Hydroxychloroquin

[glenb]

Anyone had any side effects from hydroxychloroquine? My rheumy had been trying to get me on it for 18 months. Took it for 8 days and side effects were awful. Chest pain, couldn’t catch my breath, anxiety and felt like I had an onset of dementia. 2 months later still suffering. Can’t sleep and really struggling. Thanks

[Hidden]

That’s interesting glenb because I didn’t like it either yet lots says it’s one of milder ones: kept me awake too plus nausea all week. Tbh didn’t like taking daily drug on top of MTX at time as well & eye thing bothered me even tho’ rare 🙂

[glenb in reply to Hidden]

There are lots of links online to the symptoms I have had. My rheumy said another one of her patients had the same. So wish I never took them. Was feeling good before but doctors talked me into it.

[Hidden in reply to glenb]

Sorry to hear that, have you stopped now & still getting symptoms? Thinking about it had anxiety more too but put it down to having RD itself? I meant lots on here felt it was a milder drug, not doubting your symptoms 😉 hope they fade soon/you get something better. I was on it for 3 months, emailed advice line, got early appt and been off it for 6 months now and fine (well apart from RD that is 👍). X

[Hessie5]

Hi Glen it's funny how we all react differently. I found when I took it along with mtx it was pretty effective for me. Do let your rheumy know straight away though. Wishing you a swift recovery too!

[glenb in reply to Hessie5]

I did yeh. It’s just been a long time. Thanks

[nomoreheels]

I think you really need to speak to your team about your symptoms. Some people have troubles with one particular brand of HCQ, Quinoric, but they tend to be gastro related. Most seem to do better on Zentiva's hydroxychloroquine sulphate. This has the closest content & filler-wise to Plaquinel which unfortunately is no longer produced for the UK market.

I took it for just over a year, though as I was in Spain the brand was Dolquine so unable to tell which brand it had familiarities with. I had a little hair loss in the beginning which settled, light sensitivity too but none of the symptoms you describe.

[sylvi]

I have no reactions to the drugs.xxxx

[glenb in reply to sylvi]

I know it’s weird. I have taken MTX for over ten years with very little side effects but this one has really reacted badly with me. Early on when I was first diagnosed I tried lots of drugs which I reacted to and MTX was a relief to find.

[Uga35570]

Hi glenb I have 10mg mxt injections but as I live a lot of the time abroad my rheumy suggested hydroxy as a top up initially 3 times a week then after 2 weeks take daily. Felt lousy on it every day so back to 3 times. Have yet to have another blood test so I will see! It does seem to be a battle between ra and rheumy s who just want to stuff you with more drugs! Maybe try hydroxy Monday Wednesday Friday as I do worth a try. Good luck.

[Gnarli]

Some meds will suit some but not others I suppose. Hydroxychloroquine didn't suit me at all although for others it may have been "the one". I had the most awful heartburn with it, I don't remember which brand, so much so I only lasted five days on it. I hope you feel better soon

J

[Hidden in reply to Gnarli]

I had to stop it after 4 months because I itched like crazy, and the heartburn was awful Plus I had hair loss - not major, but it did happen. You’re the first person I’ve read who mentioned the heartburn

[wishbone in reply to Hidden]

Here's the second. I stopped taking hydroxy 3 months ago because of acid reflux. It hasn't cleared up completely, but I have it a lot less often and not as severe as when I was taking hydroxy. It's also meant a reduction in my intake of omeprazole.

[Sallyann54]

I have taken it for 2 years and no side effects.

[Benbecula]

Hi - I have had two separate attempts at taking hydroxychloroquine. On the first occasion it gave me diarrhoea; after a break I agreed to give it another try. This time I had an itchy scabby rash on my scalp and inside my nose and also conjunctivitis. The rash took absolutely ages to go after I stopped the drug.

Rheumatologist suggested it again last week. I explained the problems I had had and said I had heard that sometimes the brand made a difference. His response was that there was no other brand (than Quinoric) ....?

