Polymyositis & Dermatomyositis Support Group

I have PM so I am not too familiar with the rash stuff of DM. I know I've been tapering from 60 mg for several years. I'm currently on 4 mg every other day. My Neurologist feels you have to taper VERY SLOW so your body doesn't notice it is gone. I figure I will be on it at least another year. My Neurologist also told me that many people with myositis never get off Prednisone because the pain and symptoms come back. I feel that honestly, I would rather be on 5 mg the rest my life than 60 mg every 8-12 months.

I have had sleeping problems since I started Prednisone in 2008. I take an over the counter sleeping medication. It works like a dream.

I hope you can get back to being 21 too!

I had spots on my chest like that, but i can't remember how much meds I was on at the time. Being tired is normal for decreasing prednisone. I had sleeping problems too. how much are you decreasing at one time? it could be too much. but its a good thing to talk to the assistant. I hope you start feeling better and that your 21st year is great. I'm almost 21 myself.

As long as you taking prednisone I think you will always have sleeping problems, I been on prednisone for 6 years and the higher the dosage, the less sleep you are going to get I think, so you may have to use some sleep aid......

Well, it was increased from 5mg to 40mg in October of 2011. Since then, I have decreased to 25mg per day, and that was in two increments. I was decreased to 30mg and then to 25; while also increasing my Imuran...which I'm not exactly sure what it is meant to do, or if it will help. I feel like I'm running out of options.

The Imuran is "supposed" to take over at some point so you can stop the steroids. That is why they are upping your Imuran dose as you ween off the Prednisone. Unfortunately, not everyone is able to totally ween off the steroids no matter how much of the "secondary" treatment they are on. I am having a hard time weening off the steroids myself right now. My doctor says if we can find a good dose of the steroids again then she will increase my Methotrexte. Again, in hopes that it will take over so when we try to ween again, I hopefully will do ok. "hopefully" always being the operative word here. :)

When I was really sick they suggested prednisone and I was so scared to get on it, but I also felt like I was going to die at the rate I was going. So they put me on MTX and prednisone and told me it will take 3 months for the mtx to work and then I will have weaned off of the prednisone by then. Well, I am still weaning and it is 8 months later. It has been difficult to know when to change the dose or when to ride out the pain at each decrease. I am getting my adrenals checked at the end of march and I have to be off of pred for the test, I am down to 2 mg/day and I am going to go ahead and go to one then zero as planned no matter how it feels so I can get the test. I have a love/hate relationship with prednisone and I am breaking up with it completely. They also added plaquenil a few months ago and that really helped with my skin and gastro issues. My doctor is talking about trying IVIG in April. I am sorry you are struggling, but hang in there, tell your doctor you are not good with what he has you on and what are other options.

@Maruska -I hear you. I went down to 7.5mg every other day yesterday from 10mg every other day and was dizzy. I know I will have side effects and since I have steroid myopathy, need to get off pred (been 18 mos). I didn't know you had to be off pred to get ACTH test - interesting. I tapered 1 mg a month on the every other day. since last August so hopefully the adrenals have kicked in.

@ madisonmeadows....yeah the endocrinologist told me that you have to be off prednisone to get the ACTH test and then he laughed and said do you know what the treatment for adrenal insufficency is??? STEROIDS! I didn't find that very funny ;P

@maruska - that is not funny!!!! Maybe he was making a joke!

@ madison.... yes indeed he was making a joke and I even laughed but thought to myself, that is much funnier to him than it is to me!!! He was really a good doctor and I liked his approach but I don't think he got a good sense of how difficult it is to be on and getting off of prednisone.