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Hydroxychloroquine side effects, talk to me

(34 Posts)
Justonedayatatime11 Fri 26-Apr-19 20:21:38

I've been prescribed this for mixed connective tissue disease, but I'm too scared to take it, although I know I should. But the side effects sound awful. Has anyone got any advice, or had a good experience on it? I'm really stressed about it

PolarBearDisguisedAsAPenguin Fri 26-Apr-19 20:23:54

I take it for SLE and Sjogren’s and have for over a decade. I’ve not had any bad side effects and it has made a real difference to my levels of fatigue and joint pain. I take 400mg per day.

gamerwidow Fri 26-Apr-19 20:26:57

I take 200mg a day I’ve been mostly side effect free but I have had quite a bit of hair loss. Fortunately i has very thick hair so unless you’re me or my hairdresser you wouldn’t notice but it was quite alarming until it slowed down.

gamerwidow Fri 26-Apr-19 20:28:03

P.s. i take it for RA and it’s really reduced my joint pain.

SuperSange Fri 26-Apr-19 20:30:11

I have it for RA too and haven't had any effects at all. X

Justonedayatatime11 Fri 26-Apr-19 20:31:38

Thank you! I had to have an educational session with a nurse before they'd give it to me and she really scared me, telling me it can bleach your hair/hair loss, turns your skin grey if you sit in the sun, can give you a really dodgy stomach...
I know it all sounds so vain, but I feel like a massive freak as it is and am reluctant to do anything that's going to make me feel worse

browneyesblue Fri 26-Apr-19 20:35:42

I take 400mg a day - I have done for years. It really helped, and the only side effect I have is sun sensitivity. I wear sunscreen when the weather improves, and spend more time in the shade or wearing a hat.

I have a yearly eye exam. They took photos at the first one so that they had a record of any changes. My eyes have been fine, and I have been told that they wouldn’t expect any issues with the dose that I’m on, but that they still monitor carefully just in case.

browneyesblue Fri 26-Apr-19 20:39:29

In fact, one of my symptoms was hair loss. Since taking hydroxychloroquine (fun to say and fun to spell!), my hair loss has stopped and I’ve had some regrowth. My skin doesn’t turn grey in the sun, but I am more prone to burning so stick to the shade or sunblock. My (dark) hair hasn’t bleached either grin

Justonedayatatime11 Fri 26-Apr-19 22:14:52

I took it a couple of hours ago, after dinner, and now have shocking heartburn/indigestion and feel sick sad

DreamingofSunshine Fri 26-Apr-19 22:27:09

I'm on 400mg for RA and no side effects.

DameFanny Fri 26-Apr-19 22:37:09

I've been in it for about 3 years. No side effects other than stomach problems if I don't take it with a small amount of starchy food - say a piece of dry toast. I do however take omeprazole anyway as I'm on daily aspirin. I get my eyes checked every couple of years and wear sunscreen as I'm also a burner - and my autoimmune condition comes with extra sun-sensitivity anyway.

Re the stomach thing, don't eat too much or anything too rich and it should ease.

Cocolapew Sat 27-Apr-19 21:02:34

I've been on it for 5 years and its been fine, it really helped my fatigue.
The stomach problems usually ease after a week or two.

Grumpbum123 Sat 27-Apr-19 21:05:14

I took this prior to moving onto anti tnf treatment.
I also took it through a pregnancy with no issues

Justonedayatatime11 Sat 27-Apr-19 21:41:26

It gave me horrendous indigestion/heartburn last night which meant I didn't sleep. Plus I woke up with a weird rash on my chest, although I'm guessing that could just be coincidence... although I'm itchy again now having taken another about an hour or so again!

FuzzyPuffling Sun 28-Apr-19 18:14:53

I'm very interested in this as it's been suggested to me (by the rheumatologist) for UCTD and I am considering it. My major symptom is fatigue, rather than joint pain, but I also have hair loss and Reynauds in my hands.

Keep posting just - I'm interested! And I hope it has positive effects in the long term.

Cocolapew Sun 28-Apr-19 19:16:20

Fuzzy I was thinking about you the other day . I was reading a post in my Lupus group, someone had just started it and was suffering pretty badly with stomach problems. She kept on with it and within a week could take it no problem.
I take it mainly for my fatigue.

Justonedayatatime11 Sun 28-Apr-19 19:32:38

Last nights didn't give me any stomach issues, so I wonder if a combination of alcohol and rich food the previous night was what caused the problems.... no issues with last nights and just taken today's so let's see how that goes....

FuzzyPuffling Sun 28-Apr-19 19:45:32

Aw bless you coco..that's really kind of you to think of me!

I have my next Rheumy appt at the beginning of June. Nothing much has changed since the last one, but I am interested to find out if the blood tests they did have turned up anything new.

just I'm glad last night was better.

Justonedayatatime11 Tue 30-Apr-19 21:20:17

Oh my god. Has anyone found that it's given you sores in your mouth?? Mine is a mess sadsad

AllFourOfThem Tue 30-Apr-19 21:27:23

Has anyone found that it's given you sores in your mouth??

No, the opposite. I get sores in my mouth and nose without it.

Cocolapew Tue 30-Apr-19 23:01:00

I only get them during a flare.

Justonedayatatime11 Tue 30-Apr-19 23:21:05

I don't think I'm ever going to get my head around this stupid thing sad

Lonecatwithkitten Wed 01-May-19 16:20:54

I take it for mixed connective tissue disease for 15 years it has controlled my symptoms really well sadly my symptoms have now progressed and I have added Fibromyalgia to my collection of conditions.
I find mouth ulcers are always associated with a flare.
I have really, really thick hair and it has made no difference at all, no grey skin I already had photosensitivity so no change there.

Justonedayatatime11 Thu 02-May-19 21:47:13

Nurse has stopped my hydroxychloroquine to see if my poor mouth clears up. Also thinks I have an infection. More blood tests. Yay. Does anyone else with MCTD feel like their life has come to an abrupt halt? I don't even know what's normal anymore sad

Lonecatwithkitten Fri 03-May-19 07:01:49

It does get better once the meds start to work.

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