Help please

Lou87

Any advice would be greatly appreciated...

I have been treated for RA for the last 20 years and have been on various medications over the years. All of them work for a while and then the effects wear off. Most recenty i was on enbrel for about 6 months. I was then examined by the rheumatology nurse and bcause i was not inflamed that day, my medication was stopped. Ihave since changed consultant and am now being told that if an ultrasound of my hands and feet does not show inflamation then i will be treated for fybro.
My blood tests have always been clear but on physical examination there has been inflamation and tenderness in my joints.
I had a steroid injection on december but i have been in a ridiculous amount of pain since. I have been to see my gp on various occasions since december and they have seen the inflamation and pain yhat i have been in.

Any ideas on what i do? I am struggeling to cope day to day wth the degree of pain that i am in....

any advice will be greatly appreciated

thank you

dreamdaisy

Hello, it's lovely to meet you but I am sorry you have had to find us. I am surprised that your medication was stopped because you weren't showing any signs of inflammation - surely that meant it was working? :? I am on an unholy trinity of injected meth, humira and sulphasalazine, and my bloods are beautiful, but my joints are not but thanks more to the OA that I have in addition to the PsA. I take it you have a sero-negative form of an auto-immune arthritis?

It is true that any benefit from the meds may not last for ever but this decision seems harsh to me. I too have fibro (diagnosed by my rheumatologist after pressing on various points) and as far as I know there isn't a treatment for it, as such. For me the fibro is manifest in muscular aches and extra levels of tiredness. I think you need to sit and have a good chat with your rheumatologist about what is exactly what - injected steroids are hit-and-miss in their effectiveness and they only mask symptoms, not remove them. DD

stickywicket

What a mess! What a muddle!

I would doubt that a rheumatology nurse has the power to take you off your medication and would guess that the consultant had already decided there was some doubt about your diagnosis and left instructions. However, this is no help to you if you don't know what you have or what you should be taking to help. If you do have an auto-immune arthritis it's imperative you take the appropriate meds. If you don't, however, you are just stuffing your body with pointless chemicals.

I think you need a good, long chat with your rheumatologist or, at least, your GP who will have all your reports and maybe be able to offer an explanation. If you don't ask docs often assume you don't want to know.

When you say all the meds worked 'for a while' are we talking in terms of your pain levels or the blood test results? You say your bloods 'Have always been clear'. I wonder how on earth RA was diagnosed if that's so.

It seems that two separate consultants think you may not have RA at all. That would be a good thing but very difficult to get your head round if you've been treated for it all these years. I know all too much about RA but I'm afraid I know nothing of fibro. I suggest you talk to the experts and make a list, in advance, of the questions you'd like answers to.

barbara12

Hello Lou87 and welcome to the forum..
I have been treated for OA but on examination like you had swollen joints, but a few MRIs showed no inflammation.. but unlike you I haven't been treated for RA..after all this time you must be so angry that they have stopped your meds..I would have words with them and get across how you are suffering..and need something to get you through this while they make up there minds...good luck and please let us know how you get on..

AnnaMilton

First of all, welcome and sorry for your current situation. Same is the case for me as I have RA too, which I feel, have been under-treated with current medicines.

Fibro and RA often go hand in hand and there is always a chance of misdiagnosis due to overlapping symptoms. One of the biggest differences between arthritis and fibromyalgia is inflammation. In RA, joint inflammation is one of the key symptoms. There can be pain in the joints and muscles in fibromyalgia, but may not be caused by inflammation. Unfortunately, there is no diagnostic test for fibro, doctor should be able to tell you the difference in the symptoms, physical findings and blood tests between these health problems. Neither switching off all the medications will serve any benefit nor taking them for wrong diagnosis. A long deep chat with your rheumy can only get things sorted out at earliest. Good luck.

Anna.