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Hydroxychloroquine

I read on here looking at the search about this drug, it can give you bad skin problems and psychotic reactions? stomach problems, hair loss ;its put me right off trying it, I felt more confident before reading that because someone on here went into remission

so what is your take on it guys please?

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Ive been on it plus other meds for about a year and its not caused me any problems so far. Hope that helps.

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is it working ruth?

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Well im a lot better than I was. Its hard to say what exactly is working, im on methx, hydroxy, sulph, steroids, paracetamol and dyhdrocodeine as well as the usual stomach protection and folic acid. I expect its a combination of all the meds. Rheumy says im in my remission as bloods stable but not quite within normal range but not too far off. I still get symptoms and tiredness, but I can function with limitations. Any side affects I had subsided within a few months and nothing was awfull.

I really hope that helps.

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I've been on it 8 years with no problems, and 5 of those in remission with the other drugs too.

Look at the side effects of aspirin (bleeding on the brain, swelling of the skin that resembles severe burns, difficulty breathing, stomach ulcers etc) and you'd never take that again either! All drugs and herbal supplements can have side effects so it's a personal choice about whether the benefits are worth the risks.

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can you eat anything you want with no pain helixhelix?

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Yup! I did the whole diet thing soon after I was diagnosed and it did diddlysquat for the RA symptoms. However it did make me feel better and helped me loose weight so i still eat healthily - ie very little processed or fatty food, lots of fish and veg. But if I want to eat 6 cream donuts I do, and it makes no difference. Sorry!

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as you know I been very strike on a diet, Saturday I broke it, had cheese sandwhich and some chocs and rich tea bisc

I am ill

I sick of my diet, on my diet I still have hard mornings of stiffness, sore for a couple of hours and like my elbows been going and so on but off the diet I get all that plus feeling sh-t and the sharp pains in toes and places

so I know off the diet makes me worse but I have had enough of it all and feel I need more help than just diet and trying to manage it myself

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What sort of diet have you been on? what have you been eating? Has it made you any better at all?

If it hasn't why not talk to a dietician....discuss the drugs you are taking & see what advice you get.

Why deprive yourself of food you like if you still feel,rotten?

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Been on it for 6yrs without any problems. It’s the only med I take. Hope this helps

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I’ve been in it for two years x helps a lot 👍

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it all helps loads your all wonderful thank you x

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what stomach protector do you all take? also thinking of asking for a small dose of steroids to have to carry me through till it works , whats your take on that thank you

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I take 20mg omeprazole daily (morning), another 20mg (evening) when I have an etoricoxib (NSAID).

I've been on low dose steroids over 5 years. Maybe your Rheumy will prescribed them short term to give you some support whilst waiting for HCQ to reach it's full potential, you'll have to discuss it with him if they're not offered.

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My take on it is you've to remember that it's a tiny percentage of people who have RD that are members here & those that are on a specific med (HCQ in this instance) are generally having problems which highlight any number of side effects. There's no guarantee you'll have any so keeping things in perspective is important. It's only natural to have a wobble before we start a new med but unless you're super sensitive to meds it is one of the better ones for side effects.

The first DMARD I tried was HCQ. I did well on it for around a year when it stopped working, though I did have light sensitivity. Although I had to stop wearing lenses & live in sunglasses it didn't affect me enough in relation to the control it gave me to stop it. I did also have some hair loss initially but it soon settled.

So, do ask for experiences, not just on HCQ but any other med, but keep in mind that you may receive negative ones as well as positive, it's the nature of a forum intended to bring people with a common disease together & share experiences. It's also unfortunately the nature of meds, they don't necessarily agree with everyone. Of that one person who's achieved clinical remission on HCQ here there will also be thousands out there who have too but don't need the support being here brings if that makes sense?

It can cause tum problems early on so if you're coprescribed a PPI, or on NSAIDs & are already prescribed one do remember not to take it within 4 hours of HCQ. There is also a very rare risk of retinal toxicity (retinopathy) so you should be advised to have an eye test prior to starting it & annually thereafter unless, otherwise advised to have them more regularly as I was, informing your Optometrist you're taking HCQ. It's generally an incremental issue, usually when you've been on the highest dose (400mg daily) &/or been taking it for 5 years or more.

