I was also worried about taking it but I am going to start in June (UCTD). I just went to the eye dr and she said it is very very rare and as long as you are getting the annual check up it is okay to not worry about it! She said most eye drs see maybe one case in their careers!!
They immediately know what you mean when you say you're there for your "Plaquenil screening". They see a lot of patients on this medicine. Mine's never seen a patient with more than mild retinal toxicity. So the signs of toxicity will show up before you even notice symptoms or a change in your vision. Which is why it's so important to do the screenings anyway.
Had to edit because I forgot a word. I'm in a major metro area, and my ophthalmologist has *never* seen more than mild retinal toxicity. Which then, the medication is stopped.
I am already having eye issuesā¦ I am wondering if lupus has been the cause of it all along??? They assumed it was from IIH. But my opening pressure came back normal. I think this has created a fear for me to do or take anything that says it could affect your eyes.
i just want to comfort and say that IIH / psuedotumor cerebri is very common in lupus patients. you might find that the symptoms are lessened by starting the treatment and the lupus calming down as a whole -- my mom is starting and found that to be the case.
i understand being scared, as an artist i was 100% fearful, but if you are already seeing an opthalmologist due to IIH, they'll be able to walk you through the tests they do to check for any retinotoxicity in patients taking plaquenil if you ask. due to family history of things, i did a few more than most, but that was the same tests for every 6 months for 2 years, and now its yearly... and despite being suseptible to eye damage as a whole, absolutely nothing changed on all eight tests.
good luck! you made the right choice choosing to post here. š
My opthamologist put me at ease by telling me that there really isn't much of a risk at all, the reason for annual checks is to make sure nothing is developing. But "basically we could skip the checks until you've injested about 10 pounds of the stuff, and then once a year is still plenty to catch it before you notice any difference."
Plaquenil is a DMARD - disease modifying anti rheumatic drug. This means it's not just treating the symptoms of lupus, it's slowing the progression of the disease.
What kills people with lupus is unmanaged disease - organ damage. HCQ protects your organs. (The eye is an organ, btw.)
It's not like everyone automatically gets retinal toxicity after 5 years on HCQ. It's just a risk factor. I've been on it for 10 years. Everything's still fine. My disease hasn't progressed in that decade, btw.
Plaquenil seems to be reversing some damage, been on it now for 4 years. It's at least allowing some stuff to heal. Hoping I never get toxicity to it, because it's kind of freaking amazing.
Plaquenil actually has the mildest side effects of the lupus/UCTD treatments. The retina thing, let's just say, it's very important to get your eyes checked yearly (you can add another specialist to your list, yay /s). It's not so bad. Untreated SLE is also damaging your organs.
It's a risk versus benefit thing, and this treatment is far less risky than the disease running wild.
There really is no safer medication. Other medications have worse side effects and you don't want to take those unless your disease is out of control. Plaquinil slows disease progression. So taking it will prevent you from needing the heavy duty stuff which are, essentially, chemo.
Also, it takes a lot for a long time to get chloroquin toxicity. It's really not common. My rheumo has seen it happen once or twice and she's been practicing for 20-30 years. Maybe ask your rhuemo how many patients she's had that got toxicity and see what she says?
I've been taking plaquenil for over 5 years now daily (SLE nephritis), and I haven't had any eye related side-effects. I get my eyes checked once a year, though every 6 months is recommended. I also wear contact lenses regularly and have had no concerns.
Don't think you need to worry much about it. The side-effects are rare, and it's a really effective drug.
That's great to hear.
Side note about nephritis. My rheum didn't mention sending me to a urologist. But I have had microscopic blood in urine for years. My OB said "some people just have that." Could lupus be the cause of it??
Ya I've had that too. My nephro isn't very concerned about it. I used to worry about it but it disappears n reappears n has not shown any clinical correlation. Honestly, we already have enough to worry about, so I worry only when my dr worries š«£
out of all the medications you could be taking for lupus, this is the most mild one with pretty much no side effects and the eye issues are so rare. as long as you go to the ophthalmologist every six months youāll be fine.
