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Hello, I have been on planquinel (200 or 400mg day - currently 400) for about 3 years now (fatigue, stiffness, raynauds, muscle aches and swollen painful joints). Anyway for the past eight months or so I have felt better than ever - almost an overnight thing. Apart from raynauds and needing loads of sleep still i feel great!! I know this remission could end at any point but was wondering if people in the same situation carry on taking their meds, especially plaquinel as it takes so long to take effect?
Thanks
 

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Hiya

I have not been taking Plaquenil for as long as you. I noticed a difference at 10 months and will not stop it unless forced. (400 mg per day from the start and still on same dose.)

I am working part-time again. I do not need to sleep as much during the day. I am not pain free, but I have far more of a life than i did 1 and 2 years ago.

I hope things wil continue to improve, so have not reduced my dose yet, though my consultant says I should ... when I feel ready. She has wirtten to my gp to say he should decrease it when i am ready, but allow me to go back up again if I start to go downhill.

Perhaps you could try reducing if you are keen to reduce your meds, but allow yourself the option of going back up to 400mg if there are problems. You are braver than me!

I think quite a few people on are a 200mg maintenance dose.
 

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I believe most people in your situation would continue to take Plaquenil at a 200, 300, or 400 mg a day dosage. Most remissions are medicated remissions, and very few lupus patients feel the benefits of stopping medication are worth the risks of a lupus flare. Especially Plaquenil which has so few side effects after the first few weeks and so many beneficial intended effects.

Congratulations on your remission - long may it continue!
 

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I have just been changed from methotrexate to azathioprine/steroids and still take 400mg hydroxychloroquine daily. I have tried to reduce the Hydroxy/Plaquenil but it doesn't work.. and it is a pretty side-effect free drug for me so I am lucky. I've been on the Plaquenil for 3 years and don't want to stop it:hehe: (unless forced at gun point!!!)

Just waiting for the azathioprine to take over from the methotrexate so that i can STOP THESE STEROIDS - yet again.. They are the little pills I loathe but I know they do keep me moving so must keep taking them for a while.

We are all rattling with tablets on this site aren't we?

Take care Juliet
 

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Gemz,

On of my regrets is that I didn't stay on the Plaquenil when I went into remission. The reason I regret it is that since I came out of remission I have been far sicker than I ever was before my remission. It is something to talk about with your doctor as maybe he would want you to lower your dose to just 200mg per day. In the meantime enjoy yourself, don't overdo, but go do things that your lupus inhibited before.

Take care,
Karen
 
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