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i have come off steroids after 11 years, am finding it very difficult
Polymyalgia Rheumatica (PMR) | Last Active: May 27, 2023 | Replies (17)Comment receiving replies
My heart goes out to you for what you have experienced and are going through now. Were you diagnosed with PMR or GCA, or both? It is depressing....I was one hopping 78-year-old busy, busy, busy. I did what I wanted when I wanted and painted as much as I wanted..went to lunch..went shopping... one night, I became blind in one eye and had a painful body and tons of pred and Actemra to save my other eye.
To get past it, I held a mental funeral for life as I knew it and began to work around my illness instead of against it. Really tough....but I would have done anything to keep my right eye.
I honestly get what you are saying...but make sure you aren't jeopardizing your vision... I hope not for sure..but check.💞
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oh it is pretty awful but i was so ignorant and didnt get the help I asked for. I am only diagnosed for PMR ...I didnt have enough 'points' ? for GCA so they decided not to pursue it. I am stuck with them here and cant get a second opinion. I am organising a Private Rheumatologist in London so we shall see. I dont know if my hatred of steroids has created an even worse condition now. It has caused me to have Osteopoenia and that is definitely steroids to blame.
My heart goes out to you too...I had an ok existence before Prednisolone and its friends came along... I think I would have been better off healing myself!!