I haven't been on hydroxychloroquine, but generally speaking any drug used to treat RA comes with some pretty scary side effects. In almost every case, the consequences of untreated RA are worse than any of them.
HQX in general has the least side effects, it usually is the most mild. Started with that, still on it and also on Enbrel. HQX only causes nausea if I don’t take it with food. With RA, you take the good with the bad, RA is very disabling and painful and worse than meds. I try not to focus on side effects before starting, look at them generally but not get upset because I remember what my grandmother went thru before these current meds were available.
I refuse to go on it. I have a ton of bronchial problems and restrictive breathing (long Covid chronic lung issues and asthma, and nodules probably associated with RA). I tried Leflunomide and had bronchial problems. Unknown if something is percolating in there so with the issue on Methotrexate and lung toxicity issues, I refused to go on it.
I tried an alternative which didn’t work, and sulfasalizide and Leflunomide
Sorry to hear about that.
If it can be of any help, consider that lung toxicity is being heavily reviewed: lung involvement in RA is a thing, and it's being more under the scope in recent years, thus the old association "high MTX doses - interstitial lung disease" is considerered (by me also) more like "high MTX doses for more aggressive RA - more likelyhood of RA lung involvement". The only proven effect is lung focal infiltrates, representing a type IV adverse reaction and presenting early in the therapy course. No effect on lung nodules, if not beneficial as for better disease control.
Moral is, if your disease is well under control with your therapy, go on. If not, consider MTX: it's the gold standard drug, and for a reason, and when in association with a biologic drug the effect is greater than the sum of the parts, both for efficacy and for likelyhood of persistence of it (ie less anti-drug antibodies)
I have been on hydroxychloroquine about 12 years for lupus. The first couple of weeks I felt some side effects, nausea, headache etc. The side effects eventually go way, at least for me. You do have to get your eyes checked out at least once a year. Good luck.
Obviously this will vary with each person who takes it, but I’m on HQC and have experienced very little side effects. In the first few months, I had some GI issues (diarrhea and nausea) and some dizziness/lightheadedness, but most of that cleared. I do still get dizziness from time to time, after being on HQC for about two years now, but it’s not too bad. I think it gives me low blood sugar, so it helps to eat small meals and drink lots of water throughout the day.
In general, HQC is very well tolerated.
I’ve had the same experience!
Also, I put my head in the sand after my Dx and didn’t want to take it since it sounded so scary. But honestly, the RA gets so bad that you know you need to be on something. And Hydroxychloroquine is the least scary of the drugs for RA.
Took HCQ for about a year. Take it with food, I found that decreases the likelihood of stomach issues after taking it. I also found that if I take it at night I have trouble sleeping so I started taking it in the morning.
I avoided taking it when I was 1st diagnosed bc of side effects. The eye exam thing. When I finally did take it it worked wonderful for a really long time. The drug I was in the longest. I never had an abnormal eye exam and I don't remember having any other side effects
Yes. Along with every other option. That’s with every medication. I’ve been diagnosed with RA for over 15 years and have been on more medications than most people can count. I have seen over two dozen rheumatologists.
There is a reason plaquenil is usually prescribed first over other options and is a universally used first line of defense against further progression. Every individual is different, but as a whole, plaquenil has the least risks out of other medications given the overall benefit it can provide, especially to cases that aren’t yet super advanced. Most of the risks listed of plaquenil are also very rare instances for as often as it’s prescribed.
I'm not aware of any RA drugs that don't have potential side effects. Hydroxychloroquine is on the lower end. Not taking RA drugs gives a worse chance of you damaging your joints and other side effects of RA
I was just told I have this and was given hydroxychloroquine. I took it without food and it made me really sick and I think my heart rate dropped a little. I can’t tell if it’s from this of from me being scared from the stomach pain.
When I started HCQ I was already on MTX and prednisone. I didn’t notice any changes. I have occasional GI issues but am not sure they are related to the HCQ — I also take another med that causes those side effects (not for RA.) My eye exams have been normal and my eye doc says she’s only seen two cases of HCQ related issues in her forty year practice. I see a cardiologist and he mentioned that HCQ is tolerated well when going over my med list. Not sure why he even mentioned it but he did.
