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Has anyone used Hydroxychloroquine (Plaquenil) for oral lichen planus?

Posted by zinnia55 @zinnia55, Mar 2 10:32pm

Are there any sucess stories out ther for OLP. I just quit Low dose Naltrexone after taking for 3 months. While I think it works gradually I could never get my digestive system to handle it. Even at a very low dose everyother day. My doctor is suggesting Hydroxychloroquine (Plaquenil). Side effects are more stomach issues - any real life users out there? Thanks.

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zinnia55 | @zinnia55 | Mar 7 7:39am
In reply to @bswpb "I am taking it for RA and it helped with my lichen planus rash. I had..." + (show)
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I am taking it for RA and it helped with my lichen planus rash. I had 4 Rituxan infusions for ANCA Vasculitis and that rash disappeared. I now have a different rash! I do have dizziness and my glucose can be quite low. We are monitoring that,.,

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@bswpb Thank you, everyones information is so helpful.

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zinnia55 | @zinnia55 | Mar 7 7:41am
In reply to @sillyduffer "Hi I've OLP for about 6 years and OP in my genitals and I suspect, in..." + (show)
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Hi
I've OLP for about 6 years and OP in my genitals and I suspect, in my oesophagus - difficulty swallowing, feeling of constriction and ulcers for approx. 1 year.
Saw a dermatologist at Princess Alexandra Hospital in Brisbane 3rd Feb 2026, prescribed hydroxychloroquine at 2 tabs per day.
I've had a very positive result in as much as the affected area in genitals is gone, no more swallowing troubles and a huge reduction in the soreness and gum issues in my mouth.
Why did I have to wait 6 years, 2 biopsies and much pain to get this relief?
No nausea, and very mild diarrhea.
Keep persisting.
Enjoy reading and learning from all the comments.
Cheers

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@sillyduffer This is really great news! I am so happy this is working for you.. Thank you for sharing your information.

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zinnia55 | @zinnia55 | Mar 7 7:42am
In reply to @renee17 "I have cutanious LP and oral LP. My skin and mouth have improved a lot since..." + (show)
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I have cutanious LP and oral LP. My skin and mouth have improved a lot since starting Plaquinel five months ago. I am also diagnosed with lupus, and will occasionally still experience mouth breakouts during a flare.

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@renee17 Thank you! Take care. 🙂

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kjoeme1978 | @kjoeme1978 | Mar 8 7:46am
In reply to @zinnia55 "@ladonnai Thank you, I appreciate your input. Take care." + (show)
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@ladonnai Thank you, I appreciate your input. Take care.

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@zinnia55 I have had the same. So far I have been ok on Plaquinil. 400mg 2x a day. I have seen an OM but he doesn’t really treat. Took two years to find him. He Just diagnoses and started the Plaquinil but wouldn’t follow. I found a dermatologist who gave me the clobetasol combo like
you. Use it last ditch when really bad. How long were you on Plaquinil until kidneys affected? I would like to reduce dosage. It has been 7 months. My lips and tongue are the worst as well. Have not found anything to make them feel normal. I think I am going to find an oral surgeon who sees oral Cancer patients to be followed. Work in progress.

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ladonnai | @ladonnai | Mar 8 9:42pm
In reply to @renee17 "@ladonnai I have been using clobetesol gel on my skin for over three years. Do you..." + (show)
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@ladonnai
I have been using clobetesol gel on my skin for over three years. Do you think that is a concern - or were you speaking only about oral LP?

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@renee17 I was speaking only about oral lichen planus. I would check with your doc concerning clobetasol use on your skin.

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ladonnai | @ladonnai | Mar 8 9:53pm
In reply to @kjoeme1978 "@zinnia55 I have had the same. So far I have been ok on Plaquinil. 400mg 2x..." + (show)
Profile picture for kjoeme1978 @kjoeme1978

@zinnia55 I have had the same. So far I have been ok on Plaquinil. 400mg 2x a day. I have seen an OM but he doesn’t really treat. Took two years to find him. He Just diagnoses and started the Plaquinil but wouldn’t follow. I found a dermatologist who gave me the clobetasol combo like
you. Use it last ditch when really bad. How long were you on Plaquinil until kidneys affected? I would like to reduce dosage. It has been 7 months. My lips and tongue are the worst as well. Have not found anything to make them feel normal. I think I am going to find an oral surgeon who sees oral Cancer patients to be followed. Work in progress.

