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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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@nodgabnoj

I have posted on this site several times about my situation, but I will give you a synopsis of my experiences with GD. I am 99% sure it was the shingles shots I got last summer and fall, that prompted my disease. I have a very healthy immune system, and virtually no shot of any kind had any kind of negative effects, swelling, pain, tiredness, etc., in the past. After my first shot, my ears started to itch, after my second, the itching spread and got worse and worse. I waited just two months and two weeks to get the second shot. Possibly, if I had waited longer I might have avoided this. So far I have tried just about EVERYTHING, including over two months of cilantro smoothies, with very little effect. Ironically, Motrin is the most effective itch stopper for me. I don't like taking it due to its negative effect on the kidneys. I never take more than four a day, two early in the day, and two before I go to sleep. I took the Motrin for an elbow problem and realized that, surprisingly, my itching subsided. I have also taken one week of oral steroids which helped. I've been told that one week is not long enough, that two weeks is far more effective, so I am going back to my physician to hopefully get another round. Similar to you, my clothing also can prompt itching. I bought a long sleeve t-shirt at Uniglo a year or two ago that might suit your needs. They also sell the long legged tights. Very light and smooth. I am furious at the Shingrix, the manufacturers of the vaccine, for not warning people about the possible negative side effects of the shots. I have already called the hotline and made my feelings known. I am going to send them an e-mail soon, as I think it's important that we go on the record about this. I really don't have any expectations about a result, but feel it's important, nonetheless. Thanks for sharing your thoughts.

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Replies to "I have posted on this site several times about my situation, but I will give you..."

I also have a healthy immune system - waited 6 months between shots, so probably that did not affect. I don't think anyone is aware of this as a possible side effect of the vaccination. Certainly dermatologists don't seem to be aware. The case of shingles I got after the last shot was pretty mild. Had never had shingles before. GD started almost immediately afterwards. But I had had itching between my shoulder blades for several years - worse at night, but never a rash. My husband was slathering cream on my back every night because I thought itching was caused by dry skin. Then after shingles resolved, my husband started seeing the rash which then covered my entire torso, front and back, wherever there had been previous sun damage. How these are all linked is an interesting mystery.

I am going to report my GD as a possible adverse reaction to the shingles shot. I would encourage anyone who feels they have had a similar experience to do the same. Because I'm new on this group, they won't let me post the link, but you can Google reporting adverse reaction to vaccination and you will find the government website. They will want the dates of the vaccine and dates of outbreaks of shingles or other symptoms. I'm also going to tell my MD.

Like you blame Shingrix for triggering GD or giving me over a month of Shingles, located on torso and looked very similar to past GD outbreaks except bumps were clustered in plaque like blotches. Recently talked to a friend whose boyfriend (an MD, an Internist) also got Shingles after getting the Shingrix shot.

I am not any type of anti vaxer. Got all my shots during childhood, from tetanus, mumps, measles, diphtheria, pox and whatever was available and offered during the 1960's and 1070's. Back then, there was not shot available against chicken pox or shingles. I did not have chicken pox as a child, but had it as a 20 year old. That was a bad experience, with terrible itches, fevers, misery. I got over that, but some scars from chicken pox are still visible 40 years later. So, when I got my flu shot, the doctor asked about whether I had a
refresher-shot for tetanus, and I said no, so he gave me that. Then he told me about the fact that the chicken pox virus and the shingles virus are similar, or one and the same, and that many people who had chickenpox will later in life get shingles. So, I also opted to get the shingles shot.
It's now about two weeks later, and I had specific side effects from the shingles shot:
1) The old scars from chicken pox started itching again, and there was a tiny red dot showing up in many of them. This is not listed as a possible side effect. Comments by experts are welcome!

2) On the arm which received the shingles shot, I can both see and feel an area of higher temperature, with prickles, itches and or a burning feeling at times, on and off. There are are also some red dots on the skin there, where there were none before.

The itching and burning sensation is showing up on a about 6 inch long and half inch wide area on the wrist, next to the tendons, on the right arm. The skin there has a different feel to it, and shows more little red dots. That burning sensation tends to creep up to the upper right arm, at the site of the shot, and then shows up further up, seemingly alongside or within nerves that go further up to the shoulder, and then towards the spine. The pain and burning is bearable, but it is worse than "when a foot falls asleep", and it impedes my work, because when you type and input data on a computer, your right hand is busy, and it gets interrupted if your whole arm feels like its burning, as with a sunburn. I should add that this is a distinctly different sensation from having tendonitis or fasciitis.
Also, the muscles in that arm appear to be more hard or tight. Is this nerve damage? Is it nerve inflammation? Thoughts from experts, anyone? Why is this side effect not even described in the medical literature?

3) Separate from that, I see now little bumps appearing in other areas of my body, which I have not had before. They are not red or inflamed, but feel as if some kind of lymph fluid is collecting underneath.

Overall, I do not know whether the combination of several shots all at once, (tetanus, mumps, measles, diphtheria, flu shot and shingles
shot) has something to do with this. I do not know whether taking Zoloft has something to do with these side effects. If I were to call my doctor, get an appointment, and ask all these questions, then not only will I be out $300.00, but the odds of the doctor saying "I don't know what's wrong here, and I can't fix it" are somewhere in the 95% to 100% range. I am not saying that doctors don't care, I merely see that too many times they do not know, and modern diagnostic equipment like MRI, Ultrasound, etc. does not improve their knowledge. It's sad to acknowledge that with many ailments modern western medicine has not progressed any further than 14th century medical knowledge. Faced with that, it is no wonder that people will try all sorts of herbal products, even if the effects of these are not provable, and even if some hurt or kill themselves with implausible or harmful ideas.

Something that gets me every time is the pharma ad statement: "If you are allergic to Bippetybappetiblubberymumabicatonesiladidamiladiphen, please call your doctor right away!".

The problem with that is
a) One cannot ever call a doctor right away!, and
b) one cannot possibly know whether one is allergic to an unknown new medicine! (Think, please!) and

c) that problem could be avoided, if the medical profession were DECENT enough to provide a small sample of the new medicine to the patient, so that the patient can bring it to the allergy clinic for tests to see whether a tiny amount causes an allergic reaction.

Item c) does sound like a reasonable request to me, but western medicine has an attitude problem, just like me. They might care, but maybe not enough.

As a result, I will not take the second shingles shot. I will of course take the Covid-19 shot, as soon as I am old or rich enough, because
it's the right thing to do, even if it makes me sick or kills me. Being dead, I will try to join the Greek God Zeus up in the clouds, and amuse myself with throwing thunderous lightning bolts onto the medical/pharmaceutical industrial complex. I am sorry that I started out serious and fact-based, but in due course I got off the rails, off a tangent, slightly unprofessional.

Legal disclaimer: If any part of this writing is considered illegal, wrongheaded or stupid, you are free to take the offensive parts out,
and leave the remaining sentiment intact. Thank You!