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?
@aprilfool As you may have read, I also have a rash that does not present like Grover's (those red itchy Grover's bumps have gone with the Cilantro) However, My initial rash started on my head and I did have what looked like a hive(ish) rash that accompanied the Grover's as it progressed. All of the rashes left me for about a month or two (with the exception of the itchy bumps on my head) after starting the cilantro. However, the hive like rash re- appeared. It started really small and gradually built up to where it bothers me quite a bit now. It travels. Some days on lower legs, others on upper thigh and buttocks, others on back and arms AND I would also get itching on my palms. I could see tiny little bumps on my palms (no color) that itched like crazy. My chest and neck also get red and it feels like it's on fire, and I get almost a blister like outbreak. It's weird! I have been trying to figure this rash out for a little while now. Derms have no idea, and say it does not present like Grover's, but since I was diagnosed with Grover's through a biopsy, some think it still may be just that. Others think it's another form of eczema others thought it was hives. So I have no REAL diagnosis for this issue. Just Doctors throwing Prednisone at me and shooing me away. I thought it was an allergic reaction to the yogurt I added to my smoothies because it got better (almost gone as soon as I stopped using the yogurt.) But the last two days it has come back strong! I have not done the 5 day extended patch test because my derms don't offer it and from what I am told it costs over $1000, so I have put it off. I have NEVER been allergic to anything prior to this and I never had issues with rashes before last September when this all started. (I will be 56 in October.) I am going to set up an appointment with the Mayo Clinic next. I have to drive about 5 hours to get there, so it may be a while before I can get in. Until then I am going to keep trying to figure this thing out.
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Dear kimass1- you have got to figure out how to get the 5 Day Extended Patch Test. You have learned only a few derms or allergists are licensed in any area to perform the test. Get in to see one and see if you can work out a payment plan or a discount. Ask you derm for reference to a testing doctor. If they don't know one, run the other way, this doctor doesn't want you tested and wants to keep you as a patient. I think that is what happened to me for 10 years. I wasn't even told about this test. My derms advice as to stop washing my hands. EGAD. I can wash my hands, I simply needed a soap free from my allergens. Try contacting the True Test Kit company as they may have a list of licensed doctors in your area. Both derms and allergists test for this. I saw an allergist as the wait time was less.
With Allergic Contact Dermatitis, ACD, which each additional contact with an allergen your body will not get used it instead your reaction time will lessen and will become more severe and it is for life. I muddled along for 10 years with hand and scalp eczema only using the go to doctors prescription of steroids until my entire body was on fire. I was toxic from my exposure to allergens It began to react inside my skin, burning, stinging, itching. Sleep was impossible. If you have this form the sooner you find out the sooner you can get your life back. You know I have both GD and ACD and autoimmune diseases collect in our bodies if we are prone to them. There is no reason to believe you don't have both of these forms until your get tested. You can never guess all your allergens. I was allergic to elements I didn't even know cause allergies.
Liked by kimass1, MariannJ
Seems like you know for sure you have 2 forms of eczema and Contact Dermatitis, CD, is closely related to Allergic Contact Dermatitis, ACD, the symptoms are just are delayed. Also with ACD it travels thought the body. You could be sleeping on a memory foam pillow for example and memory foam is made with an element from rubber, unlike polyurethane foam which isn't, the memory foam off gasses though your skin and you could react internally throughout your body if you have a rubber or rubber element allergy. I know this happened to me. My new memory foam mattress turned out to be killing me. It sounds like your doctor ordered many tests, but I am still confused. Did you Google the 5 Day Extended Patch Test? What was the name of your test kit? How many test sites? Perhaps some kits test in fewer days than the TrueTest. Normally application is day one, then day 3 1st reading and day 5 2nd reading and removal. Many allergens don't show up until day 5 and for some folks it's left on even longer. The patch kit test for chemicals and natural elements like rubber, preservatives, adhesives, fragrance, and so on it doesn't test for scallops or dust mites. The environmental tests, test for dust mites, pollen, grasses, mold, pets and such and that is a simple 30 minutes skin prick test done in the allergist or dermatologists office while you wait. If you are not sure if you had an extensive patch test kit, like the True Test, call your doctors office and ask for copies of you test, even if results are negative. My original testing was for about 78 sites, but recently had a metals panel done, another patch system of the True Test which wasn't run before. I keep records of all my test results positive or negative.
From what I know your doctor is right thinking the scallop or dust mite allergy isn't effecting your skin. I also have environmental allergies, have had these since childhood and antihistamines help with my symptom which is hay fever.
When our histamine level is elevated in our bodies it's easy to test. My derm told my husband to watch as he took a retracted ball point pen and very lightly wrote my name on my back. I had a red welt with my name showing.There is actually a medical name for this happening. Sounds like it is happening to you. I am wondering if elevated histamines are the cause of your reaction to getting bumped (your bodies histamines are fighting to rid you of something upsetting them and they are over producing).
As I mentioned there are many types of eczema and so diagnosis is not that simple as some of us have multiple forms with overlapping symptoms.