[Hidden in reply to Benbecula]

Yep same here, tried gp and rheum for zentiva, only quinoric in my area too

[wishbone in reply to Benbecula]

That's interesting. I have a scabby scalp, along with other skin issues. Difficult to be sure, but it may well have started around the same time as I started taking hydroxy a couple of years back. I stopped taking hydroxy 3 months ago because of acid reflux, so it will be interesting to see if my skin also improves. I really hope so as it can be quite painful and itch like crazy when the pustules and spots eventually begin to heal. How long did your scalp take to clear after stopping hydroxy?

[Benbecula in reply to wishbone]

Goodness, it sounds as if you have been struggling for ages with the scabby rash. My recollection is that mine would have cleared about three months after discontinuing Quinoric. I remember that I had to postpone having my hair permed for about that length of time. I did use a medicated shampoo, Alphosyl, for such problems, so that may have helped too.

[wishbone in reply to Benbecula]

Thanks for replying,

I've just found out that it's actually nearer 6 weeks that I've been off hydroxy, so still time for it to clear if you're anything to go by. I have rosacea, which can be pretty bad and apparently affects not only the face but other parts of the body too, including the scalp. Guess I'm clutching at straws hoping it's the hydroxy affecting my scalp but you never know.

Glad that your scabby scalp has cleared. Regarding having a hairdo...my long time barber (I'm a male) has just packed up his business so I've had to explain to my new barber, who's a female hairdresser actually, that my skin condition is not contageous etc, and needs to be handled with care as it's not much fun if someones a bit heavy handed with a comb. All a bit embarrassing really even though she was ok with it.

Take care

[Benbecula]

Has psoriasis been considered? I have read medical articles suggesting that hydroxy can induce or exacerbate psoriasis and I think it may be mentioned on the patient leaflet, though I don’t have that any more. I did wonder when I had the itchy scalp if that is what it was. I believe I also read that hydroxy takes about 90 days to get out of your system. There may be others here who know a bit more about it.

I sympathise; at least women generally have more opportunities to camouflage skin problems.

[wishbone in reply to Benbecula]

Apologies for a lengthy post, but hope you'll find some of it interesting.

I haven't seen a dermatologist for over a year...they discharged me because I would not take long term antibiotics. Other than prescribing Ivermectin cream, which is helping a bit..I think!? They said there's nothing more they can do for me, which is a good enough reason I suppose. I had two dermatology appointments during the first year. Don't know if it's the same as psoriasis, but along with the rosacea, psoriatic dermatitis was also mentioned, plus foliculitis. I couldn't help but have the feeling at the time that they were not sure exactly what skin condition/s I have...apparently some skin conditions can be difficult to diagnose. I saw an immunologist around 6 months back. It was about something other than my skin, but as my face was flaring at the time the immunologist asked about it and convinced me to try a low dose antibiotic for 3 months. After a week or so the antibiotics started to have an effect, and although my face never cleared up entirely like the rest of my body more or less did, there was a significant improvement. Alas, much as I suspected would happen, the antibiotic started to lose its effect a week or so before the course ended. At the minute my scalp and body is worse than it's ever been, with my face much the same as it was before I went on antibiotics. Even if I was prescribed a new effective antibiotic the same thing would probably happen sooner or later, plus there's always the risk of side effects. So for just a few weeks relief I don't think I'll be going down the antibiotic road again.

edit...just dug up a hydroxy patient leaflet which states... "skin changes including the formation of numerous small pustules or itchy pink-red blotches or generalised scaling of the skin." Think I can more or less discount the blotches and scaling, but the numerous small pustules seem to fit the bill. Mind I wouldn't describe the nasty pustule that's currently on my breastbone as small, but most are. These things can take ages to heal and often leave scars when they do.

[Benbecula]

I’m sorry you have had such a difficult time. I hope that you begin to see an improvement from stopping the hydroxy; good luck.

[Bee-woman]

I had no side effects from taking it. (Took 200mg x2 dly) . It did sort out my symptoms completely over about a year. Took about 3 months to be effective. I do hope you get relief soon