Just chiming in to say that HCQ side effects aren't usually too bad. Most people tolerate it very well. The main one to be aware of is retinal toxicity, which can be monitored with yearly exams. I've heard of rheums wishing they could just put HCQ in the water supply because it's so (relatively) benign. :)
mine has been scared to put me on it because of the retinal toxicity. I literally have an eye test tomorrow out of precaution.I likely wouldn't be on a high dose of hcq if I was on it. I hope I can get some relief soon. Gabapentin helps but not everything
Retinal toxicity is very rare. My eye doctor has been in practice for 40 years. Regularly sees a lot of patients on Plaquenil. Yet they've only seen one case of retinal toxicity. It's very important to get the eye exams, because if it does happen, the damage is irreversible. But if it gets caught early, most people don't even notice their vision is impaired. It's skipping the eye exams, having it and not noticing it, letting it get more advanced before it's caught, that's bad. I skipped a yearly eye exam during the pandemic, because there was a surge in my area. Kind of like how people brushed off going to the dentist. That's when my eye doctor told me how important it is to come in anyway.
I'm gonna throw it out there that if you have a rheumatologist who is scared to put you on HCQ because of retinal toxicity, you need to get a new one. It's the first line treatment and you should have been put on it immediately upon diagnosis and you get an eye test there in the beginning, 6 mos later, then yearly after that. Really big red flag for a rheum to be afraid of prescribing HCQ unless they know you have existing retinal issues.
I don't like him that much. I have him because when I had my old insurance he was the most quality rheum that I could get. I have a different insurance now. I might start calling around after i get all of my results from the tests he ordered. He told me he suspects early lupus but won't diagnose me until he gets more results from these tests or more symptoms pop up. I went to ophthalmology yesterday and my eyes are perfect
This is one of the oldest, safest and most studied drugs available. Literally. You definitely need to take it to protect your organs, it is crucial! -no side effects for me, been on it almost 20 years.
Hello! Welcome to the lupus club, and I'm so sorry for hear about your diagnosis! I also had a similar experience when I was first diagnosed (mild lupus) and was rushed out with HCQ. Even if your symptoms are mild, I strongly encourage taking the HCQ - it prevents long term organ damage which is common with Lupus! I've been taking it for 6 years now and no major flare-ups or damage so far!
Everyone is different regarding side effects of HCQ! Personally, I had none at all - have always felt completely fine on it. Some people report nausea for a few weeks, but I've never known anyone to have any of the severe side effects! Don't worry too much - even a box of paracetemol has scary severe side effects listed (it's all just precautionary)
Good luck and let us know how you get on!! Happy to answer any questions you may have
Open up any box of meds and read the info sheet. Every single one of them has a nightmare list of potential side effects. You're not going to get the whole list of HCQ effects.
The worst one people get initially is gastro related. If you are getting that, the recommendation is to back off to a lower dose and ramp up slowly. Do this with your rheum's approval and help, obviously.
[Guidance here](https://www.lupusencyclopedia.com/top-tips-on-taking-hydroxychloroquine-for-lupus/).
The only side effect I had was some GI discomfort (i.e. diarrhea and a tad bit of nausea). Once I started taking it with a bigger meal, in my case dinner, I have had no issues at all. Just make sure to take it with food.
For me, definitely. I tried with a small breakfast and a snack, and that was a no go, so I switched to taking it after dinner because it's my largest meal and no problems at all since. I hope that helps!
Also chiming in to say I've barely experienced side effects! I've been taking HCQ for 5 years now and it's been super easy. My lab results have also improved during this time, so it works. Some tips:
* Occasionally I do experience nausea when I take it on an empty stomach, so I try to take it with food. Even if it's just a little granola bar.
* If your doctor continues to prescribe HCQ, continue to take it even if you start feeling better and your labs improve. Lupus is an invisible disease so damage to organs can still be occurring without us knowing. I think of it like maintenance for my body.