The New Zealand Dermatology site is the most extensive I have found in my searches, it actually lists GD which even the NEA site doesn't. Go to this site and study all the photos of any type of eczema that seems related to your symptoms. Study the photos, very graphic and many rashes will be far more severe than you have, but keep looking. That is how I figured out I had Perioral Eczema. I was helped by a blogger who shared about Perioral (I had never heard of it). Originally derm told me I had Rosacea or perhaps ACD issues (I had eliminated all my allergic contacts). Anyway after searching pages of photos of Perioral, bingo I found a rash just like mine, same location and appearance. I copied all info and took into her and she looked at it and said "Oh yeah that's what you have". Still I forgave her treating it incorrectly as she is the only dermatologist that told me my torso rash was GD, others had been treating it assuming it was ACD.
Right now, if not using already, order Grandma's Bar soap for Face and Body, previously known as Grandma's Lye Soap. Only 2 ingredients: lard and lye. Lye is transformed into glycerin in the old fashioned soap making process so all you contact is lard (moisturizing) and glycerin (moisturizing). I don't know anyone allergic to it. I keep a bar at each sink and shower and when at my worst wash my hair with it (works best for hair with soft water). Once I got my scalp calmed down I searched with my CAMP list from my True Test kit and found a safe shampoo for me. Safe doesn't mean it will work for me, as 1/2 of the items recommended should work but don't. So there are more allergens I am unaware of that I haven't been tested for. Yet the VMV Clark Wash is safe for me.
@gardeningjunkie I specifically asked two of my dermatologists if I could be having a reaction to my new mattress. Both said absolutely not because I did not have direct contact with the mattress, (sheets and pajamas would protect from that) BUT the itching / Grover's coincides to the EXACT week I bought a new mattress! SO, I changed out the new one for another supposedly (hypoallergenic mattress) but I think it still contains a lot of the same chemicals the first one had. I REALLY think this could be the problem. BUT I have also tried sleeping in a different room for a few weeks and that didn't clear anything……so???? Who knows. Off to the Mayo clinic it is! or else I buckle and pay for the 5 day [patch test!
It takes months to calm a body down from exposure to allergens. Once I knew what to avoid it took my burning feet 6 months!!!! No more foot pads burning. Heavenly.
Look up off gassing of chemicals. For me my True Test showed a major reaction to Mercaptobenzothiazole, MBT which is used to blend materials like poly/cotton, elastics, spandex and memory foam and a host of others. You have heard of latex allergies, that is another element in rubber and MBT comes from rubber. Until you get tested get a large piece of vinyl (clear heavy vinyl is sold on line).Vinyl is free of MBT and latex. Or you can order a large plastic bed pad, as used for bed wetting. Cover your mattress, then put on a thick pad or 2 of 100% cotton or a cotton cover with 100% polyurethane fiber fill (no blended materials) so sleeping is not too hot. This vinyl or plastic will block the off gassing. With MBT or latex allergies you can't even share your laundry loads with family members who clothes are blended or elastic as this contaminates our clothing.
Got to lawsuits about mattress chemicals, memory foam allergies, Tempurpedic Memory Foam Mattresses is a major offender as well as others. Loads of folks are allergic. 100% cotton sheets or blankets or pajamas do not protect, they are porous. Also our skin is porous. These off gassed chemical enter inside our bodies, not only while breathing but though our skin raising our histamines throughout our bodies.
I had both a skin allergy test and a patch test for chemicals. The patch test was only for three days though and negative for everything. As I understand it, I can be intolerant of certain things even if not full-on allergic, and I believe that is true. Thank you for the tips! I have been following this site for a while but this is the first time I posted.
Liked by gardeningjunkie, MariannJ
@gardeningjunkie Question: Not knowing ANYTHING about chemicals in bedding, I thought Polyurethane would be something to avoid or as part of the problem, why do you recommend a polyurethane fiber fill pad?
@gardeningjunkie I found a Dr locally that does a 4 day test. Could this be the same? They said they don't do a 5 day test T.R.U.E. TEST website recommended him and I also don't see a specific 5 day patch test on their site.
I can tolerate certain plastic or synthetic materials, it depends on if MBT is used. MBT is to accelerate the blending or combining of materials and comes from rubber. This was not done until the 80"s. Previously fiber allergies were normally to wool or if rubber was used as floor pads or rain boots or slickers, In England a "Wellie Rash" was common as from an early age children wore little rain boots made from rubber which contains an assortment of allergens, like latex and MBT. Maybe a dozen allergen. Poly/cotton is less expensive than 100% cotton and in many cases desirable as it wrinkles less. Even high end hotels normally use poly/cotton sheets and towels, not because they are cheaper and wrinkle less but they are stronger. Vinyl and plastic I don't react to as they are not a blend. Polyurethane fiberfill or foam is synthetic, like vinyl or plastic but since it is not blended no MBT. Basically all materials like memory foam, nylon, poly/cotton, satin, nitrite, neoprene, all elastics, spandex and many others need it to be made. It cannot be washed out. I can wear 100% polyester, once again not a blend, with no reaction.
