Myositis UK

Poly or IBM?

Not long diagnosed but symptoms getting worse over weeks not months. Mycophenolate I couldn’t tolerate so waiting to hear from bloods if I can have another immune suppressing drug.

Asked specifically which I have to be told again it doesn’t matter they’re all treated the same. But I’m not text book so probably poly and I’m not a man over 50 for IBM.

I’m scared and think I have IBM. I now think I’ve had Myositis a number of years and I’m really feeling the effects this past 18 months especially recently. How can you find out which one you have? Why have toxic drugs that won’t work if you have IBM? Or is it trial and error.

I so wish this forum was more active and Myositis is such a scary disease to have and experience! I feel scared isolated and alone. I can’t work, have high anxiety, and the pain is getting work and affecting my mobility. I’m getting weaker and weaker yet look healthy, so feel no one is listening to how bad I feel.

If I knew what I was dealing with maybe it would help me x

6 Replies

Sorry to hear your not doing well. Did you manage to get a referral for the Manchester Myositis Clinic?

I'm sorry there is not more using this forum, most prefer facebook & the Myositis Forum UK group is very active


Yes thanks Jo I’m in on 18th December but thinking about it I bet I don’t end up seeing Dr Chinoy. Wonder if I can contact his secretary to ensure I see him not another consultant?

I came off fb as I find it very negative which causes me anxiety so cutting everything out that could contribute to me being ill particularly stress.


They have an experienced Myositis team at Manchester, so you will be in good hands whoever you see.

Sorry you found Facebook in general negative, it's not my experience and closed Myositis group is very supportive to one another.

1 like

The group was lovely!

But as I only went on FB and activated my account to ask for help and look at peoples posts on the Myositis UK group, then deactivated my account they removed me from the group :(


I've never removed anyone from the group I run on Facebook Myositis Forum UK, so must have been one of the other Myositis groups.


I’ll check thank you


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