Hi all I just wanted to let people knowi have been on methotrexate, lethunomide,and sulfasalazine all with side effects and not controlling the RA. My hands and wrists are so swollen and I cannot lift things now. I am at my wits end I don't know what to take have tried all pain killers. I rang RA nurse to see if they could fetch my appointment eRlier it was March , now got back end January. Which is good but I don't know what we're supposed to do in the meantime. Can anyone help. I am getting so depressed. And feel desperate. Still on 4 tabs of sulfasalazine a day. Cannot sleep because of pain. I Am sorry to be a moaner especially this time of the year. I need some respite from it all.
Only been on a few times.: Hi all I just wanted to... - NRAS
Only been on a few times.
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Hi
Sorry you're having such a miserable time right now.
It's awful waiting to find a drug or drugs that will work......really seems so wrong leaving people in desperate pain. I guess you've tried heat,ice etc? Do you have anti inflammatories from your GP?....the other thing would be steroids? Have you had any injections or steroid tablets? When I was suffering while waiting for dmards to work I had steroid injections and rheumy nurse usually fitted me in within a few days.
Looks like since you have tried and failed with a few dmards then biologics will be the next for you.......been great for me and lots of others on here so there is light at the end of the misery tunnel.
If it were me, I would phone the nurse again and say you are desperate, and need steroid injection to tide you over. I would also go and tell GP that I was desperate and need effective pain relief.
Good luck and hope you manage to have a good new year.
They did mention biological to me, but I was due to have an operation so they wouldn't give them to me. I have heard good results about biologics. I don't know anything about them is there many side effects. Go only gives me naproxen. Which does the work.
Biologics have been good for me with no side effects. I still have to take methotrexate and that still makes me feel a bit yuck sometimes. I much prefer my biologic even though I inject it. I just hope it keeps working for me.
I started on naproxen but moved to Celebrex which has been better for me. GPS have a whole range of anti inflammatories and pain killers they can prescribe.
Time to get down to GP and insist on more help.
Hopefully once you're over your op you can start biologics and get your life back on track X
Thankyou I'm glad to hear biologics are working for you. Will you have to methotrexate all the time or just initially. Yes op over now so hope when I see him in January he will put me on the injection.
Well apparently staying on a Dmard along with the biologic helps stop you building up antibodies to the biologic, so yes they like you to stay on something. I think there might be some biologics you can have without but I'm not sure which they are. It doesn't have to be methotrexate, just any of the dmards I think. I'm ok with that though, I really want it to continue working as long as possible ....forever would be good 😉 so will do whatever is needed. My RA was very active before I started biologics so am just so relieved something is working.
Not too long to wait till you see rheumy and hopefully start to improve.
I remember only too clearly the pain in my hands and wrists at their worst. I used compression gloves at night and they did help with the swelling and pain. I don't remember them working instantly but certainly over a few nights, they helped me to be able to drop off and sleep for a couple of hours at a time. I also used splints during the day. In terms of pain killers , tramadol and paracetamol together certainly took the edge off the pain along with arcoxia ( anti inflammatory ). I also used to sit my hands in really hot water and flex them, which provided some comfort.
It's a horrible situation when things are less controlled as you wonder that it may never end. I genuinely hope that things get better for you soon.
Thank you so much for your thoughts. I do put my hands in water which helps a bit. I get so frustrated trying to see a rhumy nurse . . Unless you have it you don't understand. I have been on naproxen. Cocodimol and the usual ibrufen and paracetamol. I think it has flared up so much that nothing's working. I have got some steroids here but I'm not sure what to take to tide me over. Or you f u should take them at all. Doctors don't know enough about RA many thanks.
Agree with all the advice given . Get help from GP they are the painkiller experts , and get ready for the appointment by writing a pain diary , where the pain is, how bad and any swelling to save time. Also take photos to show them of inflammation/ swelling .
Sorry that you are feeling so rough.
Get an urgent appointment with your GP. See if they can manage your pain better. Also ask about steroids. They can take down the inflammation.
I hope that you get some respite soon.
Jacqui
Its a pain in ore ways than one but side effects from all the meds ? I know that sometimes you just have to put up with the bad effects as they do go away after a while as the body adjusts to a foreign substance being absorbed. I can only say same as the rest of contributors talk to your GP and possibly if you can afford it go private . We must be lucky around here as I had a problem before Christmas and the RA nurse rang me back same day then got the consultant to look at bloods and Xray and gave me very good advice which worked.
Hi. You was lucky then. I only live up the road from you Meopham.thankyou for replying
Are you at Darenth Valley ? I'm MMH but do also use the Alexandra. I really think MMH is very good now. I've had excellent treatment both by RA team and Haematology over the past few years there.
I'm not very pleased with Darenth Valley they don't ring u back just leave you to get on with it. This is the worst flare up I've had. Don't matter what I take it doesn't help. I have got some left steroids which I was on, as I'm seeing someone end of January I don't know whether to take a low dose just to tide me over.