Author Topic: Grover's disease  (Read 974412 times)

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Offline Waybad1

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Re: Grover's disease
« Reply #1980 on: Saturday June 22, 2019, 06:12:31 PM »
I'm just 4 days in with the Accutane. I certainly have used the hair dryer as per you recommendation. The worst issue I have is night.
I also work out in the son a lot. So far no side effects, but only 4 days in

Offline fresedo

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Re: Grover's disease
« Reply #1981 on: Tuesday June 25, 2019, 09:35:03 PM »
One month later, following my message #1971 I am happy to report that after diligent midday sun exposure, I have acquired a creditable tan but what is more my Grover's has been pretty much burned off by the sun.

Offline Waybad1

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Re: Grover's disease
« Reply #1982 on: Sunday June 30, 2019, 04:23:10 AM »
11 pills in now and the rash is definitely fading. The itch has also subsided, but definitely not gone. It likes
to give me a reminder everyday. I have slept better this week the I have in 2 months. No side effects but very
dry lips. Although this may not be a cure, it is nice to see the rash subside and not leave any evidence it was
ever there. It has rebuilt at least some of my self confidence back. To any who are reading, I will report back in a week or so

Offline Waybad1

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Re: Grover's disease
« Reply #1983 on: Tuesday July 09, 2019, 04:12:44 AM »
21 days on Accutane. The rash is about 70% gone. The itch is definitely less as the days go by. I still itch for sure when I
sweat, but less then before. No side effects besides the dry lips. I will be going in on the 10th of this month for blood tests
to see how my liver is doing.

Offline Waybad1

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Re: Grover's disease
« Reply #1984 on: Friday July 12, 2019, 12:53:01 AM »
A quick update. Yesterday I was sweating quite a lot while fixing a clothes dryer. I had no itch at all
That is the first time in 17 months that has happened. I woke up this morning with a slight itch, but
by the afternoon it was gone. I do have to note that I got some acne on my chest that I have never had before
It came about a week in. but is now fading.

Offline Waybad1

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Re: Grover's disease
« Reply #1985 on: Tuesday July 16, 2019, 05:29:17 PM »
So my blood test results after 26 days on Accutane were surprising. AST is 29. It was 27 before. ALT is 27. It was 30 before. My total cholesterol however has gon from 171 before to 223. The doctor said it is fine to continue on taking the Accutane. Also the last 2 days have been virtually itch free. Heavy sweating while i'm working outside in the CA sun bring on a little itch, but it goes right away after I dry off. I just hope this continues after I stop taking Accutane. As mentioned before, zero side effects but severely dry lips and some acne on my chest. The benefits so far, far outweigh the side effects

Offline Waybad1

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Re: Grover's disease
« Reply #1986 on: Friday July 26, 2019, 04:42:54 AM »
38 days in, and I have to say it hasn't gone as good as I had expected. It has been hot and humid here in Southern California
so I have been sweating as I work on cars outside. It stops itching as soon as I cool off, but after 17 months of torture is just
doesn't seem to be enough. My dermatologist says to be patient and give it at least 3 months. Still the only side effects are dry lips, nothing more.
On a positive note, I no longer itch at night at all. That was a huge issue before, getting up at 2am to take a hot shower. The itch was also
much more intense before. I will post another update in a couple of weeks

Offline bookbear

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Re: Grover's disease
« Reply #1987 on: Friday July 26, 2019, 04:10:02 PM »
Glad you are getting at least some relief.  Please do keep is posted.

Offline Waybad1

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Re: Grover's disease
« Reply #1988 on: Wednesday July 31, 2019, 03:04:45 AM »
42 days in. Today no itching, although I have not sweated for the last 3 days on purpose. Even when I'm not itching
there is always an uncomfortable feeling with my skin and I feel like ripping it off. My back feels like it is burning even
without itching. I have not had that feeling for 3 days now. My lips are in rough condition even though I use Aquaphor
about every 20 minutes. I am on my third tube in a month and one balm that is not nearly effective as the tube. It is clearly
working with no further side effects. Knock on wood

Offline jd1

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Re: Grover's disease
« Reply #1989 on: Friday August 02, 2019, 06:08:57 PM »
Hi everyone,