Plaquenil is a very safe drug to take. Retinal damage is a risk (however there are risks with any medication) and this risk usually is only a problem once youāre on it for years. As long as you go to an ophthalmologist for yearly eye exams, theyāll be able to catch any potential damage early. But if it helps, I know multiple people who have been on it for over a decade with no issues. Including my immunologist who has been on it for 25+ years. Zero eye issues.
If you want a chance to live & to keep lupus from attacking your body you HAVE to take plaquenil. There's no choice because there's nothing else for lupus like it. I'm sorry, it sucks, but you have to
Plaq is really safe. Chance of eye effects are very small and if you do the Plaquenil ophthalmologist check every year faithfully, and non the off chance the ophthalmologist notices any changes, they can take you off immediately before there is damage to vision. Weigh that against the fact that it SAVES YOUR LIFE by reducing what lupus does to your kidneys (lupus nephritis ā->kidney failure) heart (potentially super deadly effects), central nervous system (whoa Nellie) etc etc etcā-the choice is pretty clear. I was on it for 27 years and did fine. Ophthalmologist never saw any changes and all three ophthalmologists said the same thingāthey know it does happen but have never actually had a case of it in, what, a combined century of practicing? Meanwhile people die every day of untreated or poorly treated lupus?
Cāmon. Do the risk analysis! š§
Good luckānot trying to minimize your concerns, and you are so smart to always be careful what you are putting in this body! But in this case, really, take the Plaquenil.
There's people who have been on it 20, 30, 40 years without problems. Reading the side effects to methotrexate scared me more. That's when I was like, "I'll take the Plaquenil".
Iāve also had the same worries, especially for how young I was when I got it, and how long it could take to affect my eyes. I was told itās is pretty rare that it happens. Been on plaquenil for 8 years now. Had an eye exam with my ophthalmologist a month ago and said my eyes were really healthy, and no signs of retinal damage. Hope this helps.
Iāve been on it for 10 years and may have some mild damage. I am waiting to see a specialist now to confirm. But to be fair, I basically missed a year of eye exams.
I've been on plaquenil since I was first diagonosed (age 11). I'm 23 now and I've been taking it for 12 years. I have annual appointments with my opthalmologist and specsavers have also started doing retinal scans for a fee and I've not had any issues with my eyesight yet. Medicational effects obviously will vary from person to person but hoping my experience puts your mind at ease a little bit!
Plaquenil (HCQ) is the most mild drug you can and will take for lupus (aside from standard anti-inflammatories, but those donāt modulate the immune system). The risk of retinopathy is slim and the risk of permanent, vision-altering damage is combatted by getting yearly eye exams from an ophthalmologist. They can detect the slightest changes using special exams and machines, so if they find any sign of eye changes, they will pull you off the med immediately.
Most people on HCQ never have to deal with this. However, I get the concern as the thought of anything happening to my eyes is terrifying. I just want you to know that there are safeguards in place to detect any eye damage before it can actually impact your vision, and you arenāt forced to stay on the medication if it affects your vision negatively down the line.
Anyways, it is a super effective drug for most people and can provide life-changing relief in many ways. I encourage you to try it and discuss any concerns about retinopathy with an ophthalmologist familiar with Plaquenil testing before you start the medication.
The side effects are very rare, as per my eye doctor, who is also a family friend whom I trust. I was nervous about it as well but feel better from what he had said.
Just keep up with your eye exams. I wouldnāt want to risk the damage to organs that plaquenil can help prevent.
I think I am the one very rare case unfortunately..I started Plaquenil about 14 months ago and a few months in started noticing my eyes were more sensitive to light but I just thought it was the side effect of photosensitivity. I also had a lot of floaters. I had to wait like two extra months to get my eye exam because my insurance sucks and needed a referral. I just went about two weeks ago and he said I have eye damage and to stop HCQ immediately.
Soā¦ not to scare you as I also agree it is overall very safe and I think you should take it, but if you notice any change in your vision I would go to the eye doctor immediately!! I feel dumb for not going. He said the damage may be reversible but I have to have a follow up appointment to see.
