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

Skin Health | Last Active: Dec 6 3:31pm | Replies (2018)

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@ccamargo82

I wanted to update you guys on my current GD treatment experience. My main course of treatment is the bi-weekly injections of Dupixent that I mentioned several weeks ago. Insurance doesn’t want to pay for it since it’s not FDA approved for GD. However, the dermatologist gave me a couple of boxes to take home, so I’ve just been administering into my stomach via EpiPen every two weeks.

I’ve experienced no side-effects from the Dupixent, but whether or not it is working remains to be seen. As of today (08/13), it has been a little over six weeks. The doctor told me that we need to give it three months to determine if it’s really helping. While I have not had any worsening outbreaks, the Dupixent might have possibly stagnated the GD. However, none of my existing spots are healing up, which is what I’m really wanting to happen.

I’ve quit applying calcipotriene at night, just because of the expense of going through tubes so quickly because of the area that I’m covering. Instead, I just apply Gold Bond every morning and every night, which is annoyingly messy, but does help combat the itching. Although I'm considering phasing out the Gold Bond just to see if it's the possibly the Dupixent that helps the itching.

I just hate that the majority of my GD is on my upper chest and hovers around my lower neck, making me not want to wear anything other than crew neck shirts all the time to help mask it. Even in crew necks, you can still sometimes see some of the higher-up red spots.

Other than that, it’s just occasional Epsom salt baths. I abandoned the cilantro smoothies, since I felt like it was causing my digestive system to act very bizarre and have currently been experimenting with collagen peptide powder in my smoothies.

The jury is still out on the effectiveness of Dupixent, but I will provide an update at the three month mark to share whether or not I feel it's a possibly treatment worth pursuing for others.

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Replies to "I wanted to update you guys on my current GD treatment experience. My main course of..."

Thanks for the update. I'm sure you must be somewhat disappointed that the results are minimal so far with the Dupixent, but you might as well continue for the full 3 months. Please do give us another update at that point.

Also interesting to me was your observation about the cilantro smoothies. I have never tried them, but I bought a bundle of it recently and wanted to see what it tasted like, so I put a tiny bit in a salad. YUCK, that stuff is terrible!
Of course, the smoothie devotees throw lots of taste-disguising ingredients into their smoothies to avoid tasting it as much as possible, but I really have to give them credit for subjecting themselves to this cilantro in its fresh state. Of course if it works well for them, I'm sure it is worth it!

As far as your attempts to control your itching, I recommend a cream from a company called CeraVe. I use their Itch Relief Moisturizing Cream, but they have other formulations as well. Some people on this forum have also used Sarna, but I found the smell of that stuff to be unbearable, whereas the CeraVe has almost no smell at all and works pretty well. Also, if you can take it, put an ice pack on the itching area and your skin will become numb and stop the itching at least temporarily.

Good luck!