Experiences of Plaquinel please. I started taking... - LUPUS UK

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

timmysmom profile image
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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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timmysmom profile image
timmysmom
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5 Replies

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.

Lupylass profile image
Lupylass

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.

Belee profile image
Belee

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

sezzie profile image
sezzie

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

willowwag profile image
willowwag

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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