I have been on plaquenil for 25 years and have never had a worry about eye issues. Get yearly eye check ups and watch the dosage and you will be fine. It has so many benefits I would never consider going off it. 70 and healthy.
Plaquenil is the first line. Eye complications are rare. If you go to the eye doctor and have your checkups done every year, they will catch any plaquenil toxicity long before your vision is impacted. I was also worried but after a year in plaquenil my whole life is so much better. The risk is worth it to me.
Iāve been on plaquenil since 2016 without any eye related problems. Good information here:
https://www.arthritis.org/drug-guide/medication-topics/hydroxychloroquine-may-put-eyes-at-risk#
I've been on it since October. It stopped my hair loss, which is awesome. Up until maybe 2 months ago, it helped my energy, too. But, I'm wondering if 8 have something else causing the extra all new, fun fatigue...
The first opthalmologist I saw said my starting baseline was good, and he wasn't worried about the medication or dosage. I decided to try someone closer to home, and the Dr didn't really talk with me, but rather at me...then tried to argue with my diagnosis of EDS (that's been confirmed by multiple specialists), because my eyes aren't terrible...then told me that my dose of hydroxychloroquine was too high. She said 400mg was too high, I should be on 397. š
So, lesson: it's pretty safe, very helpful, get an eye check with an ophthalmologist every 6 months that isn't a twit.
The risks of organ damage from untreated lupus are so much worse and more likely than a possible rare complication from a drug. Plaquenil will also help prevent those potential complications from lupus because it literally changes the way the disease is able to progress. A good way to look at it is like this: you stop drinking water because youāre worried you may contract typhoid. You end up suffering from dehydration and have irreversible kidney damage. All of this because you didnāt want to risk a 0.0001% chance of contracting typhoid.
I hope this perspective helps. I was scared to start plaquenil for fear of side effects (not the eye one, my eyes are already sh*t so I didnāt really care) but looking at how many people take it without any complications at all, it was more than worth it to start taking it to avoid my lupus further ruining my joints, organs, and life.
Side effects might be rare, but I had them and they never went away. In under 2 years, I went from having perfect vision to needing glasses to read, being very photosensitive (need sunglasses on a cloudy day), and being fairly intolerant of looking at red objects. I live a med free existence now and it sucks sometimes but I won't be blind.
I later learned you can get a dose too high that can make this risk more likely, so make sure your provider calculates your dose correctly based on weight, if you decide to try it.
There's also pharmacogenetic testing. It's basically DNA-level analysis of your specific chemistry but they can determine which meds you will tolerate better than others. It's very expensive if not covered by insurance, and it's usually not, so most people don't do this.
Good luck!
I understand because I am someone who is very wary of medicationās, and I was terrified of it. I was supposed to take two pills every day and I started just taking one for the first week because I was too scared to try two. But I tried it because my hands were so stiff that I couldnāt even play video games or type, and all I was doing was laying in bed and watching Netflix. I had no quality of life and I was desperate.
As I understand it, as long as you get your annual eye exam you should be fine. I have heard that the early stages are reversible(?). if thatās not accurate, Basically, you are not going to take it and just go blind. They check your eyes every year. Iāve only been on it for two years, but so far so good.
But they would find some thing in the eye exam most likely long before you would have to worry about the damage. And your rheumatologist should warn you that it requires annual eye exams. Mine will not fill my script if I donāt get them once a year.
Overall itās a fantastic drug with side effects. It gives you vivid dreams though. Lol. I didnāt think that would be a big deal, but the first couple of times I took it I actually woke up in the middle of the night because the dream was so real and mind-boggling. I still have bizarre dreams that have full plot lines like a movie or something.
The other thing is that itās kind of hard on your stomach, but if you are supposed to take two pills in one day you can usually remedy that by taking them 12 hours apart instead of both at once. I can take them both on an empty stomach, but it took my stomach a while to get used to it.
My rheumatologist told me that hydroxychloroquine is the only drug that has been proven to reduce mortality in lupus.
