Grover's disease

[Elisa]

Hi Jeff,

Good to hear from you inspite of your news of a terrible sinus infection.  I do hope that it is now cleared up.  You are right, my Grover's is status quo, doesn't budge, still ugly, not itching and not really that bothersome now I'm used to the splotch of red/brown spots in the middle of my chest.

However, my two annular fingers are something else.  The one which began hurting just after I was diagnosed with Grover's has become considerably worse and the treatment from the Hand Clinic hasn't finally helped at all.
I've now had two injections in the finger with a non toxic oily substance which is supposed to ease joints.....the first injection did indeed seem to relieve the pain but the second injection was so excrutiatingly painful (even the anaesthetic injection prior to the product was ghastly) that I don't think I will continue down that route.  The doctor also injected my other annular finger which until then was only just starting to be uncomfortable and now it is worse.  I guess I could have the old fashioned corticoids injected directly into my fingers but I hate toxic stuff and I'm trying to do without.  Nonetheless if this spreads to my other fingers I am going to be in real trouble.


Stay well and let me know if your Grover's completely disappears (which I hope for you)!
Take care,

Elisa


PS. Hope you are ok Sarri !

[Sarri]

Hi Elisa!

I am hanging in there. I've def seen some improvement with the Vitamin A therapy - which I just completed last week. But, it's not a cure-all by any means. I still have my outbreak everywhere, but the spots are almost all clearn now, but they itch like CRAZY!!! GGGGRRRRRrrrrrrr! CRY!!!! The Vitamin A will take another month or 2 to exit my system, so I am still hoping that it helps me. I did breakdown and use some steroid cream on my chest last week, which has helped. I've been so depressed about this disease on and off - it's been a rough road for sure, but I am trying to stay positive. There are much worse things in life, and I keep reminding myself of that - even though it doesn't always help much. Thanks for thinking of me. I often say a prayer for my Grover's "friends" - hoping that this is the day that all of them are healed! Oh well, you hang in there as well. I am sooooo sorry about your fingers. I can't imagine having that on top of itchy ugly spots. Stay strong!

Sarri

[jd1]

Hi Itchynky

Your seafood consumption sounds similar to what mine used to be.  I ate some salmon from Scotland a couple of weeks ago - and my daughter saw my back the next day and commented that my grover's was acting up! 

What is the "blue light"?  I am not familiar with that treatment.  What other treatments have you tried?

[TomA]

Itchy Rich,
Thanks for your thorough history. I'd like to learn more about Neurontin.

In June 2008, I began seeing Dr. Jack Resneck at UCSF in San Francisco.  He prescribed Neurontin and within a short time the itching was pretty much gone and remains so today.  I have had a few itchy moments (overnight) but nothing lasting more than a day or two.  The rash continues to be present, as always, but it is not as red or “sore” looking.

How long were you on it? What was the dosage? Did you experience any side effects? How expensive was it? I've occasionally had a rash, but usually just individual spots. How widespread is this rash? I've started getting some new spots, some quite itchy, but I was only on Soriatane for a month.

After all your years of suffering you deserve relief.

Look forward to hearing from you.

TomA

[Elisa]

Hi Sarri and all you Grover's friends,

I have a question:  Has anyone done the "Imucor 400" blood test?

This simple blood test is to detect allergies from 400 agents (foodstuffs etc) our bodies absorb.  The reason I ask, is that I visited a specialist in toxins here in Paris, as I'm convinced that my Grover's and my probably related swollen fingers are the result of toxic "poisoning".  This particular doctor suggested I do the Imucor blood test but I find it extraordinary that this test is not available here under the regular state health system and is only analysed in two places in Europe, in Luxembourg and Germany.  It is also pretty costly.  I have called several laboratories to find out if I could've made a mistake about this information but apparently I have not.

Shouldn't this test be readily available for everyone? Have any of you done it and found anything?

Many thanks for your views,
Best,
Elisa

[jd1]

Elisa,

If you look back, you will find Drew's posts where he explains his theories re Grover's and what he has done to achieve healthy skin.  He is convinced that Grover's is a reaction to toxins trapped in the body.  Chelation to remove heavy metals did not give him the relief that it gave several of us, and he left no stone unturned in figuring out what was toxic in him and how to get it out.  The point is that your specialist is saying what others here have already experienced - Hg is of course a toxin, and several of us benefited by reducing our body's burden, and Drew feels that other toxins also play into the disease and has found his path to good health.