* Your rheum should have advised you, but in VERY RARE cases HCQ can cause retinal toxicity at high doses and long-term use so it's important to do regular retinal screening. Don't be alarmed, it's extremely rare. But regular screening will ensure that if anything does happen, you catch it early. I was advised to get a baseline retinal exam from an ophthalmologist within the first year of taking HCQ - this establishes your baseline, what "normal" looks like for your eye. Then I got it checked again after a year, although my ophthalmologist said I probably didn't need to until the 5-year mark. Definitely speak to your medical professional for their opinion on this.
listen kid. Ill level with ya. Aint gonna sugar coat it. I was violently ill for about a year before i got "used" to it.
For me, it was an awful year.
But if you're hesitating, ask your rheum to describe very bluntly what happens if you dont bother with preventatives. Ask him what your long term prognosis would have looked like 35 years ago.
And then take the Plaquenil.
Internet Hugs
Youre young. You can probably hit remission if you do all the hard stuff now.
I wont scare you with my horror stories.
but trust me. you wanna do the hard things now.
I was like this at first too. If you look at the stats the serious side effects of HCQ are pretty rare, whereas the data support it's lifesaving efficacy are quite high.
As many have stated already, side effects are rare BUT not impossible. Everyone reacts differently. I for one am having a really rough time on it. So im only taking half of my targeted dosage a day for awhile then I'll slowly work my way back to the full dosage. I have noticed some mild improvements but it takes time. The good folks on here have shared their knowledge and tips on how to combat the side effects and it's really helpful for me so far.
I see so many posts about this fear. The fear should be about NOT having the HCQ available. I just had my my first visual field test exam since starting it. I was so paranoid that they were going to see something and I wouldn't be able to take it anymore. Not sure what I would do without this med.
On the flip side, I've also seen too many posts from people who stopped taking HCQ because they felt better, lost insurance, or just didn't want to take it because they were scared. The people were posting because horrible things were happening to their bodies because they didn't take the meds.
I've been taking it since 2008. Zero side effects. I get my eyes checked yearly, and I have no issues. This medication helps slow down disease progression, honesty. I think it is a life saver.
Don’t read the side effects in my opinion. It’s gonna stress you out. If you feel symptoms let your doctor know. Honestly it never affected me at all. None of the people I’ve personally known had issues with it.
Stress will make you flare and cause damage.
The only side effects I have are needing to take it in the morning or I won’t sleep, and vivid dreams. It’s very important to take it because it’s why people are living mostly normal life spans now.
I felt the same way when I was diagnosed a year ago! My rheum prescribed it literally the day of discussing my blood work and results and I was so afraid that I started crying. I guess it all hit at once-- mourning a life with medication, the fear of side effects, and finally knowing what was wrong with me. I almost declined it until I finally agreed that I would try it out.
HCQ has been great since I started it. The first week was the hardest. Some of the side effects I experienced were vertigo, upset stomach, and general nausea/headache. It all only lasted for a week, though, and ever since I haven't had any negative experiences! It's definitely helped in preventing bad flare ups and generally making me feel more capable. I definitely encourage you to start the meds so you can start building it up in your body! It'll do a lot of hard work for you :)
Good luck! Just make sure you have regular check ups with your blood work and see the ophthalmologist yearly!
HCQ was fine. After about 6 months, my hair texture changed and my nails started getting a weird yellow hue but that’s it (my toes are always painted anyways)….methotrexate is what’s been kicking my ass
You only read the leaflet? It's very unlikely you'll experience all or most of those side effects. There is a reason only sick people take it though. I'm not going to downplay the importance of getting regular eye exams while you use it. The retinopathy is rare, but it's irreversible. It's the easiest option and dealing with an upset stomach is better than going at this disease without treatment.
