New to Plaquenil: I just got home from appoinent... - LUPUS UK

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New to Plaquenil

AuntTea profile image
7 Replies

I just got home from appoinent with rheumatologist. Starting on Plaquenil. Do you all tolerate it pretty well? Has it made a difference in your symptoms? Specifically has it helped fatigue?

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AuntTea
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7 Replies
Hollydebs profile image
Hollydebs

Hi, I have been using Plaquenil for about 16 months now. Don't get any side effects which is a bonus. Does help a bit with the muscle aches although usually need top up with the odd painkiller. Does not help with the fatigue, find nothing does. Spoke to Rheumy about fatigue and literally told that's a fact of life with Lupus. Unfortunately I find there are manageable days & bad days it's so unpredictable.

Hope the meds work out for you.

Take care x

AnnNY profile image
AnnNY

The first time I took plaquenil in the 80s it did help with the fatigue, but I also had a physiatrist who gave me a low dose of synthroid. I stopped taking it after about 7 years. Now I'm taking it again for about a year and a half and it is not helping me much with the fatigue, but I went to an endocrinologist who gave me again a small dose a synthroid again. I feel like that may be pulling out of the fatigue a bit, but it is early yet.

Sometimes you can start plaquenil with low dose of prednisone. That may help you with the fatigue and also you may feel better quicker than you will on plaquenil only, since plaquinel does take a long time to kick in completely.

barbdockeray profile image
barbdockeray

Hi I couldn't take it had a massive reaction to it .suppose that happens ..take mecanine now ..

kittykat68 profile image
kittykat68

Hi u dont realise how much it does help until ur off it, ive been on it 5 years but had a break of 6 months and God I couldnt move I was totally drained and bones and joint hurt like mad, also try to take it after ur breakfast never take on an empty stomach, and try to take it before 12 as it can interfer with ur sleep, its a disease modifiing drug so all lupys should be on an anti malaria as its proven that lupys live longerx

milkwoman profile image
milkwoman

I'm in the States and have been on Plaquenil for 1 year (namebrand as I could not tolerate the generics - had horrible stomach/GI issues).

Yes, Plaquenil has helped tremendously BUT it can take 3-6 months to feel effects and up to a year to get full benefits. I have lupus (SLE) and Sjogrens.

I take 300 mg per day, split dose (200 mg with breakfast and 100 mg around 5:00pm with crackers). The dosing is based upon height and weight.

It really helps my joint pain and inflammation. I'm sure it also helps with fatigue. I'm also on thyroid meds (levo) and I find when my thyroid function is in balance my fatigue is in check.

Please have eyes checked by an ophthalmologist before starting. You want a baseline scan so that while on Plaquenil, you can be checked regularly to make sure you have no eye issues, specifically, macular degeneration, due to being on Plaquenil.

I don't think I could function without it!

AuntTea profile image
AuntTea

Thanks for the replies. It's really nice to get insight from others in the same boat not just doctors. Glad I found this site. 😀😀

Dragonfly4 profile image
Dragonfly4

I was on this many years ago and it greatly helped at the time. I had to come off it for pregnancy. I tried it again a year ago in conjunction with methotrexate but it caused horrible nausea so I have to go through different meds.

I have to say it did work for years. I do believe you need to have regular eye tests when using this med so do check with consultant when you next see him/her.

Very best wishes

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