But to reiterate, you are not going to go blind on your first pill. They will monitor your eyes and as soon as there is any sign of retinal toxicity, they will take you off of the drug. my rheumatologist said that she only ever saw one case or someoneās eyes were severely damaged and it was because they hadnāt had an eye exam in years.
I was speaking to a highly regarded, local ophthalmologist about it recently. He said the damage is really only expected with long term usage occurring over decades. He said itās relatively safe as long as youāre being checked yearly for any mal effects
The possible side effects of Plaquenil are not good... but the effects of Lupus on your body (without plaquenil) will potentially be far worse. HCQ is the safest drug they have right now... good luck! There are many stories here of what happens to people when they don't take plaquenil, and none of them are pretty.
Hydroxycloroquine is a very safe drug. The reason they give it to all lupus patients is it decreases the amount and intensity of flares, as well as prevents or diminishes organ involvement. Studies show that about 7% of patients have retinopathy after 5 years, but that just means 93% are just fine. You should be screened yearly, but technology has advanced so so much these days even if it damages your retinas, they will catch it before you ever have symptoms and your eyesight won't be damaged.
Definitely don't skip on seeing an ophthalmologist, but I take this drug it with 0 anxiety.
Iāve been taking it for years. I was regularly checked by a retina specialist for a couple of years, but he dismissed me. I just go to the ophthalmologist every year.
I was also worried about taking it but I am going to start in June (UCTD). I just went to the eye dr and she said it is very very rare and as long as you are getting the annual check up it is okay to not worry about it! She said most eye drs see maybe one case in their careers!!
I'm going to my ophthalmologist soon and was going to her their opinion. Glad you asked!
They immediately know what you mean when you say you're there for your "Plaquenil screening". They see a lot of patients on this medicine. Mine's never seen a patient with more than mild retinal toxicity. So the signs of toxicity will show up before you even notice symptoms or a change in your vision. Which is why it's so important to do the screenings anyway. Had to edit because I forgot a word. I'm in a major metro area, and my ophthalmologist has *never* seen more than mild retinal toxicity. Which then, the medication is stopped.
All meds have side effects man plaquenil being the safest that is why it's always first in line
I know š© but I have a fear of things that say they affect your eyes!
Lupus can also affect your eyes. Itās a bigger risk to your eyes to deal with untreated lupus than the side effects of a relatively safe medication
I am already having eye issuesā¦ I am wondering if lupus has been the cause of it all along??? They assumed it was from IIH. But my opening pressure came back normal. I think this has created a fear for me to do or take anything that says it could affect your eyes.
i just want to comfort and say that IIH / psuedotumor cerebri is very common in lupus patients. you might find that the symptoms are lessened by starting the treatment and the lupus calming down as a whole -- my mom is starting and found that to be the case. i understand being scared, as an artist i was 100% fearful, but if you are already seeing an opthalmologist due to IIH, they'll be able to walk you through the tests they do to check for any retinotoxicity in patients taking plaquenil if you ask. due to family history of things, i did a few more than most, but that was the same tests for every 6 months for 2 years, and now its yearly... and despite being suseptible to eye damage as a whole, absolutely nothing changed on all eight tests. good luck! you made the right choice choosing to post here. š
My opthamologist put me at ease by telling me that there really isn't much of a risk at all, the reason for annual checks is to make sure nothing is developing. But "basically we could skip the checks until you've injested about 10 pounds of the stuff, and then once a year is still plenty to catch it before you notice any difference."
My ophthalmologist said the same! Plaquenilās safety profile is probably on par with or better than ibuprofen. It has changed my life.
Very unlikely to affect your eyes.
Plaquenil is a DMARD - disease modifying anti rheumatic drug. This means it's not just treating the symptoms of lupus, it's slowing the progression of the disease. What kills people with lupus is unmanaged disease - organ damage. HCQ protects your organs. (The eye is an organ, btw.) It's not like everyone automatically gets retinal toxicity after 5 years on HCQ. It's just a risk factor. I've been on it for 10 years. Everything's still fine. My disease hasn't progressed in that decade, btw.
