I take hydroxichlorquine for RA and so far it is helping. It’s only been a few months but so far there haven’t been any side effects to speak of. I have never taken methotrexate.
I take both for RA and have no side effects. You need labs every three months and at least annual eye exams. The combination of the two drugs has been very effective for me.
I’m on hydroxychloroquine since mid November. So not very long. So far it has not helped, I’m currently on a prednisone taper and that is definitely effective, and then on a maintenance dose of 5 mg per day until the hydroxychloroquine “kicks in”,
I'm just on hydroxychloroquine, I started early October. I've got a working diagnosis of Undifferentiated Connective Tissue disease and am HLA-b27 positive. At times I feel like my joint pain is better, but also experience debilitating fatigue. My doctor mentioned adding methotrexate, but I am on a low dose of hydroxychloroquine for now so I don't think that would happen unless a higher dose of hydroxy isn't working. My greatest pain has been in my lower back, right hand and feet, and I do think that's improving. I have a very good rheumatologist and I believe he's taking a logical approach since hydroxy has very few side effects and can do a lot of good. I hope that's helpful, I think everyone metabolizes meds differently, it's not unusual to give one a trial and then shift if needed.
I was on HCQ for RA with cutaneous vasculitis and it was spectacularly effective, dropping my blood scores into normal range.
But I also got severe facial hyperpigmentation after only 10 weeks, looking like I was wearing lipstick, eyeliner and had two black eyes as if I'd been in a boxing match. I don't think it's any coincidence, since both are caused by melanin binding with HCQ, that it went for my retinas too and I lost saturation in the centre if looking at something red. (I was testing with an A3 sheet of red card)
I wasn't going to wait for it to show on scans, that damage can't be repaired and sometimes progresses after the drug is stopped, so I stopped taking it.
I am a very rare case but a walking example that it can damage your eyes very early on, with no symptoms.
I was on Plaquenil for a long time to treat lupus. A few comments. It worked great. When my rheumatologist retired two years ago, I switched doctors and learned that the dosage he had prescribed was at least double what it should have been given my size and weight. The result, despite every six month eye exams, was damage to my retinas. I had to quit plaquenil which resulted in lots of fatigue, stiffness etc. I'm now on Benlysta which isn’t perfect but helping a lot.
My suggestion: be a strong advocate about dosage and get your eyes checked by a specialist who knows about this drug every six months, not annually. Finally, both my current rheumatologist and retinal specialist have told me that the patient shouldn’t be on plaquenil for more than 8-10 years, at most. I was on it for 13 years, my current doctors were truly horrified, and my former doctor never said anything or offered alternatives.
As always, educate yourself and be your own best advocate.
I was on HCQ for RA with cutaneous vasculitis and it was spectacularly effective, dropping my blood scores into normal range.
But I also got severe facial hyperpigmentation after only 10 weeks, looking like I was wearing lipstick, eyeliner and had two black eyes as if I'd been in a boxing match. I don't think it's any coincidence, since both are caused by melanin binding with HCQ, that it went for my retinas too and I lost saturation in the centre if looking at something red. (I was testing with an A3 sheet of red card)
I wasn't going to wait for it to show on scans, that damage can't be repaired and sometimes progresses after the drug is stopped, so I stopped taking it.
I am a very rare case but a walking example that it can damage your eyes very early on, with no symptoms.
I was on Plaquenil for a long time to treat lupus. A few comments. It worked great. When my rheumatologist retired two years ago, I switched doctors and learned that the dosage he had prescribed was at least double what it should have been given my size and weight. The result, despite every six month eye exams, was damage to my retinas. I had to quit plaquenil which resulted in lots of fatigue, stiffness etc. I'm now on Benlysta which isn’t perfect but helping a lot.
My suggestion: be a strong advocate about dosage and get your eyes checked by a specialist who knows about this drug every six months, not annually. Finally, both my current rheumatologist and retinal specialist have told me that the patient shouldn’t be on plaquenil for more than 8-10 years, at most. I was on it for 13 years, my current doctors were truly horrified, and my former doctor never said anything or offered alternatives.
As always, educate yourself and be your own best advocate.
I take hydroxichlorquine for RA and so far it is helping. It’s only been a few months but so far there haven’t been any side effects to speak of. I have never taken methotrexate.
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1 ReactionI take both for RA and have no side effects. You need labs every three months and at least annual eye exams. The combination of the two drugs has been very effective for me.
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1 ReactionI’m on hydroxychloroquine since mid November. So not very long. So far it has not helped, I’m currently on a prednisone taper and that is definitely effective, and then on a maintenance dose of 5 mg per day until the hydroxychloroquine “kicks in”,
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1 ReactionI have some issues like yours from mixed connective tissue disease. I'm on hydroxychloroquine (plaquenil). It helps with no side effects.
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1 ReactionIt’s not the side effects from hydroxychloroquine that I’m dealing with. It keytruda
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1 ReactionI'm just on hydroxychloroquine, I started early October. I've got a working diagnosis of Undifferentiated Connective Tissue disease and am HLA-b27 positive. At times I feel like my joint pain is better, but also experience debilitating fatigue. My doctor mentioned adding methotrexate, but I am on a low dose of hydroxychloroquine for now so I don't think that would happen unless a higher dose of hydroxy isn't working. My greatest pain has been in my lower back, right hand and feet, and I do think that's improving. I have a very good rheumatologist and I believe he's taking a logical approach since hydroxy has very few side effects and can do a lot of good. I hope that's helpful, I think everyone metabolizes meds differently, it's not unusual to give one a trial and then shift if needed.
-
Like -
Helpful -
Hug
3 ReactionsI was on HCQ for RA with cutaneous vasculitis and it was spectacularly effective, dropping my blood scores into normal range.
But I also got severe facial hyperpigmentation after only 10 weeks, looking like I was wearing lipstick, eyeliner and had two black eyes as if I'd been in a boxing match. I don't think it's any coincidence, since both are caused by melanin binding with HCQ, that it went for my retinas too and I lost saturation in the centre if looking at something red. (I was testing with an A3 sheet of red card)
I wasn't going to wait for it to show on scans, that damage can't be repaired and sometimes progresses after the drug is stopped, so I stopped taking it.
I am a very rare case but a walking example that it can damage your eyes very early on, with no symptoms.
-
Like -
Helpful -
Hug
3 ReactionsI was on Plaquenil for a long time to treat lupus. A few comments. It worked great. When my rheumatologist retired two years ago, I switched doctors and learned that the dosage he had prescribed was at least double what it should have been given my size and weight. The result, despite every six month eye exams, was damage to my retinas. I had to quit plaquenil which resulted in lots of fatigue, stiffness etc. I'm now on Benlysta which isn’t perfect but helping a lot.
My suggestion: be a strong advocate about dosage and get your eyes checked by a specialist who knows about this drug every six months, not annually. Finally, both my current rheumatologist and retinal specialist have told me that the patient shouldn’t be on plaquenil for more than 8-10 years, at most. I was on it for 13 years, my current doctors were truly horrified, and my former doctor never said anything or offered alternatives.
As always, educate yourself and be your own best advocate.
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6 Reactions@cptrayes curious what dosage were you on?
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1 Reaction@2penelope curious what dosage were you on?
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