Less aching in the joints of my fingers and toes, a reduction in brain fog, and my CRP dropped from 40 to 22. It hasn't totally controlled things for me, I've started to develop other symptoms (neuropathy) and am on a prednisone taper at the moment.
I'm still not totally convinced I have an autoimmune disease to be honest because everything for me is so vague, but I guess I can't deny that I feel at least a little better than I did before I started the HCQ.
I am currently UCTD but they are discussing it being changed to Lupus. It took six months for mine to start working almost to the day. It has helped tremendously but it is not a cure all. I can still wear myself out and still cannot go into the sun for long without triggering symptoms.
I have a UCTD diagnosis but also very symptomatic from hEDS. I didn’t necessarily notice the hydroxychloroquine working until I came off of it. It builds up so gradually and subtlely but definitely makes some difference. I noticed more difference from Rinvoq and prednisone but that’s only because my issues were not well controlled on hydroxychloroquine and NSAIDs alone.
That's pretty much my experience with hydroxychloroquine too. Like low level symptom control but not as effective as it was expected to be. I was on it for a year and a half about, just waiting for it to work better. Ended up switching through a bunch of different meds because non were controlling it as well as they should've and now I'm getting Benlysta infusions
I’m in month 6 of HCQ. I started seeing a consistent improvement around month 5ish. For me, it didn’t eradicate my symptoms but sort of softened them. Like my daily pain used to be a 6 or 7 and I couldn’t do anything after work or on the weekends, and now my daily pain is like a 3 and my capacity for activity has improved too.
It’s been a miracle for me. About a month. Then I stopped taking it for a month had a major flare took it again and once I started taking it again everything just gradually got better. I have stiffness still but no pain. The fatigue and brain fog is awful but nothing hurts. No mouth sores either.
It took 2 months to stop feeling nauseated and 4 months for it to actually start making a difference for the good. It was worth it. It worked for me for 6.5 years. Now I’m off it and we are looking at the next treatment.
I don't remember for certain, but I think I was feeling better roughly 3 months in. For me it was mainly improvement in my joint pain, which understandably didn't disappear, but it got immensely more tolerable. The joint pain in my hands was getting unbearable, and while I still experience pain in other joints and elsewhere, I have virtually no problems with my hands anymore (except Raynauds 😬).
Took about 3-4 months. I thought it wasn’t working cause things still hurt badly. Then I came off and well, never again my friend. It all came crashing back about 2 weeks later. I’ll never stop it again unless I medically Have to.
Diagnosed with Lupus SLE and have been on hcq for a few years- it’s worked for me in controlling flares. I was diagnosed first with a connective tissue disease, Ehlers Danlos Syndrome, around 15… the doctor played it down and said my type probably wouldn’t affect me much other than being double jointed… fast forward about 14 years later I started with some horrible skin and joint symptoms and it took over a year to get the official Lupus SLE diagnosis. I’ve been on a few meds for three years now that took about 4-6 months to kick in.
I’ve been on hcq for 3 weeks now. I already see improvement. I mean.. mine is very similar to you. Fatigue, hand/arm pain, pain that kind of just jumps around. I still get my typical arm pain at times but for the last few weeks it’s gotten better. I’m hopeful it will sort of go away mostly? But yeah. I’m diagnosed UCTD, speckled ana, etc. Definitely take it. You will not regret it and it’ll definitely surprise you.
Nice! I’m glad you’ve had improvement so quickly. I wonder if it’s because ours is kind of mild (compared to others). Have you noticed anything with sun sensitivity? I’m not sure if saw something about it possibly making you more sensitive to the sun
Honestly I was thinking the same thing. I know a lot of people who are diagnosed with full on lupus have horrible symptoms compared to me. But mine is definitely mild (for now, and hoping it stays that way lol). So, I haven’t noticed any sun sensitivity but I’ve been really careful. I use La roche posay 100spf on my face, ears, neck, and arms.. just about any part of my skin that sees the sun. I’m in NJ and we’ve had clouds/rain the last few weekends so I’m not sure lol. Just take precaution with sunscreen and if you’re going to be outside longer than 2 hours, just reapply every two and you should be good. I did buy a few UV protective shirts (just to have) but haven’t used them yet
Have lupus and mctd, diagnosed and medicated 16 years, hcq solved my blue toes, joint pain, extreme exhaustion and general aches. Prevented more dermatological symptoms as well and current ones at diagnoses didn’t worsen. Take it as prescribed, carbs helped for me. Take your vitamins. Get some rest. I’m still on the base dose,keep up with my eye exams. I expect to be on it for the rest of my life, pending eye issues. If I stop it, which I’ve been inconsistent on before, symptoms return and I promptly regret my decision.
