Can anyone tell me what are the long term effects of taking plaquenil, when taking it for lupus? After taking it for at least 10 years, I was just wondering. It is the only med I have taken that seems to help. I have tried to stop taking it at intervals, but all my systems come back after three weeks of not taking it. I still get the lesions on my face, but not as severe as when I don’t take the plaquenil
My Dr said to make sure that my sight is checked often, since apparently it can cause blindness if taken for many years.
The long term affect from taking plaquenil is that it will cause sight loss. I go to see my opthamalogist every three months. He has to check my vision to make sure it isn’t damaging my eyes.
From my understanding sight damage is extreemely rare at the small dose we take. My eye dr has never seen it happen. Are you experincing some problems?
It can cause vision problems. You are supposed to get your eyes checked every 6 months.
Thanks so much for the responses on my question about the placquenil. I haven't had any problems with my vision except for the aging process, again thanks to everyone that replied. I will make an appointment with my eye DR. I haven't been for a couple of years
I was taking plaquenil for about 8 years or so. It was the only drug that I was able to tolerate, but after I was on it for such a long time, I started having bad side effects. My hair fell out in spots, my eyebrows didn’t seem to be there anymore (I read somewhere a side effect is hair bleaching), my legs started to feel like lead, I was confused in thoughts (I was asked a question and gave the wrong answer even knowing it was wrong), my hands seemed like they had too my skin n my knuckles were white while my hands were red. One of my doctors told me to take a break from the drug for a month. He said I would have some ease of mind and while on the break, I was doing very well. Until my other doctor (a dermatologist) gave me a new sunblock, which I ended up allergic to and I went right back to square one. I tried to go back to plaquenil, but I was waking up with my hands feeling like pins and needles (something I had experienced before with plaquenil). My eye sight was checked and there was no damage, but I was told that if the plaquenil did alter my sight, I would just have to stop taking it for my sight to return to normal…
I didn't realize that these side effects were from Plaquenil. I can live without some of my unruly hair, but losing my eyebrows has been a drag, a word I use because when I tried to draw some on myself, I looked like a Joan Crawford transvestite, which even scared my dogs. My husband and I couldn't stop laughing.
I also have a lot of sloughing skin, particularly on my hands, elbows, knees and feet. Is this another side effect of Plaquenil or from lupus itself (I have SLE)? pax, pj
I had always thought it was the lupus that caused my hair to fall out, my dry skin on hands and elbows, and my “lack of” eyebrows…
Then I googled hair loss and plaquenil. One of the results was someone answering a post stating “they should have told you the side effects of plaquenil” and in the list, they added hair loss (which I thought plaquenil was supposed to help fix) and hair bleaching.
When I saw “hair bleaching,” it was then that I went oooooh so THAT’S what happened to my eyebrows! It was like an epiphany! Lol
Once I was off plaquenil …after being on it for so many years, my eyebrows got darker, the pains in my legs went away (the pains that made it seem impossible to walk up steps), my swollen hands…with what seemed like extra skin (so hard to explain lol), went back to normal.
Even my joint pain seemed to subside.
I am currently going through a flare and even though I have the butterfly rash n redness on most of my face, I haven’t returned to plaquenil (for about 5 months now) and none of those symptoms have troubled me since. So, I am just assuming it had to be the plaquenil.
Right now I am on an alternating dose of 20/10 mg of prednisone and just yesterday I had my first benlysta infusion.
The only thing is I sometimes have the white knuckles, so that can’t be from plaquenil, but IMO everything else seems to have been. Oh, as well as the tingling in my hands in the mornings that at one point one of my doctors told me to wear those arm brace things they give to people for carpal whatever lol while I sleep…I haven’t had that since getting off plaquenil ::knocks on wood::
pjarden said:
I didn’t realize that these side effects were from Plaquenil. I can live without some of my unruly hair, but losing my eyebrows has been a drag, a word I use because when I tried to draw some on myself, I looked like a Joan Crawford transvestite, which even scared my dogs. My husband and I couldn’t stop laughing.
I also have a lot of sloughing skin, particularly on my hands, elbows, knees and feet. Is this another side effect of Plaquenil or from lupus itself (I have SLE)? pax, pj
Yikes, I have wicked pins and needles (tingling) in my arms in the morning too. Sometimes it takes as much as 20 minutes to completely subside. It's actually a relief to discover it's only a Plaquenil side-effect and not just poor circulation due to some mysterious. lurking heart condition, which is what I sometimes feared. pax & hugs, pj
The pins and needles drive me nuts for months!
Then with this most recent flare, I tried to put myself back on plaquenil and the first two days I tried, I woke up in the morning with the pins and needles n said never mind!
That’s y I pray this benlysta is the answer because if it isn’t, I will have no choice but to return to plaquenil.
It was much easier on me than alll of the other drugs I tried…to include imuran, methotrexate, some other chemo pill, etc etc .oh and dapsone which put me in the hospital for 4 days after a week of fevers ranging from 102 to 105 nonstop bc unbeknownst to me, I was allergic! Lol
pjarden said:
Yikes, I have wicked pins and needles (tingling) in my arms in the morning too. Sometimes it takes as much as 20 minutes to completely subside. It’s actually a relief to discover it’s only a Plaquenil side-effect and not just poor circulation due to some mysterious. lurking heart condition, which is what I sometimes feared. pax & hugs, pj
I'll light a candle for you and pray that it works for you tomorrow afternoon at church. Keep the faith and please let me know how you do on it. Now, I'm going to try to lie down for a couple hours and read so my Jack Russell puppy can relax and stop chewing my new printer cables, which I've already had to replace after he proudly displayed his handiwork when my printer went dead twice this past week. In the meantime, I'm sending you some video inspiration by one of my favorite R&B artists. Hope you enjoy!
pjardenful has shared a video with you on YouTube:
I had a reaction to the Plaquinil first time I used it. after the first week, the pericarditis started kicking in every day. I quit taking it, and told the Dr, and he said I had to try, or the Lupus would go faster and faster. He was already worried about my general health. I had the Lupus symptoms since my early 30s-lack of good sleep-and I was 61, and had never taken anything for it. Just avoided the allergens. I did start back with the Plaquinil again, with no bad effects that time, and been taking it ever since.