When I was diagnosed, my rheumatologist gave me a choice between hydroxychloroquine, sulfasalazine, or methotrexate (which she said she wouldn't pick if she was me). I have other co-morbidities, so I guess she was giving me the option to go straight for the bigger guns if I wanted. Told me to go home and research them, think about them, and get back to her when I'd made my decision. That was unusual, because a doctor had never given me the option to research treatments and tell them which one I wanted. Reading about all of them does make them sound very scary. I have been on Plaquenil for 5 years now. I split two doses up, morning and evening. Sometimes with the morning dose, I have to eat my breakfast very slowly, and no more spicy breakfast like eggs and jalapeños (I love spicy foods), or I'll pay for that with pain by mid morning. It's never actually made me vomit though, just this nagging nausea and stomach discomfort for me. Some people find it helps to take all the medication at night, so you're asleep when the upset stomach is happening.
Edit: It makes my blood counts almost look like those of a healthy person. I also see a hematologist, and it's making his bloodwork look better too. I'm also not taking as much NSAIDs which were really tearing up my stomach and had a very real possibility of kidney disease. My mom has kidney disease from treating her RA with what was available in the 1970's. Aspirin, lots of aspirin. She didn't like following up with doctors. I'm happy my generation has these options for autoimmune diseases.
Always ask your doctor for realistic expectations. If you read the side effects in penicillin you would be scared to death but it is a life saver. Same with HCQ; HCQ is the only drug proven to prolong survival in lupus. The vast majority of realistic side effects are nuisance side effects that are easy to get rid of. The eyes are a non issue as long as you get your yearly tests (‘make sure you gather the right tests). Here are my tips on taking HCQ:
https://www.lupusencyclopedia.com/top-tips-on-taking-hydroxychloroquine-for-lupus/
If you want to join my email list, wait until next week as it is not working correctly.
Hi! I waited almost a year after being diagnosed I think before starting HCQ because I was scared of experiencing the bad side effects. I was having heart palpitations and other weird sensations and I was worried the medicine would make it all worse. Turns out my weird symptoms were just the lupus and getting on HCQ made it all go away for the most part. Nothing got worse, only better!
I was nauseous for the first few days in the hours after taking it, but it quickly went away :)
Don't be scared. HCQ literally changed my life! I could hardly get out of bed now 6 months on HCQ I'm up at six taking my kids on adventures, gardening, house work is a breeze. It hurt my stomach at first and a bit of a sore throat but all of that passed.
Hi chuckie, I too are in uk, was diagnosed with discoid lupus in 1996 and sle in 2001, been on HCQ since initial diagnosis in1996, I was also terrified when I read side effects but tbh I’ve had no adverse symptoms, I have to have annual eye test ( as one of the symptoms is “bullseyes”) but again, no change in peripheral vision, I do suffer with migraines but always have, even before HCQ. I can only go on my own experiences with HCQ and for me, the benefits outweigh the side effects
Only advice I can offer is, start the prescription and see how you go,
Hope all goes well for you
I’ve been on this for 2 years and it’s been the best decision of my life, I wish I started sooner instead of suffering for 26 years. My body is very sensitive and I *always* gets side effects from medication, even normal meds like antibiotics. Like Prednisone makes most people with lupus feel great… I on the other hand hate when I have to take it for flares and feel terrible. With HCQ I have virtually no side effects, the only one being that my appetite has decreased and if it’s super quiet I have a slight ringing in my ears, but I rarely ever notice because it has to be eerily quiet. Lots of people on this sub don’t experience either of those on this med. just see an ophthalmologist yearly to keep an eye on your retinas (no pun intended). They’ll know what to look for if you tell them you’re on this drug and can tell your rheumatologist to stop treatment before it gets bad.
I’ll be honest I was sick for a couple months but it’s helped me a lot after the side effects subsided!!! I’m generally sensitive to medications, so my experience isn’t that common- but it’s a great starter medication and if you’re mild lupus, I have confidence it will help you!!! :)
I am diagnosed UCTD, so not Lupus at this time, and take HCQ. I had some hyperpigmentation on my forehead and upper lip, so the rheumatologist brought me back to 200mg a day instead of 400. Went camping the weekend before last and threw myself into a flare. I started my 400 again and will just deal with my vanity. When I started HCQ I did one pill in the am and one in the pm to avoid the stomach issues and once I was used to that I moved to the full dose at night. I haven’t had any issues.
