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

Hello Group, I have found this site and read through this whole long thread and am so happy I did. My story is long, but to sum it up, I began breaking out in a weird rash around Oct 2018. It seemed to flare up around my monthly period and I was also getting a cold sore at this time of the month as well. I went to multiple doctors and no one seemed that concerned or knew what it really was. I had two biopsy's and was told I had Darier's Disease....I did not think so. I began following a facebook page for Darier's and just did not feel like my symptoms were similar and so I kept seeking answers. Throughout all this time I continued to get worse and my rash never went away with any prescription meds the dermatologist gave me. It would eb and flow and seem to get better just to come right back. My dermatologist said my last resort would be to get on oral isotretenoin and when I could no longer physically and especially mentally handle the daily itching and red rash, in July I began isotretinoin. I am now 3 months down and while my rash has gone, the itching was still relentless. My itching was only on my neck and chest. I have no symptoms anywhere else. I still can't pinpoint why this all happened and it's still a daily struggle but I have also been on the cilantro smoothie path for over two weeks now and the itching is 90% gone! I have always had anxiety since college and this condition really hit me hard. I have gone on meds to treat the cold sores and have wondered if the meds caused the rash, been told by doctors No. I have also wondered if a flu shot I got last Oct could have caused it. I wonder if my hormones changing at 35 could have caused it...that's what is so hard not knowing what caused it to try and avoid it. It has taken me almost a year to heal physically and mentally and while it's still present, I am so worried to get off the isotretenoin and acyclovir in case it decides to flare up again. I am going on a cruise this Christmas and am also worried that a week without the cilantro smoothie may cause itching to return, but also just worried in general about whether I should keep on these meds until after the trip. I hope my healing lasts and this never comes back, but I am fully aware that this could be ongoing and at my age of 37 it is so scary. Thanks for listening and appreciate hearing others sucesses.

@carrie14 Cilantro also comes in supplements for traveling. You get them on the Internet. Interesting g that you mention ed hormones. My Grover's started when I stopped years of hormones.

I have spent many days trying to go back and see what could have happened to cause this, but on my 35th birthday I woke up to a huge spider bite on my bottom. Fun right! I got on antibiotics for it and had no issues. After that, is when my skin issues started coming around my monthly cycle. Probably not related, but the rash and itch would start about a week before my period and then go away after. This went on for about a year until every month I would get a cold sore along with the itchy rash on my chest. That is when in Oct 2018 I began the constant rash and this whole situation started. I've read that you can get both cold sores and itchy rashes during the week before your period and that would be fine, if it went away! I am just curious if the cold sore meds I take caused anything....but if I stop taking them I get a cold sore immediately. I did buy the cilantro pills and plan to take them for a week next month to see if they keep the itch at away to prepare for my cruise. I'm hoping they do and then when I get home I can get back to smoothies.

I took capsules I bought on Amazon on 5 day trip in June. All worked well although I probably took too many each day (5). I still take a couple each day.

That's so good to hear. I will definitely take them on my trip. In more of my research I saw that GD can be induced by antiviral medications, and one of the medicines I started taking last year was an antiviral, which I still take. I know I will risk getting another cold sore but I am going to stop taking them and see how I feel.

Carrie14 since the fresh cilantro is helping 90% (fantastic) why not keep taking it until the day you leave for your cruise because many report the capsules aren't effective for them. Although Frogger had good results taking the capsules he had been on the fresh for months. I believe it was just for the time of his trip he used the capsules then he went back on the fresh. Not sure maybe he will clarify that. He has mentioned he is in remission now not taking cilantro. I am too afraid to stop using, plus it is easy enough to do and I figure it won't cause any harm. It is a metal detox, so perhaps after taking it for a long period we are cleared of most of our metals and can handle doing without it until the metals build up again.
Could you share with us the source of the information about anti-viral meds inducing GD as I would like to read more about it. I have never read that before or taken anti-viral meds but if needed in the future that would be helpful information. I just had the adult strength flu shot last week without any reaction other than a mildly sore area at the site of the injection for 1 day.

I am definitely going to continue with the smoothies everyday until I leave. I will take the pills while I am gone. The website for reference is GARD. The antiviral they mention is called Ribavirin and it's the same class of med as the Acyclovir I take. I had asked multiple doctors is there could be any correlation and they say no, but it's clearly written in literature that it can. Maybe I am that 1%....either way I am going to stop taking them and let my body adjust back to before I started and see. What do I have to lose? I may break out with a cold sore, but maybe not. I have decided to get the flu shot tomorrow and I think I will be fine from that.

Hi @carrie14, I noticed that you wished to post a URL to a web resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post the link to Genetic and Rare Diseases (GARD) Information Center for you.

Grover's Diseases https://rarediseases.info.nih.gov/diseases/6551/grovers-disease.

No additional stress. But my life is pretty stressful raising a 2 year old at 56 years old!!

Exhaustion can stress the body!