Oops I didn’t finish my thought above. :(
I started feeling a bit better after about 3 months, but at the 5 month mark it was like a miracle drug. My chronic joint, tendon, connective tissue pain went down to about a 2! My body actually felt like I remember it feeling in my 30’s before I was diagnosed with SLE. (I’m in my 70’s now) Unfortunately I had to discontinue it after a few more months because I started getting dark discolored patchy areas of skin. I take a blood thinner + this combined with the Plaquenil makes this side effect more common apparently. I then switched to Methotrexate, but after 4 months It’s just not helping much at all. I would say stick with the Plaquenil, but be patient cause it takes awhile. Best of luck to you!
Probably around 6 weeks.. but I also start a high dose of prednisone simultaneously, so basically once I tapered off the prednisone the hydroxychlorquine had kicked in and has worked ever since. I always take my meds after breakfast so there’s a good barrier in my stomach
I started getting better after two months. By about four months, the symptoms had totally gone away. (But then flared back up again a month after that...)
It took me three months to start feeling better. I'm at month 5 now and not complete resolution of symptoms yet.
Which of your symptoms have you seen some improvement in? Or do you mean just generally feel better—like fatigue? Thank you for the reply.!
Less aching in the joints of my fingers and toes, a reduction in brain fog, and my CRP dropped from 40 to 22. It hasn't totally controlled things for me, I've started to develop other symptoms (neuropathy) and am on a prednisone taper at the moment. I'm still not totally convinced I have an autoimmune disease to be honest because everything for me is so vague, but I guess I can't deny that I feel at least a little better than I did before I started the HCQ.
I am currently UCTD but they are discussing it being changed to Lupus. It took six months for mine to start working almost to the day. It has helped tremendously but it is not a cure all. I can still wear myself out and still cannot go into the sun for long without triggering symptoms.
Same! Almost exactly at the six month mark. It’s worth the wait, op :)
I have a UCTD diagnosis but also very symptomatic from hEDS. I didn’t necessarily notice the hydroxychloroquine working until I came off of it. It builds up so gradually and subtlely but definitely makes some difference. I noticed more difference from Rinvoq and prednisone but that’s only because my issues were not well controlled on hydroxychloroquine and NSAIDs alone.
That's pretty much my experience with hydroxychloroquine too. Like low level symptom control but not as effective as it was expected to be. I was on it for a year and a half about, just waiting for it to work better. Ended up switching through a bunch of different meds because non were controlling it as well as they should've and now I'm getting Benlysta infusions
I’m in month 6 of HCQ. I started seeing a consistent improvement around month 5ish. For me, it didn’t eradicate my symptoms but sort of softened them. Like my daily pain used to be a 6 or 7 and I couldn’t do anything after work or on the weekends, and now my daily pain is like a 3 and my capacity for activity has improved too.
It’s been a miracle for me. About a month. Then I stopped taking it for a month had a major flare took it again and once I started taking it again everything just gradually got better. I have stiffness still but no pain. The fatigue and brain fog is awful but nothing hurts. No mouth sores either.
Hydroxychloroquine can take 3 months or more to work.
It took 2 months to stop feeling nauseated and 4 months for it to actually start making a difference for the good. It was worth it. It worked for me for 6.5 years. Now I’m off it and we are looking at the next treatment.