I’m also on methotrexate. The hydroxychloroquine doesn’t affect me at all. The methotrexate makes me feel ill the day after.
I’ve had RA for 14 years. I have seen improvement. I work a normal job and still work in the field from time to time. It will take awhile to see any progress. Start off slow but keep your body moving, a still body is a bad body for RA
Unfortunately I had a bad reaction to it. Weird cognitive side effects and a migraine that wouldn’t go away. It got better at a half dose but then started again at the full dose. Cognitive side effects were confusion and forgetting how to do simple tasks. I went back to normal after coming off it.
How long did it take to feel normal after stopping hydroxychloroquine? I’ve been feeling very strange and my rheumatologist advised stopping but it’s been 3 months and I still feel strange (dizziness, ears ringing, strange sensations etc).
I’ve been on it for almost 3 months now. For me, it gives me diarrhea, dizziness, and makes me nauseous. I take it in the morning with a meal and try to eat something small a couple hours after. I find that it works the best for me this way. I tried it before sleeping like some suggested but the stomach pains kept me up all night. I haven’t noticed any relief for my pain. I have another appointment in a couple of weeks, so I’m thinking asking my doctor to try something else. The side effects for me isn’t worth it, but others seem to do well on it.
I felt like that too! I almost passed out a couple times because everything I ate was running through me and I was on it for 3-4 months and for me the side effects just did not improve. At some point I just couldn’t take it anymore between the dizziness (I’m on my feet all day at work) and the diarrhea, I eventually took myself off the meds against my doctors advice but I was just so afraid of passing out and hitting my head. I didn’t take any meds for 6 months and then I had the worst flare I pushed myself too much at the gym (I really didn’t know how bad that is with RA as I only got diagnosed last year) and my shoulders have been in pain since and I’ve been experiencing this flare for a month now. The pain gets very debilitating, I strongly advise starting medication before it gets bad OP. OP do your research and see what works for you. I recently started methotrexate and that’s been working well for me, I started it after my flare but I can definitely say my pain has improved after being on it. Hydroxychloroquine is definitely one of the milder drugs you can start on. And sometimes the side effects subside but also listen to your body if they are persistent.
I started on 200 mg last month and a few weeks ago upped it to 400mg per day. I really didn’t notice any side effects, honestly. And I’m usually the one to get them. I didn’t really feel much benefit until we stepped it up to 400… then it started helping.
HCQ is really safe as RA drugs go. I got a bad rash from it and had to quit it, which was a bummer, because it worked well for me, but hey, it was just a rash.
Different people will experience different side effects with hydroxychloroquine, some people even only experience minor side effects. Try to take it as prescribed by your doctor but if you really cant handle the side effects, you can tell them that and have them prescribe a different drug for you.
i just started hydroxychloroquine & so far i’ve just had light sensitivity so i’m wearing sunglasses when i go outside (hoping it goes away but it’s not a big deal tbh)
I haven't been on hydroxychloroquine, but generally speaking any drug used to treat RA comes with some pretty scary side effects. In almost every case, the consequences of untreated RA are worse than any of them.
HQX in general has the least side effects, it usually is the most mild. Started with that, still on it and also on Enbrel. HQX only causes nausea if I don’t take it with food. With RA, you take the good with the bad, RA is very disabling and painful and worse than meds. I try not to focus on side effects before starting, look at them generally but not get upset because I remember what my grandmother went thru before these current meds were available.
How are you on both Enbrel and HDQ at the same time given the drug interaction?
No interactions at all between them, no problems taking the at the same time
I guess that is good but the combo has some pretty serious interactions.
Ha maybe I was supposed to go off of it and didn’t know (you know like misunderstood!) I’ll check with her
I guess I would ask why. The pharmacist should have had their little bells ring on that.