As for whether this test should be covered and available free to all....you pay for what you get.  My doc doesn't take insurance, and I wouldn't want him to.  I pay him.  The care I receive is much better than what a doc who is being squeezed by the realities of practicing medicine in the US as a captive of the insurance companies can possibly provide.  The tests that he orders for me are rarely covered because they go much farther than what is considered "ordinary and necessary".  The labs don't even negotiate with the insurance companies.  The insurance companies cover what they consider reasonable, and that might differ from what is considered best.  I know that our health care systems are quite different, but the bottom line is that they all have to draw a line at what they will cover to manage costs.

If you trust the specialist and if you can afford the test, give it a shot.

[Elisa]

Thanks JD1,

I will indeed give the test a try and have made an appointment for next Friday but it will be at least three weeks until I get the results back from Luxembourg. 

What you say about laboratories and insurance makes complete sense.  It's just that I've never had to think about things like this before.

All best,
Elisa

[Sarri]

Hey Everyone,

Just stopping by to say "hi" - I can't tell you what a huge support all of you and this site are to me. I had a pretty bad week emotionally last week - Grover's is just taking it's toll on me. But, I am hanging in there, much thanks to several of you.

Anyways, I think Drew's thoughts are definitely on target with a possible cause behind Grover's. And, Elisa, I am curious as to what your bloodwork will reveal. Please keep us informed, and I hope you find some much needed relief for you hands soon.

Well, it's definitely cooling off here in Ohio, so I can actually go running now without sweating buckets - causing my Grover's to spread, so that's a relief, and my spots are for the most part clear and fading. YEAH!!! But, I am still very sensitive to certain fabrics. BOO!!!

Best wishes everyone and have a great weekend!!!

Sarri

[TomA]

Sarri,
Sorry to hear about your bad week. that's a bummer. I went on the Soriatane last spring when I became so shot emotionally from the pain and discomfort I just had to try something. It really started striking me after four plus years that this was a life-time disease and I didn't know how I was going to put up with it after several severe outbreaks where all my nerves were on edge.

Only someone who has experienced Grovers can really understand, and I feel for you. Mine is starting to come back now, and I'm realizing how nice it's been for a few months to be without the constant pain, especially at night time. For me, it always seems to be at its worst when I go to bed.

Hang in there, hopefully the cooler weather will bring relief.

TomA

[Sarri]

Thanks Tom!

I hope your latest outbreak is short-lived. I have good days and bad days, but I try to SMILE through it all - life's too short not to make the most of it, right? As for your Grover's flaring up at night - maybe you need to change your bed linens more often??? Or, maybe - get something with a different fabric. I had to trash my warm-wintery-comfy-flannel sheets last winter because they made me too warm - inducing sweat - thus, causing more Grover's spots. Anways, I am sure you've thought of ALL of this, having the disease for 4 constant years....for the most part. Ugh! You have my empathy for sure! Keep in touch.

Best wishes,
Sarri

[Geraldine]

Hi to all who are getting Grover's messages...and am figuring out that we all get notified re all new postings.
I gather that the Soriatane worked for TomA? the Derm specialist who finally (after 2+ years of other puzzled docs) diagnosed my Grover's mentioned Soriatane...but wanted to try the topical steroid first...I found the topical steroid caused more problems than it helped. Unless I'm imagining things, the two weeks of TS left the "treated" skin area so sensitized that I can hardly tolerate the touch of clothing, let alone anything like an even slightly tight waistband.  
If the Soriatane worked, why does TomA not go back on it? Has it worked for anyone else?
One thing that does give me some temporary relief, is hot, wet packs applied directly on the area...hot as I can tolerate. Then the immediate application of Sarna. Then I apply Gold Bond medicated powder (green container). This may give me 1 or 2 pain free hours. This remedy was mentioned on Peoples' Pharmacy for other rashes such as poison ivy, etc. The heat short circuits the pain path. The pain is still there, but not getting to the brain. You don't want to use this remedy too often, just when you think you are go totally crazy, as it dries the skin out even with the Sarna application. I also apply just Sarna and Gold bond several times a day. Would not survive without Sarna!
Geraldine

[TomA]

Sarri & Geraldine,
The timing of the pain is as I'm getting ready for bed, after I treat it and get to sleep I'm OK except on the bad days when it stays irritated all night. I use Dovonex or Lidocaine. Both seem to irritate it more at first, but help it to settle down after a while. I've got Sarna as well. I really don't like the smell, but it does seem to help and isn't prescription.

