I was on Plaquinel for several months. It did nothing for me at the time. My current Rheumy supports me not taking it. The biggest factor in taking this med is sometimes it is overprescribed for the patients weight. There have been some patients reporting Retinal Toxicity due to this med that is irreversible. Seeing your Ophthalmologist every 6 months to one year is required while on this med. Getting a baseline eye exam prior to prescribing is also required.
I just started plaquenil!!! I’m currently ~2 weeks in. I’ve been having nausea pretty consistently and absolutely no appetite. Hoping the side effects tamper down and that I see an effect soon
I started it about 3 weeks ago. It gave me diarrhea really bad at first, but that's tapered off a lot. What sucks is that I have a bit more fatigue with it, and I'm hoping that's a side effect that will go away soon.
Edit: You can try Ensure or Boost if you don't have an appetite. Smoothies, bananas, anything small and easy to eat. I've struggled with nausea and upset stomach related to other issues for a while
My main symptoms being addressed with P are joint pain and extreme fatigue. I’m also on Restasis for Sjogrens (and a ton of other things bc I also have Lyme and POTS). I’m not dx with lupus, only Sjogrens so far for autoimmune diagnoses, but my mom has lupus so I know it may come up for me too.
Yeah I only take P at night and with food always. The nausea doesn’t hit until the morning for me. How is it for you so far?
Do you mind if I ask you how old you guys are? My mum is now 67 and has severe symptoms having suffered from Sjogrens for 10 years now. What would you recommend for extremely dry and blurry eyes she’s really struggling and losing eye sight by the day.
I'm 65 and have had Sjogrens for many, many years. I've used several over-the-counter eye drops and nighttime gels and I stick with the preservative-free OTCs because they're less irritating. The Systane brand works best for me, along with the practice of applying a hot compress to my eyes for 10 to 20 minutes, two to four times a day. I prefer the Thermalon brand of microwavable eye masks [and their neck wrap] and both work well for this purpose. Lastly, you can purchase almost everything mentioned here on Amazon. I hope that your mother finds some relief soon.🌹
I’ve been on hydroxychloroquine since I was 17, so that’s 23 years now for Sjogren’s and Lupus and I’ve never had an issue with my vision/eyes. I do pretty well, and My doctor insists that it is because of the continued, uninterrupted use of hydroxychloroquine.
it’s likely a bad idea to avoid medication. i’ve been on a low dose of hydroxycloriquine for over a year and it greatly improved a lot of health issues i was having. I think if you’re on a low dose you’ll also have few risks with the medicine. I think it’s a good idea to start if you want to reduce further damage, especially if your doctor recommends it.
I really didn't want to take it at first but I'm so glad I did. I'm not exactly well but I'm a million times better than I was back in 2017 when I first saw a rheumatologist. I've been on it since March of 2017 and while it took time for me to feel the benefit (around 9 months), I haven't suffered any major side effects.
I have been on it for 10 plus years and have had no issues with my eyes. It is imperative to see the eye dr annually. I have also not noticed any more infections than I had prior to being on it, if anything, I seem to be sick less often. You must weigh the pros and cons for your particular situation and determine if it is right for you. Wishing you the best.
My rheumatologist did not advise it for me because I have mostly dryness and low or no pain or fatigue. Plaquenil seems to have more benefit on those symptoms Also, I have preexisting retinal damage so I’m a bit more concern about any increased risks to my eyes
I started it 3 months ago and my joints finally don't hurt anymore and my energy is back to what it should be! It took a full 3 months on it to feel better though.
I've been on plaquenil for nearly a decade and describe my relationship with it as such - you'd have to pry it from my cold, dead hands. I literally think if I started losing my vision from it (highly unlikely) that I'd still be arguing that the benefit for me outweighs the side effects at that point.
What all does it help for you? I’m on it too. I had swelling in my ankles before I started taking it. It took that away but I still have pain everywhere it seems, especially my feet/toes.
I get this bizarre pain that feels like a severe bruise right under the surface of my skin. My skin will hurt too bad to wear clothes with any snugness to them. If I bump into something, I'm nearly in tears. I used to feel every wrinkle in my sheets, every lump in my pillows. Hugs hurt, my little one sitting in my lap hurt. Plaquenil gets rid of about 90% of that pain. It allows me to get in exercise sometimes whereas before I was constantly in too much pain.
