Introduce yourself to the community!

Why not to start with introducing yourself to the community? You can write about your condition, life experience.. also can ask own questions here: healthunlocked.com/write/my...

[KevinBrennan]

Hi, I'm 54 and have been suffering from sIBM for about 10 years although it was only diagnosed about 4 years ago. Hopefully we can exchange ideas and support, thanks

[Grommitt]

Well, it is very quiet on the old Ning forum so I'll get started with this one.

Chris

[Hidden]

Hi

I'm 52 from Lancashire and have had PM for 16 yrs.

[Hidden in reply to Hidden]

Hi Helen. I was diagnosed with Anti Jo and PM nearly five years ago. I am doing well. How are you getting on. Best wishes. Mary

[Hidden in reply to Hidden]

Glad you are doing well Mary, where are you from?

I'm quite stable really not had any recent flares , the main thing that bothers me is the terrible fatigue you get with Myositis.

[Hidden]

Hi Helen. I live in London. I had the terrible fatigue before diagnosis but it has gone away with treatment. How long have you had Myositis. What drugs are you on and do you know your auto antibody. I was diagnosed nearly 5 years ago with Anti Jo Myositis. I finished the steriod taper in December 2013 and now only take Azathioprine and Vit D. I was lucky as the first line drugs worked for me first time. The Azathioprine took about 7 months to kick in and do the job but it's been a great drug for me. Best wishes. Mary

[Hidden in reply to Hidden]

Hi Mary

I've only just found your message.

I've had PM for 16 yrs, all my anti bodies are negative for Myositis.

My lungs are ok.

You've done well to taper off steroids and remain well with the first drug.

Is your CK low again now?

[Hidden in reply to Hidden]

Hi Helen. My CK levels have been stable since I started the Meds. I am lucky as I have Anti Jo. I hope you are doing well. Mart