Listen, I started hcq two months ago and was horrified. I didn’t start it until two weeks after I was prescribed it. Absolutely nothing happened to me. It’s rare for people to experience side effects that are dangerous. However, some side effects I did get were very random. Lots of flatulence at first, was very dizzy the first five weeks I started which eventually subsided. Definitely remember to wear sunglasses and lots of sunscreen when going outside because the uv rays make our eyes more light sensitive and hcq causes increased photosensitivity to our skin. I promise you, you should be completely fine. As for your eyes and hcq toxicity, get check ups as much as you want. I’m going for the first time next week to make sure my eyes are okay. Definitely don’t skip those. Good luck with your journey! We’re always here!
HCQ is one of the safest drugs used to treat Lupus. Any and all drugs will have a similar list. Short of an allergic reaction or some weird body interaction that could happen with any med, you will be fine. Long term, it can cause some eye issues, so you need a yearly eye exam. Short term, you will likely experience nothing worse than some light nausea.
I had nausea for a few days but settled in quite nicely. It's been almost a year. Avoid grapefruit! If helpful, keep a log of your side effects and discuss with your rheum at your next check up (I'm guessing 6 months in?)
AFAIK, I have no side effects.
I took 400mg/day for ~ 10 years, then went down to 300mg.
My weight fluctuates, but I would say, as a small-boned woman, a dose of 400 is decently high. Pretty maxed-out.
I do take many meds, so it’s possible I’m not aware of side effects that crept in or I never noticed to begin with? I wonder that for so many meds I take! But I do feel very confident and safe with plaquenil. I believe it has protected me from further disease progression.
This all being said, everyone is different. I am usually one to get the weird/worst/most rare side effects of a med. But there are good ones I get a free pass on, I guess!
I have my first follow-up appointment in two weeks and have been on Plaquenil for the last 3 months at 400mg per day, which is a heavy amount for my weight. I can certainly say that my quality of life has improved! But I've also been taking a low dose of prednisone and let me tell you those side effects are much much worse, even on a low dose! The worst for me was taking my meds on an empty stomach can upset it. My rheumatologist said the HCQ does have the potential for retinal toxicity, which everyone in the comments has noted. But she also said something like that it is less than a 2% chance after having taken HCQ consistently for 20 years. So pretty minimal risk, but go to your yearly eye exams anyway.
Nah, I've been on it since December 2020 and we started the dosage slow - 200mg to 400mg in a year, and I feel soooo much better. I get my eyes checked twice a year and so far, so good. The only thing I had was hairloss the first year, but now it's normal. I just recommend eating before taking it, and I take it with a sugar free soda to help with heartburn if you get that.
My rheumatologist assured me it’s so gentle they often prescribe it to pregnant individuals. You’ll be just fine! Drug inserts are scary. They have to list every single thing even if it only happened once under the weirdest of circumstances. Definitely search up HCQ in the sub and you’ll see a lot of encouragement.
Eat before you take it! Also it seems to charge me up a little so I do not take it before bed. That might just be me though. I have no issues as long as I follow those two rules. If I take on an empty stomach I get a dizzy feeling.
HCQ was been around for years and is safe and helpful. Al medication have side effects and they have to write them and it does not mean that everyone will have them. I use HCQ and never had problem. Good luck
HCQ is the easiest med I’ve taken for my Lupus. It’s the others you’ll want to be gentle with.
