Grover's Disease: What works to help find relief?

Looked at website.....discussion and Pictures on everything but Groover's disease (not well known disease) took Folic acid in past no methotrexate! might run it by Primary care...... Dermatologist had little to offer!

Unfortunately we ALL seem to have a very difficult "issue". I got a mild case of covid (unvaxed by choice) on a Saturday in late April and on Sunday I developed an itchy rash all over my lower back. Biopsy suggested grovers and lichen Planus. Dermatologist gave me a shot of intramuscular kenalog to address the itching and started me on a (non-effective) cream. Two weeks later, the results came in -- Grovers / lichen Planus. By this time the rash had stopped itching on my back and pretty much cleared up. However, it migrated to under my breasts and all along my rib cage/stomach area. I have been prescribed (and used) various fungal creams as well as creams used for psoriasis. None have cleared up the rash. Fortunately this rash area does not itch. I opted to use tea tree oil but the rash still persists. I have tried the cilantro smoothie, various fungal creams, tea tree oil, neem oil, and so far little improvement. And now the spots are starting to pop up on my forearms and legs. It's hard to believe that no one in the medical profession has been able to come up with a workable "remedy". I do understand that there is no cure for this...what I guess is an autoimmune disease. PLEASE hang tough and continue to share what works/what doesn't as I think we must be our own advocates if we are to find a workaround. I appreciate everyone sharing their story. It helps to know we are not alone!

How much vitamin A are you taking daily? I am doing all of the above with that exception. I am on Day 22 of the cilantro smoothies, no change as yet. My case is a bit different, as my skin (solely on my back) burns and is hot to the touch. Punch biopsy confirmed it is Grovers…I have been suffering a year and a half. I am a woman also, as they say this disease affects older men rather than women. Thanks for your input.

I felt all alone before I read about your l lichen planis autoimmun disease. I also had covid march of 2020 and I have all the symptoms you have. Mine started in my mouth. My dermatologist and oncologist refer mine as oral lichen planis. I also have a low blood count so my immune system is in bad shape. Like you, doctors say no cure and treat symptoms. I have nothing to add except additional symptoms like loss of appetite, tender spots on my head, and (v) itching. I thank you for sharing........I am near tears.. Hope to see you here again.

@jo2468 it is a shock when you are first diagnosed. I have diverse area affected by LP including erosive OLP (oral lichen planus). Hang in there and reach out with any questions or just to vent. LP can touch almost every part of your body and mucosal membranes and can be so daunting to deal with.

This LP is a full body problem and we have no control! One doctor dismissed me by saying "That it usually goes to cancer", and left the room with no further details. Do you know anything about what he said? Next appt I will talk with my new doctor. Sounds like you've been dealing with LP for a long time and I am sorry to bring it all up. I've been diagnosed only since January t

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Hi @jo2468. The statement about cancer is absolutely not true. I have read many abstracts on all types of LP and from what I’ve read here’s the deal:
Chronic oral LP can turn to cancer but that is very rare.
Ocular LP can cause blindness. I haven’t seen a good abstract on the occurrence. I have ocular LP so I am very concerned about this. From studies with actual numbers, those diagnosed with ocular LP go blind within a year. My interpretation is that it probably isn’t common so if I were going to go blind I would have already. Although hydroxychloroquine, the usual first medication go-to when people cannot keep their LP under control using steroid creams on spots, can cause blindness but that typically happens after 10 years of being on hydroxychloroquine.
Otic LP can cause hearing loss. Very rare occurrence.
LP of the scalp (lichen planopilaris) can cause hair loss.
My first dermatologist told me to stop being such a baby and that he had an 80 year old patient that was dealing with it better than me. That 80 year old did not have LP in as diverse areas as I have.

Was your doctor a dermatologist? May I ask where your LP is?

Hang in there we support you!

Hi BB22,
Very interesting information. Thanks so much. Yes, it was a dermatologist who scared me with his thoughtless comment. He was the one who diagnosed me, of course I never went back to him. As for myself it started as red swollen gums and pain. Hard to eat. Tender spots on my head and red itchy ones on my calves and lower arms. Itching on my private parts drove me crazy. Fatigue plagued me every day and. Loss of appetiite. Diarhea lasts for weeks at a time. Lost 15 lbs so far. Also foot fungus has shown on one toe. I have what I call flair ups that seem to last longer than my good days and my sister has To grocery shop for me sometimes. Chronic oral lichen planis is what my GP, dentist and oncologist (he is watching my low blood pressure Too.
I don't have the medical language like you do (I'm glad you do). As you can see I have a sleeping disorder I never had before this. Anxiety probably. I hope you have had a good day! Bye for now.
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73 yo male, GD for 5 months.
Curious anecdote. This week I flew coast to coast for the first time since coming down with GD, 5 months ago. With delays in Chicago I was onboard the aircraft for 8 hours straight. Normally I would wear long pants and a hooded sweatshirt to deal with the frigid air in the cabin. This trip I wore shorts and a t-shirt and was freezing the entire time. But... I did not itch all day, that night or the next day and did not have to use ointments or antihistamines. That's the longest I've gone without itching since getting this obnoxious condition.