I am looking for some answers from you in regards to taking micophenalic acid and loosing weight. Ever since I start taking it I have loss over 25 pounds in 2 yrs and some months. I kept telling the doctor that I think it’s the medication but they are still having me take it. I am so frustrated because it is what has changed and then I started getting frequent infections, changes in bowel and had SIBO. As I come off it when I get an infection all the symptoms stops after a few days then once I go back on it starts again. Now am at a loss and feeling really sad that this is happening and I still feel that I need to stop taking it and maybe they try something else. Once I went to emergency rheumatologist and she said it doesn’t seems to be working so I might need to change it because they are seeing changes to some things which makes her wonder if it is working and with the frequent infections and weight loss but since she isn’t my rheumatologists she will make a note and then I can speak with him as it needs to be approved by him and the head consultant. Anyone has any suggestions I would greatly appreciate it. She did mention retuximab to try and see if that helps more than what am currently taking.
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Anniw
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You could try emailing your Rheumatologist secretary and mention what as been discussed in the past with the emergency Rheumatologist , the fact that they were unable to change the medication, but that a note was made,about changing medication, how you feel it’s affecting you and ask is there is a possible alternative .Tell them you would like to try an alternative and ask could they write to your GPs if you don’t have a Rheumatologist appointment due to prescribe the alternative.
Or ask for your next appointment to be brought forward if they can’t change medication without seeing you.
I find the secretary always passes on emails and I have always had a response. No harm in trying.
Hi Anniw, i have diffuse Scleroderma with Raynauds and had the same problem while taking CELLCEPT (mycophenalate mofetil) 500 mg 4 times a day, after 6 months i had lost over 27 kilograms, developed GERD and SIBO, had no appetite, could only eat small light meals to avoid vomitting, was very weak, and became like a scarecrow my bones showing. The Scleroderma in the first instance causes ulcers and bleeding in the stomach and together with low protein absorption leads to weight loss. However after a lot of searching and discussing with doctors i understoood that poor digestion was also exacerbated by the combination with Omeprazol which is a PPi acid blocker to minimize the acids in the stomach, (since mycoplenalate is very acidic). Apparently PPI blockers have many bad side effects one of which is SIBO amongst others, you may check this easily on the net. To aleviate the problem, my Rheumatologists immediately stopped CELLCEPT and started me on intravenous Cyclophosphamide for 6 months which thankfully halted the Scleroderma. After these 6 months they put me back on Mycophenalate again but changed to MYFENAX which is easier on the stomach and then later again changed to MYFORTIC which is absorbed in the small intestine (instead of in the stomach). After this i was then able to minimize intake of Omeprazol and eventually stopped it completely. My appetite has returned since, i definetely feel much better, but still need to be very careful with my meals, choosing only light and easily digestible ingredients with low acidity, as a result i have slowly begun to gain weight for which i am very happy, of course it a very slow process. I still have GERD with Acid reflux which apparently has become a permanent problem, so to deal with this i susbstituted with other more "friendly" acid blockers whenever needed. I hope this helps, just wanted to share my own experience, but please do check with your doctors, above all don't give up, keep your spirits up high, and fortunately they are continously developing new therapies.
Thank you so much for your reply because I think you have answered a lot of questions for me. I purposefully want to stop the esomeprazole because I read it also cause you to develop cold more frequently as it lowers acid which would help to neutralise viruses from developing. I too have developed SIBO as well and as such I am very concerned about the combination of medication. I am seeing my rheumatologist in a few days so I will definitely bring this up to him. My GP has now said I am skin and bones and it bothers me because with the loss of weight I feel tired and fatigue a lot I know it comes with scleroderma but I do believe that weight loss is contributing more to it as well. I will definitely bring this up as I think they are considering starting my me on rituximab (forgive the spelling) which I heard is intravenous as one they said she doesn’t think the myfortic that am on is working to minimize the flares. Hopefully I can report in good results after the session.
Yes, dear Anniw, skin and bones that would be the right description, also muscle loss, my doctor told me that due to lack of protein my muscles were being "consumed" and all this caused me incredible fatigue on top of the Scleroderma. In my case the Scleroderma was aggresive so apparently the intravevous chemotherapy was able to stop it. The mycophenalate was not really effective, I was told mycophenalate pills are suitable for prevention purposes only. I hope everything works out for you, as said for myself am much better now, i wish you good luck !!!
I should also mention that after all this, i am now being treated with immunoglobin which decreases the inflammation in my muscles, took away the pain.
Sorry to hear about these problems. It sounds like you have some very helpful responses. My wife suffered the same weight loss as you but over 10-11 months and BEFORE mycophenolate was prescribed, they thought she "just" had bronchiectasis in the lungs. The respiratory consultant, once the tests proved she had SSD, said the weight loss was entirely due to the underlying SSD disease which also caused Raynaud's. Hence I am no expert but the weight loss was not related at all to the immunosupressant. The latter did, though ,cause digestive problems that reached a critical level before the dosage was lowered, because happily no more lung fibrosis in the last year.
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