Opinions please

Shary

Hi there
so I was diagnosed with RA a few years back now and I still try and deny it and I never mention it to anyone at all.
I've been on mtx injections for over a year now ( was on tablets before that) and naproxen and have had steroid injections. I'm in pain most days to the point I can't lift a glass because of hand,wrist and elbow pain. Ive had pain in other areas in the past.
In the last few days I've had different sorts of pain.... tingling feet at night and pain in the back of my knees and thighs which feel like I've done excessive excercise (which I haven't). kind of like I've stretched muscles.
So what I 'm asking in a long winded sort of way is do you think I should contact my rheumi and say I don't think the mtx is working and I'd like to try something different. Or do you think I have something else on top of the RA?

Many thanks if you are able to help.

Shary

[Deleted User]

Welcome to Arthritis Care Forums, Shary, from the moderation team. If you have any problems at all using the forum do contact us by personal message.

I see you haven’t told people about your Rheumatoid Arthritis so I am very glad you’ve found us; you have definitely come to the right place to talk those who understand. I think you will probably have useful experience to share with the community yourself too.

Us moderators are not medically trained at all – like you each of us has a form of arthritis ourselves. You ask whether you ought to be in touch with your rheumatology team for a review of your medication. I think if you read your description of your daily pain, struggling to even lift a glass of water, and imagined it was someone else asking your advice you would know what to do.

I will leave the community to give you their own opinions and send my very best wishes


Ellen

stickywicket

Hi Shary and welcome from me too.

I find it rather sad that you don't feel able to talk about your arthritis to anyone. That makes it even more of a privilege that you have managed to talk to us.

I discovered long ago that our blood tests and inflammatory levels determine whether or not the DMARDS are working . Pain levels are something else. However, these are different pains in new places so, yes, I think you should contact your rheumatology team and see what they think. And, if no early appointment can be arranged, your GP could give yup some pain relief in the interim and give an informed opinion as to the cause.

For many of us, pain is always present but, that's not to say we should just accept it. Often meds can be tweaked or changed and that can make all the difference. But do get it checked out. It's all too easy to just accept pain as part and parcel of our lives.

And, please, even if you find it hard to talk about your RA, do keel talking to us as we all understand even though we might wish we didn't :roll:

dreamdaisy

Hello, I have psoriatic arthritis which is controlled by injected meth and imraldi (fake humira, an anti-TNF) and OA which is by far the better of the two to live with. The OA is predictable and to some extent controllable whereas the PsA decides what and when no matter what I do.

I began the PsA in 1997 and the OA was diagnosed in 2011. Life became much easier when being pain-free was no longer possible because, with around forty affected joints, it just wasn't and never will be. I often use two hands to pick up glasses and mugs, come downstairs backwards on bad days, I can't recall all the other changes and adjustments I've made over the years but that is part of living with arthritis, the ABC of it all: adapt, believe, compromise. Other people may look askance or comment but give them ten minutes of my life and they'd soon change their tune!

I don't bang on about my arthritis because, frankly, I would bore myself, never mind those around me. This is where the forum can be useful, we all get it because we've all got it. If you, however, are still in the process of absorbing and trying to accept this change being forced upon your life, then maybe not talking means it isn't there? I was fortunate in that I was born with auto-immune nonsense and realised as a child that my life was always going to be different and it has been. If you are coming at this from a healthy background then it must be a far greater shock. Does anyone else in your family have a history of auto-immune dross such as asthma, eczema, arthritis, your etc.?

I have no idea what RA feels like as mine is a different kind but I have always been on at least two medications and have learned not to rely on steroids (the biggest con merchant out there, solves nothing but makes us feel better until it wears off, leaving us craving more . . . .) I keep my pain relief to a minimum and grind on (literally, my knees are bone-on-bone) because it has to be done. It sounds as though you could be due a meds review, possibly with the introduction of another to bring things back under control but I am not a doc, just an experienced patient. Please let us know how you get on. DD

Airwave!

Hi Shary, No RA here but at the end of the day, pain is pain which we all share. The tingling sessation sounds like pressure on a nerve, the brain gets confused and sends out different signals.

Over the years pain has increased but I do find it easier, at times, to cope and this where we need to aim for, a positive coping strategy, which is different for each one of us.

In my case its about diing things I enjoy, I just need more toys! Elation is worth more to me than pain.