I hope you respond well to it but bear in mind it won't work quickly, like other DMARDs it needs to build up to become effective but you should notice subtle improvements within weeks.

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I've taken HCQ for 10 years, no problems at all.

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I had terrible terrible hair loss on this drug. I had been in remission from my lupus for years and years so I stopped taking it. My hair is now thicker and fuller than ever!!!! Thrilled!!!!!

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Sadly I have terrible skin problems on HCQ, tho was told by Rheumy, don’t think it’s caused by that never heard of anyone getting rashes etc on it, 🙄🤔 basically dismisses me, but then she is dismissive of enayhting I try to talk about, need a new Rheumy, it works I think to some effect but not enough for me 🙃

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I've had bad skin problems for the last 2+ years, which my rheumy is well aware of as was an immunologst that I saw 6 months ago. Until very recently I'd not been aware of a possible link between the two so have never asked if hydroxy could be the cause, but think at least one of them would have mentioned it f they thought it the case. Neither has two dermatologists that I've seen. Anyway, I've recently stopped taking hydroxy because of stomach issues so it will be interesting to see how my skin problem fares. It's been 8 weeks since I've stopped and a recent small improvement seems to have taken place, which is not unusual as the condition regularly fluctuates, so time will tell I suppose. To be honest, I don't think stopping hydroxy is going to help. That said, I've recently spoke with two other members who told me that their skin problems cleared after stopping hydroxy. I believe that one member's rheumie actually stopped her hydroxy because of her skin problem.

Good luck

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that's not good, my skin is very sensitive, well everything sensitive, stomach, skin and my hair is very poor ,thin and fine

so whats my chances on this drug?it doesn't look good does it

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Well it does seem to cause skin problems in a small minority of people, but as mentioned I'm having doubts that hydroxy is the cause of mine. Guess there's no telling until you start taking it and that's a decision that only you can make. Before doing so you should bear in mind that hydroxy is one of the milder meds that has much less effect on the immune system than the vast majority of other RA meds.

As for my stomach issues, well they do seem to have eased a bit since coming off hydroxy, but have not stopped that's for sure! :-(

Good luck with whatever you decide

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I have just started taking it, I was advised to have my eyes tested, so that they can keep monitoring whether it has an effect on my eyesight ( I wear reading glasses anyway) but the optician told me that it was no worse than Prednisolone, so that was confusing?! So far no problems with either, also on Sulfazalazine, so far so good about 7 weeks in, but still have achy wrists, knees and randomly near right little toe. Haven't noticed any of the reactions you mentioned.

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I have a few worries, my body is very sensitive, skin, tummy, my eyes aren't good I have to wear reading glasses I am into doing art so it worries me my eyes

tried the Sulfazaine, one wasn't very well on that had to come off it.

I am not one who likes to take tablets, I have to be really really bad to even take a pain killer.

so its hard but if it makes me able to get on with life I will take them just scared a bit

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As with most of these meds there are possible side effects. Emphasis on possible but it’s not a must that you will develop any... I get my eyes sight and hearing checked every 6 months or so. The eye doc did tell me that hydro chloroquine could cause drying out of the eyes and that could cause damage to the retina and lenses. He prescribed eye drops as a preventative measure , but so far all is good. Good luck to you. And feel safe knowing your doctor prescribed these meds after weighing all the pros and cons, and you have to be treated there is no way around that. Just make sure to get checked out regularly and all will be fine!

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Lol 😂 that would explain a lot 🤣🤣🤣but no I’ve been on it for almost 2 years, and apart from some hair loss ( which could also happen from some of the other meds I’m on) I’ve had no problems

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whats the LOL Izabella? tee hee, is it my not being able to see and spelling?

that's not my eyes that's my spelling :O)))))) that's a smiley face,I don't know how to get those yellow smiley face :O)

I can't spell for the life of me :O)))

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hair loss ummmmmmmmmmmmmmmmmmmm

that's not one I like but I know they all have that, why oh why can't there be a kind drug for woman, I am sure I am not the only woman who hasn't taken them because of that .

my hair is sh-t anyway,

my hubby says the drugs are hard because of the job they have to do, I get that but don't like it.

