55 y/o female with Grover's Disease

Posted by kimass1 @kimass1, Dec 21, 2018

I was recently diagnosed with Grover's disease although I am not convinced it's proper diagnosis. The rash coincides with the purchase of a new polyurethane mattress. However, I have since moved to another room and it persists… so it could be coincidence. It started on my temples as little bumps that had an INTENSE ITCH and then they slowly progressed over a couple months down the back of my head, then neck, upper, back, then low back and around to my stomach with a few small outbreaks on my elbows. I was superscribed prednisone which was a god send. It stopped the itching completely and the bumps almost completely disappeared. Until I ran the course, and it all came back with a vengeance! The itching is awful! I can't sleep. No antihistamines work, no over the counter creams work. It's only been about three months since this all started and I can't imagine living like this for years! I have had custody of my 16 month old grand daughter since her birth so I can't afford to lose any more sleep! I need HELP!

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I began with Allergic Contact Dermatis, ACD in mid 50's and developed Grover's at age 65. Those of us with eczema often have multiple forms. Now I have developed 3. Has your doctor considered you may have multiple forms? Have you had the 5 Day Extended Patch Test, this exact 5 day test for ACD. Google it

I am not allergic to polyurethane, but still must protect myself from my mattress with polyurethane with a plastic or vinyl barrier, cover that that with a thick 100% cotton pad and then the 100% cotton sheets. No blended material sheets as they contain elements from rubber. That is because often mattress have blended materials in them which include an element from rubber, MBT. Also I am allergic to chemical used to a make a product fire retardant and some mattresses are. These chemicals off gas into the air and through your skin so a barrier is necessary. My Grover's began 6 months after we bought a memory foam mattress- memory foam may or may not contain MBT from rubber or another rubber element, clearly this element overloaded my system and raised my histamine levels.

I have not heard of Grover's breaking out at temples or elbows, very rare if that is the case so this makes me more suspicious that you have multiple forms of eczema. Even if you test positive for ACD, at least you eliminated that form for now and then can begin searching for other types you may have.

Check out New Zealand Dermatology, dermnetnz.org for self education as I believe this is better than any US site. Great info on Grover's. I have 4 out of 5 criteria, the 5th being that the majority are male. Very good photos while searching eczema/dernatisis forms. Rashes often have a specific look and location for each type.

Today order from Amazon Grandma's Bar Soap for face and body. Only 2 ingredients, lye and lard. The lye is converted in to glycerin so all you contact are lard and glycerin, both moisturizing and I have never heard of a reaction to this soap. This is an age old soap making process, just like our ancestors made it and doesn't include all the preservatives, fragrance and other allergy causing ingredients. I also use as a shampoo, but you must have soft water for it to clean hair well, for the body it works fine with hard water. Until you get patch test results (True Test is a common test kit given by specially licensed derms and allergists), you will never guess your way into figuring out what is causing an ACD allergy. Grandma's is now a Mayo Skinsafe approved product.

It was challenging diagnosing my Grover's because the derms kept assuming it was ACD, which has different triggers and treatments. Good for you asking this forum questions. A better blogging site is on Inspire, go to their eczema forum. We eczema suffers like to share, as eczema is not a precise disease and we all seem to find a program that works best for us and want to help others. Presently I am clear of all 3 types, yet my Grover's may be slowing starting as I am beginning to feel an occasional low itch. I started suing Calcipotrene Cream after showers, this is just a vitamin base topical yet is seems to slow the development of an outbreak. My first outbreak lasted 1 year, sequential outbreaks about 6 months on and 6 months off. I am now 6 months clear. I have been given a Kenalog 40, corticosteroid shot annually for my ACD internal skin issues, but it never helped with Grover's. Surprisingly this year, am going on 13 months without the shot. No internal all over the body inside skin issues

I also gave up all sugar, even natural in fruit and all carbs, not just gluten 2 1/2 months ago. Sugar and carbs can raise inflammation in the body from the residual yeast in our intestines. We have to starve off the yeast for it to die. After 5 weeks started noticing improvement with female symptoms, facial flushing and no ACD issues (of course I will need to control contacts for live and do so religiously) and also sugar craving diminished. Now 2 1/2 later don't think about sugar, which is because my starved out yeast is not sending messages to my brain demanded the foods that feed it Your experience with steroids is classic, many get a whip lash so I avoid unless desperate. You seem to have gotten a reaction sooner than most and probably always will, so actively search now for other options.

