to see if it made a difference and my scans showed the fibrosis increase after I stopped it, so I went back to it. Between OFEV and Mycophenolate, the fibrosis has been holding the same (not improving, but not worsening). It seems to be working for me and the occasional stomach issues are worth the inconvenience if I don’t get worse. Hope that helps, but my advice is to discuss this with medical experts to help get the best advice for your needs. PapaG
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I started on Cellcept/Mycophenolate almost 3- years ago after 2- years of Ofev. I would say that my Rheumatologist recommended this medication because of my CK”s going through the roof. I might also add that I already have Ryanoids which is an Immune disease which also complicates things. While I have enjoyed less side effect and remained stable, I will admit to some side effects still. folks we all know we are going to have some bad days along the way, but I have done really well. I use Oxygen at night with my C-Pap and while flying and portable sometimes while in the yard.
I did have Covid twice but did okay with that late in the Covid era, but right before Christmas last year I caught R.S.V. and that took me forever to get over and got me out of my therapy of exercise and walking. I might add that I am 66 years old and was diagnosed 3 months before I retired at 62.
This I am sure of was from my low immune system, came back had good results with my breathing test and walk test. My Ck’S are still a bit high but are continuing to come down. Also, my Magnesium is a bit low but not bad. Getting ready for a Liver Scan and a C.T. scan on my lungs, which I have not had in a least a year and a half because I have stayed pretty stable.
In reference to lowering the Immune my doctor has put me on Bactrim DS Three times a week to help protect me from getting a bacterial infection in my lungs. as you probably know there are very few anti-biotics that we can take. so far this has worked. Along with that I take Mycophenolate 1500 Mgs Twice a day, 5Mg of Prednisone three days a week so I can keep up with my grandkids on the weekends. I know you may think this is a bit unusual, but my doctors all think my condition is as well. All our journeys are different and after years of living with this opportunity we all must decide our paths of treatment. My conclusion is trying Cellcept worked for me pretty well
Continue to do as your doctors instruct you/exercise/relieve stress by Yoga or stretching outside if possible/Pray and may God bless you all.
George, I hope this helps in some way
William (Kimbo) Burnett
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