Freaking out, sort of : I had an appointment with... - PMRGCAuk

PMRGCAuk

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Freaking out, sort of

Lanakay profile image
Lanakay

I had an appointment with my rheumatologist yesterday. I am currently down to 6 mg prednisone and having some pain but it’s not bad. I was diagnosed last September with PMR and started on 20 mg of prednisone and felt great within 3 days. He now says I have seranegative inflammatory arthritis and said to stay at 6 mg prednisone for now and add 500 mg sulfasalazine twice a day. What??? Of course I came home and looked up my new disease and read that it is related to rheumatoid arthritis and that either diminish the lifespan by 10-15 years. What??? I have not started taking the new pill yet because I don’t really want to add anything else to the mix. Do any of you have an opinion about any of this. I don’t know what to think about all this.

10 Replies

Seronegative rheumatoid arthritis patients must possess a distinct set of symptoms in order to be diagnosed. This is because the lack of antibodies in the blood makes it more difficult to reach a rheumatoid arthritis diagnosis.

Some of the most important symptoms in diagnosing seronegative rheumatoid arthritis include:

Joint pain, stiffness specifically in the hands but also in knees, elbows, hips, feet and ankles

Joint swelling and redness

Joint tenderness

Symmetrical symptoms and in multiple joints

Ongoing inflammation

Morning stiffness lasting longer than 30 minutes

Fatigue

Eye redness

Ask your rheumy how he came to this diagnosis as opposed to PMR.

I had swelling in my hands, fingers and ankles, and bursitis in one thigh. BUT IT WAS NOT MY JOINTS. For instance, it was the spaces between the joints of my fingers that were swollen, NOT THE JOINTS THEMSELVES. Nothing in my elbows. Nothing in my knees. Ankle swelling was edema, probably from pred. I knew it was edema because it was relieved after putting my feet up for an hour or so.

It was a months long frustrating fight, but finally she admitted I was right.

Lanakay profile image
Lanakay in reply to GOOD_GRIEF

Thank you for the information. I have no joint swelling or redness or eye redness. Even before I was treated for PMR the pain was in my biceps and hips and thighs. I have read that PMR can last years and feel that is what I still have.

GOOD_GRIEF profile image
GOOD_GRIEF in reply to Lanakay

I refused to take Methotrexate (the drug of choice for newly diagnosed RA patients in the US- seropositive or negative) because my rheumy could not prove to me it was RA. After being induced to reduce from 20 to 15 mg of pred, I have a major flare that all but crippled me for more than 3 months. Once that began to subside, I took a very slow taper - sometimes as little as 1/2 mg a month...and have proceeded from 20mg last September to 7.5 now - without a flare. I backed off, held steady or went up 1/2 or 1 mg when facing a particularly busy period, snowstorms, or when I caught the sniffles once this past winter. Sometimes I had a few aches or pains, but nothing like I experienced at the beginning nor during the flare. I got through them with a little more mild exercise and stretching, some extra rest, Aspercreme (whose relief my just have been my imagination, but relief is relief), Vitamin D3, calcium and folate. And a little whiskey or brandy once in a while.

If I do eventually develop RA, then I'll take the recommended meds. I'm far more concerned about the damage caused by uncontrolled inflammation than I am of controllable side effects, whether we're talking pred or something else. But I'm not taking them now, because I don't have RA now. I have PMR now, hence, the pred.

Lanakay profile image
Lanakay in reply to GOOD_GRIEF

Thank you again for your reply. I think I am not going to add the sulfasalazine and just stay with the prednisone. I am going to ask just why he thinks I have seronegative inflammatory arthritis.

I’m not up in Sero-ve RA, but Good Grief presents a sound case for it not being that!

I would just say, that starting at 20 and reducing to 6 in around 10 months is pretty good going. (I’m 15 months in, started at 20, and am at 10, having failed miserably to drop to 7). Factor in the average 5.9 years for PMR duration, and one has to wonder why your rheum is looking for an alternative diagnosis, if you had a good response to pred and your reductions are going well. And you’re right, you know where your pains are, muscles as opposed to joints.

🙄 some more eye rolling at rheumies!

PMRpro profile image
PMRproAmbassador

What are his grounds for saying it is now an inflammatory arthritis? Do you fulfil any of the criteria GoodGrief lists?

I had a rheumy who wanted mine not to be PMR but an inflammatory arthritis - he wasn't bothered if it was ankylosing spondylitis although that seemed less likely on the basis of the x-rays or whether it was something else. But he too wanted me to take sulphalsalazine. Luckily I was about to move to Italy and would have to find a rheumy there to monitor me - and all the doctors I have seen other than him agree it is most likely PMR. I still have no joint problems - never did really. A rheumatologist had also already told me I had OA, she "could feel it". The knee in question was x-rayed recently - no sign of any OA and that is 15 years later! Some of them seem to have very fertile imaginations...

I agree with the others: Not Proven - and I'd want another opinion before I started sulphasalazine.

Looked up the proposed medication and it claims to be used for arthritic conditions for patients who have not responded well to other medications. You have responded well to pred and pain you may be feeling now is probably due to a rather rapid taper, not to another medical condition.

Thank you to all of you. You are all confirming what I was thinking. I think I am going to keep on doing what I have been doing. It’s working! Why fix it?

Hi Lanakay, Nothing of worth to add, just wanted to wish you well. Kind regards, Mike.

Thank you. I appreciate having this site to go to with questions and concerns. I can’t even imagine being without it.

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