hiiii

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is anyone else using plaquenil 200 mg for lupus ... or is there any other medication thanksss wendy

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  • Posted

    Hi.

    My rheumatology team are still trying to work out what I have got ( not decided whether it is lupus or mixed connective tissue disorder), originally I only had a depomedrol injection, it didn't really work so they gave me a different steroid injection last time I saw them and they started me on plaquenil too. It hasn't done very much but I was told it can take between 3 to 6 months before it takes effect. I find the steroid helps quite a bit with the joint problems I get, certainly not as stiff 1st thing and pins and needles / numbness in fingers and toes has calmed down alot. I still have pain which I take naproxen and cocodamol for, and the tiredness through the day is still a problem. When the fatigue hits me, I have to stop, nothing works for that so far. Nothing helps with the ulcers and hair loss either.... but twice a day cetirizine helps with the rash. Hope this helps, good luck

     

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  • Posted

    Hi Wendy, I've been on plaquenil 200 mg twice a day for quite sometime but have been cut down to once because of the side effects,

    I am in pain constantly and have felt very unwell for many weeks now,

    So in answer to your question plaquenil appears to be of no advantage to myself,

    But I have heard that plaquenil has some good results for people and with this condition it is trial and error I suppose to find the right drug to suit an individual.

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    • Posted

      hi leona..i was diagonosed with lupus after i finished a world tour on a boat in 2006 i dont know how i got lupus its a mystery??ive been taken plaquenil once a day since then  no side effects nothing just sometimes i go a bit patchy in the sun coz im still on the boat ....i get blood check ups every year and its stable my doc says its sleeping... sometimes i get tired but i put that down to the hours i work.... and also my joints in my thumbs get a little sore.... how is yours... mine is really mild considering wot i have read so far from other people..x
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    • Posted

      Hi I'm not to good at the moment and hurt from my head to toes, really painful joints tiered all the time cold sores up my nose poor sleep etc,

      Even though I was diagnosed about 14 years ago learning to live with this desese and learning the never ending things that go wrong or appear in my body I do believe Iv had lupus since my late teens,

      Although it was not recognised or picked up back then,

      I also work full time and long hours and I'm finding it harder and harder as I get older, but this flare up has lasted several weeks so hopefully it will come to an end and settle down again soon probably just before my rhymatology appointment

      I'd like to say mine is quite mild but when I have a flare up like this one I would say it's a lot more serious on times,

      It's also learning to know weather it's a lupus flare up or a fibromyalgia flare up,

      Wow around the world tour sounds exciting and very exausting

      I hope your well at the moment

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  • Posted

    Been taking 400 mg plaquenil ( hydroxychloroquine) for 17 years as part treatment for SLE. Have had no side effects and as my lupus is quiet and no flares for a few years the dose is being lowered to 200mg.Hope this helps.
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    • Posted

      Thanks sandra I've never had any trouble with this medication, I was just wondering if there was anything better ,, and for flare ups I don't think I've ever had one apart from when I get sun on my arms and it goes a bit patchy, apart from that ,, nothing,biggrin
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  • Posted

    i take disepsable asprin thats all i have been told to take and i was diagnosed in 1991 have only seen rhumey once in 1991 but i will see him soon as im in sooo much pain
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