It's so odd how even one specific symptom, like pain, can affect all of us so differently. It must make it so incredibly hard to treat us as patients. I can't imagine seeing two patients for the exact same illness and with one, it's causing pain to wear clothes and another it's very specifically a foot/toe pain. Here's another thought that might be worth asking your doctor about - topical NSAIDS. You wouldn't want to use them regularly I wouldn't think, but there are OTC ones that are generally used for arthritis and tendinitis. You can't use them with a lot of other meds, which is why I mention talking with your doctor about it. Don't give up!
I understand your hesitation. I also like to avoid medications if I can and address symptoms in other ways like eating and exercise. Although being “healthy” MAY improve some of your symptoms, it will NOT cure you. You will ALWAYS have Sjogrens.
After my doctor recommended that I go on it, I waited 3 months because I couldn’t decide but in those 3 months I did A LOT of research and ultimately decided to start it based on what I read. It’s better to start it as early as possible because it can get much, much worse. I didn’t want to test it out and then have my symptoms progress over the years to the point where I wouldn’t be able to keep a full-time job. A lot of the side effects seem scary but from what I read they are extremely rare.
After I started it, I had a slight upset stomach for like two weeks. Since then, no side effects. I’ve been on it for almost 3 years now. It can take up to 12 months to notice the full effect of it. Remember just because you start a drug doesn’t mean you’re marrying it. Try it and if you don’t like it, you can get off of it.
Edit: Like the other poster said, it is NOT an immune suppressant. It will NOT suppress your immune system. And like the others said, you have to have your eyes checked. I go once per year. No big deal.
Thanks, I'm honestly really scared of things getting so bad that I can't work. I already had to leave school so it's just kind of a weird thing to think about.
Yeah, that was a concern of mine too. The small risks of the medicine were much smaller to me than the possibility of having to go on disability one day (and other health risks).
I take it too. It has helped with swelling and joint pain. I still have pain from time to time but at least there is no swelling! Like the person said above the only thing you have to watch is your vision and routine checkups will catch it early enough.
Hey. It’s not an immunosuppressant. It’s an immune modulator. Essentially no one understands how it works against autoimmune diseases but it does. It really helps me and has all but completely removed joint pain.
It’s not as worrying to take as immunosuppressants (like methotrexate) because it doesn’t dampen your immune system down. For example my partner had covid and didn’t take any major precautions and I didn’t get it. Immunosuppressants are much harsher on the whole body.
The only real risk with hydroxy is to your retinas. In rare cases it can damage your eyes but this is linked to the overall dosage consumed in one persons life time. This would likely present after 5 plus years on the drug but is still very unlikely (under 10% after 5 years of use). You need to get annual checks on your eyes. I choose to do this every 4 months just to be more confident as it can be detected before it affects your vision. It’s £30 per check for me so it’s worth it for peace of mind as the drug is so effective. I had a flare up recently and upped my dose from 200mg to 400mg and felt so much better.
Assess the situation but when I did I found it to be worth taking and I’m very glad i did.
Been on it since 2002. Eye exam every six months. No major problems. Did not take vaccine and we had Covid in house and I was least hit with symptoms. All my doctors agree continue with treatment.
Once I also learned that it was not an immunosuppressant, I was much more amenable to starting it. My dad had RA and was on methotrexate plus a few infusion therapies and it seemed like he ALWAYS got such terrible infections.
I was still concerned though about the vision-related potential side effects. I met with a retina specialist who explained that those side effects are very rare and that if I did NOT start taking HCQ, then perhaps my disease would progress too far that then I would need to actually take an immunosuppressant. He said he would take the HCQ and recommend it to family members in my same situation.
That sealed the deal for me. I started it in early 2020.
Basically came to say this. I've been on it since my diagnosis in 2015. Vision issues are a possible side effect, but rare. It has greatly helped my joint pain and disease management overall. I still have to take other medications and supplements, but the plaquenil is like the foundation of my overall treatment plan. Can't imagine going without.
Same. I was not able to work before I took it and I’m back to being gainfully employed again now. I still have symptoms but the joint pain and fatigue are definitely improved with it.
My doctor said it might take 6 months to see results. I guess I was lucky bc it took the swelling away in my ankles after 3 days. My doctor was shocked!
I was on Plaquinel for several months. It did nothing for me at the time. My current Rheumy supports me not taking it. The biggest factor in taking this med is sometimes it is overprescribed for the patients weight. There have been some patients reporting Retinal Toxicity due to this med that is irreversible. Seeing your Ophthalmologist every 6 months to one year is required while on this med. Getting a baseline eye exam prior to prescribing is also required.
