Has anyone gotten a rash while on Plaquenil?

Posted by bswpb @bswpb, Mar 11 9:22pm

I know it is used to treat Planus Lichens as well as RA and Lupus. I was originally put on it for RA. I also had Planus Lichens. Now the PL is gone but I have other rashes! Also, anyone hungry all the time? I was blaming that on prednisone but I have been off it for a little while and am still hungry all the time!

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Yes years ago. And it took ages to go away even after I stopped the plaquenel. I think about a month. They put me on colchicine for my lupus. Still on that, and methotrexate, prednisone and a bunch of vitamins. Hungry and fat! Lol!
I have a mix of conditions, lupus, RA, IPF, sjogrens, and Hashimotos.

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Profile picture for lorijoa @lorijoa

Yes years ago. And it took ages to go away even after I stopped the plaquenel. I think about a month. They put me on colchicine for my lupus. Still on that, and methotrexate, prednisone and a bunch of vitamins. Hungry and fat! Lol!
I have a mix of conditions, lupus, RA, IPF, sjogrens, and Hashimotos.

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@lorijoa I have GPA, Sarcoidosis, RA and Sjogrens. I have been on Plaquenil for 6 months, just got of prednisone and will have my 5th Rituxan infusion in a month or so. I guess I will just have to be patient and see what is going on in a few weeks. I am not much for the waiting game!

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Profile picture for bswpb @bswpb

@lorijoa I have GPA, Sarcoidosis, RA and Sjogrens. I have been on Plaquenil for 6 months, just got of prednisone and will have my 5th Rituxan infusion in a month or so. I guess I will just have to be patient and see what is going on in a few weeks. I am not much for the waiting game!

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@bswpb I hope it works for you. I hate waiting too. I had been on the plaquenil for awhile before I got the rash, it was weird.
The methotrexate is a new one for me, been on it just since October. That took weeks to kick in and I am still not very energetic. I swept the living room floor and had to take a nap.

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Profile picture for lorijoa @lorijoa

@bswpb I hope it works for you. I hate waiting too. I had been on the plaquenil for awhile before I got the rash, it was weird.
The methotrexate is a new one for me, been on it just since October. That took weeks to kick in and I am still not very energetic. I swept the living room floor and had to take a nap.

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@lorijoa I hear you! I don’t usually get a lot done before I need a nap or at least a rest! Today I took the Plaquenil a little later and actually do get quite a bit done! Couple hours after I took it I had to have a nap! I need to get moving about and do a little more! Have to get stuff out of the way of the windows as they are being replaced starting next week! It’s a slow go!

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Profile picture for bswpb @bswpb

@lorijoa I hear you! I don’t usually get a lot done before I need a nap or at least a rest! Today I took the Plaquenil a little later and actually do get quite a bit done! Couple hours after I took it I had to have a nap! I need to get moving about and do a little more! Have to get stuff out of the way of the windows as they are being replaced starting next week! It’s a slow go!

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@bswpb
You are still on the plaquenil? They had me get off of it when I got the rash, it was maddening, big, itchy hives all over.
It will be nice to get new windows! We could use some new ones here, the glass is fine but some don't open or close. I need to clean them, the one especially with the dog nose prints! Hahaha!
My main big project is to finish unpacking, we downsized and got rid of literal tons but we still have cartons to unpack and figure out where everything will live. I think more stuff has to go before it will all fit.

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Profile picture for lorijoa @lorijoa

@bswpb
You are still on the plaquenil? They had me get off of it when I got the rash, it was maddening, big, itchy hives all over.
It will be nice to get new windows! We could use some new ones here, the glass is fine but some don't open or close. I need to clean them, the one especially with the dog nose prints! Hahaha!
My main big project is to finish unpacking, we downsized and got rid of literal tons but we still have cartons to unpack and figure out where everything will live. I think more stuff has to go before it will all fit.

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@lorijoa my dermatologist thought it was contact dermatitis. We’ll see what they say in a couple of weeks when I am done with Triamcinalone cream. It’s gotten better and is not hives! I have a long history with hives!

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Yes, yes, yes, 100% yes. I was on Plaquenil (hydroxychloroquine or HCQ) when I developed my full blown lupus rashes.

I have oral lichen planus that just looks like white lines and my mouth will get inflamed and feel dry to ouchy/burning.

Then about 14-15 months ago I developed small dark pink spots around my elbows that were intensely itchy off and on and I thought “oh look, lichen planus on my elbows too”. New spots would start very small then grow bigger and bigger until they merged with other spots until they were big areas surrounding both my elbows. A biopsy from one of them confirmed cutaneous lupus.

