Pemphigus Support Group

husband been on prednisone 6 weeks now 2 weeks on 60mg then reduced to 40mg this week pemphigis has spread from scalp to shoulders if anything it seems to be feeding it

From my experience, and what I heard from other pemphigus patients, its best to start very high prednisone dose and remain until there is stopping of disease activity. I started at 80 mg and stayed on it for over a month and only moved to 60 mg when there was minimal disease activity. I got most of my questions answered from the International foundation for pemphigus and pemphigoid.
Thanks
kamalanl

I have been on Prednisolone for about 6 months. I was initially on 50mg per day but an down to 15. I wotked very well however there are some side effects. You should take a calcium supplement and a vitamin D pill to prevent leeching of calcium from your bones.

You should consider taking a stomach acid suppressant such as Nexium to prevent ulcering (one of the lesser known side effects of cortisone use - discuss with your Doctor)
Predisilone is a vety strong drup which has substantial effects on oyur body - when you start to reduce your use of iy start to do so a very slow rate, reduce the dose by, say 5% for five days a a time.

Gaining weight. Not being able to stop eatting. Constant energy that is Not comfortable. Shaking hands that people notice, and comment on is very hard to deal with. Don't know what to say on why I am shaking so bad. Hate taking this. Headaches, and stomach upset.

Just a question..Does anyone think it's kind of crazy to keep going on and off all these meds? The body is fighting a disease, and with going on and off all this stuff makes the body fight even more to recuporate itself, and I am wondering if that isn't making it worse on ourselves. I know we can't stay on it, but the going on and off is really bad withdrawing.

I've been on prednisone about 6-7 months now, it works pretty good on high dosages for me though I know it isn't safe. Everytime they try and pull me off of it though I flare up big time. Some of the issues is eating so much and now all these stretch marks they weren't painful at first but now they're getting to be. And a minor issue they taste awful! if they get the slightest wetness I know that's a minor issue but still

I was on prednisone 60 mg a day before it was actually confirmed. The doctor who is treating me has me on doxycycline 200mg a day. It is not working for me. The pemphigus is in the mouth and not on the outside.

augh I hate when it gets in the mouth! Originally it started out there and on the juggling of the meds it's been coming back to mine as well. Hope you get a med that works.

After reading what you all wrote, I am wondering if I should ask my doctor to up my pred from 60mg a day to more. You all seem to on higher doses that are working more than the other suppresants. What do you think? Does this sound like a good idea to ask to see if it controls this better than the other meds. any sugg?

i have not ever taken more than 60mg of steriods. I really try not to take them. I have put myself back on 10 mg a day until I can start the cellcept which comes with its own set of problems. I hoping this will drive me into remission.