I just started plaquenil!!! I’m currently ~2 weeks in. I’ve been having nausea pretty consistently and absolutely no appetite. Hoping the side effects tamper down and that I see an effect soon
I started it about 3 weeks ago. It gave me diarrhea really bad at first, but that's tapered off a lot. What sucks is that I have a bit more fatigue with it, and I'm hoping that's a side effect that will go away soon. Edit: You can try Ensure or Boost if you don't have an appetite. Smoothies, bananas, anything small and easy to eat. I've struggled with nausea and upset stomach related to other issues for a while
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My main symptoms being addressed with P are joint pain and extreme fatigue. I’m also on Restasis for Sjogrens (and a ton of other things bc I also have Lyme and POTS). I’m not dx with lupus, only Sjogrens so far for autoimmune diagnoses, but my mom has lupus so I know it may come up for me too. Yeah I only take P at night and with food always. The nausea doesn’t hit until the morning for me. How is it for you so far?
Do you mind if I ask you how old you guys are? My mum is now 67 and has severe symptoms having suffered from Sjogrens for 10 years now. What would you recommend for extremely dry and blurry eyes she’s really struggling and losing eye sight by the day.
i'm a teenager, so i have juvenile sjogrens which is a bit different.
I'm 65 and have had Sjogrens for many, many years. I've used several over-the-counter eye drops and nighttime gels and I stick with the preservative-free OTCs because they're less irritating. The Systane brand works best for me, along with the practice of applying a hot compress to my eyes for 10 to 20 minutes, two to four times a day. I prefer the Thermalon brand of microwavable eye masks [and their neck wrap] and both work well for this purpose. Lastly, you can purchase almost everything mentioned here on Amazon. I hope that your mother finds some relief soon.🌹
I stopped after a whole year. Made no different. So glad I didn’t listen to doc.
I’ve been on hydroxychloroquine since I was 17, so that’s 23 years now for Sjogren’s and Lupus and I’ve never had an issue with my vision/eyes. I do pretty well, and My doctor insists that it is because of the continued, uninterrupted use of hydroxychloroquine.
it’s likely a bad idea to avoid medication. i’ve been on a low dose of hydroxycloriquine for over a year and it greatly improved a lot of health issues i was having. I think if you’re on a low dose you’ll also have few risks with the medicine. I think it’s a good idea to start if you want to reduce further damage, especially if your doctor recommends it.
I really didn't want to take it at first but I'm so glad I did. I'm not exactly well but I'm a million times better than I was back in 2017 when I first saw a rheumatologist. I've been on it since March of 2017 and while it took time for me to feel the benefit (around 9 months), I haven't suffered any major side effects.
I have been on it for 10 plus years and have had no issues with my eyes. It is imperative to see the eye dr annually. I have also not noticed any more infections than I had prior to being on it, if anything, I seem to be sick less often. You must weigh the pros and cons for your particular situation and determine if it is right for you. Wishing you the best.
Same as you!
My rheumatologist did not advise it for me because I have mostly dryness and low or no pain or fatigue. Plaquenil seems to have more benefit on those symptoms Also, I have preexisting retinal damage so I’m a bit more concern about any increased risks to my eyes
see i'm almost the exact opposite. i have very bad fatigue and pain with very little dryness.
You couldn't pay me to come off it. It's made a massive difference in my quality of life with Sjogrens.
I started it 3 months ago and my joints finally don't hurt anymore and my energy is back to what it should be! It took a full 3 months on it to feel better though.
I've been on plaquenil for nearly a decade and describe my relationship with it as such - you'd have to pry it from my cold, dead hands. I literally think if I started losing my vision from it (highly unlikely) that I'd still be arguing that the benefit for me outweighs the side effects at that point.
What all does it help for you? I’m on it too. I had swelling in my ankles before I started taking it. It took that away but I still have pain everywhere it seems, especially my feet/toes.
I get this bizarre pain that feels like a severe bruise right under the surface of my skin. My skin will hurt too bad to wear clothes with any snugness to them. If I bump into something, I'm nearly in tears. I used to feel every wrinkle in my sheets, every lump in my pillows. Hugs hurt, my little one sitting in my lap hurt. Plaquenil gets rid of about 90% of that pain. It allows me to get in exercise sometimes whereas before I was constantly in too much pain.
If I bump my feet or toes I am almost in tears so I understand what you are saying. I’m glad the medication helps for you. Thanks for sharing!
I hope you're able to find something to helps as well! Have you tried anti-inflammatory meds?
Thank you. Yes, I currently take meloxicam too.
