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.

Comments

  • Shell_H
    Shell_H Moderator Posts: 362

    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

  • MissA
    MissA Member Posts: 13

    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.

  • Landyloon
    Landyloon Member Posts: 4

    I do hope your knees are having a better day, today MissA.

    Having taken free movement for granted before getting RA,

    has me really appreciate when symptoms recede for a time.

  • Emma126
    Emma126 Member Posts: 14

    Hi Miss A,

    I really hope you are feeling better by now!

    I feel that the lack of contact with doctors and nurses has also had a detrimental affect for me. I was diagnosed last July and since that day I have had one 20minute meeting with the consultant in a sea of phone calls and answer machine messages.

    Please let me know how you are doing.

    Best wishes,

    Emma.

  • Grace111
    Grace111 Member Posts: 20

    Hi @MissA

    sorry to hear you have been having a rough time with your anti-TNF treatments, it took me a while to find one that really worked for me to. I was allergic to one, Humira didn't work, finally started Benepali and it's working really well. I understand your despair because everything takes so long to work but you will get there. Come and share your frustrations anytime we have all been there and we understand

    Gentle hugs

    Grace111

  • MissA
    MissA Member Posts: 13

    Hello, thank you all for your comments & well wishes.

    I have now been on Tocilizumab for 9 weeks. The constant badly swollen knees have improved but I am left with a leg that will not straighten, which means my mobility is still very poor. I am due a review this month but have heard nothing & have left 3 messages so far; still waiting for a reply. Unfortunately my consultant wants another phone appointment but I am pushing for a face to face one as I feel he needs to physically see what is going on. I just need him to diagnose the knee situation as I have been on biologics for a while now so he will hopefully now be able to advise a plan of action.

    I would just like to sing the praises of the Rheumatology nurses, they have been my lifeline, so kind, understanding, and experts at explaining what’s happening to my body with RA, which helps so much to ease my anxiety & give me hope. They even managed to make me laugh when I started the conversation at such a low point. I really don’t know how I would have coped without them because I have to say getting hold of my consultant has proved difficult at times & very frustrating. I do tend to feel rushed with him although I put it down to his manner, which was fine all the while my RA was under control but since it has started to run riot in the last 2 years his ‘rushed manner’ during phone consultations has caused me upset, and at times I have felt abandoned forever fighting for a response. I know Covid has caused Mayhem & I wonder just how bad the rheumatology dept has suffered. I have started to lose faith in him but wonder if the situation wouldn’t be much different if I asked for a change of consultant. Hey ho, I’ll see what happens when I finally get my appointment, wish me luck 🤞🏻🍀🤪

  • Saltmarsh
    Saltmarsh Member Posts: 40

    Say it, Miss A. Take a breath & say firmly, as soon as possible in your phone consultation: "Excuse me please, but I can't cope when feeling hurried". Or whatever way you want to speak. But don't waffle, just say it - firmly. Hopefully it will put you both on a better footing. Good luck 🍀

  • Becky88
    Becky88 Member Posts: 63

    Hello... I just wanted to offer you some hope and my advice. I started Tocilizumab a few years ago and it has had a largely positive impact on my life and condition. After being allergic to Humira, I was switched to Tocilizumab. Nothing is ever perfect but this medication has been a lifeline for me. I know that it is hard to remember not being in pain when things are bad..and medications seem to suit some people more than others..but hopefully Tocilizumab will work for you too. Best wishes.

  • MissA
    MissA Member Posts: 13

    Hi, I had what I considered to be a very successful face to face appointment with my consultant. I had a list of questions he was happy to hear & I felt calm & listened to. He was very happy that my blood tests show inflammation from RA has reduced right down so feels biologic treatment is working which is good news. He says my knee issues are probably mechanical & sent me for an X-ray & MRI. It’s been 3 weeks now & I’m still waiting for results, apparently there’s a backlog of cases in radiology.

    However, I’m writing this to vent my frustration mainly with myself & this retched disease. I do tend to suffer from health anxiety & when there are delays I start imagining all sorts. I do however have legitimate concerns & at the moment I have dental issues & I have been suffering increasingly from migraine aura for which I’ve been prescribed a months worth of Beta Blockers. I am terrified the biologic treatment I’m on is causing complications. I’ve been feeling unwell all weekend, it usually happens when I won’t be able to contact my RA team & Im left with phoning 111 as my only option. I read up on what to do if unwell & the advice is contact the RA team, which I will do but by the time I ring them on a Monday morning I’ve usually worked myself up into a heightened state of anxiety & find it hard to tell if what I am feeling is side effects of treatment or symptoms of anxiety.

    I do annoy myself, I try to focus on positive news when I have it but any optimism is always short lived & it’s been so long since I felt truly well.

    Maybe seeing a therapist of some kind would be a good idea but it needs to be someone who understands RA. Has anyone had any experience of seeking out such help?

  • stickywicket
    stickywicket Member Posts: 26,243

    There's a backlog of everything and I don't see it getting any better in the foreseeable future but, as I see it, an inflammatory arthritis is a very good training ground for coping with such things as nothing ever happens quickly or seamlessly😉

    I think, also, we have to accept that, although all meds can cause side-effects, most don't in most people. However, this doesn't mean to say we are going to feel 'truly well'. Like everyone else we get niggly stuff. We are often inclined to blame the disease or the meds and occasionally it is but, more usually, it's just life. I find the best way is not to focus on how I'm feeling but just to crack on regardless with stuff I enjoy doing - as long as it's not too energetic for my joints! Anything which distracts us from pain is good and will vary with each individual. Yesterday, I had a cracking day by my standards though it would probably have bored some rigid. Who cares?

    I think the idea of a therapist might be a good one but the idea of one who understands RA is a tad optimistic. Mr SW has lived with my RA for well over 50 years and he still doesn't 'get it' half the time😁 A friend used to have a rheumatology nurse who had RA. Now she really did understand.

    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran