Taken off hydroxy chloroquine

Hi. .

I was diagnosed last year and started on HCQ and low dose steroids. I started to feel better but I was still experiencing some symptoms so at my last appointment the rheumatologist started me on azathioprine and took me off HCQ. It's only been a couple of weeks but my old symptoms of extreme fatigue and muscle soreness are back. When I look at all the literature it says all lupus patients should be on HCQ..so can anyone explain why I would be taken off it when it was helping with some symptoms. I dont want to challenge the rheumatologist if she is following standard practice.

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  • Good question. Am v much relating to your situation.

    In 2011 I started treatment with daily hydroxy, which helped enough to prove my lupus clinic was on the right track. Since then my therapeutic combined therapy treatment plan has evolved to include amitriptyline + prednisolone + mycophenolate.

    Then 2 years ago my rheumatology chief had me pause daily hydroxy for 5 months when immunology began to investigate what has turned out to be a Primary Immunodeficiency (pre-existing my treatment with immunosuppression). During those 5 months, various signs & symptoms flared. At that point I forcefully argued my case to go back on daily hydroxy. Rheumatology agreed. After a few weeks back on hydroxy, those flaring symptoms damped down again (although not quite to the level they had dropped to before that 5 month pause, unfortunately).

    Since then we've had reports in the Lupus UK News & Views magazine that researchers have established the importance of continuing daily hydroxy alongside the other meds in our combined therapy treatment plans + that it's generally accepted Hydroxy's positive effects accrue cumulatively: the longer you're on hydroxy, the more it helps. Combining hydoxy with other lupus meds makes it possible to keep all your meds at the lowest possible doses, thus improving their risk:benefit ratio.

    The British Society of Rheumatology lupus care guidelines cover protocols for prescribing hydroxy:

    rheumatology.org.uk/include...

    There are situations in which a patient may need to come off hydroxy, but they are very unusual...and the patient should be clearly advised of all reasons for such a significant change in treatment plan

    Take care & good luck...I hope you'll let us know how you get on

    πŸ€πŸ€πŸ€πŸ€ coco

  • Thank you..I feel more prepared to argue my case having read your post

  • πŸ‘πŸ€πŸ‘πŸ€πŸ‘πŸ€

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