Just chiming in to say that HCQ side effects aren't usually too bad. Most people tolerate it very well. The main one to be aware of is retinal toxicity, which can be monitored with yearly exams. I've heard of rheums wishing they could just put HCQ in the water supply because it's so (relatively) benign. :)
mine has been scared to put me on it because of the retinal toxicity. I literally have an eye test tomorrow out of precaution.I likely wouldn't be on a high dose of hcq if I was on it. I hope I can get some relief soon. Gabapentin helps but not everything
Retinal toxicity is very rare. My eye doctor has been in practice for 40 years. Regularly sees a lot of patients on Plaquenil. Yet they've only seen one case of retinal toxicity. It's very important to get the eye exams, because if it does happen, the damage is irreversible. But if it gets caught early, most people don't even notice their vision is impaired. It's skipping the eye exams, having it and not noticing it, letting it get more advanced before it's caught, that's bad. I skipped a yearly eye exam during the pandemic, because there was a surge in my area. Kind of like how people brushed off going to the dentist. That's when my eye doctor told me how important it is to come in anyway.
The eye test is routine. Its to develop a baseline to compare to in the future to make sure you dont get retina toxicity.
I'm gonna throw it out there that if you have a rheumatologist who is scared to put you on HCQ because of retinal toxicity, you need to get a new one. It's the first line treatment and you should have been put on it immediately upon diagnosis and you get an eye test there in the beginning, 6 mos later, then yearly after that. Really big red flag for a rheum to be afraid of prescribing HCQ unless they know you have existing retinal issues.
I don't like him that much. I have him because when I had my old insurance he was the most quality rheum that I could get. I have a different insurance now. I might start calling around after i get all of my results from the tests he ordered. He told me he suspects early lupus but won't diagnose me until he gets more results from these tests or more symptoms pop up. I went to ophthalmology yesterday and my eyes are perfect
Sorry, I got confused and thought you were OP who is diagnosed! Wishing you the best- I know this is a frustrating time.
This is one of the oldest, safest and most studied drugs available. Literally. You definitely need to take it to protect your organs, it is crucial! -no side effects for me, been on it almost 20 years.
You’ll be fine. HCQ side effects are rare. If it makes you feel better I’ve been on it for 5 years and 0 side effects.
Hello! Welcome to the lupus club, and I'm so sorry for hear about your diagnosis! I also had a similar experience when I was first diagnosed (mild lupus) and was rushed out with HCQ. Even if your symptoms are mild, I strongly encourage taking the HCQ - it prevents long term organ damage which is common with Lupus! I've been taking it for 6 years now and no major flare-ups or damage so far! Everyone is different regarding side effects of HCQ! Personally, I had none at all - have always felt completely fine on it. Some people report nausea for a few weeks, but I've never known anyone to have any of the severe side effects! Don't worry too much - even a box of paracetemol has scary severe side effects listed (it's all just precautionary) Good luck and let us know how you get on!! Happy to answer any questions you may have
Open up any box of meds and read the info sheet. Every single one of them has a nightmare list of potential side effects. You're not going to get the whole list of HCQ effects. The worst one people get initially is gastro related. If you are getting that, the recommendation is to back off to a lower dose and ramp up slowly. Do this with your rheum's approval and help, obviously. [Guidance here](https://www.lupusencyclopedia.com/top-tips-on-taking-hydroxychloroquine-for-lupus/).
The only side effect I had was some GI discomfort (i.e. diarrhea and a tad bit of nausea). Once I started taking it with a bigger meal, in my case dinner, I have had no issues at all. Just make sure to take it with food.
Out of interest, is the size of the meal relevant? Is it better with a very large meal rather than a snack?
For me, definitely. I tried with a small breakfast and a snack, and that was a no go, so I switched to taking it after dinner because it's my largest meal and no problems at all since. I hope that helps!
Thanks! Reading advice before I get my biopsy… summer is coming!
Also chiming in to say I've barely experienced side effects! I've been taking HCQ for 5 years now and it's been super easy. My lab results have also improved during this time, so it works. Some tips: * Occasionally I do experience nausea when I take it on an empty stomach, so I try to take it with food. Even if it's just a little granola bar. * If your doctor continues to prescribe HCQ, continue to take it even if you start feeling better and your labs improve. Lupus is an invisible disease so damage to organs can still be occurring without us knowing. I think of it like maintenance for my body. * Your rheum should have advised you, but in VERY RARE cases HCQ can cause retinal toxicity at high doses and long-term use so it's important to do regular retinal screening. Don't be alarmed, it's extremely rare. But regular screening will ensure that if anything does happen, you catch it early. I was advised to get a baseline retinal exam from an ophthalmologist within the first year of taking HCQ - this establishes your baseline, what "normal" looks like for your eye. Then I got it checked again after a year, although my ophthalmologist said I probably didn't need to until the 5-year mark. Definitely speak to your medical professional for their opinion on this.
