End of my tether looming......lol

Hi all...diagnosed with RA 10 yrs ago, well controlled until Aug 2013 when diagnosed with Breast Cancer. Had to stop treatment for RA....Humira (anti tnf), and 3 years on, still not back to being under control. Tried Abatacept with Ciclosporin, no good....Rheumy then decided to put me back onto Humira as had done so well before....well, 5 months later, have never felt so poorly in all my life.....so now going onto Enbrel.......

Cant take Methotrexate or leflunomide as stupid liver doesn't like them.....

Just feel so so dowm, ill and fed up.....can hardly walk, hands mega painful, ....

Sorry everyone, didn't mean to go on about poor old me but thought it might help to talk to people in the know?

just feel that the powers that be don't really seem to know where to go with me anymore.....

Plus...and I promise you I'll close after this, why do the meds we take have such horrible side effects.

Anyhow, if anybody has been kind enough to read this then I would love to hear back from you.

I have always thought myself a strong peerson but really don't feel strong at the moment.

19 Replies

  • You are strong. Your sore hands are reaching out right here.

    You will find the right mix of food and drugs to help you on the healing path.

    Keep trying new things until something works for you. You got this!

    Hugs to you, Carter57.

  • This is my first visit to health unlocked and as such my first opportunity to speak to others with RA. Your description of being at the end of your tether probably summarises how I've been feeling too. I'm on Methotrexate, Hydroxychloroquine, steroids and am onto my second Humira dose. From the information I've managed to glean so far, I think it's a case of setting out with the view it's going to take time and there will be times when you feel like you can't see the positive for the negative. Try not to feel like you're on your own, it can be very isolating having RA. Your life has changed and there will be times when that feels all consuming and overwhelming, but if you take one day at a time and try to keep it in the moment rather than focus sing on the enormity of it, you'll find it easier to cope. I'm not saying it's easy, I know it's not, but you can do it. Hugs, Annie

  • Well, am so glad I decided to sign up.....it does help to talk to other people.....I think its so easy to think that you're ok, just solidering on and not needing anybody, but I have definitely got to the stage where I don't feel like that......

    your message was lovely Annie, and thanks for replying....and good luck with the Humira, it really is good stuff , just not for me anymore.....would love to know how you get on...

    Take care Jane

  • Glad I could help Jane, your message helped me too. I tend to be someone who just try's to get on with things on my own, but sometimes we all need a bit of help. I'll try to keep you posted reference my Humira, but in the meantime you keep your chin up 🙂

  • Hi Carter 57,

    Am sorry you are suffering so much. Would a short course of Prednisolone be an option, to give you a break and help quell the inflammation in your joints. Please let the doctors know how you are struggling and ask if you can have some steroid treatment.

    I hope you feel better soon. Be kind to your self and know you are not alone. Gentle hugs.x

  • If were me...I would write down and keep a record of exactly how I'm feeling to take with me to the next appointment. It is so difficult to remember to say everything and explain how desperate we get with the pain, inability to do things and the fatigue. But hang on in there, there is something somewhere that will help even if it doesn't feel that you are finding it yet!

  • Where can I find that hope???? Suffering with hypothyroidism, fibromyalgia, RA, hemangioma on rt arm bursitis both shoulders, kidney failure and depression and I'm still here alive why??????????

  • So sad and horrified at your reply Nikkyheat24. You are here and still alive because you are a worthy special person. The horrendous suffering you are physically living through is causing you great depression. Please speak to your GP about your emotions. You need and deserve help to overcome this dark place.

    I wish you well'


  • You are going through the mill at the moment but just look what you have already been through and you have found the strength to cope ,I know it can seem a never ending struggling on I hope you get sorted soon

  • Thank you for your kind words......so glad I found this site....really helps to talk to people who understand.....

  • Please feel free to rant. It's ok not to feel strong at the moment, you need time to absorb all that you have been through. You've been through hell and back. Hopefully you find the right meds to control your RA soon so you can pamper yourself. You deserve it.

  • Thank you so much for your nice reply.....its amazing how it helps just knowing that there are others out there that understand how you are feeling.....I sometimes think that we think we are the only ones ......and I definitely love the idea of pampering.....may work on that one......

  • Omg you just told my same story. I just want go to sleep and not wake up

  • Carter, so sorry to read that you are having such a bad time it really is a sh""t disease, personally I loath it and can totally empathise on what you are going through. Problem is it is, as we are all aware, a very complex disease with no cure, docs have only a limited medicinal tool kit, and another part of this insidious disease is that, as individuals we all respond differently to them, it is a case of trial and error. I am due to start Abatecept tomorrow and am keeping my fingers crossed that it will work with little side effects, ever hopeful.

    Hang in there, we can only hope we will eventually match with the right meds or that some bright spark of a bio chemist will come up with a definitive cure, never know, so never give up.

    On the funny side I tried to hoover this morning and realised I didn't have the strength to push my hoover around, ah well feet up then!

    best wishes


  • Oh Kay.....am so with you on the hoovering......I only live in a small place and can not believe how long it takes me to do it.......feel like such an old lady sometimes....lol

    As for getting the right meds.....well, I keep telling myself that sooner or later something will hit the spot, but you are right, this is a very insidious disease, and it is definitely a case of trial and error.....

    Take care

  • Dear Jane,

    So sorry to hear your story. Know how you are feeling as the same happened to me. Had RA over 40 years then breast cancer 2006. Had mastectomy then chemo. Whilst on chemo my RA was well controlled by the chemo drugs though wouldn't recommend this as a treatment!

    RA came back with a vengeance a couple of months after finishing chemo. Then a period trying different combinations of drugs none of which were very effective. Eventually started Rituximab 2009 and it has made such a difference to my life. Take it along with prednisolone, methotrexate and celecoxib. I had to really push to get the treatment and reackon I only got it as anti TNFs were not an option after the cancer I was told.

    You will find the right treatment for you soon. Make sure you are informed about all the alternatives. We have to manage our own case. Ask for a steroid injection to get you a bit of relief in the meantime. Thinking of you. Keep positive.

    Love Pam

  • Thank you Pam......

  • Ihave been thinking all day as to what I can say to help you feel better - all I can tell you is what I do - I cook nice things to eat, have a massage - just face if I'm really sore-, Buy some nice smel,ly for the bath and lie and soak in a hot bath with the hot tap slowly running to keep the water hot I do the candle thing as well, buy A dvd I want to see - or hire one, Buy a cd that Ive been wanting to listen to, try and arrange an outing with friends - even in the next month or so - so I have something to look forward to, talk to friends on the phone, write letters to friends hoping Ill get some mail in the post that isn't just bills, buy or pick flowers for the house - these are just some of the things I do to lift me out of the dark places - oh and of course phone the RA helpline and they can find some one with RA for you to talk to - (Ive done that and it helped a lot ) I think in a nut shell do thingas that make you more relaxed and happy. I do hope you feel a little better soon take care much love and hugs xxx

  • Hi....thank you so much for the reply.....so much of what you have put rings loud bells with me, I also try do do all those things that make me feel better....

    It just seems a bit of an uphill struggle at the moment, but I am certain that sooner or later something will decide to do its stuff.....

    I didn't know this site was here, and the one thing it has made me realise is that how many people there are out there that are struggling like me, sometimes, I think you think you are the only person.....

    take care

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