Mayo Clinic Connect
I have been diagnosed with Grover’s disease under my breasts. I had a biopsy for diagnosis. Tried topical ointment with no really good results. Any ideas?
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?
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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.
Liked by Chris Trout, Volunteer Mentor, MariannJ
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).
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
Liked by MariannJ
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.
Thanks for the information on cilantro. The webmd article mentioned the heavy metal detox effects. Aluminum was mentioned as being detoxed and I learned from a blood test earlier this year for metal allergies that I have a moderate aluminum allergy.
I was diagnosed with GD after s biopsy last December. The Hashimotos, for me, has been almost a non issue. I let my levels get out off whack by not monitoring it closely and that may have caused the hives. It’s just strange they appeared the same time as GD.
Do you think it is based on elevated histamine levels because of your Hashimotos being out of whack?
It’s s possibility
Waiting for all results but that’s the thinking so far.
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 did too about 20 years ago. I have NEVER had a problem with hives, rash or itching until this all started last year.
I thought about replacing metal fillings, but after studying the internet I read that actual removal releases more mercury into our bodies than just leaving old fillings alone. I only have a couple and if GD is triggered by mercury or other metals I think it's likely I picked up metals from other sources like seafood or water No metal testing done to other siblings but I have had blood tests and am allergic to aluminum and nickle as well as 3 other metals. Maybe my family has a weakness with metal allergies. As mentioned it's very coincidental that out of 4 children in my family, one sister has GD and my brother now has Parkinson's. My youngest sister is 10 years younger and the 3 of us that are afflicted all came down with GD or Parkinson's at about age 65 and youngest sister is now only 61,
I think as we age our bodies can't keep up protecting us or healing us like when we were younger. I am blessed that I didn't start having health issues until middle age. So many with eczema, like the most common form, Atopic, are born with skin issues. I can't imagine dealing with eczema all my life.
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