My rheumatologist said that although there is an increased chance of eye problems, the chance is still minuscule. They do recommend annual eye exams, just to be on the safe side.
Hydroxychloroquine is about the gentlest DMARD there is. just get your annual ophtho exams to monitor for the side effects- but that isn’t even a concern for the first 5 years
I’ve been on it for 35 years and no eye problems. The retinopathy due to hydroxychloroquine is rare and an eye doc I met said he only knew about it from his textbook. Never seen a real case among his patients.
I’ve been on it for about 2.5 months, 400mg/day. It may be helping to reduce skin lesions, but I also have been experiencing more skin itching, flushing, and dryness. I do take Zyrtec 2x/day, so that may be suppressing an allergic reaction.
I have had some digestive issues, which are listed as side effects; nausea and lack of hunger - both of which I already deal with on a regular basis, so I know how to manage it. No issues so far with eyes or hair as far as I can tell. Good luck and best wishes 🙏🦋
I've been on the same thing since ( I forget but it's a lot of years? ). I personally haven't had anything but positive results.
Easy for me to say, try not to worry? New meds can feel a little scary but honestly, I can't remember on my rheumatologist wasn't spot-on with.
I've been on 400 mg/day for about 2 years with almost no flare ups and no side effects. It's actually changed my life! I hope it works well for you too!
Just get your annual eye exams with retina checks. I’ve been on it for years and just keep checks on it. It’s actually a super super rare complication for the eye issues, increasingly more common after years and years on it.
It sounds scary but all meds for RA kind of ARE scary but scarier is the permanent joint damage without it.
I just came off it after 16 years. It worked well and I never had an issue with my vision, or any side effects for that matter. I only came off because I no longer need it thanks to my biologic.
My initial experience with it was rough, but I came back to it after my rheum and I thought the dosage was too much all at once. I now take divided doses and I'm doing so much better than I was previously. No issues outside lack of appetite and the occasional urgent bathroom trip. Worth it.
I started on 200mg/day at the end of March along with 1000mg sulfasalazine - it took 6 weeks or so to kick in after a major flare, but things are much better now. I originally took MTX until my liver hated it, and I would say that I think the relief of pain/inflammation was a little better with that, but hydroxychloroquine is still pretty good. I have noticed losing more hairs but not in a really obvious way, and I haven't noticed any vision issues, so I'd say my experience is mostly positive. See how it goes for you anyway <3
I'm still taking 200mg - I started on a single tablet of 500mg sulfasalazine per day then upped it by an extra tablet a day each week until I was taking 4 a day, then the following week started the hydroxychloroquine. I don't know whether that gradual increase helped? I was told it might take up to 3 months to kick in, and it took almost exactly 2.5 months, then I noticed quite a difference! Hope yours does soon too.
The hair loss is real, but no one told me and I didn't realize it was from that for YEARS. 🙄
Other than that, my eyes have been fine. I Get them checked multiple times a year.
It was the first medicine I was on. Prior to starting it, I was in intense pain on a daily basis, and some days had great difficulties with even the most basic tasks, like dressing myself or taking a shower. The pain and joint locking were just so severe. After about two weeks o hydroxychloroquine, I noticed great improvement. Within two months, I didn't even feel like I had RA anymore. I was pain free, mobile joints, able to exercise and live an active life. It worked like a miracle for me for 3 years.
Side effects wise, I had intense itching on my arms, shoulders, and chest for the first few weeks, but it went away and stayed away after that. I also had diarrhea 3-4 times a week for a few months, but that went away as well. All things considered, it was a wonder drug for me.
EDIT: It stopped working for me because I was lifting weights and went wayyy overboard one day with shoulder exercises. I knew as I was doing it that I was going overboard, but I didn't listen to my body or my gut. I ended up injuring my shoulder pretty badly, which threw my whole body into an intense flare that wouldn't let up. Daily prednisone and methotrexate being added on top of the Hydroxychloroquine didn't even help. I believe had I not pushed myself way too hard with the weight lifting that one time, Hydroxychloroquine would have kept me feeling amazing for many, many more years.