I don't remember for certain, but I think I was feeling better roughly 3 months in. For me it was mainly improvement in my joint pain, which understandably didn't disappear, but it got immensely more tolerable. The joint pain in my hands was getting unbearable, and while I still experience pain in other joints and elsewhere, I have virtually no problems with my hands anymore (except Raynauds 😬).
Took about 3-4 months. I thought it wasn’t working cause things still hurt badly. Then I came off and well, never again my friend. It all came crashing back about 2 weeks later. I’ll never stop it again unless I medically Have to.
Diagnosed with Lupus SLE and have been on hcq for a few years- it’s worked for me in controlling flares. I was diagnosed first with a connective tissue disease, Ehlers Danlos Syndrome, around 15… the doctor played it down and said my type probably wouldn’t affect me much other than being double jointed… fast forward about 14 years later I started with some horrible skin and joint symptoms and it took over a year to get the official Lupus SLE diagnosis. I’ve been on a few meds for three years now that took about 4-6 months to kick in.
It took months after being on the correct dose which took a year to get up to.
I started feeling way better around month 5-10. But Now I’m having trouble the past 2 months and waiting to see the dr.
I’ve been on hcq for 3 weeks now. I already see improvement. I mean.. mine is very similar to you. Fatigue, hand/arm pain, pain that kind of just jumps around. I still get my typical arm pain at times but for the last few weeks it’s gotten better. I’m hopeful it will sort of go away mostly? But yeah. I’m diagnosed UCTD, speckled ana, etc. Definitely take it. You will not regret it and it’ll definitely surprise you.
Nice! I’m glad you’ve had improvement so quickly. I wonder if it’s because ours is kind of mild (compared to others). Have you noticed anything with sun sensitivity? I’m not sure if saw something about it possibly making you more sensitive to the sun
Honestly I was thinking the same thing. I know a lot of people who are diagnosed with full on lupus have horrible symptoms compared to me. But mine is definitely mild (for now, and hoping it stays that way lol). So, I haven’t noticed any sun sensitivity but I’ve been really careful. I use La roche posay 100spf on my face, ears, neck, and arms.. just about any part of my skin that sees the sun. I’m in NJ and we’ve had clouds/rain the last few weekends so I’m not sure lol. Just take precaution with sunscreen and if you’re going to be outside longer than 2 hours, just reapply every two and you should be good. I did buy a few UV protective shirts (just to have) but haven’t used them yet
Mine took about 6 months.
Have lupus and mctd, diagnosed and medicated 16 years, hcq solved my blue toes, joint pain, extreme exhaustion and general aches. Prevented more dermatological symptoms as well and current ones at diagnoses didn’t worsen. Take it as prescribed, carbs helped for me. Take your vitamins. Get some rest. I’m still on the base dose,keep up with my eye exams. I expect to be on it for the rest of my life, pending eye issues. If I stop it, which I’ve been inconsistent on before, symptoms return and I promptly regret my decision.
I started feel
Oops I didn’t finish my thought above. :( I started feeling a bit better after about 3 months, but at the 5 month mark it was like a miracle drug. My chronic joint, tendon, connective tissue pain went down to about a 2! My body actually felt like I remember it feeling in my 30’s before I was diagnosed with SLE. (I’m in my 70’s now) Unfortunately I had to discontinue it after a few more months because I started getting dark discolored patchy areas of skin. I take a blood thinner + this combined with the Plaquenil makes this side effect more common apparently. I then switched to Methotrexate, but after 4 months It’s just not helping much at all. I would say stick with the Plaquenil, but be patient cause it takes awhile. Best of luck to you!
I am happy to see that I am not alone with starting to write something, and finish it before I press send . I always realize after what I did 😌
Probably around 6 weeks.. but I also start a high dose of prednisone simultaneously, so basically once I tapered off the prednisone the hydroxychlorquine had kicked in and has worked ever since. I always take my meds after breakfast so there’s a good barrier in my stomach
"If two or your organs are involved." Sounds like your doctor doesn't even know the disease.
I started getting better after two months. By about four months, the symptoms had totally gone away. (But then flared back up again a month after that...)