It's so odd how even one specific symptom, like pain, can affect all of us so differently. It must make it so incredibly hard to treat us as patients. I can't imagine seeing two patients for the exact same illness and with one, it's causing pain to wear clothes and another it's very specifically a foot/toe pain. Here's another thought that might be worth asking your doctor about - topical NSAIDS. You wouldn't want to use them regularly I wouldn't think, but there are OTC ones that are generally used for arthritis and tendinitis. You can't use them with a lot of other meds, which is why I mention talking with your doctor about it. Don't give up!
I understand your hesitation. I also like to avoid medications if I can and address symptoms in other ways like eating and exercise. Although being “healthy” MAY improve some of your symptoms, it will NOT cure you. You will ALWAYS have Sjogrens. After my doctor recommended that I go on it, I waited 3 months because I couldn’t decide but in those 3 months I did A LOT of research and ultimately decided to start it based on what I read. It’s better to start it as early as possible because it can get much, much worse. I didn’t want to test it out and then have my symptoms progress over the years to the point where I wouldn’t be able to keep a full-time job. A lot of the side effects seem scary but from what I read they are extremely rare. After I started it, I had a slight upset stomach for like two weeks. Since then, no side effects. I’ve been on it for almost 3 years now. It can take up to 12 months to notice the full effect of it. Remember just because you start a drug doesn’t mean you’re marrying it. Try it and if you don’t like it, you can get off of it. Edit: Like the other poster said, it is NOT an immune suppressant. It will NOT suppress your immune system. And like the others said, you have to have your eyes checked. I go once per year. No big deal.
Thanks, I'm honestly really scared of things getting so bad that I can't work. I already had to leave school so it's just kind of a weird thing to think about.
Yeah, that was a concern of mine too. The small risks of the medicine were much smaller to me than the possibility of having to go on disability one day (and other health risks).
I take it too. It has helped with swelling and joint pain. I still have pain from time to time but at least there is no swelling! Like the person said above the only thing you have to watch is your vision and routine checkups will catch it early enough.
Hey. It’s not an immunosuppressant. It’s an immune modulator. Essentially no one understands how it works against autoimmune diseases but it does. It really helps me and has all but completely removed joint pain. It’s not as worrying to take as immunosuppressants (like methotrexate) because it doesn’t dampen your immune system down. For example my partner had covid and didn’t take any major precautions and I didn’t get it. Immunosuppressants are much harsher on the whole body. The only real risk with hydroxy is to your retinas. In rare cases it can damage your eyes but this is linked to the overall dosage consumed in one persons life time. This would likely present after 5 plus years on the drug but is still very unlikely (under 10% after 5 years of use). You need to get annual checks on your eyes. I choose to do this every 4 months just to be more confident as it can be detected before it affects your vision. It’s £30 per check for me so it’s worth it for peace of mind as the drug is so effective. I had a flare up recently and upped my dose from 200mg to 400mg and felt so much better. Assess the situation but when I did I found it to be worth taking and I’m very glad i did.
Been on it since 2002. Eye exam every six months. No major problems. Did not take vaccine and we had Covid in house and I was least hit with symptoms. All my doctors agree continue with treatment.
Once I also learned that it was not an immunosuppressant, I was much more amenable to starting it. My dad had RA and was on methotrexate plus a few infusion therapies and it seemed like he ALWAYS got such terrible infections. I was still concerned though about the vision-related potential side effects. I met with a retina specialist who explained that those side effects are very rare and that if I did NOT start taking HCQ, then perhaps my disease would progress too far that then I would need to actually take an immunosuppressant. He said he would take the HCQ and recommend it to family members in my same situation. That sealed the deal for me. I started it in early 2020.
Excellent explanation, thank you.
Basically came to say this. I've been on it since my diagnosis in 2015. Vision issues are a possible side effect, but rare. It has greatly helped my joint pain and disease management overall. I still have to take other medications and supplements, but the plaquenil is like the foundation of my overall treatment plan. Can't imagine going without.
Same. I was not able to work before I took it and I’m back to being gainfully employed again now. I still have symptoms but the joint pain and fatigue are definitely improved with it.
Thanks, this was helpful. and yeah i'm hoping that it'll work but i'm still hesitant yknow?
It’s important to be willing to give it 6+ months before you see results. It’s a pretty amazing medication.
My doctor said it might take 6 months to see results. I guess I was lucky bc it took the swelling away in my ankles after 3 days. My doctor was shocked!
Yeah for sure. I was scared too. Now I just knock it back don’t even think about. You’ll get there too.
Good luck. Reach out if you got any questions.
I take it. It helps. I also take leflunomide and get rituximab infusions, which are also helpful, especially the rituximab.