SLE and me and Plaquenil

I was diagnosed 5 years ago with SLE, Sjogrens, and connctive tissue, had loads of blood test etc, which cam back positive for the markers etc for SLE. I have been on Plaquinil for 5 years, this past year have had quite a deterioration in my eyesight, have developed cataracts, and tinnutis. Saw my rheumy doctor last week and he said to stop the plaquenil for four months to give my system a rest and to see if anything improves. So far all i have is a dizzy sickly feelin, feel light headed and totally unwell. I cannot make my mind up if its a lupus flare, burning feet, muscle burn, painful joints, total lethargy.

Not sure whats best, go back on plaquenil, stick it out or what. My GP is not very up on SLE, i tried to get an appointment with the Rheumy but nothing until end of july!

I have predisonole which i take on flares, but hate taking steroids.

ANy advice would be gratefully recieved, many thanks.

2 Replies

  • Hi. Poor you I understand how you are feeling as I'm not feeling at all well just now myself. To me it sounds as if you need a new disease modifying agent rather than to go back on Hydroxichloraquine. It may well have run its course and no longer be effective for you. There are still Methotrexate, Azathioprine and Mycophenolate to try. I'm on the latter now and tolerating it well. Not sure how much it's helping me yet as I'm only going into my fourth month on it and, although I keep flaring with my Sjögren's/ CTD it may well be that things would be worse if I wasn't on it.

    Does your hospital have a rheumatology helpline you could contact or, alternatively, could you phone your consultant's secretary to see if they can offer you a cancellation appointment perhaps?

    Your GP should be able to help you with this even if they don't know much about Lupus. Also they should be willing to make the effort to learn more in order to help you and their other Lupus and Sjögren's patients! Maybe you could start doing some research into alternative treatment options now and ask your GP to help you look into this too?

  • Do you not have an assigned rheumatology nurse or helpline? Or contact the rheumy's secretary (if he still has such a thing in the NHS) NOT the appointments desk, and ask for help.

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