Reducing Hydroxycloroquine, any success stories? - LUPUS UK

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Reducing Hydroxycloroquine, any success stories?

Hello I’ve been taking hydroxcloroquine at 400mg a day for nearly 3 years. The crippling fatigue, fevers and rash are largely under control. I still have pain in my muscles and joints most days and still suffer with inflammation of soft tissue.

I’ve tried reducing dose 18 months ago and was a disaster, ended up on steroid in hospital.

But now I’m finding that if I get a cold or virus my body just can’t fight it and I’m ill for at least a month at a time. So I’m wondering if reducing hydroxy would help with that?

Has anyone successfully reduced dose once symptoms were mostly under control?

I have SLE, Sjogrens and coeliac disease.

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Hi Beau I'm sorry that I can't answer your question but if it's any help I'm only on 200mg of Hydroxychloroquine but I have the same problem. Whenever I get an infection it takes weeks and weeks to recover. It was never like this before autoimmune condition.

Hope get an answer. X

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Me either, it’s really rubbish!

Thanks for your reply 🙂

X

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I’ve only just started this medication and I’m happy to read that most of your symptoms are under control whilst on it, that gives me so much hope .

Personally without being medicated my colds linger for about 6-8 weeks, I’m guessing this is because my immune system is always fighting something else! I literally blow my nose constantly for that period. In a nutshell I think without the medication you may still face the same symptoms with fighting the common cold. We are all so different so what works for one doesn’t always work for another x

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Thanks for your reply.

It’s horrid isn’t it.

I don’t get colds as frequently now, maybe 3 a year but it wipes me out. Before I was diagnosed I was constantly with a cold.

The hydroxychloroquine has helped, it’s not a miracle cure and it took ages to take effect at least 8 weeks. But it was a year before I really started to see an improvement especially with fatigue and fever. Hope it helps you

X

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I’m on 200mg hydroxychloroquine, trialed one month off recently & saw start of rash, chronic sinusitis, migraines returning, still not sure whether coincidence or not ...,

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Ah sinusitis is the worst, this is my body’s absolute revenge when I do too much!

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Hi Beau

I started hydroxychloroquine in early 2017 like u 400mgs daily and I did have improvement with my symptoms..rash..joint pain..fatigue etc. I was doing well n my dermy advised to try and reduce to half the dose..I did that for two weeks n then couldn't stand it and increased it again..two weeks later n I tried again to reduce to 200mgs and lo and behold..symptoms came back with a vengeance( although those symptoms never dissappeared totally..just a bit more manageable). So I'm still on 400mgs per day as well as steroids n immune suppressant. At times I had thought that hydroxy wasn't working but trying to reduce them taught me that they definitely are doing the job!!

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Yes this has been my experience too. Each time I’ve tried to reduce it, symptoms come back. But I’ve not felt as well as I do now for at least 6 years, other than these awful colds.

I’ve only taken 200mg per day for 4 days now, so far no changes.

Thanks for your reply. X

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I have been on Hydroxychloroquine for over two years -200mg per day. It has been A great help. However, I developed a fierce rash on my upper thighs and my legs really hurt a lot. With no bad results from blood clot tests and no knowledge from 2 doctors of what it could be, and whilst waiting (so far 7 weeks) for a Consultant appointment, I decided to reduce my intake of Hydroxychloroquine. I take it every other day. I feel fine and the pain stopped within days. The rash is still there but not so fierce. So far so good. We are all different in the way we react to things, illness or drugs. Nothing will make us heal quicker because we are fighting our immune system, which is now our enemy. Hydroxychloroquine won’t stop you healing. I would ask a Doctor who understands Lupus but I haven’t found one yet! There is such lack of real knowledge- it is depressing. Good lyck

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Thank you, yes it is frustrating, my consultant is ok, but it takes months to make an appointment and then it’s only 10 minutes. GP is nice but really doesn’t have any idea. I’ve just experimented over the years with what works and what doesn’t.

I’ve found amytriptyline takes the edge of pain, but gabapentin made me sicker than I’ve ever been, thought I was dying. No other painkillers help at all.

I had a leg rash when this all started back in 2009, don’t know I had Lupus back then, certain it was actually vasculitus, but was treated for all kinds of different things!

Thanks again, take care x

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An excellent short chpt 19 on hydroxychloroquine and other antimalarials for lupus & sjögrens disease by Professor Graham Hughes, “A patient’s guide to lupus” published by the LONDON LUPUS CENTRE.👍

Excellent, compact book.

I like his analogy on the “immune system in lupus”,

P12, “...a city where normal controls fail, law and order is poor and the household rubbish lies on the street...” ‘This is what happens in active lupus, the normal immune surveillance breaks down and the normal mechanism for removing cell waste breaks down...’.

Hence dry skin++😟 builds up ie psoriasis exacerbation?

Hence T cells and B cells not recognising what is self and what are foreign cells is what lupus is all about! One’s own body is attacking itself.

Surprisingly for me since having lupus diagnosed some 3 years ago I have had hardly any bouts of flu or colds etc. Perhaps the non-live vaccine flu jab has given me protection.

Note that hydroxychloroquine is very toxic 200-400mg/day is the max! Blurred vision can be a difficult side effect. Why not leave it out for a day or two? I do.

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An excellent short chpt 19 on hydroxychloroquine and other antimalarials for lupus & sjögrens disease by Professor Graham Hughes, “A patient’s guide to lupus” published by the LONDON LUPUS CENTRE.👍

Excellent, compact book.

I like his analogy on the “immune system in lupus”,

P12, “...a city where normal controls fail, law and order is poor and the household rubbish lies on the street...” ‘This is what happens in active lupus, the normal immune surveillance breaks down and the normal mechanism for removing cell waste breaks down...’.

Hence dry skin++😟 builds up ie psoriasis exacerbation?

Hence T cells and B cells not recognising what is self and what are foreign cells is what lupus is all about! One’s own body is attacking itself.

Surprisingly for me since having lupus diagnosed some 3 years ago I have had hardly any bouts of flu or colds etc. Perhaps the non-live vaccine flu jab has given me protection.

Note that hydroxychloroquine is very toxic 200-400mg/day is the max! Blurred vision can be a difficult side effect. Why not leave it out for a day or two? I do.

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I tried reducing from 400 to 200 and got back joint pains. Im on 400 for over 10 years and it's considered the safest drug for lupus of all. Im suspicious that it would influence the duration of cold because it's not an immunosupressant, but immunomodulator. AI diseases themselves could extend the recovery because our immune system is faulty in general. I have heard some people reducing immunosuppressants when having a cold but not plaquenil

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