PM - For 25 Years

I have been a member of Myositis UK for many years but have been unable to attend conferences for the last few. The group advice and support has been a great addition to my journey with PM. I haven't posted much on Facebook as it can be a little overwhelming but I do read some posts most days. I look forward to chatting on this new and so far user friendly site, good things to look forward to.

6 Replies

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  • Hi Kate, It's good to see you here :-)

  • Hi Katie-G I also have polymyositis diagnosed last year I have now developed a rash on my upper arms sometimes itchy and quite dry I usually have really good skin but there is a definite change also dryness skin inside my nose do you think I have an overlapping of something else as I know with polymyositis you can get overlapping don't see my rheumatologist till end of April but this is a new sign I've had it for a couple of months now just wondered if you had this as well good wishes .

  • Hi Pineapple, sorry to have been so long in replying but I had a very bad fall two weeks ago which meant a few days in hospital I am now back home with a fractured leg. I don't have to my knowledge any diagnosed overlaps but a lot of reactions to medicines. I have roseacia on my face and little outbreaks of rashes on my upper arms and back. I just use moisturiser. It might be worth seeing your GP to get a medical view as it is a long tome before you see your rheumatologist. I hope things go well for you. Best wishe Katie-G

  • Hi Katie-G thankyou for your reply I am having a skin biopsy done at my. Local surgery but again that's not till end of march I use aloe Vera with tea tree oil it helps with the annoying itch .May I ask if you are on immusuppresants I've had a few but couldn't tolerate them however I'm now on mycofenolate I started at 250mg and over the three months I'm now at 2000 mg I take 1000 mg in morn and same at night and have been fairly good since getting to that strength so fingers crossed this maybe the one for me after all the others hope you are keeping well kind wishes x

  • Hi Pineapple, good to hear you have a biopsy booked. I have been on my code Mycofenolate 1000mg dIly and since 2001 and prednisolone 5mg daily this suits me well and has kept the PM at a slower level. Take care and best wishes Katie-G

  • Thankyou for reply Katie-G you seem to have a good balance with your meds that's all we expect as we know there is no cure and I can say mine is slowing down now so hopefully this s my balance and keeping positive within ourselves . Lots god wishes for prolonged better health . X

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