Advice desperately needed

My girl just turned 30 a week ago, she was diagnosed with rheumatoid arthritis when she was two. She hasn't worked for ten years due to being unable to walk far or sit in a chair she basically has to lay down all day. She has tried every pain medication possible and has just been taken off the last available treatment for RA because once again it didn't work and so the hospital has said I'm sorry you have had every treatment possible there's nothing more we can do for you. They won't offer her knee replacements because she is too young and will need them replaced every ten years which obviously costs money.

It is all over her body now as we found out it is now in her spine which was the only place she didn't have it.

The pain is killing her, morphine has no effect nor does tramadol or any pain relief, it seems everything she tries her body rejects.

She is currently having to wear a heart monitor because they now think her arteries are hardening due to the RA, her symptoms are tachycardia and palpations.

She has been on Ampatriptaline for five years and naproxen for even longer and I am a nurse myself and I know these symptoms can be common side effects of long term use of these medications. I would just be eternally grateful if anyone who has been on long term use of these two medications for pain could tell me a little bit about your experiences and if you had to come off them due to these side effects also if you have any advice on any treatments for her that would improve her quality of life, the nhs have told us they cannot help her anymore.

Etenercept was the only treatment that mildly worked for her

We are at our wits end, I too suffer health problems but she needs every ounce of my strength which I will continue to give.

Thank you x

11 Replies

  • Hi I feel every bit of empathy I've got for you. I don't know if this will help but I have RA all over my body ,but I don't think I suffer no where near as bad as your girl.I was given SULFASALAZINE 500mg twice a day.,it really has done me the world of good I very rarely have any flare ups.But I may have caught it early,or we all know our bodies work differently.I really sincerely hope you get some help some way or other.Bless you both and a big HUG. Oh and also have you tried going on the RA site ?

  • Thank you for your reply :)

    No I've not tried the RA site I'll give it a go :) I'm so desperate to help her x

  • I've no experience. Of the meds but there is some discussion over using diet to reduce RA.

    It may be worth looking into, even if it reduces the RA a bit, it might be enough to start sitting and walking again.

  • Hello finalheaven26, I literally just joined this forum, yours is the first I've read. My heart goes out to you, the only thing worse than being in pain yourself is seeing your child suffer. I myself have endometriosis and my daughter 21 is starting to exhibit the same milestones I started with at her age. She has been following a gluten free diet now for about a year and her symptoms have greatly improved, I too tried this diet about 15 years ago when availability of products such as these was much more scarse. And after 4 months I too felt a lot less inflammation, I did alot of research at the time and learned that peolple who suffer from rheumatoid arthritis can benefit from a gluten free diet. I know about differential diagnosis's and know the path to getting the right answer can be short for some and never ending for others. I too suffer the frustration of having to jump all the hoops the doctors send you through and not getting any results despite you knowing your own self better. You said you too suffer is it also RA you'be been diagnosed with? I also developed IBS most likely due to the naproxen I took for so many years before knowing I had endometriosis.

  • re: the knee replacements

    It is not the cost that prohibits, it is that the bone can only withstand the replacement being done twice.

    Sorry that I cannot be of help with the RA but these are a couple of meds that I have no long term experience of. Amatriptaline messed my head up too much and I haven't tried Naproxen. I do hope that you can find some help with this awful condition. Regards Rib

  • Hi I'm sorry to hear of your daughters pain I know what that feel like I suffer with osteoarthritis and there's a bone disease in our family my sis had her hip replaced at 41 she had it done 3 times now and she's only 62 I'm 50 and now got to have my knee and hip replaced I too have been on every medication but nothing touch the pain tomorrow I'm going in hospital to have lidocaine infusion were they put me on a drip to put strong meds straight into my body I hope it works Ive had enough of pain been suffering every day I have tried tramadol they didn't do anything for me I'm on 600 mg pregabaline a day 8 co codamol codeine plus extra codeine 1 four times a day and that's not touching the pain either got pain clinic app too so hopefully they can help I will keep you posted on the lidocaine infusion if it works then perhaps your daughter could have one too have she been to pain clinic? Anyway I hope she gets some relief soon tell her to ask for a app for pain clinic they might be able to help her x

  • Hi, I see you take co codamol plus extra codeine. I have tried a wide range of stronger meds and due to side effects have gone full circle and am taking 30mg codeine and 2 x 500mg paracetamol, 4 times a day. They are barely taking the edge of the pain anymore. Do you think it would be ok to take one codeine four time a day on top of this? I know it would be best to speak to my GP. I was just wondering if your GP prescribed this for you? Thanks Ann

  • I think you should speak to your gp before taking any medication and ask to be referred to pain management team and see if they can help hope things get sorted soon x

  • I'm so sorry to hear about your girl's (partner? daughter?) pain. It's awful being in pain, and awful seeing those we love in pain. There may be a few things she hasn't tried yet. Has she tried Celebrex? As that's really helped me. Also Fentanyl patches (though she may have tried this already). I couldn't take tramadol or oxycontin (targinact) but Fentanyl helps. Also Lidocaine patches. Definitely she should try to get on a pain management course – esp a residential one, if possible. I've been on Naproxen for a few years, so far ok, though I do worry about it.

    I also have a back problem that causes pain when I sit, stand or walk, so I have to spend a great deal of time lying down. Does she know about pacing? i.e. how to pace activities that cause pain? If not, send me a message and I can explain. The other thing that helped me was a good craniosacral therapist. I don't really understand how this works, but it's made a huge difference to me. You may need to try a couple of practitioners, as the first one I had didn't help at all. If you're on a budget, there might be a school you could go to, otherwise try to get a recommendation. Good luck!


  • p.s. some pain management outpatient clinics also offer electro-acupuncture – supposed to block the pain signals. You could find out which clinics have this and get a referral from your GP

  • Has she tried Opana ER??? It really helps me. Hope and pray it can help her as well sweetheart!!! xxx Mitzi

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