See, I knew I was right. It's RA flare not OA!

[jeanjack]

Some of you may remember from my last posts that I have been off MTX for 6 months due to chest infections. Have been flaring in knee and elbow and finally managed to get an earlier appointment with my Rheumy to try to sort out some new medication. However, Rheumy did not think my pain was due to RA but thought it more likely to be OA so sent me for blood test and x-ray and suggested I see my GP for pain relief medication. He said he would then see me for in 4 months to see how I was getting on.

Saw my GP yesterday who gave me co-codamol. She could not access my test results so suggested I get back to Rheumy. Phoned his secretary to pass on a message and finally got a call from Rheumy this evening. He confirmed that the x-ray showed inflammation and fluid on my elbow but not OA. Blood test results showed increased levels of ESR and CRP with a Rheumatoid factor of 120. He admitted I was right in thinking my flares were due to RA and is arranging for me to have the fluid drained and a steroid injection into my elbow. Will then arrange for me to go onto Leflunomide.

It has felt like a marathon getting to this point with me making all the running but I am glad I am now getting somewhere. I knew I was not totally convinced with the OA diagnosis and I am pleased I chased it up. I think it just goes to show that we know our own bodies best and know what sort of pain we are in but trying to convince our medical friends is sometimes difficult!!

Jean

[hatshepsut]

Well done!!! It's so difficult to keep pushing like that, and you got a result. I'm sorry it's RD, because nobody wants that, but I'm so pleased that you persevered until you got a definitive diagnosis. I do hope the leflunomide helps. M x

[jeanjack in reply to hatshepsut]

Thank you, hatshepsut. I'm now looking up information on Leflunomide to see what I am getting myself into!!

Jean

[Hidden]

I feel really proud of being a member this community just now - and you are an example of why I'm proud Jean!

Thanks for inspiring me to keep waving the flag at my own rheumy by telling us of your own battle to get the acknowledgement and treatment you need and deserve. I'm quite certain that the nerve pain I'm currently having relates to my RD - but so far my rheumy has failed to acknowledge this - despite my high ESR and the fact that it only subsides when I'm on disease modifying drugs or steroids.

He's not blaming it on anything psychological/ imaginary or saying it is all OA at least - but nor is he doing a thing to try and get it treated.

So reading this post makes me feel stronger about soldering on, fighting my corner. Thanks Jean and very best of luck with the Leflunomide. Twitchy x

[jeanjack in reply to Hidden]

Thank you twitchytoes. I'm feeling proud of myself for getting a result and glad you are going to keep on fighting to get the result that is right for you.

Jean

[Hidden in reply to jeanjack]

So you should feel very proud of yourself! Unfortunately it is more complicated when it comes to the peripheral nervous system - but even ruling MS out would be something for me at this stage. X

[nomoreheels]

Result! If only he'd listened to you in the first place. So many don't here & I just don't get it. My previous Consultants always did as a matter of course as it was necessary for them to get the full picture. I'm so pleased it's not OA as well but maybe this will change the way he treats his patients.

Hope you are listened to from now on, the steroid helps & the leflunomide works for you.

[jeanjack in reply to nomoreheels]

Thank you nomoreheels. As usual I am reading all I can about Leflunomide so that I know what to expect once I start it. So far it sounds just as scary as MTX but I managed to tolerate that pretty well so hopefully Leflunomide will be the same.

Jean

[nomoreheels in reply to jeanjack]

Just think back to how much you read about MTX didn't apply to you Jean, glass half full & all that. Leflunomide may just be the one you tolerate well & if it controls you then job done!

[Hidden]

Keep fighting! And congratulations - a wrong diagnosis of OA can be a total flipping disaster, you've done so well to avoid it.

[jeanjack in reply to Hidden]

Thank you postle2. I was pretty devastated when I thought it was OA as I know there is nothing much can be done for this type of arthritis and I thought I would be stuck with this pain for life!! Thank goodness I did not give up and now hope to get some relief very soon.

Jean

[shazmill]

Hi

I had a similar problem. 5 years ago I was sent by my GP to see a Rhematholgist. He yold me I didnt have RA. I was convinced t I did.

4.5 years later I was in a right state . I went to Rhematholgist only to told I now had RA.

I knew I was right to question their diagnosis but its a constant battle when consultants just don't listen.

I tried Methotrexate which worked but I developed a cough and breathing difficulties. I told him I wanted to come off them but he didn't listen and doubled the dose.

I came off Methotrexate in March 14 and

ended up in hospital as i was having difficulty breathing.

I was diagnosed with reflux condition. I didn't have this condition before. I have am now taking Salfaazine . No major side affects just yet but early days yet.

[jeanjack in reply to shazmill]

Hi shazmill, our experiences are very similar and it just shows that we know ourselves best. I know we could not manage without the Rheumys but sometimes you have to be strong and keep fighting to get them to understand. I am already on Sulfasalazine but will be going on Leflunomide as well when I get back from holiday. ( Off to Turkey tomorrow ) I've got steroid tablets to see me through till then but did not want to start new meds while away in case of any side effects. I must say Leflunomide sounds just as scary as Methotrexate but I'm happy to try it.

Jean