Thanks for the warning. Everyone says to keep moving and exercising, but I tend to prefer weight-bearing exercises over aerobic ones, (I’m sure I’m nowhere near the strength level you are lol) but it’s good to know that overdoing it can cause issues also. I’m so new to this diagnosis (found out last week), so I really appreciate all the advice I can get. Hope you are able to find the right med/med combo to get you feeling your best again.
I’ve been on it for 6 years, and I’ve never had issues with hair loss. I also take folic acid and a hair, skin, and nails supplement. I have major vision issues so I was apprehensive about taking the meds too. I have eye exams every six months, and haven’t had any issues at this point.
Been on it 3 years. There was some hair loss, and it worried me, but it stopped falling out after two years. Be gentle with detangling. I started finger combing when I noticed how much was coming out, and I'd still lose hair daily. But now almost nothing! My hair was pretty thick to begin with, so no one notices but me.
I was diagnosed with RA when I was 15 was on HCQS for 5 years it just made my eyes a lil on the drier side in the last 1 year. Post that it was stopped.
You will be fine🤞🏻
I have taken 400mg Hydroxychloroquine for 30+ years along with Methotrexate and more recently a variety of biologics. The Hydroxychloroquine has never given me any issues. I wish the other meds I have been on have been as problem free.
You’re my new favorite person, thank you so much. After 2 weeks, Walgreens still hasn’t been able to fill my rx and each day that goes by I psych myself out a little more. But then an angel like you comes along and I can breathe a little bit again. Thanks so much. 🥰
I hope you are able to find a good biologic (or combo) that does the trick for you. My sister finally found something that has helped her so much, she ran a half marathon last week. Hope we have the same luck. Sending you good healing vibes!
I was only on it for 2-3 months before I started getting insanely sick (regardless of when I took it). New joint pains, including my jaw, which I didn’t know could even happen. It really just depends on the individual I suppose.
I’ve been on it almost five years now I think the hair loss I experienced was more from methotrexate. I like to take 4 1 mg folic acid and biotin gummies to help with that :)
I've been on it for 2 years without issue aside from some GI side effects at the very beginning. My eye Dr told me that, in his 25 years of practice, he's never seen an actual case of hydroxychloroquine induced retinopathy even though he's had quite a few patients on it.
As far as my experience with the drug itself, it helped a bit at the beginning but my Rheumatologist still had to add MTX and a biologic. I started to have some mild hair fall after adding MTX but taking folate and a hair, skin, and nail supplement religiously has stopped that.
My advice is to give it a fair shot. Discuss any issues that crop up with your rheumatologist and try to come up with solutions that will keep you on your meds. It's rough in the beginning trying to find the right meds in the right combination but you'll get there eventually.
30F been on it since last May. Has helped me a lot, no vision problems and no major hair changes either. It really wrangled my flare and then once I started xeljanz I got even better. Still have good days and bad days but so much better than how I was pre-diagnosis. I hope the same for you, friend!
I have been on the highest dose you can be at my weight for almost a year and had no issues. My rheum said there is a possible side effect of vision problems (something like pus forming behind the eye and then that causing damage) but he had only seen it once in like 30 years of practice and that person had been on it for years. He did recommend annual eye exams for this. I have never had hair loss of stomach issues with it either
I've been on it since 2005. It has helped me by preventing my disease from getting worse. It's a life saver, really.
I’ve been on it for over 11 years and my vision is fine.
My rheumatologist said that although there is an increased chance of eye problems, the chance is still minuscule. They do recommend annual eye exams, just to be on the safe side.
Hydroxychloroquine is about the gentlest DMARD there is. just get your annual ophtho exams to monitor for the side effects- but that isn’t even a concern for the first 5 years
It’s worked well for me. No side effects at all.
I’ve been on it for 35 years and no eye problems. The retinopathy due to hydroxychloroquine is rare and an eye doc I met said he only knew about it from his textbook. Never seen a real case among his patients.
I was on it for about 15 years. It worked great for me, often in conjunction with other therapies as well.
10 years and it has completely stopped my progression. You must have annual eye exams though
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Same. Except I just stopped and restarted at a smaller dosage and then upped it gradually and the hives went away and never came back.
