I have never heard of this before. It was my lovely GP who gave me the result and said it could be a condition called Polymyositis which is treated with high dose streriods for 3 / 4 months and then a reducing dose over another 3/4 months if the CK levels are reducing.
Does any one on here have it as I have looked into it and so I am now scared, as my symptoms more match the IBM. After talking with GP we are going to wait ( he was willing to start me on steroids there and then ) and see what else comes back from the rest of the blood tests the new rheumy dr did and I am due a MRI scan of hips and lower back. And we will look at all of the results before deciding what to do
I really hope someone on hear has something wrong with there CK and can give some much needed advice. I am 43 yrs old
Thank you for reading this.
Soft hugs. Caroline
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Carolinee71
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Hi - I have been living with Polymyositis Fibromyalgia and Rheumatoid Arthritis for @ 10 years now. There is light at the end of the tunnel, you just have to trust your medical team. They started me off on high dose steroids and gradually tried to reduce them, but it is a very slow process and I got worse when they reduced them so they put them back up again - I am also on Methotrexate - the combination of the steroids and the methotrexate have really helped over the years. Unfortunately it does mean you may be on a number of tablets for many years. I am 61 now and although I had to change my lifestyle dramatically, I still get around and do a lot for myself, but have found that I have to accept help. I have found that too much information is dangerous because all the literature seems to have a worst case scenario. I can only suggest that you talk to your medical team about any worries, my team have been a great support. Hope all goes well.
Can I ask what your ck levels were please? I may have this too, either that or lupus I'm just waiting for my rheumy to comment on my blood test results.
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