Newbie seeking advice! X

[Traceyuk1968]

Hi all.

I am a newbie on here! Just wondering if anyone who ended up being diagnosed with Dermatomyositis, had a normal ck result initially?

I have had a chest rash for years, that looks like I have been sunbathing with a sleeveless t-shirt on, and a rash on my upper back. I also have had a rash on my arms for years too. I now have severe muscle weakness in my arms and legs.

I think I have some of the hand signs too but have added a photo as not sure. ...I don't seem to be able to upload more than one?!

You can see from my profile what I am diagnosed with currently and am on biologic drugs for part of that!

I am wanting to ask my rheumatologist to do further tests but don't want him to think I am just "seeking a new illness"!

Any thoughts/comments would be much appreciated

Xxx

[Fiphillips]

Hi Tracey,

It sounds suspiciously like DM, my CK levels were never very high at all initially- at the worst when I could barely walk or get myself dressed my CK was 520 - raised but not by much at all. It soon reduced down when I was on steroids and now reads at around 48! I am much better but still have active Myositis. So you can have Myositis without high CK levels.

You should bring it up with your Rheumatologist for sure - you will want to get the correct medications of course.

Good luck with everything and hope you feel better soon. Xx

[Traceyuk1968 in reply to Fiphillips]

Thank you for your reply x

my ck was normal normal! But I have read online that if the condition has been longstanding then the ck could be normal?

Xx

[Jo-Goode Administrator]

It is possible to have a normal CK with Myositis and have symptoms. I relapsed after 13 years remission with normal CK and severe muscle weakness & rash and strangely two years later when I was doing much better with treatment CK suddenly went high for no apparent reason.

If your on other treatments it could be masking symptoms or it's possible you have been misdiagnosed, so might be better to seek another opinion. There is a list of specialists in Myositis on the pinned post and you could ask your GP to refer you.

[Traceyuk1968 in reply to Jo-Goode]

Thanks Jo x I've joined your Facebook group and posted there too!

[Anne88]

My CK levels have always been low (between 32 and 48). I have amyopathic dermato myositis, meaning muscles are not involved, but all the rest rashes, mechanic hands .. i get, although they are well under control with the meds. C

[Pee831 in reply to Anne88]

Hi, I am in the process of possibly being diagnosed with this condition, back to hospital Tuesday for results of CK levels also waiting for dermatology referral. It’s been going on for over 4 months, told viral then allergy, just think they were clutching at straws all the time. I can not read the rest of your message only get to the bit that says under control with meds then that’s it. What meds have you been given and did they work pretty quick?. To be honest I’m in a desperate state with the burning rashes, the only other symptoms are on occasion shortness of breath and difficulty swallowing but I guess that means maybe muscles are involved, it’s all very frightening especially with the throat symptoms, good luck and hope your meds continue to work for you

P