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

Just a quick update - hope it helps others. So here is my treatment protocol that so far has been working. From all the posts here, its clear it won't work for everyone but hopefully it can help someone. Two times a day, I rub Calcipotriene Cream .005, then Betamethasone Val .1% Lotion, then Lubriderm Advanced Therapy (otc) and then Sarna (otc - the one with CAmphor and Menthol) on the rash area, as well as the rest of my chest, back and arms. If i get a little itchy during the day, i just use the lubriderm and sarna lotion to get me thru it. What also has helped is using only warm water in the shower, washing my hair with DHS Shampoo and DHS Conditioner, AND when i am done before i dry off, i apply Johnson's Baby oil on chest and back. The prescription stuff seems to be keeping the rash at least from getting worse and it has cleared up around my neck. I noticed that my skin had been getting a little dry so the lubriderm helped that. Finally, i really like the Sarna - lets me put clothing on and lasts at least an hour or two before i get that tingling/itchy feeling. I should add, i make sure that ONLY 100% cotton clothes touch my body now. Ideally organic cotton. And i don't use any softener or dryer sheets on my clothing anymore - use only detergent and bleaches that have nothing added/sensitive skin type stuff.

After a long day of work, especially if i don't use the lubriderm/sarna at all, i can't wait to get home and lather up. Then it's sweatpants and a cotton tshirt and life is just about livable.

Please be careful with the above prescriptions though - i have read from several people that Calcipotriene actually makes it worse for them. ITs also really expensive. And some have said that Sarna does nothing and/or makes it even worse when it wears off. I should also add my rash isnt that bad - the worse thing for me is the tingling/itchy back where there is no rash but i have been assured it's there. Keeping really busy at work keeps my mind off of it ... unlike writing this post which now has it front of mind. Ugh.

Feel better everyone.

Doc has now changed up program once more. I now use the Triamcinolone 0.025% (low dose) twice a day for five days and Elidel 1% twice a day on weekends. Doc took another biopsy and stitched the hole (I had him remove the worst one). I will post results of that when in. Doc has now started me on Isotretinion pills 40mg once a day. I would like to mention that I am seeing very significant improvement from day one of starting the pills only 7 days ago. I'm over 50% cleared up which may be the best I had ever been (previously) with the Impoyz cream (only allowed to use for two weeks max - then only to return). Can't wait to see next week. I'd also like to mention I started the Vanicream bar soap at the same time a week ago from these posts.

I was diagnosed with Grover's disease back in October 2018. It started as a small patch on the back of my head and neck but then spread down to about 80% of my body by January. I was MISERABLE! I tried many different topical steroids and creams. I read through all the posts here and tried about everything suggested. I went Gluten and sulfate free too. None of which helped calm the terrible itch. The only thing that gave me temporary relief was Sarna lotion which I purchased at the drug store. Oral steroids would also stop the itch but as soon as I came off of them the rash and itching came right back. I also felt terrible side effects while on the Prednisone but for me it was better than the itching. I began researching other remedies and believe it or not I think I stumbled upon a cure! I read on a couple other forums that eating 1 bunch of cilantro a day had cured several people suffering with Grover's. So I decided to try it. I thought "what do I have to lose"? I was super skeptical, and I HATE cilantro. But I was also desperate. Within a couple weeks the rash was noticeably improved and within a month it is completely gone! I can't imagine how something so simple could do the trick and I am baffled that no doctor seems to know about this cure. I would ask that anyone suffering give it a try. It only costs about $1 a bunch and again, it couldn't hurt to give it a try. Hopefully you will all have success like myself and the many others.

Thank you very much for the info about cilantro and did hear from another that it helped but ignored it because my GD was dormant so no need to force myself to eat it. My Grover's had been dormant since July and is now starting up again. I started using a saved tube of Elidel, an immune suppressant last week as a treatment for the first time (I had used it on Perioral Eczema with success). The bumps are stalling and the itch is much less. Steroids never helped me at all. Sadly Sarna never helped me with itching.
I do think my diet changes, no sugar and limited carbs and zero gluten helped slow down my current outbreak, plus so far dramatically less misery.
I definitely will try the cilantro as I am motivate now but how in the world did you manage to eat it. I think a handful of grass would be easier to eat. I like a bit of cilantro in Mexican food and can't image eating a bunch a day!!!!

jdb3- You may still have GD if your biopsy is negative like mine was. I was biopsied at the end of my 1 year break out when the papuales were waning. If you check out the New Zealand Derm site I met all the common criteria except most are male. Plus their excellent photos of various eczema types matched mine to GD. My torso rash is classic on back and front torso and should have been obvious to my regular derm who kept treating it as a rash based on my Allergic Contact Dermatitis, ACD and I was getting zero relief. Also couldn't figure out how my ACD would be triggered as I had detoxed my world. It's hard to get doctors to not put you in a box,as they stop looking for other forms of eczema once they label you. I went to a new derm and she took one look and knew immediately

@kimass1 I shall shop for cilantro. Will keep all posted. Thanks for the info.

@gardenjunkie I honestly did not think it would work. I started with a half bunch in a smoothie containing sherbet and fruit because I couldn't stand the taste. I increased to a whole bunch and added a tsp. of Chlorella to the mix after a few weeks at the suggestion of others that have benefited. The taste never gets better, so I just choke it down. Please keep me posted. I hope you find success too! ps one guy was eating 5 bunches a day...that seems excessive but it worked for him....so...

I went ahead and ordered the extract - Herb Farm - and also ordered some Chlorella. Health food store said that the extract might even be better in delivering the benefits of the Cilantro - who knows but i know its going to be pretty hard for me given travelling to eat a bunch of raw cilantro each day. Will keep you posted if the rash and itchiness goes away.

seth971- I like the idea of extract and will check out Herb Farm, yet will picking up fresh cilantro today. I take oregano extract to control yeast and can't imagine eating the equivalent fresh. The oregano tablets with oregano oil do cause a bit of burping for an hour or so after taking and your taste buds definitely know it is oregano and it will be interesting if cilantro extract does the same.
kimass1- your recipe sounds about as appealing as a kale smoothie which made me gag (yet I like fresh Kale cooked or in a salad). Yet your idea of camouflage to trick our taste buds is what I will try.

Some people put it in salad I just prefer sweet over "savory" lol! It's gross to me either way. I have not heard whether any of these folks used the extract, they all went with the raw bunches and found success. So let me know if it works. It sounds WAY more appealing and easy.