Nothing is working

I have RA and was diagnosed early February this year. It is quite bad as most of my joints are affected and I’m in so much pain. So far I’ve been on methotrexate, sulphasalazine, steroids and etanercept (benepali) and nothing is working. My worst pain is in my shoulder which I can’t lift or move at all without being in extreme pain which means I can’t even brush my hair or anything. Just wondering if anyone else has experienced medications not working and what has actually worked for them? I’m only 20 years old and dread to think this is what the rest of my life will be like!

Comments

  • So sorry to hear all this and for your young age. Have you worked with MSM, I was on a RA forum yrs ago and a person talked about how much MSM he took daily for the RA and I've been taking it ever since....but my issue is OA and advanced aging...and surgery complications from hip replacement....

    Have you looked at holistic remedies for your issue....my neighbor is older and was hit with RA maybe 8 yrs ago, her life has changed dramatically...very sad... She gets plenty of Vit C with her limited drugs...Cortisone is very damaging...

  • Mike1
    Mike1 Member Posts: 1,992

    Most of us will tell you that no drugs will totally kill the pain, they just knock the edge off. That is certainly my experience having tried all meds available for OA over the years and now being left with morphine. What does help is, in combination with your meds, finding something that you like doing - and are capable of doing - to take your mind off it. Hopefully you are young enough that new treatments will come along to help you unlike us old codgers. If you have not been yet ask your GP for a referral to your local Pain Clinic.

  • Ellen
    Ellen Moderator Posts: 936

    Some info about MSM for you @Liv20

    I am very sorry to hear things aren't going well for you so far. Unfortunately it does seem to be a case of trial and error and can take some time for 'them' to find the right drugs combination for some of us.

    I wonder has your Rheumatologist considered a steroid injection into your shoulder at all? He/she will have more options available to try I hope you have been able to see him or her with COVID 19 having limited access to medical support.

    If it helps you can always call our helpline team too:


    Best wishes

    Ellen

  • maddie1020
    maddie1020 Member Posts: 9
    edited 1. Sep 2020, 10:10

    Hi!

    I'm really sorry that you have RA at such a young age.

    I thought I had RA for a while but I actually have osteoarthritis. Before I had my diagnosis I joined the Paddison Programme which is a diet/exercise programme for RA (and other inflammatory types of arthritis). I still live my life this way the majority of the time as I feel it is the healthiest option for me.

    I can tell you that there is some hope if you change your way of eating to a low-fat, plant based diet. I was a member of that forum for about a year and I would say that 20% who made these changes reversed their condition completely, and most other people had a good reduction of symptoms. It is definitely worth a try.

    [ Advertising link removed - Brynmor, Moderator ]

    Good luck x

  • stickywicket
    stickywicket Member Posts: 26,619

    Liv - sometimes we just have to persevere with different meds until we find the right one or the right combination. It can be a painful, very difficult process. We can help by eating sensibly, exercising gently and csarefully, not smoking. I was diagnosed at 15. I'm now 74. I've had a good life with lots of horrible bits - just like most other people on the planet. I'm afraid patience is one of the hard things that RA teaches us. I'm still not great at it but getting better😉  Eventually you'll get there. In the meantime there are lots of aids out there to help with things like hair. Just have a look online. And I hope things improve soon.

    Maddie, I don't want to rain on your parade and I would absolutely recommend a healthy, Mediterranean-type diet for RA but I do find this sort of thing worrying when it tells people they can ditch their DMARDS. Unlike OA, those of us with autoimmune types of arthritis have them because our immune systems are faulty. They don't need boosting: they need dampening down as they attack our own bodies.Exercise is essential for us and a healthy diet but they won't cure us. There is no cure. I chased up lots of 'miracle programmes' in my early years. They didn't work. Only DMARDS work.And I get cross when I find practitioners like this man making good money by raising false hopes. Try reading this RA sufferer's take on The Paddison Programme

    https://sciencebasedmedicine.org/the-paddison-program-for-rheumatoid-arthritis-the-unproven-illusion-of-control/

  • frogmorton
    frogmorton Member Posts: 27,377

    Hi @Liv20

    I am so sorry to hear what a tough time you're having ATM. I do hope your rheumatology team find something to help you very soon.

    Didn't the steroids even help at all? For most of us they help a lot even though they can only be used for short periods of time. I do hope your rheumatology team can find the right meds combination for you very soon.

    I take it you also try the sort of home remedies like a warm wheatbag on your shoulder/ an ice pack in a teatowel?

    Is it worth asking to see a physiotherapist for some help and even an Occupational therapist for help doing day to day tasks?

    Finally I wouldn't do anything to radical with my diet in your shoes without checking with the medical team The one Versus Arthritis recommend is this:



    and I trust this site.

  • maddie1020
    maddie1020 Member Posts: 9
    edited 2. Sep 2020, 13:21

    This post has been deleted. Please see below YvonneH Admin


    At Versus Arthritis we are helping people to live well with arthritis - be that osteoarthritis, rheumatoid arthritis or any other type. It is never right to advise someone to stop taking the medication prescribed by their health team. It is never right to offer people in circumstances like @Liv20 who are new to arthritis a suggestion of a cure or reversal of symtoms - some people go into remission but it's not because they paid for the privilege of going on a diet, their condition was controlled by medication which could then be reduced.

    Because of this I am deleting your post - it does not give any useful help to anyone in this country who has a diagnosis of any type of arthritis and is not supported by research conducted by any trusted academic source.

    YvonneH Admin

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