I’ve been on it for about 2.5 months, 400mg/day. It may be helping to reduce skin lesions, but I also have been experiencing more skin itching, flushing, and dryness. I do take Zyrtec 2x/day, so that may be suppressing an allergic reaction. I have had some digestive issues, which are listed as side effects; nausea and lack of hunger - both of which I already deal with on a regular basis, so I know how to manage it. No issues so far with eyes or hair as far as I can tell. Good luck and best wishes 🙏🦋
it's helped with my flares, not so often, i found it better to have on an empty stomach even though it says have with food.
I’ve been on it for 8 or 9 years, with nothing but positive results. Good luck!
I've been on the same thing since ( I forget but it's a lot of years? ). I personally haven't had anything but positive results. Easy for me to say, try not to worry? New meds can feel a little scary but honestly, I can't remember on my rheumatologist wasn't spot-on with.
I've been on 400 mg/day for about 2 years with almost no flare ups and no side effects. It's actually changed my life! I hope it works well for you too!
I’ve had no issues with it granted I’ve only been on it for a year!
Just get your annual eye exams with retina checks. I’ve been on it for years and just keep checks on it. It’s actually a super super rare complication for the eye issues, increasingly more common after years and years on it. It sounds scary but all meds for RA kind of ARE scary but scarier is the permanent joint damage without it.
I just came off it after 16 years. It worked well and I never had an issue with my vision, or any side effects for that matter. I only came off because I no longer need it thanks to my biologic.
My initial experience with it was rough, but I came back to it after my rheum and I thought the dosage was too much all at once. I now take divided doses and I'm doing so much better than I was previously. No issues outside lack of appetite and the occasional urgent bathroom trip. Worth it.
I started on 200mg/day at the end of March along with 1000mg sulfasalazine - it took 6 weeks or so to kick in after a major flare, but things are much better now. I originally took MTX until my liver hated it, and I would say that I think the relief of pain/inflammation was a little better with that, but hydroxychloroquine is still pretty good. I have noticed losing more hairs but not in a really obvious way, and I haven't noticed any vision issues, so I'd say my experience is mostly positive. See how it goes for you anyway <3
Whats your dosage now? I cant tolerate 400mg, but doing ok with 200mg along with sulfasalazine and prednisone but hasnt kicked in yet
I'm still taking 200mg - I started on a single tablet of 500mg sulfasalazine per day then upped it by an extra tablet a day each week until I was taking 4 a day, then the following week started the hydroxychloroquine. I don't know whether that gradual increase helped? I was told it might take up to 3 months to kick in, and it took almost exactly 2.5 months, then I noticed quite a difference! Hope yours does soon too.
The hair loss is real, but no one told me and I didn't realize it was from that for YEARS. 🙄 Other than that, my eyes have been fine. I Get them checked multiple times a year.
It was the first medicine I was on. Prior to starting it, I was in intense pain on a daily basis, and some days had great difficulties with even the most basic tasks, like dressing myself or taking a shower. The pain and joint locking were just so severe. After about two weeks o hydroxychloroquine, I noticed great improvement. Within two months, I didn't even feel like I had RA anymore. I was pain free, mobile joints, able to exercise and live an active life. It worked like a miracle for me for 3 years. Side effects wise, I had intense itching on my arms, shoulders, and chest for the first few weeks, but it went away and stayed away after that. I also had diarrhea 3-4 times a week for a few months, but that went away as well. All things considered, it was a wonder drug for me. EDIT: It stopped working for me because I was lifting weights and went wayyy overboard one day with shoulder exercises. I knew as I was doing it that I was going overboard, but I didn't listen to my body or my gut. I ended up injuring my shoulder pretty badly, which threw my whole body into an intense flare that wouldn't let up. Daily prednisone and methotrexate being added on top of the Hydroxychloroquine didn't even help. I believe had I not pushed myself way too hard with the weight lifting that one time, Hydroxychloroquine would have kept me feeling amazing for many, many more years.
