Thank you for your response. The bloodwork was at the end of October. Bloodwork in January appeared normal. However, my rheumy refuses to prescribe any NSAIDS because of the elevated numbers in October. Yesterday, was the first day the nurse suggested I see a nephrologist after my husband insisted the rheumy explain further about what may have caused the spike and what I am supposed to do about it in the future. In the three years I have seen her, she has never offered prednisone. Last night, I read numerous comments on your site re: the relief found after taking prednisone. I called the rheumy office to speak with the nurse today and she said that if the pain doesn’t subside in the next week or so to call back and ask the doctor if I can try the prednisone. Because I asked, the rheum ordered xrays of my wrists and back. Meanwhile, I am left with nothing for pain. My thyroid has been checked several times and everything appears normal. I am definitely going to schedule to meet with a new rheumy for a second opinion prior to my April appt. with my current rheum. I think you are right about a visit to the endo as well. Again, thank you for your site. I will keep you posted.

If you try another rheum doc, you have the choice about whether you tell them everything about this consultation or not. You can ask for your labs or the doctor’s notes and bring one or both of those. Or you can just make an appointment for another rheumatologist because you think this is a “bad fit,” as they say. Leaving “discouraged” and with an anti-depressant instead of dealing with the symptoms is not a good sign. Perhaps you can make the appt with a 2nd opinion dr and don’t cancel the other appt until after the appt.

There are many questions – When was the kidney bloodwork? Has it normalized? Do you need to see a specialist for that or was there an explanation for it already? I don’t know if she offered you any alternatives if she said no ndsaids – did she offer you prednisone? Or any dmards?
Finally, you should consider seeing an endocrinologist because some of the symptoms in your list sound like they could be thyroid or other hormone issue. It should be ruled out before it’s all just blamed on the RA too – make sure you don’t have more going on. I sympathize with all of this. And you’re right to not accept someone just “equating it all with FMS.” That’s such a fuzzy diagnosis that doctors who don’t know better will just blame everything on it like you said – and that is no answer – or treatment.

Secondly, a negative blood test for either rheumatoid factor or any of the other markers, including ESR do not exclude the possibility of RA. I tested positive for RF early on , but as I became more poorly, the RF vanished. I was diagnosed with fibro, based on an absence of markers. I tested positive for the HLAB27 marker – one case of ankylosing sponylitis in the family, but four cases of RA, including my mother. The symmetrical swelling and redness, which has now finally affected my hands, has led to a diagnosis of RA, with some lupus features ( everything but a positive ANA actually!), with secondary Sjogrens and Raynauds. Ive had thrombocytopenia for at least 15 years, and this is most consistent with the lupus, along with the rashes, and other symptoms. My compliment levels were low – again not consistent with RA as that tends to throw up normal or slightly raised compliment levels.

My rheumy has carefully reviewed my case this past 12 months, and a microvascular study turned up secondary raynauds – to which she said “we need to evaluate quickly what it is secondary to…” Good move on her part. I tried hydroxychloroquine with superb results for the lupus symptoms, but the side effects were ghastly. Im now on mtxt. No improvement yet after 2 months. I am trial ling it for 6 months, if I dont respond we try something else.

Steroids worked for the pain in my hips, but didnt touch anything else – my joint pain and inflammation is in every joint, including my jaw, neck and ribs!

With regard to the HLA B27 marker – it indicates a succeptibilty to Ankylosing spondilitid, Crohns and uveitis, along with other inflamatory type arthritis. Its rare to have that marker AND a positive RF like I did, but statistically, ginger hair, rhesus negative blood and spina biffida occulta are also very rare, yet here I am, an anomaly typing away!! Plabe crashes are rare, too, but that is no comfort at all to the passenger who realises that the plane is plummeting….