IBM

[JiffyLemmon1]

Hi All

Had problems signing up to this new site, hopefully all from Myositis UK will come across - I've missed getting regular updates from everyone.

Wishing everyone a very a happy, (more) healthy new year!

Diane

[Jo-Goode Administrator]

Good to see you hear Diane 😁

Happy 2017

Jo

[bon-bon]

Hi Dianne, glad you found your way. Hopefully, it will get a bit easier as we get used to the new site. Are you the Diane that was in the BYM 338?

[JiffyLemmon1 in reply to bon-bon]

Hi Bonnie, yes that was me! I've still got my final appointment on 23/01/17 (they had to cancel my earlier appointment as they had no doctor available).

I understand we won't be told what we were actually on until all these final appointments have taken place. I'm hoping to be told I was on the placebo as I didn't really notice any real difference. However, think I've got worse since not having anything, but believe this to be the lack of anyone checking on my exercise on a regular basis.

I'm hoping to get on the acrimocal trial which is starting anytime now, hopefully find out a bit more next week .... fingers, toes etc crossed!

Hope you're feeling ok.

Best wishes

Diane

[bon-bon]

Hi Dianne, hope you can get on the arimoclomal trial. I would love to get on a trial. Unfortunately, there are none in Canada. I tried in the U.S. for the BYM338, but didn't get in. I will try for the arimoclomal. I sent an email to Kansas to ask to be put on waiting list, but didn't hear back. I think you need to have a doctor that is interested. My doctor in Canada isn't interested. There are some clinical trials in Canada, but nothing for IBM. You are fortunate to be in the U.K.