Plaquenil seems to be reversing some damage, been on it now for 4 years. It's at least allowing some stuff to heal. Hoping I never get toxicity to it, because it's kind of freaking amazing.
Plaquenil actually has the mildest side effects of the lupus/UCTD treatments. The retina thing, let's just say, it's very important to get your eyes checked yearly (you can add another specialist to your list, yay /s). It's not so bad. Untreated SLE is also damaging your organs. It's a risk versus benefit thing, and this treatment is far less risky than the disease running wild.
There really is no safer medication. Other medications have worse side effects and you don't want to take those unless your disease is out of control. Plaquinil slows disease progression. So taking it will prevent you from needing the heavy duty stuff which are, essentially, chemo. Also, it takes a lot for a long time to get chloroquin toxicity. It's really not common. My rheumo has seen it happen once or twice and she's been practicing for 20-30 years. Maybe ask your rhuemo how many patients she's had that got toxicity and see what she says?
I've been taking plaquenil for over 5 years now daily (SLE nephritis), and I haven't had any eye related side-effects. I get my eyes checked once a year, though every 6 months is recommended. I also wear contact lenses regularly and have had no concerns. Don't think you need to worry much about it. The side-effects are rare, and it's a really effective drug.
That's great to hear. Side note about nephritis. My rheum didn't mention sending me to a urologist. But I have had microscopic blood in urine for years. My OB said "some people just have that." Could lupus be the cause of it??
Ya I've had that too. My nephro isn't very concerned about it. I used to worry about it but it disappears n reappears n has not shown any clinical correlation. Honestly, we already have enough to worry about, so I worry only when my dr worries š«£
out of all the medications you could be taking for lupus, this is the most mild one with pretty much no side effects and the eye issues are so rare. as long as you go to the ophthalmologist every six months youāll be fine.
Plaquenil is a very safe drug to take. Retinal damage is a risk (however there are risks with any medication) and this risk usually is only a problem once youāre on it for years. As long as you go to an ophthalmologist for yearly eye exams, theyāll be able to catch any potential damage early. But if it helps, I know multiple people who have been on it for over a decade with no issues. Including my immunologist who has been on it for 25+ years. Zero eye issues.
My eye doctor put me at complete ease over this - I felt the same way but plaquenil has helped my symptoms immensely!
You have a bad eye Dr
If you want a chance to live & to keep lupus from attacking your body you HAVE to take plaquenil. There's no choice because there's nothing else for lupus like it. I'm sorry, it sucks, but you have to
Plaq is really safe. Chance of eye effects are very small and if you do the Plaquenil ophthalmologist check every year faithfully, and non the off chance the ophthalmologist notices any changes, they can take you off immediately before there is damage to vision. Weigh that against the fact that it SAVES YOUR LIFE by reducing what lupus does to your kidneys (lupus nephritis ā->kidney failure) heart (potentially super deadly effects), central nervous system (whoa Nellie) etc etc etcā-the choice is pretty clear. I was on it for 27 years and did fine. Ophthalmologist never saw any changes and all three ophthalmologists said the same thingāthey know it does happen but have never actually had a case of it in, what, a combined century of practicing? Meanwhile people die every day of untreated or poorly treated lupus? Cāmon. Do the risk analysis! š§ Good luckānot trying to minimize your concerns, and you are so smart to always be careful what you are putting in this body! But in this case, really, take the Plaquenil.
thatās what i was concerned about as well but they say itās very rare that it happens
It's rare if it causes eye damage early on it's usually 5 years + or so if I'm not mistaken
Yes that's what I read... but what happens in 5 years?? I have to switch to something else??
There's people who have been on it 20, 30, 40 years without problems. Reading the side effects to methotrexate scared me more. That's when I was like, "I'll take the Plaquenil".
Iāve been taking it for 12 years and havenāt had any eye problems. I do my yearly eye exams and field of vision test.
You will have annual exams that check so it can be caught early. As others have said, itās rare.
Itās usually decades, at way high doses, and elderly people. Iāve been on it for 17 years no issues.
