Update on Meds and Diagnosis and Advice Please

I had to go back to my Rheumatologist because since stopping the Leflunomide, my symptoms seem to have got worse. Because of my neutropenia, she was not keen on putting me on any more disease modifying drugs. Therefore I will remain on Hydroxychloroquine 400mg daily. Ive been put on this drug because I'm RNP Positive? Not really sure what that means.

My Rheumy acknowledge that I have flexor tendon disease and have predominant flexor tenosynovitis (Trigger Finger). I am being sent for an ultrasound on my hands to see if there are any injectable sites in my hand that would benefit from steroid injections?

I do feel like things are slowly getting much worse. I've found it impossible to walk and even stand on some days. My GP sent me for a pelvis x-ray. It's been confirmed that I have Osteoarthritis in both hips. It feels as though my hips have moved out of the joint, it's that painful. For this I taken Naproxyen and Zapam pain killing drugs. AT lease I now know why I'm in so much pain.

I can't help thinking that my deterioration in health is due to a specific autoimmune problem that my Rheumatologist has not identified as yet. I am not sure where to go from here, other than to get as fit as possible under the circumstances. I do want to try other disease modifying drugs in the future, although my Rheumatologist states that her options are limited.

I'd welcome any suggestions I could give my Rheumatologist or any experience you may have of being neuropenic (low white blood cell count) whilst taking disease modifying drugs.

Thanks in advance.

Jennifer

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  • Hi Jennifer. Sorry that you are struggling. From my knowledge of autoantibody test results I believe your positive RNP may mean you have Mixed Connective Tissue Disease/ MCTD. This is actually less random than it might sound and is a classified disease in itself.

    For support and more info your best bet would probably be to join the Lupus UK HU community where many with UCTD and MCTD post.

    Hope this helps a bit? The main drug for connective tissue diseases, where low white blood cells are a problem, is Hydroxichloraquine I believe.

    There may be biologics too but it sounds to me as if your rheum has diagnosed you but failed to explain this to you properly? Maybe your GP could shed further light on what the rheumy's thinking is and talk it through with you?

  • Thank you for your advice, I've just posted this to the Lupus UK group.

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