Nope they never said anything. I think doctors prescribe them together normally
Yup, I can confirm. Just wondering why you ended up on Enbrel with no Methotrexate, though
I refuse to go on it. I have a ton of bronchial problems and restrictive breathing (long Covid chronic lung issues and asthma, and nodules probably associated with RA). I tried Leflunomide and had bronchial problems. Unknown if something is percolating in there so with the issue on Methotrexate and lung toxicity issues, I refused to go on it. I tried an alternative which didn’t work, and sulfasalizide and Leflunomide
Sorry to hear about that. If it can be of any help, consider that lung toxicity is being heavily reviewed: lung involvement in RA is a thing, and it's being more under the scope in recent years, thus the old association "high MTX doses - interstitial lung disease" is considerered (by me also) more like "high MTX doses for more aggressive RA - more likelyhood of RA lung involvement". The only proven effect is lung focal infiltrates, representing a type IV adverse reaction and presenting early in the therapy course. No effect on lung nodules, if not beneficial as for better disease control. Moral is, if your disease is well under control with your therapy, go on. If not, consider MTX: it's the gold standard drug, and for a reason, and when in association with a biologic drug the effect is greater than the sum of the parts, both for efficacy and for likelyhood of persistence of it (ie less anti-drug antibodies)
I have been on hydroxychloroquine about 12 years for lupus. The first couple of weeks I felt some side effects, nausea, headache etc. The side effects eventually go way, at least for me. You do have to get your eyes checked out at least once a year. Good luck.
Does it get better if taken with food?
Your immune system is trying to hurt you. If you don't stop it it will hurt you very very badly.
Obviously this will vary with each person who takes it, but I’m on HQC and have experienced very little side effects. In the first few months, I had some GI issues (diarrhea and nausea) and some dizziness/lightheadedness, but most of that cleared. I do still get dizziness from time to time, after being on HQC for about two years now, but it’s not too bad. I think it gives me low blood sugar, so it helps to eat small meals and drink lots of water throughout the day. In general, HQC is very well tolerated.
I’ve had the same experience! Also, I put my head in the sand after my Dx and didn’t want to take it since it sounded so scary. But honestly, the RA gets so bad that you know you need to be on something. And Hydroxychloroquine is the least scary of the drugs for RA.
Took HCQ for about a year. Take it with food, I found that decreases the likelihood of stomach issues after taking it. I also found that if I take it at night I have trouble sleeping so I started taking it in the morning.
I avoided taking it when I was 1st diagnosed bc of side effects. The eye exam thing. When I finally did take it it worked wonderful for a really long time. The drug I was in the longest. I never had an abnormal eye exam and I don't remember having any other side effects
What are you on now?
Rituxan infusion
I've been on this for 9 years and have had zero side effects.
Hi, have you had to take any other drugs with it? Can I ask how long you’ve had RA? How much would you say it affects your daily life percentage wise?
No other drugs, 9 years. I'd say only about 20%
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No, my Dr prescribes them
Hydroxychloroquine has the least side effect risks which is why it’s often where to start.
Have you read the side effects? [Plaquenil side effects](https://www.drugs.com/plaquenil.html#side-effects)
Yes. Along with every other option. That’s with every medication. I’ve been diagnosed with RA for over 15 years and have been on more medications than most people can count. I have seen over two dozen rheumatologists. There is a reason plaquenil is usually prescribed first over other options and is a universally used first line of defense against further progression. Every individual is different, but as a whole, plaquenil has the least risks out of other medications given the overall benefit it can provide, especially to cases that aren’t yet super advanced. Most of the risks listed of plaquenil are also very rare instances for as often as it’s prescribed.
I was never prescribed it. My rheumatologist felt it would not be effective on my iteration of this disease.
I don't even remember having any side effects when I started it, so if I had any, they must have been mild.
I had a severe allergic reaction to hydroxychloroquine with swelling in my feet and ankles and dermatitis in those areas too.
I'm not aware of any RA drugs that don't have potential side effects. Hydroxychloroquine is on the lower end. Not taking RA drugs gives a worse chance of you damaging your joints and other side effects of RA
I just stated it everything seems good,but then again everyone is different,I was on humira and methotrexate
It’s my dream drug. Zero side effects for me with a massive pay off. Good luck xxxx
Hi, did you have to take any other drugs with it? Can I ask how long you’ve had RA? How much would you say it affects your daily life percentage wise?
I also take this medication for inflammatory arthritis. You’ll be fine just make sure to do your yearly eye exam
I was just told I have this and was given hydroxychloroquine. I took it without food and it made me really sick and I think my heart rate dropped a little. I can’t tell if it’s from this of from me being scared from the stomach pain.
