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

Carrie, i have generally been following the cilantro smoothie every day as well. Miss some every so often. I have also gone long weekends without the smoothies and taking the cilantro pills. I have very similar symptoms to you; very little rash, lots of itch, especially the back, upper chest and sometimes arms. What is funny is that when i am spending time away, the itch at times goes away - i actually think its because i get busy and my mind isnt focused on it as much. I have gone four days without the smoothie and no pills. I sort of stay off of it until the itch starts coming back. I am a little frustrated as regardless of the smoothie, the itch still comes up - i use a bunch of creams that seems to satisfy the itch - usually lasts about half a day. The cilantro seems to handle the rash; the itch no so much.

Might suggest the following .... get the cilantro pills - i take three a day when im not drinking the smoothies. I use Lubriderm and Sarna (the menthol one) together for the cream - it definitely removes the itch. When it comes back, i get to a private spot and just reapply. You may need to do it a few times a day. Finally, i don't know where you are going, but if its nice and warm and sunny, i have found the SUN helps enormously. Partly as i have less clothes on but also my dermatologist says its the UV rays (similar to light treatment).

Good luck.

UPDATE - I finally got in to see a Dermatology Specialist at the Mayo Clinic on Monday. I spent the two weeks prior to my appointment taking none of my prescribed medications (for Grover's and Hives) and I stopped the Cilantro smoothies. I wanted them to be able to make a clear assessment with nothing in my system. The Dr. spent quite a bit of time with me. Asked a ton of questions. Took 11 vials of blood, urine sample and two punch biopsies. I got the results today. There is currently NO sign of Grover's Disease. Thank GOD! I tested positive for elevated Eosinophils which are a type of disease-fighting white blood cell. This condition most often indicates a parasitic infection, an allergic reaction or cancer. (So needless to say, I am a little freaked out by the cancer thing) They are sending my blood off to a hematologist to further investigate. BUT, the Dr. thinks that it just may be an allergic reaction type thing related to my chronic hives, and that most people with chronic hives have a very difficult time figuring out why they have hives and what is causing them (which came first, the chicken or the egg?) In any case, I also have elevated TSH (Thyroid Hormone) and an elevated TPO in thyroid. The presence of TPO antibodies in your blood suggests that the cause of thyroid disease is an autoimmune disorder, such as Hashimoto's disease or Graves' disease. In autoimmune disorders, your immune system makes antibodies that mistakenly attack normal tissue. Antibodies that attack the thyroid gland cause inflammation and impaired function of the thyroid. She told me that oftentimes people with thyroid disease have chronic hives. I was diagnosed with Hashimoto's when I was 10 but never had to go on thyroid replacement therapy until about 10 years ago, and I have remained on a very low dose with no issues until recently. So the good news is no more Grover's. (for now anyway) Was it the smoothies or was it just time for it to go? I really don't know for sure. But I do know the smoothies seemed to be the only thing to work in knocking it out of my system. I am no longer drinking them as it seems there is no need. I will resume if necessary. Now I just have to wait for the results of the additional tests. In the meantime, I am on massive doses of antihistamines (4 Claritin a day and 4 Allegra a day. It seems to be helping. My hives are at a minimum with only a few small outbreaks these past few days. I am hoping they get to the bottom of this, so I can be totally off meds. But if not, at least I know I have had a thorough work up and hopefully the results will bring a positive outcome.

Hi all, I've posted this previously, but as the group grows with new members, it's good to keep in mind the limited research done on cilantro. While the effects and results some of you are experiencing are promising, please note that there isn't yet enough information to know for sure if cilantro is safe when taken as a medicine. More research is required.

I agree that it is valuable to tell your specialists about your experience with cilantro. Gathering anecdotal evidence is often the first step to prompting more research. Here's more info to help your conversation with your allergist and dermatologist. (Note, for some people cilantro can cause allergic reactions.)

– WedMD https://www.webmd.com/vitamins/ai/ingredientmono-1533/cilantro
– Elsevier Review Article – Coriander (Coriandrum sativum L.) essential oil: Chemistry and biological activity https://www.sciencedirect.com/science/article/pii/S2221169115000647
– American Journal of Clinical Nutrition: Health-promoting properties of common herbs https://academic.oup.com/ajcn/article/70/3/491s/4714940

I am blown away by all the testing and information you have learned from the Mayo. They seem very thorough. Interesting about no sign of GD. Did you ever test positively to a biopsy before? I only had it biopsied once and it was at the end of a 1 year initial breakout and it came back negative, even with loads of scabs left. Even when dormant I can feel little bumps under my skin in GD areas. I have read our proteins change with GD and we loose the collagen holding our cells together and would think that would show up in a biopsy, regardless of whether it is active or not. I have no doubt I have GD.
The Hashimoto's is chronic I believe- a life long disease which one of my best friends has and has had since late teens, now 65. I do know it has caused her a variety of health issues, yet she leads a very active life. She has had terrible allergic reactions at times but not eczema, more like the hives you talk about. I saw her once when her entire body turned dark pink and she was swollen all over. She had to go to the hospital.
They have you on really high doses of anti-histamines. I take 4 of the all day anti-histamines daily and have for years as recommended by my allergist. Not sure it helped with my types of eczema but it sure has cut my hay-fever symptoms back. Almost to zero and I used to have terrible hay fever taking a standard dose. Have they told you how long they will keep you on this high dose.
You are a fighter and appreciate you keeping us updated as I always learn from you.

I lived in an area with ideal weather, winter and summer for most my life and coal was not used anywhere. I only have 4 amalgam fillings and even though they have held up now for 60 years I considered having them replaced with gold or ceramic because of numerous metal allergies I have, but read that the removal process releases mercury and after all these years not much is leaching from the top. Did you have your had your fillings replaced?
I appreciate the informative sites you send us to and hopefully get to the YOUTube site soon.

I have had all of my metal fillings replaced (several) except one. Also I break out in hives from an allergy to penicillin. I've seen immediate reaction breakouts in hives from shellfish in other people.

I have had all of my metal fillings replaced (several) except one. Also I break out in hives from an allergy to penicillin. I've seen immediate reaction breakouts in hives from shellfish in other people.

I did too about 20 years ago. I have NEVER had a problem with hives, rash or itching until this all started last year.