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Feeling Low Biologic Treatment not working

I’m probably using this post as therapy for myself but would welcome any positive comments or personal experience to lift my mood. Does anyone have experience of getting the right Biologic Treatment?

I am 53, & 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 & 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 inflamed, 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 biologic 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 see 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 & meanwhile 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 to 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 biologic 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.

Answers

  • Shell_HShell_H Moderator Posts: 251

    Hi MissA

    I hear you feeling fed up and hopeless, worried about getting help and frustrated with the responce. It's really difficult and frustrating when your condition gets worse and your medication isn't helping. Covid on top does not help at all.

    Do not worry about people being in a "far worse condition than you" - it doesn't matter what anyone else feels, it in no way diminishes your pain and troubles. Don't ever think you shouldn't be being helped because you are not the worst off in the world.

    The hope is that many other people do struggle with finding the correct biologic medication which works for them, but it can make an amazing difference once you've found it. It is definitwely worth keeping on trying out medications until you do find the one which works. In the meantime, do keep chasing up your doctors, no matter how frustrating and upsetting it can be. It's also worth checking out hot and cold therapies - cold can help reduce inflammation, and hot can help reduce stiffness, both of which can reduce pain. Have a look at the "managing symptoms" section of the link below.

    We are here for you, please do vent and share and let out some of your frustrations and feelings here. We do care and we will isten and can say that it has happened to others and they have had a good outcome. It's important to be able to express your feelings, so please do come back and share more!

    Al lthe best,

    Shell

  • MissAMissA Member Posts: 7

    Thank you Shell_H. I should make use of this forum more often, it has helped to vent my frustration. I hate the feeling of despair when I feel RA has beaten me.Thank you so much for your kind words & helpful advice. I hope I will be in a position to post more positive comments in the future which will hopefully help others too.

    Thank you again.

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