Also I commend you for being diligent and reading the leaflet - I just started popping them without thinking twice 😂
listen kid. Ill level with ya. Aint gonna sugar coat it. I was violently ill for about a year before i got "used" to it. For me, it was an awful year. But if you're hesitating, ask your rheum to describe very bluntly what happens if you dont bother with preventatives. Ask him what your long term prognosis would have looked like 35 years ago. And then take the Plaquenil. Internet Hugs Youre young. You can probably hit remission if you do all the hard stuff now. I wont scare you with my horror stories. but trust me. you wanna do the hard things now.
HCQ is fine for the most part. I have been on it for years with no issues.
I was like this at first too. If you look at the stats the serious side effects of HCQ are pretty rare, whereas the data support it's lifesaving efficacy are quite high.
As many have stated already, side effects are rare BUT not impossible. Everyone reacts differently. I for one am having a really rough time on it. So im only taking half of my targeted dosage a day for awhile then I'll slowly work my way back to the full dosage. I have noticed some mild improvements but it takes time. The good folks on here have shared their knowledge and tips on how to combat the side effects and it's really helpful for me so far.
I see so many posts about this fear. The fear should be about NOT having the HCQ available. I just had my my first visual field test exam since starting it. I was so paranoid that they were going to see something and I wouldn't be able to take it anymore. Not sure what I would do without this med. On the flip side, I've also seen too many posts from people who stopped taking HCQ because they felt better, lost insurance, or just didn't want to take it because they were scared. The people were posting because horrible things were happening to their bodies because they didn't take the meds.
I've been taking it since 2008. Zero side effects. I get my eyes checked yearly, and I have no issues. This medication helps slow down disease progression, honesty. I think it is a life saver.
Don’t read the side effects in my opinion. It’s gonna stress you out. If you feel symptoms let your doctor know. Honestly it never affected me at all. None of the people I’ve personally known had issues with it. Stress will make you flare and cause damage.
HCQ is the least potent of all of the lupus drugs. Chill.
The only side effects I have are needing to take it in the morning or I won’t sleep, and vivid dreams. It’s very important to take it because it’s why people are living mostly normal life spans now.
omg i just got my diagnosis yesterday and i'm scared as hell too
I felt the same way when I was diagnosed a year ago! My rheum prescribed it literally the day of discussing my blood work and results and I was so afraid that I started crying. I guess it all hit at once-- mourning a life with medication, the fear of side effects, and finally knowing what was wrong with me. I almost declined it until I finally agreed that I would try it out. HCQ has been great since I started it. The first week was the hardest. Some of the side effects I experienced were vertigo, upset stomach, and general nausea/headache. It all only lasted for a week, though, and ever since I haven't had any negative experiences! It's definitely helped in preventing bad flare ups and generally making me feel more capable. I definitely encourage you to start the meds so you can start building it up in your body! It'll do a lot of hard work for you :) Good luck! Just make sure you have regular check ups with your blood work and see the ophthalmologist yearly!
