Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

317 Members
2,891 Posts
0 Online
Muscles & Bones
/ Polymyositis & Dermatomyositis Support Group

Back to the taper

amberhere
amberhere
Morning all, my Rheumy has just upped my MTX dose to 17.5mg to try and get off this awful steroid - now down to 7mg and holding my own but with a bit of pain, but apparently this is to be expected. I so hate/love this steroid. Why don't they invent one that doesn't have so many side effects? He also said to try to lose weight more - which is really difficult if you've got a big appetite! Trying to do more walking but the old DM pain is coming back in my wrist and leg - what a mountain we climb. How successful have people been in tapering completely off the steroids? My MTX will be increased again in a months time after another blood test. I feel the pressure is on a lot to get off the steroid as quickly as possible - although it has taken me 1 1/2 years to get this far!!
autumm
autumm
Hi Amber. You may well be successful getting off the Steriod this time as the MTX is well in and they are increasing it a bit. Do it very very slowly one month at a time, it's not a race, it's all about getting off it. Do remember it can take about seven days to get over each taper and you may well have feelings that you are going backwards. I found this very hard but came to understand it was Steriod withdrawal and not a flare. Tapering can be hard but the rewards if you can do it are huge. The old Steriods although they save our lives can make us weaker, cause us pain in joints and of course the weight gain. Having said all that some remain on about 5 mgs and it's such a tiny dose it hardly interferes with the body. Good luck Amber, I am now 10 months post Steriod, it was hard but I feel better fir it, I also look better and have just lost a stone in weight. One more stone to go. Best wishes. Autumm
lexisgirl
lexisgirl
I got off but I had to up my MTX to 25 mg weekly and then it took me almost 5 years to get off. I've been off Prednisone for over a year. It was tough and I gave up some mobility but it was worth it to me to get off it.

My doctor said not many can get off successfully but it is worth a try. The goal should be to get as low as you can. Around 7 mg, you are taking the same amount as your body creates on it's own. The side effects start reducing too which is nice.

I hope you can continue to taper and get off too.
amberhere
amberhere
Thank you both for your replies - well done Autumm for losing the weight - did you diet or did it come off naturally as you lowered the steroids? Lexisgirl - you must be an extremely patient person! You have done really well and you both are an inspiration - thanks for the advice.
autumm
autumm
Hi Amber. I had to diet to lose the weight. Still dieting as a stone yet to lose. I just cut out the obvious culprits and reduced the portion size. It has taken since June to lose it but I am losing it and feel ok. I looked at a picture of me on a boat in Turkey last June and did not recognise the 'fat lady'. That did it, I started on the same day. Good luck if you are ready to make a start. Autumm
trpt1
trpt1
Hi Amberhere, I was not able to completely taper off Prednisone. I will always need to take a maintenance dose of 5mg. I will flare when going down to 4mg. My disease gets too active.

You know tapering is not a race. Some people have been very successful to get off of Prednisone, by switching to a different form of corticosteroid like Medrol or Hydrocortisol. There are different blends of steroid that might be helpful to aide in getting off the steroid, especially when you hit the 5mg and below levels.

There are several people who have experience with the different blends of corticosteroids that might be able to give their below 5mg tips and experiences.

Best Wishes.