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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Profile picture for cdianeb @cdianeb

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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@cdianeb I'm curious.. is your Dr okay with you not taking anything? Can I ask what your ana level was/is? How long did it take for your skin to clear? Any suggestions?

I am now covered in a rash, heading to dermatologist tomorrow.. I'm so nervous about all the new drugs now.

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Profile picture for runnergirl03 @runnergirl03

@cdianeb I'm curious.. is your Dr okay with you not taking anything? Can I ask what your ana level was/is? How long did it take for your skin to clear? Any suggestions?

I am now covered in a rash, heading to dermatologist tomorrow.. I'm so nervous about all the new drugs now.

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After steroids a couple of times and some cortisone cream she prescribed a drug for itching. The rash went away after a couple of weeks and the itching stopped after about 3 days. She said the alternative was to take methotrexate which has really bad side effects. I chose not to take the methotrexate and finally stopped seeing the dermatologist regularly. She didn’t push me to take methotrexate and I think my lupus is mainly on my skin so I’m just using Aveeno products and that helped my skin issue. I still don’t understand lupus after researching it and the doctor didn’t explain it very well but I’m 75 and always been very healthy so I guess it’s time for me to start having some problems. Get in touch with me if I can help in anyway. Good luck and don’t be afraid. The doctor will help you get over this. 🙏💕

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Profile picture for swalex @swalex

@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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@swalex Your research is phenomenal! Such interesting reading. I remember caring for a woman who developed SJS due to administration of penicillin to which she was allergic. The daughter had neglected to tell the ER staff. When she was admitted to our unit I prepared a
Third dose which I never gave. I had been doing the admission H+P when the daughter said she was allergic to Pen, but she had forgotten to tell the ER. I called the MD and got stat orders
The next day she was transferred to a burn unit in the city where she died. It has stayed with me for 30+ years.

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Profile picture for Becky, Volunteer Mentor @becsbuddy

@swalex Your research is phenomenal! Such interesting reading. I remember caring for a woman who developed SJS due to administration of penicillin to which she was allergic. The daughter had neglected to tell the ER staff. When she was admitted to our unit I prepared a
Third dose which I never gave. I had been doing the admission H+P when the daughter said she was allergic to Pen, but she had forgotten to tell the ER. I called the MD and got stat orders
The next day she was transferred to a burn unit in the city where she died. It has stayed with me for 30+ years.

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@becsbuddy
Thank you, Pecky.
Yes, experiences like this can be deeply traumatic and often remain with us for a lifetime.

A friend of mine died needlessly because medical professionals overlooked three critical factors:
His IgM level was 86 AU/ml very high.
His severe histamine intolerance, following a previous anaphylactic reaction and mast cell issues triggered by NSAIDs, was disregarded.
He developed skeletal muscle weakness and spasms affecting his diaphragm and intercostal muscles.

One of my ongoing concerns is that the possible connection between a previous anaphylactic reaction and subsequent histamine intolerance (HIT) is often overlooked.
Anaphylactic Shock: https://www.youtube.com/watch

Unfortunately, I was not permitted to advocate for him because I was not a family member.

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Profile picture for runnergirl03 @runnergirl03

@cdianeb I'm curious.. is your Dr okay with you not taking anything? Can I ask what your ana level was/is? How long did it take for your skin to clear? Any suggestions?

I am now covered in a rash, heading to dermatologist tomorrow.. I'm so nervous about all the new drugs now.

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@runnergirl03 when I was diagnosed with Lupus at 61 the rheumatologist put me on Plaquinel. Within about 3 weeks I broke out with a terrible rash that started at my neck, went down my arms and then down my torso to my midsection and stopped. By the time I went to my rheumatologist office, they suggested I see a dermatologist. At the dermatologist, they had apparently no idea what would cause this rash knowing I had just been put on Plaquinel 3 weeks earlier. The dermatologist did a small biopsy of one of the areas with the rash. My rheumatologist called and said stop taking the Plaquinel which I did immediately and it took about another two weeks or more for the rash to leave the same way it came bottom to top instead of top to bottom! Subsequently they put me on Azathioprine which I have been on for the last 11 years or so. Just recently they have had me do stints with budesonide to help with liver enzymes which get elevated due to autoimmune hepatitis caused by the lupus. I will add that I was on a low-dose of prednisone for about five years to help with the lupus. One of the tough parts about how my lupus affects me is it gives me really low WBC’s. They are always watching me for that.
Hopefully, your rash will clear up quickly! The Azathioprine has worked really well at controlling my disease.
Best of luck to you!

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I didn't get a rash, but I had horrible itching everywhere on my body. I went off Plaquinel for while and went back on with the same side affects.

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Profile picture for patticlarke09 @patticlarke09

I didn't get a rash, but I had horrible itching everywhere on my body. I went off Plaquinel for while and went back on with the same side affects.

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@patticlarke09 well that’s interesting! So did you stop again? Surely a reaction to the drug.

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Profile picture for pgn @pgn

@patticlarke09 well that’s interesting! So did you stop again? Surely a reaction to the drug.

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@pgn yes, I did. I couldn't handle the itching.

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