All synthetics don't breath like good old 100% cotton. I prefer to use a 100% cotton covered and 100% cotton batting filled mattress pad as it is cooler, but as mentioned the polyurethane fiberfill is fine for me, it's thicken and lighter and doesn't tend to clump like the cotton batting. Yet I don't know about others reacting to polyurethane because it probably has elements others could be allergic to.
kimass1 as I mentioned without testing it's hard to guess what is causing our allergic symptoms. For years I had avoided common allergens which I wasn't allergic to and exposing myself to allergens I didn't even know about or ever heard of. Even if the doctor discounts his cost to administer the test which he is only a part of briefly the last day the test kit is the big expense. A tech puts the patches on a tech reads the reactions day 3 and day 5 and then the doctor comes in to verify their ratings the last day for a few minutes. Most insurance companies approve this testing. I had just started Medicare and with my supplement which my allergist accepted it paid for this test. Medicare does discount it, like all plans but in 5 years I have never had a doctor not accept Medicare and I have doctors in different states. If you could get a good insurance plan you could take advantage of their assistance. Maybe a rumor but one blogger said the Mayo wasn't accepting anymore Medicare dermatology patients.
Liked by kimass1
I may be using the old name 5 Day Extended Patch Test. 4 or 5 years ago that was the name my doctor used and it did take 5 days. Just 2 months ago my same allergist ran more True Test panels which were not administered the first time and it was for 4 days. I wondered if that was because he was working a 4 day week, but with your information perhaps 4 days is the new normal. Another person mentioned a 3 day test, however on my 5 day test some allergens that showed up as mild on day 3 were rated high by day 5. Also some mild reactions didn't appear until day 5. Perhaps the recent tests have chemicals or natural elements that can be read sooner. Good questions other may know the answer to.
I’m scheduled to start my 4 day testing on the 26th I’ll keep you posted. In the meantime I have bought mattress cover and pad. Fingers crossed we get to the bottom of it! Thanks again for all your help. You are appreciated!
Why don't they just do a biopsy?
Our postings may be confusing as we are discussing not only Grover's Disease, GD, but also other forms of eczema which overlap.Often ACD and Grover's minic each other. I was misdiagnosed for years as my doctors believed my torso rash was my already diagnosed ACD. I believe kimass1 is having testing for Allergic Contact Dermatitis, ACD, I'm not aware of biopsies that can identify allergen's for ACD. She also has GD. They can do a biopsy for GD, but even that for me was inconclusive as my breakout was not in the active stage.
Liked by MariannJ
I am so happy you are going ahead with the expensive ACD patch test. Please don't think you wasted your money if results are negative, at least now you will know to search in other directions, figuring ourselves out is a process of elimination. Glad you got the mattress cover and pads, your bed is the one place you spend the most hours per day in one location.
I had a biopsy and Grover's was found but I have additional Hives like and blistering rashes that popped up at the same time. I am trying to figure out what is triggering them or IF it's just associated with the Grover's … I just don't know and neither do any Doctors to this point. Since taking cilantro, the "typical" Grover's rash has gone, but the other rashes remain.
Liked by gardeningjunkie
It seems many of us have secondary skin issues in addition to the Grover's diagnosis. I suspect I may be in the same boat. In my late 20's-early 30's, I would get hives every time I took a hot shower, but that was so different. These were big welts, all over my torso, front and back. Nobody every figured out why and they mysteriously went away. Now, 15 years later, this pops up and is possibly also related to heat and/or sweat. Have any of you seen an endocrinologist and had a thorough work-up? My derm thinks that's going to be my next step if this week's blood/urine tests don't show anything abnormal. Also, (just venting here), I find it discouraging how outdated the research is considering how many people this affects (compared to the 70's) and how uncomfortable it can make us. I still have half my life ahead of me and may have to deal with this for all of it? Someone please study this further!
Liked by gardeningjunkie, kimass1
Have you looked into food testing for allergies? I wish I knew more about food testing My sister-in-law has an obvious flare up with hives after eating strawberries. I am convinced giving up processed sugar and severely limiting my gluten since Oct 18 has directly contributed to my internal skin issues calming down, as well as my female tissue area no longer burning and returning to normal healthy skin. I don't think I am allergic to processed sugar or gluten, it's that they breed yeast whose waste products elevate inflammation Could food trigger your hive like rashes? Based on another bloggers recommendation a few weeks ago I ordered a food allergy test kit on Groupon, it's only $35.00 and simple. Normal price is $135. At Groupon you register with site, get a code and send off your own hair sample. It's been weeks since I sent it off but a few days ago received confirmation they are testing it now. It checks for an assortment of food allergies like dairy, nuts and many more. I ordered the Silver Kit the middle priced one as it seemed thorough enough. After report is sent to me I'll report back if I think it's worth it. If you don't want to wait go to Groupon: Check My Body Health Food Sensitivity and Intolerance Test, offer expires Oct 17, 19.
If anyone knows of good food testing available with an MD let us know.
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