Lots of Meds and no better.

[wilbertjellyfish]

Bear with me on this it's a long one.

I'm 4 years post diagnosis at 40 yo.

Currently on pred, mtx, rinvocoq.

Have had sfx, hdroxcloro in past and tried three biologics.

Past week been especially hard with stiffness all over, different joints misbehaving and one leg needs lifted into car due to hip pain.

Rheumy nurse says have to stick with it as if rinvoq doesn't work nothing left to try.

My period seems to make it worse.

Anyone any ideas of what to do? I'm trying to get a counselor as it's getting me down, getting to see gp to do something about periods is a joke. I had my one week of holiday last week and lived on paracetamol so we could have a reasonable good time for kids.

Sorry, I Know you are all suffering too but it's hard to keep going.

[Neonkittie17]

Sorry to hear you are not too good. 😢 I think talking to a counsellor is a good idea for offloading to someone impartial and hopefully will suggest good ways to help. I understand the getting into a car problem. Have you seen those car swivel seats which allow you to rotate in and out easily?(Google car swivel seats and have a look.)

There are many different biologics so why does the nurse say “that’s it”. Were you unsuitable for a certain type of med such as anti TNFs and is Rinvocoq really your last resort? There are two other JAKs and a couple of infusions. Wondering if you can get to see the rheumy him/her self. How long heve you been on the JAK? Hoping it still has chance to work for you. 🙏🏻💗

[Lovetodanceto]

Mega cwtch to ya really hope that they can find an alternative treatment for ya take care x

[GinnyE]

I would want to see the Rheumatologist.

[StormySeas]

Hi thereSorry you feel so rubbish. I'd push to see the rheumatologist, and say exactly what you've said here. It sounds like your RA is not well controlled and maybe it's time for a proper review. This should identify whether hip pain is RA related or not. When did you last see a consultant?

If you get bad period pain anyway it might make everything feel much worse, I used to feel really rubbish. Hope you get the period issue sorted, but most importantly manage to see a rheumatologist in person. Good luck X

[Hidden]

Hi - I think it is too early for your Rheumatology team to call it a day with meds. I can't help feeling your professionals are missing something in their diagnosis of you and also in their prescribing of meds. Pain relief is very important - why haven't you been given a steroid injection along with added painkillers? Ask if you can take a maximum dose. There are more biologics than just three, also. You possibly have to take the bull by the horns and ask for your specialist to spend more time analysing what they can do for you asap. Best wishes and good luck.

[oldtimer]

It is not true to say there is nothing left to try - have a look at the treatment pages on the NRAS website. Also you need to have some help with building up your body strength. A physio might help with that. And an occupational therapist to help you look at how you do things and what aids might make them easier.

And looking at your mental strength as well, but it's not surprising that you feel pretty down currently!

Best of luck!