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LUPUS UK
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Hydroxychloroquine for fatigue?

Hi folks, I am not diagnosed yet but I have some blood markers (positive ENA and anti-RO) for Lupus or Sjogren's. (more symptoms of Lupus but playing the waiting game)

When I last saw the rheumatologist he gave me three options, do nothing, try a steroid injection, try hydroxychloroquine. He gave me a steroid shot last time and it made no real difference.

My main problem is overwhelming fatigue (like I'm up for an hour or two between naps and I can't think straight even then).

Does anyone have experience with this medicine and fatigue?

I've had hair loss in the past, does this medicine cause hair loss? (something I've heard about anti-malarials)

How does it affect your digestion? I'm already on treatment for acid-reflux and B12 injections for pernicious anemia so MORE gut issues I could do without.

Any other suggestions?

Thanks!

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Hi I was told yes you have lupus then I sore a different consultant and he says mctd Meds are the same as being treated for lupus and he told me it can take a long time to get a definite diagnosis of lupus steroid worked for me hydroxy dose not do much but with methatrexate big improvements best of luck

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Hello Amyetc

If you look on the "home" page of this site, you'll find a number of LupusUK leaflets you can download. They are all very good. The St Thomas' Lupus Trust is also a reliable source. Here is their page about anti-malarials like hydroxychloroquine lupus.org.uk/what-is-lupus/...

As you'll see, relief of both fatigue and joint soreness are among the main uses, and it's usually well tolerated. The main problems that get reported here are gastro-related ones. A lot of people seem to find it aggravates gastritis and gives you a grumbling gut for the first few weeks - and that was my experience. I took low dose lansoprazole and found that these symptoms soon disappeared - 2 years on, I have no trouble with it.

Hope things get sorted for you x

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Hi AmyG6500,

Hydroxy works well for fatigue and to be honest, I really haven't noticed any side effects from the drug and I take 400mg daily. Hope you find it works for you. Lupus and/or most connective tissue diseases take plenty of time for doctors to figure out but fortunately the treatment is all the same. Take care and all the best. X

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Hydroxy has all but taken away Joint issues...still need to stay clear of the sun because of rashes.....Fatigue ugh still with me

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