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

@gardeningjunkie I will check with my dentist on my next visit to see if anything bad is left in my mouth. I think each case is personal since many older people lived with those fillings forever and never got Grover's. Sometimes it is just a case of the perfect storm.

I have been drinking the cilantro smoothie for 68 days now and 9 days ago I began reducing my accutane does to 10mg every other day and I am noticing that my itching has began to increase again. I'm so frustrated as I was doing really well on the cilantro andd 10mg everyday but I wanted to get off. I'm not getting any new red bumps or rashy spots, it's just the itch. I am now 3 weeks away from my cruise and I'm even more stressed about not having cilantro for a week. I was hoping my year long battle was finally over, but now I don't know what to do. I'll keep up with cilantro, but do I go back up to 10mg everyday and see if the itch improves again? I am only 37 and can't believe how bad this has affected my daily life.

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.

Yes Carrie14, you are so young. I didn't have to deal with GD until my mid 60's. Yes it does limit my daily life when active. I had been symptom free for a year as the cilantro helped me and made the most of it. Starting up again, even on cilantro, but not enough to slow me down one bit yet and plan an active and full day for today.
Is this your first breakout? My first one was extremely severe and lasted 1 year and this is typical. My outdoor activities came to a halt. I hope you eventually get into pattern where you go into remission from time to time and when you do you will make the most of it like the rest of us.

I am going to the Caribbean so it will be warm and sunny, although I am terrified of getting sunburned. I do have the pills and took them when I was away for 3 days about a month ago, but I was also taking accutane daily as well. This is my first breakout and it's been officially over a year now. I do hope to have some kind of remission as this is taking such a toll on my life. I try to push through the pain and enjoy my kids as if nothing is wrong, but I can't help but be hyper focused on the itch and checking everyday to see if a new rash pops up. I stopped taking the antivirals for my monthly cold sores and I feel like that helped the rash and redness dissipate, but this itch won't go away. I so badly wanted to wean off the accutane and find that I was rash and itch free so I could get back to a normal life before this all started, but it's not looking that way. I need to go get some Sarna and see if that might help. I work at a school and so I interact with a lot of people and worry about the menthol smell. I don't like to talk to anyone besides my husband about my skin issues and even talking to my dermatologist causes me anxiety and I end up turning bright red from my chest up to my neck, it's SO embarrising. I take medication for that but it's not foolproof. I just feel like these last two years of my life have just been one issue after another compounding on top of eachother and I don't seem to get any relief.

I hate to put a price on health, but I also want to add that I also pay about $200 a month out of pocket for the monthly dermatologist visit and accutane pills which is also why I wanted to stop taking them if they really aren't the thing helping me. I have to do bloodtest monthly to get the pills...I've been to my GP, Allergist, and Dermatologist, Gynocologist so many times this year that I have racked up quite a bit of medical bills. I don't know who else to go to next....a Naturopath or Immunologist?

Forgive me if you have already mentioned this, but have you had any allergy testing from your stable of doctors? Of course allergy tests are pricey. Yes I understand price is a consideration. I also have Allergic Contact Dermatitis and am loaded with allergies but truly have not read GD is allergy related. Yet it seems those of us with skin diseases have several types and accumulate them as we age.
I also meant to mention that like you I do not discuss my lengthy issues about my health issues with others and also try to spare my husband and family, not even close friends really want to hear it. Others feel helpless and all it does is drag down the mood listening to us go on about our itches (which they can't feel and simply can't understand the misery of 24/7 intense itching) and pain. We listen. Unload on us. We're here for you. We get it. My husband rarely asks and if he does only then do I tell him. I will always mention if I am having a great day. My son will ask sometimes, but his busy life with 5 kids has his mind off in other places, I prefer to hear him distract me with his tales of the joy, chaos and inevitable destruction of property the active kids (4 are boys made in the mold of Dennis the Menace) create in his life. One repair after another.

My GP referred me to an allergist after some bloodwork she did showed an allergy to mold. When I went to the allergist, they did a great job asking questions and examining my skin, but the doctor and all her physican assistants (there were at least 3 of them in the room with me) thought allergy testing wouldn't reveal anything. They gave me Ketoconozole cream to try for one week and I when I went back and told them nothing had changed they were surprised but then stumped. I asked if there was any tests they could run and they said it wouldn't do any good....I asked if they could check to see if I was allergic to progesterone and they said I could pay out of pocket about $200 dollars for it since it wasn't covered by insurance. And I had no idea how much these two visits were going to cost me already so I said no. I was so hopeful they could tell me something new, but nothing.

Keep in mind for future use there are many types of allergies test for and various tests. The test that is the Gold Standard for Allergic Contact Dermatitis, ACD, is more complicated and more expense. Usually about $1,500.00 and it normally takes 5 days with patches on your entire upper back torso, Google the 5 Day Extended Patch Test as you may need it in the future. I didn't start getting ACD until after menopause at age 50. Most insurance covers tjhis test but keep in mind your plan may have a huge deductible or co-pay. This test checks for allergies to medicines like cortisone, metals, fibers, wool, lanolin, adhesives, dyes, rubber, preservatives and if you check it out it will list items it checks for. Google the True Test, interesting reading. It does check for some natural fragrance allergens like lavender and cinnamon too. I am allergic to cortisone, as revealed in this patch test. It is in one class of steroids. I can safely use 2 other classes, yet 2 others of the 5 classes have cross overs with the one class I am allergic to so may or may not react. I always knew cortisone made my skin burn and now I know why. My gynecologist and staff would argue with me and tell me I had to use it to get better even when I told them it was so painful it burned my privates. It is on the patch test for a reason I am not the only one allergic to it. Some" safe for me" steroids don't work even I am not allergic to them (no steroid helps me with GD, It may simply be you are trying to treat a condition that doesn't respond to Keto, yet it may respond to a different steroid or none at all. All of us have spent a fortune on treatments that don't help. With the 5 Day Extended Patch Test (Medicare paid for my test and you are too young), I learned of 7 allergens and removing them from my environment has given me the great relief. No ADC symptoms, but must avoid for life. I was suffering greater with ACD than I did with GD, actually ready to commit suicide because of the intense inner skin pain. The external rashes caused itching, but inside my skin was on fire and stinging me with lasers 24/7.
You are right to keep searching as it is not uncommon to stump our specialists as not all of us react the same to treatment even with the same disease. Just like all of seem to have a variation in the severity or even appearance of symptoms too.
The only other thing I can think of to help you is to try an anti-inflammation diet. This turned the corner for me with ACD because even with contact avoidance I still had some internal symptoms because my histamines were elevated so required an annual corticosteroid shot (strong stuff). I went on the William Crook, MD diet, The Yeast Connection Handbook and was dazzled by my improvement. I no longer need this shot which can have negative side effects. This diet is the most challenging task I have ever taken on, but I am a believer today. True it doesn't help with GD but may help with acne. I will stay on this plan for life. I started Oct 2018 and to this day I still don't eat processed sugar and will be happy to give it up for life in order to lower my histamines which cause inflamation in various internal parts of my body. Amazon still sells this book, simple and easy to read. You have to be miserable enought to take it on as it is very restrictive.

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.