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

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.

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!

The cilantro did indeed taste terrible and basically made every smoothie just taste like I was drinking salsa. I was using half bunches and I just sometimes felt off, like I would get all jittery, my stomach would make all kinds of racket, and I just felt like something wasn’t right. Once I eliminated the cilantro, I felt fine. But keep in mind, this is only my experience. Many people are perfectly fine with cilantro. I have no interest in experimenting with it again.

Honestly, I don’t really itch at all anymore, but I’m not sure if it’s because of the Gold Bond powder applications or the Dupixent, so I intend to lay off the powder to see if it’s the Dupixent that is helping the itching.

It has been a while since I have posted on here since I have been symptom free for almost two years now. I still recommend this site to everyone on the Facebook Grover's site and try to recommend the cilantro, cotton, etc. I just want those of you who are suffering to know that I totally stuck to the whole 30 food plan, wore only loose cotton and slept on cotton, did the cilantro smoothies regularly and then intermittently for security. There is definitely hope for you and if you go to my previous postings you can follow my experience. I can now wear regular fabrics and eat off the plan. Life became normal. (However, I came down with another rare disease, GCA, and am suffering with the prednisone side effects now.)

For what it's worth, I stopped the Cilantro smoothies a couple of weeks ago. I had been taking them every day for at least two years. I had not been suffering too much and nothing changed. I bought the drops and have been taking them once a day. Again, my itching continues, but is minimal. I have never been symptom free, but it is certainly less intense than my initial out break about 3 years ago. Hard to say whether the drops make a difference, but the smoothies definitely did. Just got tired of the smoothie routine.

Thanks for the update, @nodgabnoj . I never started the cilantro smoothies at all because I knew that I wouldn't want to stick to a routine that required what that routine does. I went for the drops from Herb Pharm because that was so much easier and I knew I could stick to that. I started it on 6/9/21 and take them twice/day about 12 hours apart. My Grover's sores have become far lighter in color, less numerous and less itchy. However, every once in awhile I get a new single sore here or there that flares up and itches just as they did before I started the Cilantro drops, but even so, this is a huge improvement over the large patches of sores I used to get back when the disease was much more intense. Of course I want to contribute the improvement to the cilantro drops, but there is no way I can be sure of that. I will continue this routine indefinitely and hope for the best. Just a suggestion, but you might want to do the drops twice/day. Good luck!