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I have awful unbearable itch since starting it,iv stopped but joints very sore,i felt i was cracking up when itch started.

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oh don't tell me that jeffscott69 :O)

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I got none of those and have been on it for a year. Reading the side effects is very dangerous. It would put off anyone taking anything!!!

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you can say that again jules 13,I did last night on that link on drugs last night and it did put me off it, but today I would take anything, can't go on like this, it took me ages to get out of bed today, I had to mango myself out first I am still sore and stiff, not as bad as first thing but its hard on these days, I have had such a good week until today, thought it had gone

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You must try and keep positive. It takes a while to sort out the right mix of drugs but you will get there. Xx

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Everyone’s story is different. I can only tell mine. I’m now 18 months in remission and have dropped my dose of hydroxychloroquine to 200mg per day. I have slightly stiff hands when I wake up but no other symptoms at all. No swelling, no pain. I can do everything I did before I was diagnosed with RA. I have no side effects from the hydroxychloroquine but have my eyes checked annually. long may it continue.

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are you normal sensitive to drugs staycalmandcarryon

I sometimes feel when I well I can handle it with no drugs, but days like this I feel I will take anything

as feel a 100 years old today

thank you for giving me confidence

ps how was your hair? and moods on it?

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My hair and moods are both good.

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I’m the same. My hydroxy has now been halved so I’m only on 200g a day too. Exactly as you said “stay calm...”, I wake up with slightly stiff achy hands but otherwise feel pretty good. So you will get there. But do try and do good things for yourself too. Eating well is essential and meditation really has changed my life so give that a go. Insight timer is a great app.

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I’ve been on hydroxy for 5 months no side effects as yet and it has eased my pains SO MUCH. Had eyes tested before and Will do annually x

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Iv had awful itch had to stop hydroxychloroquine,now im really sore,swollen joints,tiredness hellish,dont know what to do.x

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In the early stages of taking HCQ I got the itch. It lasted around seven days, I sat it out (which was tough) and the itch disappeared. In two years it has never come back and my RA is in long term remission.

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oh wow that's great news to me and for you, congrats, how was your hair on it? that's the biggest thing for me, hair :O)

and my eyes of course I am an artist, well was :O)

you know if you take allergy tabs do you think that would sort itch out? my skin is so sensitive

I am waiting for eye test before going on it

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well rheumy just rang me at home to say they have written to the GP for me to go on this after eye test

I said my concerns re hair, but it went on deaf ears really, she said it very very rare to lose your hair on this drug

but skin rashes and tummy issues yes but they wont know until I try it,

I tried to say but I already have a very sensitive tummy anyway, but again she repeated we wont know until you try it

ummmmmmmmmmmmmmmmm

so I am in two minds in my feelings, hoping it doesn't happen to me any of it, and hope it works

but I still have a little time to tweek this blinking condition out of my body myself :O) before I go on it

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You've probably heard of the placebo effect? Where patients feel better because they think they have been given something that will treat their symptoms, even tho' the pill they are given has nothing in it.

Anyway, there's also the nocebo affect. Where patients who fret and believe they will get side effects are more likely to get them, and patients who are positive don't believe they will get side effects are much less likely to get them. Hydroxy is the mildest of the drugs, and has been used nearly the longest. So look on it as a potential friend that's come to help you.

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yes I will helixhelix, once my eyes have been given the okay I am going to give it my best shot!!!

when I see people on here struggling to get seen and even treatment, I should be grateful that I have had none of that.

I might not like being told that's whats wrong with me but hey this time next year or even sooner might go into remission on this drug, then I can get back to my life as if this never happened and have the odd cream cakes too :O)

Thanks Helixheix!!

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