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Feeling Low-Biological 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.

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.

Comments

  • AnnaAnna Posts: 196 mod

    Hi @MissA

    You’ve posted on the Helpline page and I’m sure they’ll get back to you tomorrow, but meanwhile I just wanted to drop you a line of support. I’ve lived with RA for over 40 years ( since age 19) and like you, I’ve had ups when I questioned whether I really had RA, and downs when I thought I would never be back to normal. After a few difficult years when I could barely move without pain, I’m back to walking 3 miles a day and feeling fit. I never went onto biologics, but I did get moved from one treatment to another, each one taking a while to kick in and each one working for a while. All I can say is that this will pass and you can get through this. We’re living through such difficult times at the moment and it must be so hard when treatment is held up and you have to wait so long. But each treatment is different and you may respond well to the next one. Hold on to that hope.

    If you feel that talking to someone may help, you could call the Versus Arthritis helpline tomorrow between 9am-8pm. They’re not medically trained, but they’re sympathetic and knowledgeable and will listen to you and give you support and advice. Here are their contact details:

    Perhaps you could also post on one of the forums on the right - Life with Arthritis or Say hello - all our members know what it’s like to live with arthritis and I’m sure they will respond with kindness and support.

    Do keep in touch and let us know how you are getting on.

    Anna ( mod) : )

  • Hi @MissA

    Thank you for posting on the helpline forum. I’m sorry you are feeling so low and have had such a difficult experience with finding a biological treatment that works for you. It's totally understandable to feel like this under the circumstances. You are not being dramatic - reaching out for support as you have done here, is an act of strength and hope.

    I hope you have taken up Ellen’s suggestion to call us on the helpline and to keep in touch with others who have faced similar challenges with finding the right medication for them and can share messages of hope, as Ellen has done here.

    If you haven’t already called the helpline, please do call us.

    We are here to support you through this. In the meantime, you may find this link to looking after your emotional wellbeing during the pandemic helpful.

    I hope this is helpful.

    Best wishes

    Mags

    Helpline Team

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