I’m probably using this post as therapy for myself but would welcome any positive comments or personal experience to lift my mood.
I am 53, live in the UK & have had Rheumatoid Arthritis for over 20 years & at first it was kept under control with methotrexate, so well in fact there were times when I wondered if I really had RA at all. I had the odd bad few days but even then I somehow felt a fraud?? I used to worry about my meds & would sometimes miss doses & after about 10 years on methotrexate my symptoms started to worsen. I found taking 10 tablets at a time was starting to become intolerable so swapped to injections. This started a downward trend in my condition & my knees are now constantly inflammed, leaving me unable to walk unaided & helped only by draining the fluid off them & temporary courses of steroids, so myRA doctor decided to change my medication to a Etanercept biological treatment which promised the earth & gave me so much hope.
Then then Covid 19 hit the world which lead to months of delay in getting my new ‘miracle’ treatment. When I did finally get on the treatment I was told it could take up to 12 weeks to get results so I waited patiently but my knees remained an issue & it is so very hard to walk any distance anymore. I feel I’ve become disabled overnight & wonder if my situation will ever improve. I am currently waiting for a different Biolgic treatment- Tocilizumab but am having to go through a repeat of weeks of tests before I can restart my new meds. I’m afraid I have lost hope they will do any good & my RA is running riot. I am even starting to think the doctors May have missed something & I’ve got something other than RA.
I feel utterly hopeless at times & feel I am not being listened to properly. Telephone consultations are not the same & it is a constant battle phoning for advice having to leave answerphone messages, crying down the phone at the nurses out of sheer frustration and all the while knowing there are people far worse than I so feeling guilty for needing help especially when the NHS is struggling so hard with Covid 19. I feel like an emotional & physical wreck just now.... Easing of lockdown measures have just been announced & although I feel grateful for that, I also feel after a year of shielding I still won’t be able to do all those things that able bodied people are looking forward to doing it’s just magnified my sadness.
Has anyone here had to change their biological treatment successfully? I’m hanging on to a small thread of hope that I may get my life back - I sound so dramatic but believe me when I tell you I really am not usually like this.