Rheumatoid joint involvement pain issue

[Vonnie10]

Here we go , was diagnosed last year with RA in hands and feet but feet don't count I know, how silly...put on the usual drugs Methotrxrate tablet with hydroquinone, with side effect, then Then meth injection, no good changed to sulfasalzine. No good side effect again, next step TB Hep b and c and so on bloods done, just had call from the nurses saying I need 2 more joint it's in my fingers knuckles wrist elbows shoulders just the last week gone into my knees, my toes small bones nad ankles kill by the way but there not included in AGONY can anyone enlighten me are these enough joints to get onto the infliximab or toximab drugs I just need to check I've got a review Monday , I can't go on any longer without any treatment on the usual co cocodamol, 3 times a day no relief really , and naproxen which is irrational my stomachs terrible eat with it plus lanzoperole , my own gp isn't very good at giving me any pain relief either, please help I'm stuck . Thankyou in advance

[helixhelix]

Download the NRAS app for the disease activity score (DAS). To qualify for biologics in the U.K. you need to have a score of at least 5.1 - taken twice and 6 weeks apart. The system is medieval.....

and when the consultant checks your joints don't hang on to a stiff upper lip, but say OUCH loudly - tho' sounds as if you would anyway!

[Vonnie10 in reply to helixhelix]

Million percent I would go ouch, I've read that that's the scoring system , the cns said I need 2 more joint involments , my knees my hips all my big joints hurt now , but they only include is it 28 just wanted to verify which joints so I've got my head on right for Mondays meeting it's all about money As well I think whilst I'm in pain suffering give it a read again, can't cope

thankyou helixhelix

[Vonnie10 in reply to helixhelix]

Mine said 4 weeks apart there pretty good she reckons cos my knees are involved I should be ok fingers crossed . Need this treatment bad I'm of work

[Vonnie10 in reply to helixhelix]

Thanks I got my das to a 6.1 so. Next step is biological drugs just want to get sorted

[helixhelix in reply to Vonnie10]

That's a relief for you. Hope they manage to process the paperwork for the biological quaickly so not too long a wait.

[Fra22-57]

It's a crazy system. I have tried 3 biologics without any help for me but it's the cost they kept going on about.

I have paid my taxes and national insurance so what

Why don't your feet count always baffled me.When nurse presses just say ouch anyway cos more than likely it will hurt there later

[Frankiefarr]

I'm a bit like this. My toes are so bad I could chop my feet off but my hands are much better. Despite having RA across my joints knees and ankles, elbows and collar bone being the worst parts my CRP is alway 1 so my DAS score hovers around 4.77 which the consultant acknowledges is not a true reflection of the disease activity. I don't qualify for biologics therefore despite being unable to tolerate methotrexate, hydroxycholquinine and sulfasalazine. I am now attempting to tolerate lefludomide but it seems if you don't pass that DAS score no matter how ill you are you have to keep trying all the other dmards and take steroids. It's a crazy situation. The only pain relief I have is cocodamol.

Some better off CCGs are more lenient though so it's worth pushing. Good luck

[DelicateInput in reply to Frankiefarr]

I wonder when biologics will come off patent so that people do not have to go through this rationing system.

[Vonnie10]

I prey I get it . It's all my hands wrist elbows shoulders and knees plus feet ankles and hips these don't count crazy them steroids are wicked destroy you , disease goes quiet whilst on them but comes back with a vengeance I can't be doing with steroids ,like we need that, my gp given me some tramadol today for break through pain, my nurse told me it's expensive, I've always worked at the NHS as well , paid my taxes all my life they can sod right of .

[Vonnie10]

Let's hope my bloods are scoring as well.

[chacha700]

I was given a morphine patch and my steroids increased

[Vonnie10]

I don't want any drugs I'm afraid I'm a scaredy cat, but I got my das to 6.1 so biological it is for me so fingers crossed it goes well and I get back on track work and so on, postivd thinking

[Renny4699]

I have been on most of the drugs you have had also had bad reaction to methotrexate As far as pain relief I have fentynol patches , Baclaphen,morphine, paracetamol, naproxin,and prednisalone,

And certalizamab but still have bad days

This is due to having RA , AS , IBD, Crohn's