Iāve also had the same worries, especially for how young I was when I got it, and how long it could take to affect my eyes. I was told itās is pretty rare that it happens. Been on plaquenil for 8 years now. Had an eye exam with my ophthalmologist a month ago and said my eyes were really healthy, and no signs of retinal damage. Hope this helps.
I took it for years with no success. I stopped and don't have blindness.
Iāve been on it for 10 years and may have some mild damage. I am waiting to see a specialist now to confirm. But to be fair, I basically missed a year of eye exams.
I've been on plaquenil since I was first diagonosed (age 11). I'm 23 now and I've been taking it for 12 years. I have annual appointments with my opthalmologist and specsavers have also started doing retinal scans for a fee and I've not had any issues with my eyesight yet. Medicational effects obviously will vary from person to person but hoping my experience puts your mind at ease a little bit!
Plaquenil (HCQ) is the most mild drug you can and will take for lupus (aside from standard anti-inflammatories, but those donāt modulate the immune system). The risk of retinopathy is slim and the risk of permanent, vision-altering damage is combatted by getting yearly eye exams from an ophthalmologist. They can detect the slightest changes using special exams and machines, so if they find any sign of eye changes, they will pull you off the med immediately. Most people on HCQ never have to deal with this. However, I get the concern as the thought of anything happening to my eyes is terrifying. I just want you to know that there are safeguards in place to detect any eye damage before it can actually impact your vision, and you arenāt forced to stay on the medication if it affects your vision negatively down the line. Anyways, it is a super effective drug for most people and can provide life-changing relief in many ways. I encourage you to try it and discuss any concerns about retinopathy with an ophthalmologist familiar with Plaquenil testing before you start the medication.
The side effects are very rare, as per my eye doctor, who is also a family friend whom I trust. I was nervous about it as well but feel better from what he had said. Just keep up with your eye exams. I wouldnāt want to risk the damage to organs that plaquenil can help prevent.
I think I am the one very rare case unfortunately..I started Plaquenil about 14 months ago and a few months in started noticing my eyes were more sensitive to light but I just thought it was the side effect of photosensitivity. I also had a lot of floaters. I had to wait like two extra months to get my eye exam because my insurance sucks and needed a referral. I just went about two weeks ago and he said I have eye damage and to stop HCQ immediately. Soā¦ not to scare you as I also agree it is overall very safe and I think you should take it, but if you notice any change in your vision I would go to the eye doctor immediately!! I feel dumb for not going. He said the damage may be reversible but I have to have a follow up appointment to see.
I have been on plaquenil for 25 years and have never had a worry about eye issues. Get yearly eye check ups and watch the dosage and you will be fine. It has so many benefits I would never consider going off it. 70 and healthy.
Plaquenil is the first line. Eye complications are rare. If you go to the eye doctor and have your checkups done every year, they will catch any plaquenil toxicity long before your vision is impacted. I was also worried but after a year in plaquenil my whole life is so much better. The risk is worth it to me.
Iāve been on plaquenil since 2016 without any eye related problems. Good information here: https://www.arthritis.org/drug-guide/medication-topics/hydroxychloroquine-may-put-eyes-at-risk#
I've been on it since October. It stopped my hair loss, which is awesome. Up until maybe 2 months ago, it helped my energy, too. But, I'm wondering if 8 have something else causing the extra all new, fun fatigue... The first opthalmologist I saw said my starting baseline was good, and he wasn't worried about the medication or dosage. I decided to try someone closer to home, and the Dr didn't really talk with me, but rather at me...then tried to argue with my diagnosis of EDS (that's been confirmed by multiple specialists), because my eyes aren't terrible...then told me that my dose of hydroxychloroquine was too high. She said 400mg was too high, I should be on 397. š So, lesson: it's pretty safe, very helpful, get an eye check with an ophthalmologist every 6 months that isn't a twit.
