garden1

[garden1]

doe,s anyone take the drug mycophenolate and found good results from it .i am fairly new to it and hopefuly i will be cutting out the steriods i dont know if its a coicident but i have many bouts a day of severe sweating has anyone else had this or is another strange thing with betchets ?

[rosshi]

hi I have been taking mycophenolate for many years now as it has made a big difference to my Behçet's it's more settled than its ever been, before this I have tried the usual suspects; (in the early days) colchicine & azathioprine (and later) cyclosporine and then cyclophosphamide, throughout all of this time I have been taking; 1st: prednisone steroid high and low doses for around 20 years and then; 2nd deflazacort steroid for about 16 years; as prednisone was giving me brittle bones, only 1 deflazacort a day now 6mg - however we are all different so I can't say if mycophenolate will work for you, you will have to have regular blood test; liver function being the main; once or twice a week then once a fortnight & finally once a month, mine have always been fine (fingers crossed) it's interesting that you mention sweating, I too get this, I can no longer sleep under a quilt; unless I want my own little sauna so now I sleep under a fleece it also happens with hot drinks and meals; wringing wet t-shirt sweats I guess now you have mentioned it, it is likely the mycophenolate.

My advice would be to try mycophenolate especially if your Behçet's syndrome is giving you a rough time, and wait and see if there is any improvement if so stick with it, gut if there's no real improvement I'm afraid you'll have to walk the road most of us has had to travel and find a balance of meds that suit you.

I wish you every success on your journey, please feel free to ask me anything that may be helpful to you.

Best regards,

rosshi

[TomTomC in reply to rosshi]

Any changes of temp makes me sweat. It’s not so much the temperature, but any changes of. So eating hot food or drink makes me sweat. I thought it was the prednisone. It’s probably the Behcet’s, as when I’m well I hardly sweat at all. I had mycophenolate a few years ago, it worked on the symptoms but my skin became waxy especially my face and a large amount of my hair fell out, it also made me vomit and very tired.

[GlastoGal]

Hi garden1

I’m currently on week 11 of MMF (Cellcept) taking 500mg twice a day - with a 10day break after 7wks to take an antibiotic. I was told it can take 3-6 months to notice it working.

I can’t say I’ve noticed any real difference yet especially as I’ve had to increase my steroids (Prednisolone) from 5mg up to 7.5mg as I had some skin ulceration (vulva ulcer & leg rash). So So I’m unsure if it was the Cellcept or the steroid increase which eased my joints and lessened my fatigue (I’m guessing steroids). Since tapering my Prednisolone from 7.5mg to 6mg this past week my fatigue has increased and although not awful, my joints pain (which is mostly wrists & hands, ankles & feet) is more noticeable.

Higher doses of Prednisolone have always controlled most of my symptoms and kept me functional, however, to try and get off steroids I’ve tried Azathioprine (stopped after 3 wks) which didn’t agree with me - caused terrible abdominal pain and constant diarrhoea. My worst symptoms are fatigue and joint pain and I only have ulcers occasionally which I can work with - compared to others my ulcers are very mild. I am not confirmed Behçets but have been ‘presumed’ since October 18.

Sweating... yes!!! I went on holiday last year to the Balearics and I sweated profusely- the water was running off my face and hands, hair soaked and a stream running down my back!! I blamed it on the steroids - I was taking around 15mg/day then. This year on holiday wasn’t just so severe and my dose was 7.5mg.

I also find when I do any physical exertion - hoovering, washing floors etc I am sweating when I wouldn’t have done before - not sure if this is meds or BD - I am also menopausal and on HRT so this probably is a factor too. My energy levels are fairly low so doing even menial tasks now requires more effort and energy and it tires me so I have to sit/lie down and rest after.

My next appointment with Rheumatology is next week so interested to hear his views on my MMF experience to date and how to proceed.

Good luck!

[SCMW]

I haven’t taken this but have had issues with sweating. But like some of the other forum users I’m 40 & at least peri menopausal. I’ve tried sage tablets. Become clothing has been quite helpful. Am still trying to work this one out. I’m only on colchicine currently. Best wishes

[garden1]

garden1 thankyou all for your replys ihave found them helpful . ihave had betchets many years confirmed about 15 years ago i am trying to come off of steriods as over the past five years my bones have weakened and i have 5years of different fracturers due to falls hopefully i will try and continue with the mycophenolate and my problem with severe sweating will subside many thanks to you all on finding this site you dont feel alone .best wishes