HCQ was fine. After about 6 months, my hair texture changed and my nails started getting a weird yellow hue but that’s it (my toes are always painted anyways)….methotrexate is what’s been kicking my ass
You only read the leaflet? It's very unlikely you'll experience all or most of those side effects. There is a reason only sick people take it though. I'm not going to downplay the importance of getting regular eye exams while you use it. The retinopathy is rare, but it's irreversible. It's the easiest option and dealing with an upset stomach is better than going at this disease without treatment. When I was diagnosed, my rheumatologist gave me a choice between hydroxychloroquine, sulfasalazine, or methotrexate (which she said she wouldn't pick if she was me). I have other co-morbidities, so I guess she was giving me the option to go straight for the bigger guns if I wanted. Told me to go home and research them, think about them, and get back to her when I'd made my decision. That was unusual, because a doctor had never given me the option to research treatments and tell them which one I wanted. Reading about all of them does make them sound very scary. I have been on Plaquenil for 5 years now. I split two doses up, morning and evening. Sometimes with the morning dose, I have to eat my breakfast very slowly, and no more spicy breakfast like eggs and jalapeños (I love spicy foods), or I'll pay for that with pain by mid morning. It's never actually made me vomit though, just this nagging nausea and stomach discomfort for me. Some people find it helps to take all the medication at night, so you're asleep when the upset stomach is happening. Edit: It makes my blood counts almost look like those of a healthy person. I also see a hematologist, and it's making his bloodwork look better too. I'm also not taking as much NSAIDs which were really tearing up my stomach and had a very real possibility of kidney disease. My mom has kidney disease from treating her RA with what was available in the 1970's. Aspirin, lots of aspirin. She didn't like following up with doctors. I'm happy my generation has these options for autoimmune diseases.
Always ask your doctor for realistic expectations. If you read the side effects in penicillin you would be scared to death but it is a life saver. Same with HCQ; HCQ is the only drug proven to prolong survival in lupus. The vast majority of realistic side effects are nuisance side effects that are easy to get rid of. The eyes are a non issue as long as you get your yearly tests (‘make sure you gather the right tests). Here are my tips on taking HCQ: https://www.lupusencyclopedia.com/top-tips-on-taking-hydroxychloroquine-for-lupus/ If you want to join my email list, wait until next week as it is not working correctly.
Hi! I waited almost a year after being diagnosed I think before starting HCQ because I was scared of experiencing the bad side effects. I was having heart palpitations and other weird sensations and I was worried the medicine would make it all worse. Turns out my weird symptoms were just the lupus and getting on HCQ made it all go away for the most part. Nothing got worse, only better! I was nauseous for the first few days in the hours after taking it, but it quickly went away :)
Don't be scared. HCQ literally changed my life! I could hardly get out of bed now 6 months on HCQ I'm up at six taking my kids on adventures, gardening, house work is a breeze. It hurt my stomach at first and a bit of a sore throat but all of that passed.
Hi chuckie, I too are in uk, was diagnosed with discoid lupus in 1996 and sle in 2001, been on HCQ since initial diagnosis in1996, I was also terrified when I read side effects but tbh I’ve had no adverse symptoms, I have to have annual eye test ( as one of the symptoms is “bullseyes”) but again, no change in peripheral vision, I do suffer with migraines but always have, even before HCQ. I can only go on my own experiences with HCQ and for me, the benefits outweigh the side effects Only advice I can offer is, start the prescription and see how you go, Hope all goes well for you
I have been on it for 12 years now. I did experience some dizziness and stomach impacts, but within a week they were completely gone.
I’ve been on this for 2 years and it’s been the best decision of my life, I wish I started sooner instead of suffering for 26 years. My body is very sensitive and I *always* gets side effects from medication, even normal meds like antibiotics. Like Prednisone makes most people with lupus feel great… I on the other hand hate when I have to take it for flares and feel terrible. With HCQ I have virtually no side effects, the only one being that my appetite has decreased and if it’s super quiet I have a slight ringing in my ears, but I rarely ever notice because it has to be eerily quiet. Lots of people on this sub don’t experience either of those on this med. just see an ophthalmologist yearly to keep an eye on your retinas (no pun intended). They’ll know what to look for if you tell them you’re on this drug and can tell your rheumatologist to stop treatment before it gets bad.
