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 HIGHLY recommend it also. It is a free workshop and the community is great. Everyone has something to offer and something to learn. I honestly do not know where I'd be if I hadn't found the site (probably still making myself wrong and vacillating in and out of denial)

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.

It is a little dangerous the higher the dosage, but I am on 80 mg prednisone at the moment and have only gotten one or two new blisters over the week. It seems to stabilize me really well, the side effects get worst though like the stretch marks before they weren't a problem but now they've all started to open and be sore. But the pemphigus seems under control when i'm on 80 and up.

I was up to 140mg a day. It was very very difficult, I stayed on this dose for two months then started to taper down. imuran was added. I went into remission for over a year. Then two weeks ago I had a major outbreak in my mouth. back and a bit on my arms i am now taking 40 mgs of prednisone and 150 of imuran till I see my doctor again . Kind of depressing but this outbreak was nothing like my initial experience with the diseasewhich was far worse.

RLnack what do you think trigger you ourbreak? I am on 150 mg of imuran and 15mg of prednisone. I just finished my chemo treatment 2 weeks ago. I have a stressful job and making plans to quit. I want to go into remission and stay. I know for me emotional stress is a trigger for this.

Recently diagnosed with Pem by family Dr. he put me on a decreasing dose of prednisone for 1 week. It is somewhat working. How long should I expect to have to what for a Derm referral!!