Polymyositis & Dermatomyositis Support Group

When my neuros started me on prednisone, one of them said that it could take 6 weeks before I saw any improvement. Fortunately, it didn't take that long. But I know for many it does take awhile. So don't get too discouraged. Most doctors seem to put PM/DM patients on another medication rather quickly, but my neuro didn't see it that way. His philosophy was that if prednisone worked, then he wouldn't add another med until necessary. I was blessed, because prednisone worked well for me. Again, not everyone responds well to prednisone. We are each so different with these diseases.

Best wishes on all of your testing. The important thing is to find a correct diagnosis whether it is DM/PM/IBM or something else. It took me at least a month for the prednisone to begin stopping the weakness. I could feel more energy immediately, but the muscle strength takes longer. If you do not have DM, PM, or IBM then it may be a related connective tissue disease like scleroderma or Lupus. Many people will have an overlap illness also along with DM, PM, or IBM. The joint pain you mention sounds like RA or another illness since it is at the onset of your symptoms. Joint pain for people with DM, PM, IBM is usually something that happens later as an indicator of additional issues. Being out of breath is a concern and could be several things. I hope you get good answers soon and keep us posted.

Hmmmmm - Are you aware that prednisone can cause muscle weakness in some people? It sounds like the prednisone is doing you some good - your pain is decreasing, but it may have some other unwanted side effects. This is a compllicated disease to treat, and it may take a while to get the right balance of medications. I agree with the others that you might have some overlapping diagnosis, but this is a problem that is way beyond my pay grade!

I responded well to the prednisone very quickly (the only problem is that in my case it also made me a raging insulin-dependant diabetic) At this point I am tapering off prednisone (because of the weight gain and diabetes) and am trying to stay in remission on cellcept alone. This remains to be seen.

I hope you can continue to get relief and hope your strength improves soon - Blessings, Kathy

I think it took a few weeks before I felt like the Prednisone was doing much. I was on 60 mg daily which is a pretty standard starting rate for this disease. I was on it 6 months before they also put me on Methotrexate with the hope I could taper Prednisone. I've been on Predinsone 4 years now....still working on my taper. I'm down to 3 mg every day. I still do weekly injections of Methotrexate at 25 mg weekly.

One thing to note, the Predinsone isn't going to make you stronger. It will stop the damage so you can start working on building strength. You need to build the muscle up again. I highly recommend when that time comes, that you see a Neuro PT or at least a PT that understands muscle disease. We need to exercise in a very different manner than a healthy person.

Good luck. Please keep us posted on how you are doing.

This is so ling and convoluted but here goes....When CPK's came back elevated in the beginning (twice) I was sent to a local guy for an EMG. It cam back myopathic but not "inflammatory". So down to the medcenter to the URU for a biopsy ONLY. Biopsy comes back inconclusive. Rheumy says go back and see muscle guru in med center and get tested for other stuff......WELL, after the visit yesterday I found out that since the guru did not do a full clinic exam, EMG and biopsy he does not want to give a diagnosis. So I was really going back in yesterday for him to check me out....why did we not do this during the biopsy.....who knows. Clinical exam comes back myopathic....ok, I am weak.....we have known this! He did more blood work I will get back early next week. (May be lower since I am on 3 weeks of pred) Now he says he wants me to come back and do ANOTHER EMG (my insurance does not want to pay for a second one 2 weeks later) since he did not do the first test! UGH, UGH and double UGH!!!
So here is the frustration.....my rheumy said with all my overlap symptoms no matter what the biopsy said we are moving forward with treatment (continue prednisone, add in immune suppressant drug and see how we can scale down on the pred).....no more tests!!!! Lets just do that!!! I feel so good on the prednisone, being out of breath is a little better, reflux is better raynauds is better....let's go!!! I canceled the appt for the Monday EMG. Left a message with Rheumy and he will call Monday. In the meantime I have 3 kids, work full-time, have spring baseball, competitive and high school soccer, WHINE< WHINE< WHINE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Thanks for listening.....I think I feel better! HA!

You are very welcome to come here and "BLAH BLAH BLAH", we are all here to help and support you. It must be very frustrating for you at the moment.
I was first put on 60mg of prednisone, it took six weeks to kick in and start working. i too felt breathless sometimes, and all I was doig was lying in a bed. it definately got my muscle working again, they also added in a drug called Azathioprine, it is also known as Imuran. They started me off on 50mg and have now taken it up to 100mg. My rhuemy is slowy tapering me down off the prednisone, as she says its not very good for long term use. The Azathioprine also took a good six weeks to start noticing the differince. i am very lucky as both medications have worked well for me.

My neurologist is the one managing my Prednisone levels and yesterday he told me to reduce it to 15mgs a day. I am going to continue with 17.5 until Sunday since I have already cut the pills in half. He did give me some information that I was concerned about. I couldn't understand how I was feeling stronger while he was decreasing my Prednisone and he said that the Cellcept is what is helping me. I am on 2000 mgs per day. I was so confused. I thought the Cellcept was just to suppress my immune system. I am learning.

AliveAgain, how long were you on the prednisone before the added the Imuran? I am ready to get going on any meds that will make me feel better!!!!

prednisone/prednisolone is a very powerful steroid drug it really kicks alot of diseases butt! so obviously its very bad for you for me within a few months it exaggerated the delicate skin and flesh issues ie carrying a cup of tea after a few weeks caused pressure lesions tjat have left alot of sish svars on my hands. long term in general more than two years depending dose it buds up toxins in you and causes many horrible issues le osteoporosis, blindness etc etc. it was the original and only treatment for many diseases thats why immunosippresents mafe to avoid organ rejection in surgety were found to aid and replace steroids. there still nasty powerful drugs just less lethal long term. azothioprine for me i got upto 150mg and felt ok but doc ripped me off put on 50mg as he said my red cell cou.t had dropped way below bottom safetyline i was bed bound for months eventually went back on pred now on ciclosporin a mushroom based immunosuppresent worse than asiothioprine gives jigh blood pressure. there are other drugs that can be added in to tbe mix there is one for molaria thete antiinflamatories painkillets blood thinners etc. also most immunosuppresents only really work after about 8to12 weeks as ghey have to build up. for me pred started working with in days and the second time round now at 3 months on i felt better every week until about 3 weeks ware i almost felt human again. still on 12.5mg and most days i feel fairly human but i got alot of joint and hand and bone growth issues only surgery can fix now but getting tnere :)

I was misdiagnosed for at least a year. Docs kept saying I just needed to exercise more, even though I was telling them I could barely move and this was definitely not the normal me. Finally found new doc who LISTENED to me and did additional blood tests and discovered CK count of 3400.

Started 60 mg prednisone March 30. By end of first week, breathing was better and some strength was returning. Now at April 24th, have regained much of my lost strength. Making progress every day, but side effects are kicking in like moon face which is becoming painful. Also feel like I'm on verge of sore throat, have achy eustacian tubes, and some swelling and tenderness below neck.

Not supposed to start taper until May 8th, but wondering if starting sooner is an option since CK count now down to 238 and would like to ward off more prednisone side effects which now seem more detrimental than the polymyositis.

I also take Alendronate weekly for bones. Doc did not mention vitamins, but after researching, I take daily multi vitamin before lunch and also 2000 IU of Vitamin D-3 before dinner since many people said their D was affected. I missed the D twice and it seemed to make a difference the next day.

I am hopeful and would like to get off the meds asap.
Wishing good luck and peace to all in dealing with this kick in the tush.