Agony : Hi every one hope you all coping . Well my... - NRAS

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Agony

Denise64
Denise64

Hi every one hope you all coping .

Well my metho defo not working I've been telling my consultant for months but as per you have to go through the rig marole of waiting xrays scans before they will swap you. I'm in agony with a real fear of loosing my job. Not been off sick with it but I'm trying to hide my RA .they know I have it but they don't know just how bad it is. Yesterday I couldn't do my job but still carried on

I'm on metho injections n sullphazaline but I struggle with my tummy been having tests to no avail. So it's defo the meds etc that upset it.

Does anyone know of best treatment that's less harsh on the tummy .they hsve mentioned luethermide but read up n the very bad tummy side effects. I just want some ideas before I go on Friday.

Thanks guys xx

13 Replies
oldestnewest

Was your knee replacement due to the RA or osteoarthritis? What i mean is can you show that the RA is having a major effect even if it doesn't show in your bloods? As I think you should ask straight out about being moved to biologics. In the UK they are only given to people to have severe and active RA as they are so expensive. Normally that is assessed by having a DAS score over 5.1. But if you have lots of tender & swollen joints you could well hit that score.

Denise64
Denise64
in reply to helixhelix

Hi

It's due to both. At the moment my hands and wrists are deforming In front of my eyes.

I've never been in so much pain in my entire life, feel like it's going to kill me.

Thanks for your reply I just want to be fully informed before I go in.

helixhelix
helixhelix
in reply to Denise64

Well that sounds severe and active to me! Hope you get somewhere with the consultant.

Mmrr
Mmrr
in reply to Denise64

Denise I empathise with you. I have used the same words ... my hands and wrists are deforming in front of my eyes. Be strong at your appointment on Friday and say it as it is. Remind the rheumatologist what drugs you have tried and the side effects you have experienced and that you need something different now. Best wishes.

Denise64
Denise64
in reply to Mmrr

Thanks .Yeah it's so scary the disease being out of control . I'm going to be strong n not be fobbed off again. X

Denise, Ask someone to take photos or a short video of your hands/wrists and any other swollen joints as they are just now. RA is the most frustrating disease with its temperamental activity! I agree with HH , I think you should be on biologics. Don't suffer at work or anywhere! This disease won't allow you to simply carry on as normal until it's controlled. During flares, you shouldn't be doing anything other than resting. Good luck on Friday, thinking of you. Remember photos and show your Rheumy. X

Denise64
Denise64
in reply to Shalf

Hi u know I've taken pics of my hands tonight they are bright red swollen n my wrist has a huge swelling in it. Wish I could rest but in a new ish job Darnt take time off. Thank you for the advice x

Hi Denise64

Just wondering if you started both those drugs at same time? It maybe just the one causing the problems. Not sure what dose of MXT you are on? It could go up? To relieve symptoms if it’s not the culprit. I too have rejected Leflonomide due to its side effects. Sounds like you require an upgrade to the vast range of newer drugs. I am so sorry I can’t advise on that. Other people on this site might have suggestions

Make sure you express how this is damaging your work life, so little of this is often taken into consideration. Absolutely you should be on the best possible treatment for you. If desperately worried and you can afford it get a private Rheumatologist appt to discuss.

Hi I'm in top dosage of metho n been in both the 4 nearly 5 years now. Think I'm going to push for biologics as this is just not right being in this much pain. Thanks for the help xx

Have a look at the NRAS website on the treatment pages. You can then discuss various treatments with the health care team from a position of some knowledge. But biologics can be quite difficult to get access to. I feel that they are rationed by cruelty, making people suffer before they can be eligible!

Denise64
Denise64
in reply to oldtimer

Thanks I'll try that never thought of getting help direct from NRas. X

Shalf
Shalf
in reply to oldtimer

Couldn't agree more old-timer! Ridiculous but appears to be the case!

sjhewitt42
sjhewitt42
in reply to oldtimer

Yep I agree too with oldtimer... whatever works for someone should be available.. never mind the not so NICE guidelines xx

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