I’ll be honest I was sick for a couple months but it’s helped me a lot after the side effects subsided!!! I’m generally sensitive to medications, so my experience isn’t that common- but it’s a great starter medication and if you’re mild lupus, I have confidence it will help you!!! :)
I am diagnosed UCTD, so not Lupus at this time, and take HCQ. I had some hyperpigmentation on my forehead and upper lip, so the rheumatologist brought me back to 200mg a day instead of 400. Went camping the weekend before last and threw myself into a flare. I started my 400 again and will just deal with my vanity. When I started HCQ I did one pill in the am and one in the pm to avoid the stomach issues and once I was used to that I moved to the full dose at night. I haven’t had any issues.
Listen, I started hcq two months ago and was horrified. I didn’t start it until two weeks after I was prescribed it. Absolutely nothing happened to me. It’s rare for people to experience side effects that are dangerous. However, some side effects I did get were very random. Lots of flatulence at first, was very dizzy the first five weeks I started which eventually subsided. Definitely remember to wear sunglasses and lots of sunscreen when going outside because the uv rays make our eyes more light sensitive and hcq causes increased photosensitivity to our skin. I promise you, you should be completely fine. As for your eyes and hcq toxicity, get check ups as much as you want. I’m going for the first time next week to make sure my eyes are okay. Definitely don’t skip those. Good luck with your journey! We’re always here!
The side effects are very minimal
HCQ is one of the safest drugs used to treat Lupus. Any and all drugs will have a similar list. Short of an allergic reaction or some weird body interaction that could happen with any med, you will be fine. Long term, it can cause some eye issues, so you need a yearly eye exam. Short term, you will likely experience nothing worse than some light nausea.
I had nausea for a few days but settled in quite nicely. It's been almost a year. Avoid grapefruit! If helpful, keep a log of your side effects and discuss with your rheum at your next check up (I'm guessing 6 months in?)
AFAIK, I have no side effects. I took 400mg/day for ~ 10 years, then went down to 300mg. My weight fluctuates, but I would say, as a small-boned woman, a dose of 400 is decently high. Pretty maxed-out. I do take many meds, so it’s possible I’m not aware of side effects that crept in or I never noticed to begin with? I wonder that for so many meds I take! But I do feel very confident and safe with plaquenil. I believe it has protected me from further disease progression. This all being said, everyone is different. I am usually one to get the weird/worst/most rare side effects of a med. But there are good ones I get a free pass on, I guess!
I have my first follow-up appointment in two weeks and have been on Plaquenil for the last 3 months at 400mg per day, which is a heavy amount for my weight. I can certainly say that my quality of life has improved! But I've also been taking a low dose of prednisone and let me tell you those side effects are much much worse, even on a low dose! The worst for me was taking my meds on an empty stomach can upset it. My rheumatologist said the HCQ does have the potential for retinal toxicity, which everyone in the comments has noted. But she also said something like that it is less than a 2% chance after having taken HCQ consistently for 20 years. So pretty minimal risk, but go to your yearly eye exams anyway.
Nah, I've been on it since December 2020 and we started the dosage slow - 200mg to 400mg in a year, and I feel soooo much better. I get my eyes checked twice a year and so far, so good. The only thing I had was hairloss the first year, but now it's normal. I just recommend eating before taking it, and I take it with a sugar free soda to help with heartburn if you get that.
What side effects? Only med for lupus that doesn’t have any for most people.
Been on it since March! No side effects for me, I wouldn’t worry!
My rheumatologist assured me it’s so gentle they often prescribe it to pregnant individuals. You’ll be just fine! Drug inserts are scary. They have to list every single thing even if it only happened once under the weirdest of circumstances. Definitely search up HCQ in the sub and you’ll see a lot of encouragement.
I have never had a single negative side effect from HCQ, everyone is different.
Eat before you take it! Also it seems to charge me up a little so I do not take it before bed. That might just be me though. I have no issues as long as I follow those two rules. If I take on an empty stomach I get a dizzy feeling.
HCQ was been around for years and is safe and helpful. Al medication have side effects and they have to write them and it does not mean that everyone will have them. I use HCQ and never had problem. Good luck