Update on Meds and Diagnosis

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

3 Replies

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  • Hi Jennifer, to have been on Leflunomide means you have a dx of active auto immune disease. It's one of the strong ones...here in Australia it's only available if you have not responded to say, methotrexate.

    It's a pity your WCC is low and that the rheumatologist is reluctant to try another disease modifying agent. To be on hydroxychloroquine is indicative that she acknowledges you are unwell.

    Although prednisolone is not usually the drug of choice with osteoarthritis maybe it is still a suggestion for dampening down the pain related inflammation .

    Hopefully you will be able to have steroid injections to ease the inflamed joints....keep us posted.

    Hugs πŸ€—

    Penelope-Mary

    🐚🐚🐚🐳🐚🐚🐚

  • Thank you for your comments. I have been on methotrexate but it did not agree with me and affected my white blood cells. Trouble is, it was a low white blood cell count why my GP referred me in the first place. I suspect my wbc will always be on the low side because I have an immune disease. I went to Rheumatology for answers but they seem to be unsure as what to do for the best. I feel like I'm in a catch 22, will my wbc ever be high enough for treatment with disease modifying drugs?

  • πŸ€—πŸ€—πŸ€—

    All part of having an auto immune disease ...and even there you don't have a name for yours as yet....so frustrating. Only thing left is a second opinion I guess.

    I'm sorry for your unwellness. In extreme situations such as cancers and transplant treatments, CSF's are offered but I wouldn't be suggesting this to your doctors...who knows, may just have this up their sleeve for you in the future.

    I wasn't any help but I am feeling for you Jennifer

    hugs

    PM

    🐚

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