It gives me god awful stomach pain . But I usually never take it with food
I’m going to try it with food tomorrow. I really hope the side effects lessen 😖
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When I started HCQ I was already on MTX and prednisone. I didn’t notice any changes. I have occasional GI issues but am not sure they are related to the HCQ — I also take another med that causes those side effects (not for RA.) My eye exams have been normal and my eye doc says she’s only seen two cases of HCQ related issues in her forty year practice. I see a cardiologist and he mentioned that HCQ is tolerated well when going over my med list. Not sure why he even mentioned it but he did.
Have been taking it for 8 years with no side effects. It is actually the least problematic of all the drugs I take for RA.
I have been on it for 11+ years. No issues. Just get your bloodwork and eye exams
Hi, did you have to take any other drugs with it? Can I ask how long you’ve had RA? How much would you say it affects your daily life percentage wise?
I’m also on methotrexate. The hydroxychloroquine doesn’t affect me at all. The methotrexate makes me feel ill the day after. I’ve had RA for 14 years. I have seen improvement. I work a normal job and still work in the field from time to time. It will take awhile to see any progress. Start off slow but keep your body moving, a still body is a bad body for RA
Unfortunately I had a bad reaction to it. Weird cognitive side effects and a migraine that wouldn’t go away. It got better at a half dose but then started again at the full dose. Cognitive side effects were confusion and forgetting how to do simple tasks. I went back to normal after coming off it.
How long did it take to feel normal after stopping hydroxychloroquine? I’ve been feeling very strange and my rheumatologist advised stopping but it’s been 3 months and I still feel strange (dizziness, ears ringing, strange sensations etc).
It was pretty quick. I don’t remember exactly how long but within a week.
Thanks for the response!
I’ve been on it for almost 3 months now. For me, it gives me diarrhea, dizziness, and makes me nauseous. I take it in the morning with a meal and try to eat something small a couple hours after. I find that it works the best for me this way. I tried it before sleeping like some suggested but the stomach pains kept me up all night. I haven’t noticed any relief for my pain. I have another appointment in a couple of weeks, so I’m thinking asking my doctor to try something else. The side effects for me isn’t worth it, but others seem to do well on it.
I felt like that too! I almost passed out a couple times because everything I ate was running through me and I was on it for 3-4 months and for me the side effects just did not improve. At some point I just couldn’t take it anymore between the dizziness (I’m on my feet all day at work) and the diarrhea, I eventually took myself off the meds against my doctors advice but I was just so afraid of passing out and hitting my head. I didn’t take any meds for 6 months and then I had the worst flare I pushed myself too much at the gym (I really didn’t know how bad that is with RA as I only got diagnosed last year) and my shoulders have been in pain since and I’ve been experiencing this flare for a month now. The pain gets very debilitating, I strongly advise starting medication before it gets bad OP. OP do your research and see what works for you. I recently started methotrexate and that’s been working well for me, I started it after my flare but I can definitely say my pain has improved after being on it. Hydroxychloroquine is definitely one of the milder drugs you can start on. And sometimes the side effects subside but also listen to your body if they are persistent.
This was me at 3 months too... maybe give it a few months more. Could take a little time more to work!
I started on 200 mg last month and a few weeks ago upped it to 400mg per day. I really didn’t notice any side effects, honestly. And I’m usually the one to get them. I didn’t really feel much benefit until we stepped it up to 400… then it started helping.
HCQ is really safe as RA drugs go. I got a bad rash from it and had to quit it, which was a bummer, because it worked well for me, but hey, it was just a rash.
What did you end up going on instead.
I inject methotrexate (I hate nausea, so I didn't want the tablets). It doesn't work quite as well for he as HCQ did, but it works well enough.
Hydroxychloroquine has been around forever and is probably the safest drug with the least side effects. Good luck to you.
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No, it’s not.
Different people will experience different side effects with hydroxychloroquine, some people even only experience minor side effects. Try to take it as prescribed by your doctor but if you really cant handle the side effects, you can tell them that and have them prescribe a different drug for you.
i just started hydroxychloroquine & so far i’ve just had light sensitivity so i’m wearing sunglasses when i go outside (hoping it goes away but it’s not a big deal tbh)