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Hi I'm a 31 year old type 1 diabetic. I was diagnosed with Myositis last week and have been on 20mg preds for 4 weeks while awaiting blood results. Feeling better but not back to normal yet. I've dropped to 10mg of preds now for 6 weeks and haven't been feeling the same since I did this. My symptoms started last year and I was a query PMR but consultant ruled this out due to my age. He diagnosed me with arthritis without as much as an MRI and prescribed meds for 18 months. I opted not to start these and instead get a 2nd opinion. My symptoms vanished then for 2 months and I though I was cured. In Feb it came back worse than before with CRP 162 and ESR 82 and I'm since out of work but so happy to have a diagnosis now ☺

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11 Replies

  • Really sorry to hear about your struggle MB you know you are not alone and welcome, I was diagnosed with pm in jan 2017 but struggled with it for many years now I have a consultant looking after me things have started improving.

  • Thank you. That's good to hear. You must have been going out of your mind to get a diagnosis all that time. It's so hard for people to understand when you can't name it. Glad you're feeling better!

  • Welcome!

    Sorry you have a diagnosis of Myositis. I was diagnosed 23 years ago, but in this time had 13 years medication free until I relapsed a few years ago.

    I would suggest attending a specialist Myositis clinic or have them oversee your care, particularly because of your diabetes as alternatives to steroids should be used as soon as possible. If you let me know where you live I can advise of the nearest myositis specialists.


  • Hi Jo. Many thanks for your reply. I live in Cork, Ireland. Sorry to hear about your relapse. Can I ask do you suffer from an elevated pulse when you have a flare up?

  • Sorry, there are only Myositis specialist in England, so I messaged Angela via facebook to contact you.

    I have had issues with a elevated pulse in the past because of heart issues related to the Myositis.

  • Thanks a million for that.

  • Hi MB1234

    I see youre from Cork. I live in Kerry.

    I was diagnosed with dm over 3 years ago. I attend Rheumathologist Dr Mahommed Haroon in university hospital Kerry. I attend him privately because his public waiting list is about a year long. I believe Dr Mary Harvey Rheumathologist in CUH is very good but it's difficult to get an appointment with her. Ìf I could give you one bit of advice it is to educate yourself as much as you can about your illness, because most Dr's will not have heard of it.

    This is my email if you want to get in touch to talk... I found it makes a huge difference to talk to someone who knows and understands what you are going through.

  • Thank you very much. That is very good of you. I'm currently attending an Endocrinologist in the Mater Private in Cork. It's good to hear other people's experiences and to know there are other people out there dealing with this!

  • I have to go out now but message me anytime you want and I'll get back to you when I get home 😊

  • Thank you

  • Hi. I'm sorry but I gave you the wrong name of the Rheumathologist yesterday, her name is Sinead Harney. My Rheumathologist worked under her for a number of years in cork before coming to kerry. I hope you don't have to wait too long to get answers. It's so important that the right treatment is started early.

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