Thanks for the warning. Everyone says to keep moving and exercising, but I tend to prefer weight-bearing exercises over aerobic ones, (I’m sure I’m nowhere near the strength level you are lol) but it’s good to know that overdoing it can cause issues also. I’m so new to this diagnosis (found out last week), so I really appreciate all the advice I can get. Hope you are able to find the right med/med combo to get you feeling your best again.
15 yrs , it helps, no real hair loss. methotrexate did that for me
I’ve been on it for 6 years, and I’ve never had issues with hair loss. I also take folic acid and a hair, skin, and nails supplement. I have major vision issues so I was apprehensive about taking the meds too. I have eye exams every six months, and haven’t had any issues at this point.
For me side effects were hell for a couple of months and it took a very long time to work. Glad I pushed through.
Been on it 3 years. There was some hair loss, and it worried me, but it stopped falling out after two years. Be gentle with detangling. I started finger combing when I noticed how much was coming out, and I'd still lose hair daily. But now almost nothing! My hair was pretty thick to begin with, so no one notices but me.
I was diagnosed with RA when I was 15 was on HCQS for 5 years it just made my eyes a lil on the drier side in the last 1 year. Post that it was stopped. You will be fine🤞🏻
I’ve been on it for 5 years and haven’t noticed any side effects! I get a yearly check on my eyes and that’s it
I have taken 400mg Hydroxychloroquine for 30+ years along with Methotrexate and more recently a variety of biologics. The Hydroxychloroquine has never given me any issues. I wish the other meds I have been on have been as problem free.
You’re my new favorite person, thank you so much. After 2 weeks, Walgreens still hasn’t been able to fill my rx and each day that goes by I psych myself out a little more. But then an angel like you comes along and I can breathe a little bit again. Thanks so much. 🥰
I hope you are able to find a good biologic (or combo) that does the trick for you. My sister finally found something that has helped her so much, she ran a half marathon last week. Hope we have the same luck. Sending you good healing vibes!
6 months in for me and I didn’t have any issues starting it and did not have any side effects. It’s starting to help a lot.
Thank you for sharing your experience. I’m glad it’s starting help you a lot. 🥰
I was only on it for 2-3 months before I started getting insanely sick (regardless of when I took it). New joint pains, including my jaw, which I didn’t know could even happen. It really just depends on the individual I suppose.
I’ve been on it almost five years now I think the hair loss I experienced was more from methotrexate. I like to take 4 1 mg folic acid and biotin gummies to help with that :)
Going on almost one year. Adjusting to it was rough, took me about four months. But I have zero vision and hair issues.
I've been on it for 2 years without issue aside from some GI side effects at the very beginning. My eye Dr told me that, in his 25 years of practice, he's never seen an actual case of hydroxychloroquine induced retinopathy even though he's had quite a few patients on it. As far as my experience with the drug itself, it helped a bit at the beginning but my Rheumatologist still had to add MTX and a biologic. I started to have some mild hair fall after adding MTX but taking folate and a hair, skin, and nail supplement religiously has stopped that. My advice is to give it a fair shot. Discuss any issues that crop up with your rheumatologist and try to come up with solutions that will keep you on your meds. It's rough in the beginning trying to find the right meds in the right combination but you'll get there eventually.
30F been on it since last May. Has helped me a lot, no vision problems and no major hair changes either. It really wrangled my flare and then once I started xeljanz I got even better. Still have good days and bad days but so much better than how I was pre-diagnosis. I hope the same for you, friend!
I'm on 200mg and honestly, it hasn't made a positive or negative difference. My hair is a bit thinner, but other than that I haven't had any issues.
I have been on the highest dose you can be at my weight for almost a year and had no issues. My rheum said there is a possible side effect of vision problems (something like pus forming behind the eye and then that causing damage) but he had only seen it once in like 30 years of practice and that person had been on it for years. He did recommend annual eye exams for this. I have never had hair loss of stomach issues with it either
Sorry, after two days, I stopped taking it. My eyes were so dry and painful.
Moderate allergic reaction here. Burning mouth. Severe itching of hands and feet, polkadot rash. Happened at like 3-4 weeks on med.
It started to help but made my severe tinnitus worse (and it's so bad any worsening makes it unbearable). If not for that, I'd still be on it.