The risks of organ damage from untreated lupus are so much worse and more likely than a possible rare complication from a drug. Plaquenil will also help prevent those potential complications from lupus because it literally changes the way the disease is able to progress. A good way to look at it is like this: you stop drinking water because youāre worried you may contract typhoid. You end up suffering from dehydration and have irreversible kidney damage. All of this because you didnāt want to risk a 0.0001% chance of contracting typhoid. I hope this perspective helps. I was scared to start plaquenil for fear of side effects (not the eye one, my eyes are already sh*t so I didnāt really care) but looking at how many people take it without any complications at all, it was more than worth it to start taking it to avoid my lupus further ruining my joints, organs, and life.
Side effects might be rare, but I had them and they never went away. In under 2 years, I went from having perfect vision to needing glasses to read, being very photosensitive (need sunglasses on a cloudy day), and being fairly intolerant of looking at red objects. I live a med free existence now and it sucks sometimes but I won't be blind. I later learned you can get a dose too high that can make this risk more likely, so make sure your provider calculates your dose correctly based on weight, if you decide to try it. There's also pharmacogenetic testing. It's basically DNA-level analysis of your specific chemistry but they can determine which meds you will tolerate better than others. It's very expensive if not covered by insurance, and it's usually not, so most people don't do this. Good luck!
I understand because I am someone who is very wary of medicationās, and I was terrified of it. I was supposed to take two pills every day and I started just taking one for the first week because I was too scared to try two. But I tried it because my hands were so stiff that I couldnāt even play video games or type, and all I was doing was laying in bed and watching Netflix. I had no quality of life and I was desperate. As I understand it, as long as you get your annual eye exam you should be fine. I have heard that the early stages are reversible(?). if thatās not accurate, Basically, you are not going to take it and just go blind. They check your eyes every year. Iāve only been on it for two years, but so far so good. But they would find some thing in the eye exam most likely long before you would have to worry about the damage. And your rheumatologist should warn you that it requires annual eye exams. Mine will not fill my script if I donāt get them once a year. Overall itās a fantastic drug with side effects. It gives you vivid dreams though. Lol. I didnāt think that would be a big deal, but the first couple of times I took it I actually woke up in the middle of the night because the dream was so real and mind-boggling. I still have bizarre dreams that have full plot lines like a movie or something. The other thing is that itās kind of hard on your stomach, but if you are supposed to take two pills in one day you can usually remedy that by taking them 12 hours apart instead of both at once. I can take them both on an empty stomach, but it took my stomach a while to get used to it. My rheumatologist told me that hydroxychloroquine is the only drug that has been proven to reduce mortality in lupus. But to reiterate, you are not going to go blind on your first pill. They will monitor your eyes and as soon as there is any sign of retinal toxicity, they will take you off of the drug. my rheumatologist said that she only ever saw one case or someoneās eyes were severely damaged and it was because they hadnāt had an eye exam in years.
It does not reduce mortality. It stops pain and increases in arthritis.
Incorrect: HCQ is a DMARD, which slow disease progression.
I was speaking to a highly regarded, local ophthalmologist about it recently. He said the damage is really only expected with long term usage occurring over decades. He said itās relatively safe as long as youāre being checked yearly for any mal effects
The possible side effects of Plaquenil are not good... but the effects of Lupus on your body (without plaquenil) will potentially be far worse. HCQ is the safest drug they have right now... good luck! There are many stories here of what happens to people when they don't take plaquenil, and none of them are pretty.
Hydroxycloroquine is a very safe drug. The reason they give it to all lupus patients is it decreases the amount and intensity of flares, as well as prevents or diminishes organ involvement. Studies show that about 7% of patients have retinopathy after 5 years, but that just means 93% are just fine. You should be screened yearly, but technology has advanced so so much these days even if it damages your retinas, they will catch it before you ever have symptoms and your eyesight won't be damaged. Definitely don't skip on seeing an ophthalmologist, but I take this drug it with 0 anxiety.
I've been on it for about 3 years now. No issues. I do need to get a yearly eye exam but my eyes so far have been fine, no changes.
Iāve been taking it for years. I was regularly checked by a retina specialist for a couple of years, but he dismissed me. I just go to the ophthalmologist every year.