Hi Candolph. Welcome to the site but I am sorry to read your post. I took was diagnosed with Polymyositis with Anti JO-1 antibody two years and three months ago. I too started out on 60mgs Prednisone daily and 100mgs Azathioprine (Imuran) was added four weeks into diagnosis. I successfully taped the taper with no problems along the way and finished taking it last December. I remain on the Azathioprine to suppress the Anti JO antibody but I remain stable and well. I did a very slow taper over twenty months but it worked for me. I think it's impossible for your Rhrumatologist to suggest you will always need these drugs, most Rheumatologists push for their patients to stop the Prednisone if possible. I have know experience of Naturepaths, there is no recognition of these people in Medicine here in London. My Rheumatologist has always talked about good diet, plenty of exercise and vitamin D. There are many people on this great site who will give you help on what has worked for them. I wish you well, do keep in touch, we are here to help and support you. Autumm

Hi Cadolph, I have been a DM and overlapping Scleroderma for four years. In my experience, I have not been able to get totally off my meds. I do think each person is different with this disease. Some people (usually young 20's to 35 range) are able to successfully get off all medications and go into a remission. I am 51 with excellent disease control, but no remission.

I take 5mg Prednisone and 750mg Cellcept daily. I believe in totally following my doctor's recommendations. I tried tapering to 4mg of Prednisone twice, but I flared each time.

Here is my opinion on naturopath stuff... It has not worked for me. I think it will not take you long to find out the truth. Do watch your pocket book.

The Myositis Association website at www.myositis.org is a good resource for reading up on DM, PM, and IBM.

Keep us posted. Best Wishes.

In the beginning of my PM journey, the neuro said that I would never get off meds. However, after 3 years taking prednisone, I've been off prescription meds for another 3 years. My M.D. believes in integrative medicine and helps me determine the best supplements for me. Plus I do my own research. In order for me to get off prednisone after that 3 years, she transitioned me over to hydrocortisone, which actually worked better for me. I also took a supplement called Drenamin from Standard Process a year before and a year after getting off both prednisone and hydrocortisone. In addition, I take an anti-inflammatory called InflamericZyme (aka, Joint Comfort) from Olympian Labs, along with a supplement called Lauricidin that my doctor suggested. In addition, I take 5,000 iu's of Vitamin D3 daily, just to keep my vitamin d in the normal range. I do realize that if I can't bring a flare under control quickly that I might have to go back on prednisone, but so far I'm okay. As trpt1 mentioned, we are all different. So what works for me, may or may not work for you. Best wishes to you for finding what does work for you.

Thanks Everyone. Thanks for all your support.

It is a very individual road. I just want to explore doing everything I can so that I can possible come down on the prednisone due to the nasty side effects. I may need to seek out another Rheumatologist for another opinion.

Cheryle

Hi Cadolph. I think seeking another opinion is a great idea. Try to find a Rheumatologist at a teaching hospital as such a person is more likely to have experience of our rare disease. Best wishes. Autumm

I went to a new Neurologist and she told me that I will always have to be on at least a low 5 mg dosage of Prednisone my entire life and i am now tapering an would have gone down to 15 mgs this week if I had the smaller pills instead of cutting a 20 mg pill in half. I tried cutting pills in half before and they crumble up too badly and I didn't want to deal with it. I no longer have the patience for these type of things. If there is a small pill I prefer to pay for those, I have a few 5 mg pills, but don't want to use them up and then have to deal with the insurance company saying that they just filled a RX so I will get both 10 mg and 5 mg on the same date and take those for a week then go down to 10 mgs and hen 5 mgs and hurt like someone is killing me I currently take my prednisone in the morning and by afternoon the dosage has worn off and I am in so much pain that I just want to cry, but I am trying to deal with it, Today I went furniture shopping and walked a little too much and by the time we got home I was finish. I also realized that it was due to my body being without prednisone and sorry me took 10mgs and went to bed. I also had to take my evening dosage of all my other meds which included my Opana ER 30 mg and Lyrica. I don't believe that the Opana and Lyrica help that much, but I wasn't going to deny myself the meds an now as I write this the numbness and tingling are constant and I just deal with it and pray that I can get up in the morning for church.

Hi Brenda. You can buy a pill cutter at your Pharmacy to cut pills into perfect halfs very easily. I bought one here in London for about 1. It's small, made of plastic and very easy to use. It's important you take your drugs exactly as your doctor instructs. Best wishes. Autumm