Well when I first got sick with DM I was on high dose prednisone for about 4 months until I went into remission. I went off the meds slowly and stayed in remission for about 2 years.

Then I got sick with DM again and went on chemo for an immune suppressant because the prednisone wasn't doing enough for me. I was on chemo for about... maybe a year and a half? Until I went into remission again which only lasted about 7 months.

This time around I've been on chemo for about a year and a half at an even higher dose than before and it doesn't look like there's any hope of coming off of it any time soon. If you're auto immune disease is going crazy I don't think there's any option other than an immune suppressant of IV infusion therapy, but you have to be doing something to try to keep it under control.

I'm sorry that you're losing your hair; that can happen... have they thought of trying you on a different kind of immune suppressant? Sometimes it takes time to find the right one for you.

I'm similar with Hopeful in that I've been told I will never get off Prednisone and methotrexate. Originally, I was told I would only be on prednisone for less than a year. I was very disappointed when I learned otherwise. I have tapered Prednisone though so it does get better.

I do lose hair every day. It is a pain in the butt.

I just had a rheumy appointment last week and was given a new schedule for tapering prednisone: 1mg/year!!!

I've never been below 6mg without having a flare, so we're hoping this slow and cautious approach will work. My doc would prefer that I was taking another immunosuppressant, too, but I've tried mtx, imuran, cellcept, and tacrolimus and just can't handle the GI side effects. Rituxan infusions have worked well for a couple bad flares.

For me, finding the right drug combination took two long years, and by then I felt like half the battle was won, Like everyone, I'd love to have a drug-free remsission one day. But life will be pretty good too if I have to maintain on low-dose prednsione and rituxan (or other new biological) infusions every couple years,

Lucky

I agree when I was first diagnosed they told me it wouldn't take long and I would be off the meds. When I went into remission they told me it went away. HA! Like auto immune can go away. For my two yr stent of remission I believed the doc but when I relapsed I was in for a shock.

I've been gradually reducing Prednisone over the last 6 yrs and may one day be able to do without it altogether but when I told the specialist Professor at Toulouse if that I wanted to reduce the dose of Imurel (Imuran in the states) because I was worried about long term side effects he said that the alternative would be much worse and that I would be on it for life.
Currently on 9 mg a day Prednisone. !50 mg a day Imurel for as long as can remember but no hair loss. I feel for you.

I was recently (2 years ago) Diagnosed with DM and RA, and like Lucky here, I have had great luck with Rituxan and prednisone, tho unlike her I also had success with Cellcept. My initial regimen was 60mg prednisone and 2g cellcept daily. about 10months ago my Rheumy added Rituxan and canned the Cellcept today, im taking 8mg of the prednisone and rituxan every 5-6months depending on how im feeling... and unless it rains i do ok.

Time frames seem to vary widely with how long you will be on them, from my understanding it can be an off and on affair.

If this trial works for you, your Dr will consider further treatment, risk v. reward, and discuss other options with you if you are having difficulty with the current method of treatment i suggest talking with your Dr about modifications to it or changing it completely.

I hope your days get brighter, Free.

Jonathan

Depending on your disease process and your response to treatment...you can be on them for the rest of your life. I have come to grips with this idea myself. I am off of the prednisone, but still take plaquinil and methotrexate. Been on mtx for 4 years and plaquinil for about 2.

Hi - I lost about 20% of my hair until the prednisone really kicked in. The hair is now growing back in. Unfortunately the 40 mg prednisone also make me a raging diabetic so we started tapering right away. I have been on Plaquinil, Imuran and Cellcept. Currently on Cellcept 2500mg and 10 mg prednisone and doing well. I was diagnosed Sept of 2010, but all docs were aware that something just wasn't right for about 1-2 years prior to dx.

I believe your hair will come back in once the inflamation is under control. In the meantime, there are some really cute hats out there.

I was very gradually weaned off prednisone (August 2009 to March 2011) from 60mg to 0. My rheumy recommended me staying on methotrexate; in her experience, those who stopped had a relapse which can be a real bummer physically and mentally. So, I guess I'll be on MTX until I die.

guys im on prednisone, and imuran but imuran causing me to vomit, i tried methotraxae but it didnt work, i dont feel good at all,,,please help with words of encouragment i really need them, im so depressed