Laura said:
The pins and needles drive me nuts for months!
Then with this most recent flare, I tried to put myself back on plaquenil and the first two days I tried, I woke up in the morning with the pins and needles n said never mind!
That's y I pray this benlysta is the answer because if it isn't, I will have no choice but to return to plaquenil.
It was much easier on me than alll of the other drugs I tried...to include imuran, methotrexate, some other chemo pill, etc etc .oh and dapsone which put me in the hospital for 4 days after a week of fevers ranging from 102 to 105 nonstop bc unbeknownst to me, I was allergic! Lol
pjarden said:Yikes, I have wicked pins and needles (tingling) in my arms in the morning too. Sometimes it takes as much as 20 minutes to completely subside. It's actually a relief to discover it's only a Plaquenil side-effect and not just poor circulation due to some mysterious. lurking heart condition, which is what I sometimes feared. pax & hugs, pj
Thank you and I will pray for you as well.
The computer wires issue sounds like something my poodle would do! Lol
Thank you for your kind words xoxo
pjarden said:
I’ll light a candle for you and pray that it works for you tomorrow afternoon at church. Keep the faith and please let me know how you do on it. Now, I’m going to try to lie down for a couple hours and read so my Jack Russell puppy can relax and stop chewing my new printer cables, which I’ve already had to replace after he proudly displayed his handiwork when my printer went dead twice this past week. In the meantime, I’m sending you some video inspiration by one of my favorite R&B artists. Hope you enjoy!
pjardenful has shared a video with you on YouTube:
Those symptoms I felt with the plaquenil were after my doctor had upped my dose from 1 to 2 a day.
Which I believe is the normal dosage. When I was only taking 1 a day, it was fine, but my face kept getting worse.
RJQ said:
I had a reaction to the Plaquinil first time I used it. after the first week, the pericarditis started kicking in every day. I quit taking it, and told the Dr, and he said I had to try, or the Lupus would go faster and faster. He was already worried about my general health. I had the Lupus symptoms since my early 30s-lack of good sleep-and I was 61, and had never taken anything for it. Just avoided the allergens. I did start back with the Plaquinil again, with no bad effects that time, and been taking it ever since.
Laura said:The pins and needles drive me nuts for months!
Then with this most recent flare, I tried to put myself back on plaquenil and the first two days I tried, I woke up in the morning with the pins and needles n said never mind!
That's y I pray this benlysta is the answer because if it isn't, I will have no choice but to return to plaquenil.
It was much easier on me than alll of the other drugs I tried...to include imuran, methotrexate, some other chemo pill, etc etc .oh and dapsone which put me in the hospital for 4 days after a week of fevers ranging from 102 to 105 nonstop bc unbeknownst to me, I was allergic! Lol
pjarden said:Yikes, I have wicked pins and needles (tingling) in my arms in the morning too. Sometimes it takes as much as 20 minutes to completely subside. It's actually a relief to discover it's only a Plaquenil side-effect and not just poor circulation due to some mysterious. lurking heart condition, which is what I sometimes feared. pax & hugs, pj
Pjarden,
I enjoyed the video, because anything is possible if we just believe. We go through hard times, and sometimes the medication cause me problems just like the illness, but I let my doctor know he usually will take me off the medicatiomn such as plaquenil and cellcept and changed to imuran. It cause stomach distress so I had to discopntune it also.
Laura said:
Thank you and I will pray for you as well.
The computer wires issue sounds like something my poodle would do! Lol
Thank you for your kind words xoxo
pjarden said:I'll light a candle for you and pray that it works for you tomorrow afternoon at church. Keep the faith and please let me know how you do on it. Now, I'm going to try to lie down for a couple hours and read so my Jack Russell puppy can relax and stop chewing my new printer cables, which I've already had to replace after he proudly displayed his handiwork when my printer went dead twice this past week. In the meantime, I'm sending you some video inspiration by one of my favorite R&B artists. Hope you enjoy!
pjardenful has shared a video with you on YouTube:
I'm pleased you enjoyed the video. Jonny Lang sings a lot of good blues songs, but the two that help me most when I'm struggling are the one I posted here (Anything's Possible) and the other I've included the link below because it reminds me to be grateful for what I have in life and even when I'm suffering because I know there's more than a few other people in our group who've experienced more serious complications from their conditions. Hope you like this one too...
pjardenful has shared a video with you on YouTube:
Nellatator said:
Pjarden,
I enjoyed the video, because anything is possible if we just believe. We go through hard times, and sometimes the medication cause me problems just like the illness, but I let my doctor know he usually will take me off the medicatiomn such as plaquenil and cellcept and changed to imuran. It cause stomach distress so I had to discopntune it also.
Laura said:Thank you and I will pray for you as well.
The computer wires issue sounds like something my poodle would do! Lol
Thank you for your kind words xoxo
pjarden said:I'll light a candle for you and pray that it works for you tomorrow afternoon at church. Keep the faith and please let me know how you do on it. Now, I'm going to try to lie down for a couple hours and read so my Jack Russell puppy can relax and stop chewing my new printer cables, which I've already had to replace after he proudly displayed his handiwork when my printer went dead twice this past week. In the meantime, I'm sending you some video inspiration by one of my favorite R&B artists. Hope you enjoy!
pjardenful has shared a video with you on YouTube: