Cellcept sjogren's

Common Questions and Answers about Cellcept sjogren's

cellcept

I was on cellcept for quite a long time when my dx was Sjogren's Syndrome. I never had any problems while taking it. I also took plaquenil. I don't know if that might come up for you but that one gave me this awful gag reflex. I couldn't tolerate that one but everyone is different.
For those of you who have had Sjogren's for some time, would you please tell me - do the symptoms always get worse and worse over time? I have read conflicting information. Some say it is progressive, albeit slowly. Others say is it unpredictable - can get better, worse, or stay the same. Thanks!
They are saying this form is extremely rare as it is connective tissue variety and may be related to Sjogren's. In fact Sjogren's was brought up in the Path report from The Mayo Clinic several times. Since the open lung biopsy, I have been in the hospital twice...once a possible infection that had me very sick, they did a lung wash and found nothing... This last time i had a huge pneumothroax and another while in the hospital...
As far as I know I am the only one here with both Sjogren's and MS. But I do think there are some here with other dual DX. My DX is SPMS or PPMS depending on which neuro you talk to and I am being treated with 2000mg of CellCept daily. I have never heard of LDN before but from what I just looked up about it I think I will ask my Neuros about it at my next appointment.
It sounds like a simple machine which is good. Diabetis can be tricky. You have a lot going on-I am sorry you are having to go through all of this. Cellcept is a wonderful drug but with every wonderful drug there are some down sides sometimes. I hope you start seeing the upside very soon! Many thoughts coming to you from Kansas!
Can delaying treatment for auto-immune issues, increase the risk of permenent neuro symptoms? Me - 47 female various diagnosis including SLE, Sjogren's, Grave's, GERD larynx, hypothyroidism, 5x5x4 thyroid nodule, dysphasia, angioedema, mouth dryness makes talking and swallowing difficult, long tract spinal issues, insomnia, and most recently some scary issues...
I was Dx'ed with SS around 2000 and SPMS in Jan of this year. My Neuro has me on an immunosuppressant (CellCept 2000mg ) I have been on the CellCept a little over 6 months and it seems to be helping with both the SS and MS. I have noticed that my symptoms ( including fatigue ) have not been as bad...though I am still getting worse... just not as fast. But it could also just be a cycle of less decline and not due to the CellCept.
You said that you take Cellcept/Mycophenolate for Sjogren’s? Is Sjogren's your only autoimmune condition or do you have others? I looked that med up too (I'm always looking for something new!) and was a bit surprised to read that this was meant for organ transplant rejection and no other uses were mentioned. Now, half the meds I take are off-label, so it may be no big deal that you‘re taking it for an autoimmune condition and not an organ transplant.
While you would think a specialist should know his or her stuff this is not always the case. I have sjogren's syndrome and so help me I had a Rheumy try to tell me this that this disease only gives you dry eyes and a dry mouth plus maybe RA. I should send her some books. I am new to this disease but it can do many things including mimicking other diseases such as ms. A good Rheumy should be able to run a good blood work set that should tell him/her a lot.
I have undifferentiated connective tissue disease, Sjogren's and fibromyalgia. My HRCT shows ground glass opaques and several small nodules, one possibly calcified. My DLCO is 77% (it is decreasing), and I cough and am short of breath on exertion. I am told I will need to go on a more aggressive form of therapy to try and preserve my lung function. Presently I am on Plaquenil. Cellcept or Immuran have been suggested.
I have undifferentiated connective tissue disease, Sjogren's and fibromyalgia. My HRCT shows ground glass opaques and several small nodules, one possibly calcified. My DLCO is 77% (it is decreasing), and I cough and am short of breath on exertion. I am told I will need to go on a more aggressive form of therapy to try and preserve my lung function. Presently I am on Plaquenil. Cellcept or Immuran have been suggested.
I have undifferentiated connective tissue disease, Sjogren's and fibromyalgia. My HRCT shows ground glass opaques and several small nodules, one possibly calcified. My DLCO is 77% (it is decreasing), and I cough and am short of breath on exertion. I am told I will need to go on a more aggressive form of therapy to try and preserve my lung function. Presently I am on Plaquenil. Cellcept or Immuran have been suggested.
I have undifferentiated connective tissue disease, Sjogren's and fibromyalgia. My HRCT shows ground glass opaques and several small nodules, one possibly calcified. My DLCO is 77% (it is decreasing), and I cough and am short of breath on exertion. I am told I will need to go on a more aggressive form of therapy to try and preserve my lung function. Presently I am on Plaquenil. Cellcept or Immuran have been suggested.
my mouth, eyes, nose and skin are dry, I can't sweat as much as I used to. And every medicine I try just seems to make it worse. The plaquenil causes tachycardia, as do any other meds I take: zoloft, ibuprofin, tylenol, prednisone. Prednisone caused some other weird side affects, like awful muscle pain, especially down my arms, and I swear I've lost some sensation. It also made the muscle twitching worse. Ibuprofin did the same thing.
My abdomen is swelling up so badly now that I am sure I will have stretch marks. I do have SLE with lung involvement and overlapping Sjogren's and Systemic Sclerosis. So....would not be a surprise. Boo hoo.
Hi Gina, A lot of people with lupus have Sjogren's Syndrome, which is a dryness of the eyes, mouth, nasal pasages or anywhere that should be moist, even internally. It's great you want to learn about your daughter's disease. I believe knowledge is power in any given circumstance. Some really good books are: Lupus, Everything You Need To Know ...... by Robert G. Lahita, MD & Robert H. Phillips, PHD Lupus, Handbook for Women ......
My VA Neuro has a Vanderbilt Neuro doing my treatment for MS / Sjogren's on a fee based referrals. 3 months ago my VA neuro had put in for one of the referrals which was denied so I wasn't expecting it to be approved when he put in for the referral again a couple of weeks ago. So I was very surprised when they called yesterday at 3 PM to set up an appointment.
Then the ENT did a lip biopsy and it came back positive. Yesterday, I saw a Rheumy for the first time and she said I have Sjogren's and Fibromyalgra. My symtems are: hair loss, numbness and tingling in face, chest, arms, legs, feet. My face is always itching lately, low grade fever usually in the early mornings and sometimes late afternoons. Shoulder, neck pain on right side. Hard to lift right arm. Alot of times I have no strength to pick my children up if I try I drop them.
Hi Jody. I was never formally diagnosed with autoimmune hepatits, yet, but was told by one of my several doctors that "it's coming." I have very high antibodies. I was diagnosed with Sjogren's Syndrome. I have been having liver isses for the past several years. It was about a year and a half ago that I was so sick that I decided to investigate it. My liver enzymes were very high as well as my antibodies which stay high. I have periods of exacerbations...usually keeps me in bed all day.
I've been told by neurologists -- one said it looked like I was hit in the head -- and I was - years ago -- one said it was normal and the third neurologist fell asleep in her office.
I was diagnosed 2 years ago with AIP, have a 25 year history of autoimmune disorders (eosinophilic vasculitis, mild Sjogren's). Usually have done well with prednisone for the various flare-ups but with AIP, still recurring symptoms and the elevated IgG4 periodically. Next step may be Imuran. Is there anyone out there who has had good results with Imuran for autoimmune pancreatitis?
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