The Soriatane did relieve the condition almost totally after only a month of treatment. I went off for two reasons. It's expensive, around $130/month after insurance, and my flex spending ran out. There are also numerous side effects as with any of these treatments. First, you can't use it if you are of child bearing age, it can cause severe birth defects. As a male, I can't even give blood for three years. With my luck I experienced most of the side effects fairly quickly. Most you can live with for a while to get over this terrible disease. Dry mouth, joint pain, tight muscles, chapped lips, peeling skin dry eyes. There are more serious side effects of headaches, blurred vision, nausea and depression. These were not a problem, except for the depression. Right as I was going off the Soriatane a terrible depressive mood hit, which is very atypical for me, and I knew I'd have to go off it if I wasn't already doing so. I was afraid the one month treatment was going to do nothing, but it did. Doctors talk of doing it for months and you have to go in for regular blood tests to check your blood fats and liver. But if a short-term treatment or lower dosage would work, it makes it much more worth while.

Why haven't I gone back on it? I may, but not yet. Before and after Soriatane, I've been on a high dosage of Vit. A. It didn't seem to help before, but since I've wondered if it helped as part of a maintenance program. Soriatane is a Vit A derivative, so you have to go off all Vit A, even multiple vitamins while on it. But afterward I went back on it. I've recently run out and I'm going to buy more today and see if it helps. I haven't gone back on it yet because my symptoms haven't been bad enough yet to warrant it. If it keeps getting worse, even with the Vit. A, I may talk to my Derm about another short course.

Best of luck to both of you.

TomA

[Geraldine]

Hi TomA,
Thanks so much for your detailed reply! It really helps to know what some of this is, does and means! Also very comforting to know I'm not the only one with this confining and confusing disease! Now I know what to expect (maybe...seems there are many reactions to condition as well as "treatments") with the Soriatane.
Later! And thanks again!
Geraldine

[reedweb]

Geraldine,

 Yes, the hot packs (I used washcloths w/hot water after my shower) do alleviate the itch but Grover's seems to thrive on the hot afterwards so I've stopped doing it. I'm now going into the beginning of my second year with this and it's growing everyday on my lower legs, forearms and chest...just when it was about gone a month ago...aarrrggghhh!!!!! To all with this...I feel your pain (itch). Just venting folks...hope you don't mind... I'm here to see if something comes to light that might help us all and to share if I can.

Be well,

Reed

[Geraldine]

Thanks, Reed!
I'm into my 3rd year. The first couple were pretty much without eruptions...but days of burning pain in the torso and stomach area. Now, after finally getting a diagnosis (for whatever THAT is worth!) I'm having new eruptions almost daily. And each is very painful...stabbing, burning pain.
Now a question. I also have under the skin "welts" I can feel these elongated welts which I know about because of the pain, but they aren't visible. Anyone experience this...along with burning, itching eruptions, of course...?
I'm almost to the point of trying the next step mentioned by the diagnosing derm...Soriatane.
Any one have any good results with Acutane as an alternative to Soriatane? ARE there any options?! The past two days, and even part of last night, have been awful!
Geraldine

[Seattlejeff]

Thanks, Reed!
I'm into my 3rd year. The first couple were pretty much without eruptions...but days of burning pain in the torso and stomach area. Now, after finally getting a diagnosis (for whatever THAT is worth!) I'm having new eruptions almost daily. And each is very painful...stabbing, burning pain.
Now a question. I also have under the skin "welts" I can feel these elongated welts which I know about because of the pain, but they aren't visible. Anyone experience this...along with burning, itching eruptions, of course...?
I'm almost to the point of trying the next step mentioned by the diagnosing derm...Soriatane.
Any one have any good results with Acutane as an alternative to Soriatane? ARE there any options?! The past two days, and even part of last night, have been awful!
Geraldine

Geraldine:

It seems like Grover's is very individualized.  Since the cold weather has hit here in the Northwest I have noticed eruptions on my back and chest.  My back, thankfully, does not itch, but the neck area does.  The bumps are sparse but still troublesome. 

I have been applying Selenium Sulfide solution to my back with some results.  My doctor also put me on a three month course of Itraconazole, an antifungal.  I use Sarna and Cetaphil which helps during the day and at night.  Also baby talc helps prevent the spread.h

I was diagnosed in Feb of this year, so I sympathize with your dealing with it for three years.  What happened to the six month duration?  Anyway, mine is flaring up and it makes me angry.  We all try so hard to deal with it, and it is so frustrating.  Some things work for some, some things for others.

I do not have under the skin welts yet....I'm wondering if that is related to the Grover's.  I had something like that on my shoulders and my derm told me it was adult acne.   But you should have it checked out if it is something more serious.

