mixed connective tissue disease , no inflammation - LUPUS UK

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mixed connective tissue disease , no inflammation

traveler2019 profile image
4 Replies

I have mixed connective tissue disease. Have been taking low dose plaquenil for several years. Have issues with joint pain, but no inflammation shows up in blood work. Doctor dismisses pain because no inflammation. Anyone else have this issue?

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traveler2019
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4 Replies
madgerac profile image
madgerac

Hi,

I have exactly the same issue.

I’m on 200mg of hydrocychloroquine have very bad joint pain, particularly my hips but blood tests always show negative antibodies.

I have just started acupuncture to see if that will help but too early to tell! I also swim regularly which does help with mind and body.

I hope you find something to relieve your symptoms.

miccika1 profile image
miccika1

Yes, you cam have pain with no inflammatory markers. I have the same. Although my pain is minimal and plaquenil 400mg per day helps a lot. I still have to take steroids low dose and when in flare a round of higher dose. I can't remember last time i tested high on inflammatory markers, crp, or whatever else they usually check...

chrisj profile image
chrisj

Hi - Joint pain here as well, diagnosed years ago with osteoarthritis after x rays.

I kept asking if the pain was made worse by SLE inflammation and was consistently told no, nothing to do with Lupus. On my last visit to the rheumatologist a month ago said she was stopping hydroxychloroquine, said I didnt need it any more. "insert surprised face"

I've been taking it since 2005 and it's worked really well on the mild SLE I'd been diagnosed with, so to hear it was being stopped was a bit of a shock but she reassured me it was the right thing to do. It seems my immune system is stable and has been for some time.

I was a bit concerned as the dental clinic only this year said the inflammation to part of my gums was caused by Lupus and its not clearing up. I assumed it was Sjogrens but the clinic said no it was Lupus....little bewildered as I left rheumatology. I go back next month for a check up to see how things are. I'm not convinced Lupus is inactive...

I have pain in my right hip (top of my femur) thats been painful for some time and isn't getting better (bursitis was suggested) cartilage damage to both knees, tendonitis right shoulder, wear and tear in my lower spine, generally wide spread OA. Reading your post made me wonder if you'd been checked for arthritis??

RxMe profile image
RxMe

I was given a tentative diagnosis of MCTD about three years ago (ANA 1:320, positive anti-Smith RNP) but no inflammatory markers. The positive ANA (and surprisingly, the RNP — which supposedly does not revert to negative[!]) have since ceased to test positive, I was reclassified as UCTD but still seem to be plagued by many of the initial complaints. In the interim, I tested strongly positive for anti-CCP, a specific marker for RA. I’m on low dose hydroxychloroquine, which helps with hand pain and skin rashes. It has been of no help in lessening other joint pain, tendonosis, alopecia or of course OA damage or bursitis.

My rheumy checks for joint inflammation every visit but all that has turned up via ultrasound is some effusion in one hand. Still seem riddled with joint pain or stiffness. A short course of steroids

gave me no relief but did contribute mightily to my insomnia!

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