And THEN, after I started putting ultra potent steroid ointment on the elbows twice a day, the spots showed up on my butt, thighs, and started going my legs. At this point, apparently, (and this is my own interpretation of events here) my skin inflammation was so high that it was basically like RED ALERT!!!!! And I got a special type of hives that 1) do not go away within 24 hours and 2) do not go away when you take antihistamines- even at 4 times normal dose. My allergist tells me this means they are “not urticaria” if they do that, but they are “autoimmune urticaria/hives”. But… I never got the hives biopsied at the time so it’s a “yeah, that’s most likely what it was”.

What do lupus lesions look like? Um, pretty much any skin weirdness you can think of, it can show up as that. How do you diagnose it? Get a biopsy. It’s the only way to tell if - at the skin level- the immune system is attacking your skin versus having a contact irritation/ inflammation reaction like what your derm thinks might be going on.

Will HCQ make skin lupus better? Uhh, only in about 50% of people. So, you have a flip of the coin’s chance that your skin might be benefitting from the HCQ. The HCQ is not likely to be harming the skin. Why do we take the HCQ? To protect internal organs in the long run.

So… I would keep an eye on your skin. Stay the hell out of the sun like it is your mortal enemy- all UV exposure is to be avoided. And get a biopsy if the rash doesn’t clear up. If you’ve had lots of hives (or a history of chronic urticaria) you are already in the “broken skin inflammation” club and you have a higher than normal chance of developing lupus…

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Oh, I forgot how when the rash started fading on my legs then it showed up all over my torso. It started off as teeny tiny little spots, then got a little bigger. Honestly? If you look at pictures of measles cases and just make the rash like a lot lighter, that’s what it looked like at the time. By the morning it got to my torso- I just looked in the mirror and I cried a tiny bit and thought “I’m not going to be able to wear a shirt or a bra for weeks if this goes the same way as my legs.” And then I demanded to take oral steroids to clear it up.

I had already started on CellCept, but it would be many weeks before that had enough of an effect. In the end the CellCept just wasn’t enough and I am now on methotrexate orally weekly and doing OK with that. No crying or hives and almost no skin rashes unless I let the sun touch my skin for any amount of time whatsoever.

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After taking it one week I got a terrible rash and constant itching so my doctor took me off of it. I’m not taking anything for my lupus now.

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Profile picture for marymaryoregon @marymaryoregon

Yes, yes, yes, 100% yes. I was on Plaquenil (hydroxychloroquine or HCQ) when I developed my full blown lupus rashes.

I have oral lichen planus that just looks like white lines and my mouth will get inflamed and feel dry to ouchy/burning.

Then about 14-15 months ago I developed small dark pink spots around my elbows that were intensely itchy off and on and I thought “oh look, lichen planus on my elbows too”. New spots would start very small then grow bigger and bigger until they merged with other spots until they were big areas surrounding both my elbows. A biopsy from one of them confirmed cutaneous lupus.

And THEN, after I started putting ultra potent steroid ointment on the elbows twice a day, the spots showed up on my butt, thighs, and started going my legs. At this point, apparently, (and this is my own interpretation of events here) my skin inflammation was so high that it was basically like RED ALERT!!!!! And I got a special type of hives that 1) do not go away within 24 hours and 2) do not go away when you take antihistamines- even at 4 times normal dose. My allergist tells me this means they are “not urticaria” if they do that, but they are “autoimmune urticaria/hives”. But… I never got the hives biopsied at the time so it’s a “yeah, that’s most likely what it was”.

What do lupus lesions look like? Um, pretty much any skin weirdness you can think of, it can show up as that. How do you diagnose it? Get a biopsy. It’s the only way to tell if - at the skin level- the immune system is attacking your skin versus having a contact irritation/ inflammation reaction like what your derm thinks might be going on.

Will HCQ make skin lupus better? Uhh, only in about 50% of people. So, you have a flip of the coin’s chance that your skin might be benefitting from the HCQ. The HCQ is not likely to be harming the skin. Why do we take the HCQ? To protect internal organs in the long run.

So… I would keep an eye on your skin. Stay the hell out of the sun like it is your mortal enemy- all UV exposure is to be avoided. And get a biopsy if the rash doesn’t clear up. If you’ve had lots of hives (or a history of chronic urticaria) you are already in the “broken skin inflammation” club and you have a higher than normal chance of developing lupus…

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@marymaryoregon

Hi, I too have lupus and have had Stevens–Johnson Syndrome for over 4 years.
I wrote a summary about the SJS symptoms and included a picture:
SJS, Lupus, APS, VWF, and Adrenal Insufficiency: A Convergence of Multisystem Disorders with Overlapping Risk: https://swaresearch.blogspot.com/2025/05/sjs-and-myocarditis-drug-induced.html

In addition:
Hydroxychloroquine-Induced Stevens–Johnson Syndrome in the Patient with Systemic Lupus Erythematosus: A Case Report in Kurdish Region - Iraq
https://pmc.ncbi.nlm.nih.gov/articles/PMC10815519/

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