LUPUS UK
21,140 members16,751 posts

Experiences of Plaquinel please. I started taking it 2 months ago,

but my symptoms are getting worst apart from the Sjogren type symptoms of my eyes which seemed to get worst but then alot better. I do not have a diagnoses yet but my rhumy did say she thought I proberbly have Sjogrens. My other symptoms are fatigue, joint and muscle pain, anaemia, fevers and chills and swollen glands. I also have auto immune hypothyroidism. Id be very gratfull for peoples experiences of taking it and how long it took to start working. thank you.xxx

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Hi timmysmom, I have taken plaquinel since 2005, 400g a day. I never felt they wholly dealt with my symptoms and over the years have had other meds too. It usually takes 3 months to kick in. For me it was about 4. It wasn't till a doctor stopped all my meds for 8 maths, last year, I realised the plaquinel did help. Over the years when other meds were prescribed, I used to ask why I still had to take plaquinel if it didn't work. My rheumy said my meds were like a recipe and a bit of everything helped the ' dish' !!! Strange comparison but it was true in my case. Keep regular eye tests as it can interfere with it. I also have mild tinnitus,( possibly due to long term use, but not proven.) good luck, I hope you start to feel better soon.

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Hi there

For me I'd say I noticed a small improvement after 3 months. After 6 months I noticed a big improvement in my energy levels, joint pains etc. At one point my rheumatologist tried reducing my dose from 200mg twice daily to 200mg once daily/twice daily on alternate days and within weeks I was in a flare, so for me it really does work.

Over the years I've had ups and downs, and currently I also require methotrexate to keep my disease activity under control, but Plaquenil for me is something that works well.

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Hi,

It took about 6 months before I noticed a significant difference. My joint pains and fatigue are soooo much better than before. Hang in there and fingers crossed you'll feel some improvement soon. Xxx

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Hi Timmysmom, I've been on plaquenil for the last 10 months to treat my lupus. I have to say it took at least 4 months before I reaped any benefits which included, rashes & fatigue. I still struggle everyday & sometimes wonder if it's helping at all, but honestly thinking back to how sick I was I know it is so hang in there as it's response is different with everyone. Crossing everything for you. X

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Hi timmy i took about six months to see any improvement at all with me, it really didnt stop the pain im in with, serousitis lupus, lupus sle, hypermobility, vasculitus, etc etc that i have so we started a mix of steriod injections and so far its really helped me...after the 6 months i though oh gosh what now i dont feel as if planquinel was touching me rhumy explained sometimes, something else needs to be added to help symptoms im very lucky to have a brill consultant who really cares xx hope you feel some relief soon merry xmas

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