Be a warrior, I was and now lead a productive and joyful life.

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Thank you so much for the information. I will be sure to look in to all of those options. I am willing to try anything to get rid of this! Wishing yo well!

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I saw the dermatologist last week who diagnosed my Grovers disease following biopsy one year ago after suffering terrible itchy skin and what looked like bug bites for couple of years. He was very pleased with the condition of my skin and feels I’m nearly in remission. However as soon as I got into bed that night I erupted in red rash all over back, shoulders and continue to get random eruptions. Just now on buttocks. Most frustrating. I can’t live without steroid creams,Benadryl at night etc. he said moisturize skin 2-3 times a day and try to minimize the prescription steroid cream. So I’m trying over counter creams with oatmeal. Tried to get appointment with allergist but they need me to stop antihistamines for 5 days prior and impossible. Sorry to vent but really affects quality of life. Ready to try cilantro smoothies. I’m still thinking cats have something to do with it but can’t get rid of them. Help!

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Cilantro smoothies are the way to go. Mix them with juice and berries in your blender for a couple of minutes. The capsules don’t work. Use half a bunch of Cilantro and freeze the rest. Read this blog every day. More information here than in your doctors office.

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I tried the cilantro smoothies for over a month without any improvement. Any other suggestions? I am a 67 year old female with Grovers Disease. My rash is on my back solely and burns instead of itches. I have seen excellent dermatologists and was referred to a neurologist. He prescribed pain meds and also had me have three MRI’s on my back. All MRI’s came back fine. I am desperate to find someone that has had the burn, rather than itch.

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Join the Grover’s Disease Support Group on Facebook if you haven’t already. Lots of great advice. Go gluten free. Try Gold Bond extra strength body lotion with menthol. These are a few things I have learned from the group. So sorry you are dealing with this. I was diagnosed in March.

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I have had this for a year and a half, I have most of the triggers for it. Stress from being evacuated in 2020 for a month due to a fire, radiation for breast cancer and kidney issues. I was first put on predizione which worked well and as basically under control but it came back in May due to heat and stress. I went on another course of prednisone which worked till I went off and it came back.
I changed to using Dr Bronners baby soap and instead of lotion I am using jojoba oil, I also have a prescription for Floucinonide cream for the itch which works really well. I am on day 4 of the cilantro smoothie and if I keep it all up it seems to be working. I also started taking Vitamin A which has been said to help …

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@ginaspindle

I tried the cilantro smoothies for over a month without any improvement. Any other suggestions? I am a 67 year old female with Grovers Disease. My rash is on my back solely and burns instead of itches. I have seen excellent dermatologists and was referred to a neurologist. He prescribed pain meds and also had me have three MRI’s on my back. All MRI’s came back fine. I am desperate to find someone that has had the burn, rather than itch.

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Surprised they sent you for an MRI. I don’t think it is relevant for GD. Different things work for different people. Apparently ice is fairly effective. There is very little research on the disease. More knowledge in this blog than almost anywhere

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@nodgabnoj

Surprised they sent you for an MRI. I don’t think it is relevant for GD. Different things work for different people. Apparently ice is fairly effective. There is very little research on the disease. More knowledge in this blog than almost anywhere

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The MRI’s were done because my skin burns and is hot to the touch. I do not, and have never itched. I tried the gluten free diet and did not have any change. I will try it again. I also did the cilantro smoothies.

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I suggest you go to previous blogs here and read Gardening Junkies posts. She is extremely knowledgeable and does copious amounts of research on many different issues pertaining to skin problems. She is just as knowledgeable as most doctors, maybe more so.

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@nodgabnoj

I suggest you go to previous blogs here and read Gardening Junkies posts. She is extremely knowledgeable and does copious amounts of research on many different issues pertaining to skin problems. She is just as knowledgeable as most doctors, maybe more so.

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Thank you, I will!

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Good. This site has more good info than any where else.

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