This site has been a life saver for me to learn from and vent when I need to because everyone is in the same boat.  Everyone is very caring. 

Perhaps some of the ideas I gave you might help.  Oh by the way, I've tried a soap with a low concentration of tea tree oil and that seemed to help.

I hope you feel better and the pain begins to subside.  Remember, Sarna is a good temp fix for itching.  For pain, maybe ask your dock about tylenol with codeine or a pain reliever.  Also, if you can't sleep Ambien or Lunesta will help you drift off but you need your doctor's approval and prescription of course.

Take care of yourself,

Jeff

[reedweb]

Geraldine.

Yes, I had the elongated welts on my right forearm just before this recent outbreak began (they itched like crazy too). The outbreak of spots then went to my lower legs, torso, back and right arm. This is how it all began with me...an elongated welt on my thigh last October. Being a diabetic, I use an anti-bacteria ointment along with 2% hydrocortisone/moisturiser (derm perscription). I don't need another ulcer on my ankle so if it gets worse I'll have to do the steroid/antibiotic treatment again which does seem to stop it in it's tracks (for a while) but elevates my sugars. Gotta pick the lesser of two evils and that's it.

Take care,

Reed

[Geraldine]

Thanks, Reed! Good to know the welts are not just me! Yes...ithch like crazy!
The Monday Grover's hell day eased off Tuesday and was also better today. Gets worse as the day heads into evening and night. Now I'm trying to get my Primary care doc to return my "What's next re treatment plan?" phone call. This is his nurse's arena...and no response since my Monday afternoon call...to add to the pain and stress!
Geraldine

[Seattlejeff]

Hi Sarri and all you Grover's friends,

I have a question:  Has anyone done the "Imucor 400" blood test?

This simple blood test is to detect allergies from 400 agents (foodstuffs etc) our bodies absorb.  The reason I ask, is that I visited a specialist in toxins here in Paris, as I'm convinced that my Grover's and my probably related swollen fingers are the result of toxic "poisoning".  This particular doctor suggested I do the Imucor blood test but I find it extraordinary that this test is not available here under the regular state health system and is only analysed in two places in Europe, in Luxembourg and Germany.  It is also pretty costly.  I have called several laboratories to find out if I could've made a mistake about this information but apparently I have not.

Shouldn't this test be readily available for everyone? Have any of you done it and found anything?

Many thanks for your views,
Best,
Elisa

Hi Elisa,

The Imucor 400 blood test sounds similar to one I had performed in May.  I was so desperate to get rid of another pesky rash, and of course the Grover's I would try anything.  My nutritionist suggested having a food and chemical sensitivity blood test.  This laboratory takes your blood and tests it against a number of Chemicals, Dairy, Flavor enhancers, Fruits, Vegetables, Grains, Seafood, Meats and Poultry, Miscellaneous....teas, coffee, and so forth, Beans/Nuts/Legumes.  It comes back with a report of your test reaction levels from non-reactive to moderately reactive, too reactive on each.  It is done through Signet Diagnostic Corporation in Florida, and is also known as LEAP Lifestyle Eating and Performance.
The phone on my test is (561)848-7111 in the US.  I would go on Signet's website first though.  It also comes with a LEAP Immuno Calm Dietary Management Program based on your results.

It is not covered by insurance nor FDA approved here in the U.S.  Some of my doctors buy into it, others don't like my allergist.  It cost about $400.00.  I saw some improvement after starting the program and eliminating the foods with both my Grover's and rash.  But the colder weather here or something auto immune I think, has triggered something for them to come back to a lesser degree even though I am still adhering to the diet.

I'm interested in your test as well because it tests against 400 items instead of 150 if I read correctly.  Anyway, thought I'd let you know.  The blood is overnight expressed to the laboratories and the results come in about four weeks by the way.

Just an FYI

Take good care,

Jeff

[Elisa]

Hi Jeff,

Thank you for your last posting about the allergy-bloodtest.  The one you did in May sounds just like Imucor 400 which I did last week and am thus still awaiting the results (around November 8th I'm told).
It's exactly as you describe, a simple blood test which is then sent to the laboratory (in Luxembourg for us here in France) and the results should be straightforward to understand.

I am more and more convinced that I have toxic poisoning and as I get older I am beginning to be allergic to quite a lot of foods.

I will let you know once I get my results and meanwhile will check out the website of Signet you suggest.
Take care,
Elisa
P.S.  I'm scared to say this but my Grover's seems to be clearing up all by itself (no treatment - so this is before I start the new diet following the results).  It's just fading away....However, my fingers are a mess.