New to Sjorgrens, not sure what to expect. Doctor mentioned putting me on Cellcept. Was wondering if I could have some feedback from those on you that are on it or took it. Thank you!
Hello and welcome, Saiello.
I don't have any personal experience with Cellcept, but others here do, and I'm sure they will respond quickly.
As for what to expect, that's a tough question, because no two people with SjS seem to have the same disease! Everyone has various symptoms, in varying degrees of severity, and responds differently to treatments, of which there are a number of different types, from immunosuppressants like Cellcept and prednisone, to DMARDS like Plaquenil, and things that help the symptoms, but don't treat the disease itself, like Salagen (for dry mouth) and Provigil (for fatigue).
Please continue to read the posts here, you'll find help, information, support, even fun!
Hi Saiello,
I've been on Cellcept for over a month now and it has been working well for me. I actually take it for my kidneys because my Sjogren's caused an insane amount of inflammation (and gave me chronic kidney disease). I also take plaquenil, which seems to have helped a bit with my dry mouth. It's a little hard to distinguish which drug has helped which symptoms because I started so many new drugs in a short period of time. But since I have been on the Cellcept my rheumatoid factor has gone down a lot and my SED rate has been much closer to the normal range. I didn't experience any of the stomach problems that are sometimes a side effect of it, either.
Hi Saiello!
I've been on CellCept for 9 months and I adjusted to it well. I had a few weeks of nausea and feeling 'odd', some hair thinning and dry fingertips. I started on 1 x 500 mg tablet morning and night, and then after a few weeks it was increased to 2 x 500 mg morning and night. A few more side effects with the increased dose but nothing dreadful. I was advised to stay out of the sun and to use factor 60 if I was outside, and to have regular skin cancer checks. I was also told that CellCept has to be taken on an empty stomach ie you don't eat for 2 hours before taking the tablets or an hour after. So I time my doses for 11 a.m. and 11 p.m. which works really well: no food from 9 a.m. to midday or from 9 p.m. to midnight. It stops the morning treats and the evening snacks!
However ... I seem to be one of the few for whom CellCept hasn't made much difference. I'm about to start on a different immunosuppressant/chemotherapy regime with cyclophosphamide which I'm pretty optimistic about.
There are others here who have been on CellCept for even longer than me and have had really good results so don't let my experience put you off. I'm sure they'll be along soon to tell you their stories.
Maybe you could tell us more about your SjS journey and symptoms? Do you have central nervous system involvement? CellCept and other immunosuppressants are generally used in those cases.
Take care - Chickpea
Saiello,
I have been on Cellcept for 6 months and I can tell a big difference. I am on it to prepare for kidney transplant to bring down all the high numbers associated with Sjogrens. The great thing is that I will be on it after transplant, but in much higher doses. For me, I have occasional nausea that last 20 minutes a few times a week. (BUT, this can be to the high level of toxins in my blood b/c of my bad kidneys) I did see an increase of this after cellcept. You do need to take this on an empty stomach and use a high SPF out in the sun. I use SPF70 and still get a bit of sun.
BTW- my ANA number the last time we checked went from 1:1280 to 1:320. We have not checked that in over 3 months My SSA + SSB was nearly cut in half as well. I feel they are even better or at least the same.
Now....I still have bad fatigue, muscle and joint pain at times. It doesn't seem that it occurs as much and when it does it doesn't last long, like it did before. I have not had any vasculitis and only a mild case of reynaulds once in the past 6 months.
It works differently for people, hopefully it will work for you.
Take Care!
Vicky
Thank you everyone for responding.
In 1997 i was diagnosed with autoimmune hepatitis. Fortunately, I haven't had any problems. However, last year the headaches started. Then one day I was having trouble seeing and walking. I personally dont think they ever figured out what was wrong with me, but after being in the hospital for 5 days they had to diagnose me with something....vasculitis. Upon followups, my neurologist is not convinced that's what I have. I was given prednisone and responded well to that. Followup MRIs have been fine until last month. Headaches came back and another lesion showed up on the MRI. The rheumatologist and neuroligist are trying to figure out what is wrong. One of the blood tests came back postive for SS but I was told it could be the autoimmune hep. I've been on Imuran for the autoimmune hep. I go back to the rheumatologist in a few days to figure out a plan. He mentioned increasing my imuran and putting me on cellcept instead on the prednisone. I kinda feel like they are shooting blind...not knowing what is wrong and giving me new meds to take.
Hi Saiello,
I don't have any personal experience with Cellcept....but I did want to welcome you to Sjogrens World!
I hope you find as much information, support and friendship that you want and need here on these Boards! Its all here!
Hi saiello :)
I can't comment on cellcept but would just like to welcome you to Sjogren's world!
Take care - Scottie :)