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@kjoeme1978 I was started on HCQ in 2019, was told by oral tissue specialist to do labs quarterly to watch creatinine, BUN, etc. I didn't have problems until 2024, so I dropped to 400 mg HCQ 1xday, dropped NSAIDs to zero. Then in 2025 I dropped HCQ to 200 mg. 1xday and have stayed at that, I'll get 1-3 blisters per month, no ulcerations, in the same spot, in the back of my mouth, where my tonsils used to be. I've not had to use clobetasol for 4-5 yrs. I just keep my lips lubed up, and if the blisters linger I shoot chloroseptic spray on them, or pop them, because my tongue ''finds them'' and that's annoying. I think you are wise to see an oral surgeon, I pray you can find one soon.

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ladonnai | @ladonnai | Mar 8 10:00pm
In reply to @bswpb "I am taking it for RA and it helped with my lichen planus rash. I had..." + (show)
Profile picture for bswpb @bswpb

I am taking it for RA and it helped with my lichen planus rash. I had 4 Rituxan infusions for ANCA Vasculitis and that rash disappeared. I now have a different rash! I do have dizziness and my glucose can be quite low. We are monitoring that,.,

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@bswpb HCQ can contribute to hypoglycemia/low blood sugar. I'm taking 2 other meds that contribute to hypoglycemia, so I always carry food with me, in my car, on walks, etc. A small peanut butter and jam sandwich and mixed nuts work for me. It's always something isn't it...God bless

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zinnia55 | @zinnia55 | Mar 14 11:58am
In reply to @kjoeme1978 "@zinnia55 I have had the same. So far I have been ok on Plaquinil. 400mg 2x..." + (show)
Profile picture for kjoeme1978 @kjoeme1978

@zinnia55 I have had the same. So far I have been ok on Plaquinil. 400mg 2x a day. I have seen an OM but he doesn’t really treat. Took two years to find him. He Just diagnoses and started the Plaquinil but wouldn’t follow. I found a dermatologist who gave me the clobetasol combo like
you. Use it last ditch when really bad. How long were you on Plaquinil until kidneys affected? I would like to reduce dosage. It has been 7 months. My lips and tongue are the worst as well. Have not found anything to make them feel normal. I think I am going to find an oral surgeon who sees oral Cancer patients to be followed. Work in progress.

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@kjoeme1978 Hi, sorry for the late response. I am not on Plaquenil, it was suggested by my dermatologist if the low dose naltrexone did not work. I stared the thread to find out peoples expiriences. Right now I am just using tacrolimus ointment on current spots and clobetasol if I get a bad flare. Still recovering from the low dose naltrexone. I hope you find someone to help you out and you cn find some comfort. Thanks for sharing your information. Take care.

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annpeters | @annpeters | Mar 15 5:45pm
In reply to @zinnia55 "@kjoeme1978 Hi, sorry for the late response. I am not on Plaquenil, it was suggested by..." + (show)
Profile picture for zinnia55 @zinnia55

@kjoeme1978 Hi, sorry for the late response. I am not on Plaquenil, it was suggested by my dermatologist if the low dose naltrexone did not work. I stared the thread to find out peoples expiriences. Right now I am just using tacrolimus ointment on current spots and clobetasol if I get a bad flare. Still recovering from the low dose naltrexone. I hope you find someone to help you out and you cn find some comfort. Thanks for sharing your information. Take care.

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@zinnia55 this is off subject, but I’m wondering if you would share with me what your symptoms were from LDN. I am at my wits end with vaginal lichen planus And several other issues and was wondering if LDN would help me. Thank you. Best…

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zinnia55 | @zinnia55 | Mar 18 8:53pm
In reply to @annpeters "@zinnia55 this is off subject, but I’m wondering if you would share with me what your..." + (show)
Profile picture for annpeters @annpeters

@zinnia55 this is off subject, but I’m wondering if you would share with me what your symptoms were from LDN. I am at my wits end with vaginal lichen planus And several other issues and was wondering if LDN would help me. Thank you. Best…

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@annpeters Hi, so my symptoms started at the end of the 1st 3 weeks with stomach aches, themn constipation, then diarrhea and then acid stomach to the point it was waking me up every morning at the same time. Now having said that I have been off of the LDN for long enough it is out of my system and I am still having issues so I may of had a smaller issue that was exacerbated by the LDN. Also I have had a sensitive stomach my entire life, I don't think it happens to everyone. I would suggest starting at the lowest possible dose and working up taht is another mistake I made. I also truly belive it works. I was not having flares and my OLP was healing. I managed to take it for 3 months and my OLP is pretty under control no new issues. For the VLP I would like to recommend estrace creamm for 2 weeks rthen 2x a week after that and to also avoid high Oxalate foods. Hope this helps! Take care.

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