Side effects hydroxychloroquine : Hello everyone, I... - LUPUS UK

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Side effects hydroxychloroquine

Zeberdee1 profile image
Zeberdee1
•8 Replies

Hello everyone, I've had my kidney biopsy and ended up with a small bleed slightly sore but getting there I've got a call next week with consultant 😩. I've also started hydroxychloroquine 2 weeks ago very funny tummy hairs falling out and my mood seems very low which isn't like I'm usually just crack on the best you can and there are worst things life so not like me at all. I feel like stopping them but I know I need them but how long will it last? Do the side effects ease? feeling very weepy and sorry for myself 😥

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PositiveT profile image
PositiveT

Hi Zeberdee1. I am very sorry to hear you are having these side effects. I have just been told to stop taking Hydroxychlorquine. I had been on 200mg once a day for two weeks and have had major skin reaction rash all over and terribly itchy. Now on anthistimines to fight it off. Speak to your rheumatology team asap they will advise you.

In the meantime be kind to yourself and remember you are only human and we all feel a bit off now and again.

Take care. 🌻

Spanielmadlady profile image
Spanielmadlady

Hi Zeb...glad biopsy is over and done with.my side effects from hydroxchloroquine lasted a month ....bad head, nausea etc that was 2 1/2 years ago.i cant say it affected my mood.youve got alot going on at the minute so as PT said be kind to yourself but if you are concerned contact rheumy nurse. Big gentle hug xxxx🤗

CecilyParsley profile image
CecilyParsley

Bless you, right now you are dealing with a lot. Hydroxy can cause headaches and nausea but it soon wears off. With me it was about four weeks before it completely went. The benefits for me were worth persevering. The biggest benefit was an easing of the crippling fatigue. You have every right to feel fed up because you have been through an ordeal. If you are concerned call your Rheumatologist and discuss things. Huge Cwtches xxx

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi Zeberdee1,

I'm sorry to hear about how you've been feeling, would you like someone to speak to?

We can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can request details of your local Contact at lupusuk.org.uk/contacts/

Common symptoms associated with hydroxychloroquine are stomach upset and nausea. According to The Lupus Encyclopedia, stomach upset goes away when hydroxychloroquine is taken at a lower dose. You must not lower the dosage without advice from your doctor.

You may wish to read our blog article on coping with hair loss at lupusuk.org.uk/coping-with-....

Best wishes,

Chanpreet 💜

Zeberdee1 profile image
Zeberdee1• in reply toChanpreet_Walia

Thank you Chanpreet. I'm feeling more upbeat and given my head a wobble think I was feeling very overwhelmed with everything happening and trying to adjust to my new life. Good to know there are people you can speak to if you need to as well as all you lovely people on here so thank you xx

Paprika60 profile image
Paprika60

I had years of stomach upset and etc. (on and off) including balance issue and foggy brain and recently changed the brand to Zentiva and it has made a difference. It seems the fillers do make a difference. So please look into it.I do not like Hydroxy but it seems doctors are less keen to change to something else unless there is toxic side effect on your eyes. Please make sure to have your eyes checked every 6 months. I think Lupus site has lots of info. on Hydroxy. Best wishes!

Rosiaz profile image
Rosiaz

Although I have been on hydroxychloroquine for years and have had many unpleasant symptoms from nausea , gastric problems , headaches , to joint and muscle aches and pain , etc I have put them down to lupus itself along with ulcers, butterfly rash , and frequent exhaustion . All fluctuate lasting anything from a few days to several weeks. I think of them as making up current flare .

And , yes , it can mean being really low emotionally.and weary of a struggle.

Do call your lupus nurse when you feel.you need to.

Best wishes and may you have encouragement.

LotiRamjet profile image
LotiRamjet

I am having the worst side effects from hydroxy. I’ve been on it for 3 months. I do feel much better physically, but I am very depressed since I started it as well. It goes beyond depression actually, I’ve been crying for three days straight and have started wanting it all to end. (I have a shrink and I am fine - just frustrated.) I read that depression isn’t a side effect, and then I saw studies which were done since covid hit that say it causes depression and suicidal ideation - more in women. Apparently it is a rare side effect that happens to people who have drug induced Lupus more. I have no idea if this is all correct but clearly more study needs to happen if I am to take a drug from 1940 (sarcasm - this is all we have?). This is the only new drug I have started lately, but if it is going to do this to me, I just can’t take it, but I can’t not take it. Dilemma!

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