Hi McCourtjs. I am sorry to read your post. These are my thoughts on what you are posting. It will take the MTX a good six months to start working so your taper from Prednisone is way to fast. Stay on it until the MTx kicks in and then taper it very slowly, after 10mgs I tapered by 1mg a month. Autumm

Thanks for replying Autumn. My doctor wanted me to stop the prednisone, because I had been on it since last April. I will talk with him on Monday. I had a terrible night's sleep with aches all over and felt nauseous this morning. I took 5 mg of prednisone to see if it will help. I have been sleeping 10 hours a night except for last night and napping during the day from fatigue. I'm feeling very low mentally.

Hi Mccourtjs. Its. Dry hard for you when they can't get the Meds right. Are you seeing a Rheumatologist with experience of Myositis and the Meds. I took prednisolone and it took me 14 months to taper very slowly and I did not have to change the sparing drug as you did. I did find I felt sick and very tired on the taper at times but just pushed through it and came to recognise steriod withdrawal from a flare. It will be interesting to see where your bloods are when you see your doctor If its a flare they will tell their own story and you will need more steriod. Do tell us how you get on. Don't be too down, it can be tricky sorting out the Meds. We have all had our problems but you too will get there. Autumm

Hi Mccourtjs. Its very hard when they can't get the Meds right. Are you seeing a Rheumatologist with experience of Myositis and the Meds. I took prednisolone and it took me 14 months to taper very slowly and I did not have to change the sparing drug as you did. I did find I felt sick and very tired on the taper at times but just pushed through it and came to recognise steriod withdrawal from a flare. It will be interesting to see where your bloods are when you see your doctor If its a flare they will tell their own story and you will need more steriod. Do tell us how you get on. Don't be too down, it can be tricky sorting out the Meds. We have all had our problems but you too will get there. Autumm

I do see an experienced Rheumatologist, Dr. Koumpouras. He is the director of the Lupus center at a hospital here in Pittsburgh. Based on my body signals, I think that I am having a flare. My rash has been worse, my forehead is very red, my eyebrows are swollen, more aches etc. and mentally I am very low. I have to make a big decision in the next week about work. Take a sabbatical which will be very difficult financially and cancel vacation plans or go back to work which I don't see as possible today. I was surprised to read in your post that it takes Metholtrexate 6 months to work. I thought that it was 2 to 4 weeks. Lots to talk about on Monday with my Rheumy.

Hi Mccourtjs. It sounds like your doctor may need to adjust your medication dosage. It is ideal to be off prednisone, but if you have inflammation, fatigue, red rash, etc.. then your blood work will probably indicate a need for steroid. I do think Autumn could be correct that you may have eliminated the prednisone too quickly.

Once you taper completely off a steroid, then there is a risk of having an adrenal problem if you get sick. Adrenal insufficiency is low sodium, low blood pressure, low blood sugar, and dehydration. Drinking Gatoraid is very helpful to maintain a sodium, sugar and hydration balance. You should take your blood pressure regularly and watch your blood sugar too for several months. Adrenal insufficiency is a life threatening complication, so especially watch your blood pressure!

There are good alternatives to prednisone. Medrol is a blend of prednisone that many people prefer and is actually a weaker steroid dosage. There are different blends of prednisone out there so talk to the doctor. I think Shawna knows a lot about the different steroids and would be a good source for information.

I wish I could be totally off steroids, but I have active disease. I take only 5.5mg of prednisone daily along with 1500mg of cellcept. I feel like this is a good "maintenance dose" of meds for now. I can function relatively normal with well-being at this time.

I have had DM for three years. I have learned that dosages need to change for flares or if I am not feeling well. The whole idea is the medication should help you feel well to function on a daily basis.

Do discuss the subject of adrenal insufficiency with the doctor. Good luck on your steroid choice too.

It only took 3 months on Methotrexate before I noticed a huge difference. My CK levels came way down and I simply felt better. But it took me almost 5 years to get off Prednisone. The first attempt to taper failed so we moved very slow the second time. The second taper took 3 years to get off. I haven't taken it for a year now. When I came off, I felt terrible for almost a month. I am weaker than I was on it and I feel more fatigued but I was very motivated to get off and was willing to put up with the remaining side effects.

No one wants to be on Prednisone a long time. But with this disease, sometimes there isn't an alternative. I was on 3 mg every other day for about 6 months. I could have maintained on that level ongoing but wanted to try to get off. Luckily it worked for me. My doctor was prepared to keep me on it indefinitely.

Hi McCourtjs . It really does read like your taper is too fast and the MTX needs more time. Don't make any quick decisions until you see your doctor. If you go back on the steriod and taper very slowly you will be ok. I am sorry you are so low in yourself, I hope you feel better after seeing your Rheumatologist. Please let us know how you are doing. We are here for you. We have walked your journey and we understand. Autumm

Thanks to everyone for your thoughts. Hearing your stories help me to understand the journey that I am on. I just want to get to the point where I can work. I can deal with the red forehead, swollen eyebrows and the hair loss but need the energy to perform for 8 hours in front of a class of high school kids. No decisions until I see the doc tomorrow. If you have any other thoughts please share.

McCourtjs, I taught for two years after my diagnosis with DM. It was rough at first, but my health did improve over time. I taught elementary music K-4. I put on at least eight programs a year and took my show choir and handbells to contest. My school had 1376 children. I had double classes each period with 55 students per class. My job involved singing, talking, moving, dancing, and teaching with a lot of stamina. I naturally worked like a dog with lots of overtime too.

I decided to retire after I was diagnosed with pulmonary hypertension in my third year with DM. I thought carefully and prayerfully about my decision to retire. I did not make any major decisions quickly.

I do think it is important to give yourself time to get adjusted to the meds. Things will get better over time. Do not be afraid to ask for help. It does not matter what the boss thinks when you are sick, just do your best. Plan ahead well so you can accomplish needed tasks.

I will put in some prayers for you. Do your best in this hard situation. Keep us posted.