Advice appreciated

I was diagnosed with polymyositis just over twenty years ago.I was taking methotrexate and steroids at varying doses for most of that time,as well as trying different medications for osteoarthritis.I also have fibromyalgia.

Early last year I began to get severe breathing difficulties which in turn caused me to start having bad panic attacks.after blood tests and chest xrays I was advised to stop taking the methotrexate,and that it was known to cause problems with long term use.at around the same time I was advised to gradually come off the steroids as long term use of them was putting me at risk of diabetes. I have now been off both steroids and methotrexate for over a year. I have gotten weaker and weaker.and still suffer the panic attacks,which are really debilitating.I am completely dependent on my wheelchair,and I am so depressed if it wasn't for my brilliantly supporting family I couldn't go on. I have become less and less satisfied with my local hospitals rheumatologist,and my pain management consultant has asked my g.p to refer me to another hospital rheumatologist dept.

I would love to hear if anyone else in the group has had similar experiences,and if anyone knows whether steroid withdrawal could have anything to do with the panic attacks.l would be so grateful for the group's advice.

5 Replies

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  • Hello Marlene, so sorry to hear you are struggling so much, it sounds like you are getting very little help from your doctors which must be frustrating and scary for you.

    Where do you live? I can advise of the nearest Myositis specialist to you.

    Jo x

  • Thank u so much for replying Jo. I live in the moxley area,which is between Wolverhampton and Walsall.

  • I will give you the option of two (both are very experienced and very caring).

    Dr Hector Chinoy in Manchester

    hectorchinoy.co.uk/

    Dr Harsha Gunawardena

    nbt.nhs.uk/our-services/a-z...

  • Thank you very much Jo.

  • Healthly high fat diet helped me a lot. All organic. Personel hygene and cleaning products. Seafoods, super greens, spices, minerals,vegetables, fruits. grass fed beef. No process foods!!