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

Skin Health | Last Active: Nov 4 2:57pm | Replies (2012)

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@southerngirlatheart

Been lurking around reading everyone's posts for almost a year now and finally posting.

I am a 54 year old female. I was diagnosed with GD in Aug 2022 by my dermatologist. I had originally thought it might be a form of chemo rash that I had gone through a couple of times between Oct 2021 - April 2022 but the usual drugs for chemo rash did not work. My GP was perplexed and advised I see a dermatologist after hydroxyzine and creams did not work. My new dermatologist asked me lots of questions and looked at all of my bumps, scratches, and bruising(from intense scratching) and diagnosed me with GD. She seemed confident in her diagnosis without a biopsy.

She prescribed steroid creams, hydroxyzine for nights, and up to 4 zyrtec for daytime. It helped but was still having recurrence/flares that drove me nuts. I was also told to use unscented moisturizing soap like Dove or Oil of Olay and to stay cool as heat and especially sweating was a huge trigger. I also started using sunflower seed oil after my showers as I had read on this thread that it helped. I also tried several different types of creams to no avail.

My dermatologist wanted me to try Dupixent but I declined as I had read of some concerning side effects. I asked about photo therapy and she advised against it for me because I have very fair skin, a family history of skin cancer and I am a cancer survivor with treatment that included radiation. She said my skin cancer risk was too high. After another flare-up, she asked if I would like to try Adbry as an off-label treatment of GD as she had read reports of other GD patients having success using it. Adbry is a biologic injection developed to treat moderate to severe atopic dermatitis.

I started with loading doses of Adbry in January at the doctor's office and I am now on maintenance doses of two injections every other week. The suggested maintenance is a monthly double injection but because my symptoms start to appear around the 2 week mark, she is keeping me at every other week.

It has been a godsend. No more heavy itching resulting in scratches and bruising. A few days before my next dosage, I sometimes get a little itching under my breasts or in the creases between my upper thighs and torso or around my armpits as that is where my skin "stays hot" but it isn't super intense like before.

My insurance company denied the drug 3 times but luckily Adbry put me in their bridge program which allows me to continue receiving the drug at no cost for 2 years. I will be covered under a new health insurance company next month but my dermatologist said she would not seek drug approval again until a few months before the bridge program runs out around March of 2025ish.....I think. (The original doses were free samples so I cannot remember when the actual bridge started.)

Luckily, I have had no side effects other than accidently puncturing a vein a few times when self injecting into my belly or thighs which is really just user error...lol Hopefully, some of you here on this board can inquire about this drug with your doctor to see if it might help you as well. I know many prefer a more homeopathic treatment but I thought I would tell of my experience as well if it could help others. I considered doing the cilantro smoothies but I knew I would have trouble maintaining it.

I do wonder, as well, if it's related to heavy metals as one of my chemo drugs contained platinum.

Best wishes to all of you (:

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Replies to "Been lurking around reading everyone's posts for almost a year now and finally posting. I am..."

So nice of you to share all this information. I will look into this and educate myself on these injections. Currently i am trying so many creams. I always like to go the holistic road however as of now no relief. Happy you are feeling better! May you stay itch free!!!

I don't know your circumstances pertaining to your access to fresh cilantro, but most grocery stores have home delivery. I also learned how to keep it fresh for at least 6 days in the frig and if I bought excess I would wash, dry and place in indiviual portions in the freezer, the fresh frozen worked just as well for me. Sometimes cilantro can look tired even in the best of grocery stores, but even with home delivery I image you could get a refund if you find it unacceptable.
If you are concerned about heavy metals in your blood based on your chemo, perhaps your insurance will justify medical blood chelation to remove heavy metals by filtering your blood.
The theory is that cilantro and other herbs can remove heavy metals, but perhaps there is also something else in these herbs helping some of us go into remission.