I believe that I posted a while back that after covering my Chemet for about 10 years, the insurance company decided to not cover it.  First the prescription manager denied coverage based upon off-label use.  I appealed to the insurance company.  The insurance company denied coverage as not medically necessary.  This has been going on for almost 2 years.  We were in District Court yesterday, and I won.  I am posting here in case my experience and this specific information is helpful to any other sufferer who stumbles onto this post.  Here is what I learned:

If your insurance company is subject to ERISA, then part of those rules is that the package that you put together for your appeal is final.  You cannot later add to the package when you realize that people are going to be irrational and you are going to have to sue.  Thankfully, each attorney who later took a look at my package to evaluate whether he/she would take my case said that I had done a really good job.  Here is what I included in my package:

1.  A letter from the medical professional who prescribed the Chemet.  The letter said how long I had been a patient, that I/we had tried many traditional and alternative therapies without success, and that there is no other effective treatment for me.

2.  A letter from me explaining the history of my disease - when it first appeared, the connection to mercury, a different, acute lead reaction that I had that was also successfully treated by Chemet (obviously my body does not detox heavy metals well), the way I feel when on Chemet (so that people will know that this is not a drug that I take for fun), the fact that I have tried many, many therapies.

3.  Dr. Dantzig's research paper where he tied together Grover's disease, macular degeneration, and Hg toxicity.

4.  Pictures of the acute lead reaction, which was welts on my arms and legs.  I did not include pictures of the Grover's disease, which is on my trunk.

5.  Doctor's Data urine test showing very high levels of lead, which was after I had treated the welts with a whole bottle of Chemet, and my skin had returned to normal. 

Our position was that (a) the use of Chemet for Grover's disease is not off-label because Grover's disease is a symptom of high mercury levels and (b) I have 24 years of experience showing that Chemet is medically necessary for the treatment of Grover's disease.

The insurance company was also bound by the rule that you cannot add to your package after a certain point in the procedure.  They had one email parroting some website with the "common" (translate - ineffective) treatments of Grover's disease.  I think that they thought that I did not have the stomach for the fight.

The judge did not address the off-label issue.  I think that that was because the decision by the insurance company was the final decision.  He said that based upon the record, he must rule that this treatment is medically necessary.  The insurance company can appeal to the 9th Circuit.  My impression is that the trustees of the insurance company really do not like me, and if it is personal, maybe that will happen.  My attorney and another who is a friend both said that it would be a mistake.

This ruling does not guarantee me future benefits.  I am going to do two urine tests when I get my next bottle.  The first will undoubtedly show high levels of mercury.  After I treat, I will retest, and that will show much less mercury.  This will help us if we have to go to court again to show that the Chemet is being used for its common purpose - to relieve a mercury toxicity situation - not an off-label use.

Finding an attorney was tough.  The ERISA attorneys seem to want to take the cases where they can bill on a contingent fee - 30% of 20 years of back disability payments that were due and unpaid, for example.  I had to pay an hourly rate of a SF attorney.  He is worth it.  He was recently named in the top 100 attorney in Northern CA.  But it is not fair....what would I have done if I had not been able to make this investment in this lawsuit?

My understanding is that this case does not set precedent.  Nevertheless, perhaps it is helpful in the package created by the next person who is suing his/her insurance company.  The case is Jessica Devers v Carpenters Health and Welfare Trust Fund for California and Carpenters Funds Administrative Office of Northern California, Inc. Case No.: 18-cv-04215-EMC.


« Last Edit: Friday August 02, 2019, 06:32:27 PM by jd1 »

Offline Waybad1

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Re: Grover's disease
« Reply #1990 on: Sunday August 11, 2019, 04:02:15 AM »
So 54 pills in. I do have to say, I had a little bit of itching on Monday night into Tuesday morning. Only on my shoulders, but still there.
I do still itch when I sweat a lot. I wear long sleeve while I'm working in the sun, but it goes away quickly when I dry off. The last 4 days
have been really good though with hardly any itching. In the back of my mind I so feel like it is going to come back when I quit the pills, like
it's just below the surface of my skin. It's hard to feel positive with this horrid disease.

Offline jd1

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Re: Grover's disease
« Reply #1991 on: Sunday August 11, 2019, 09:52:11 PM »
Friends.  Why do you struggle and suffer?  Dr. Dantzig has 13+ years experience treating this disease successfully.  His research is available online.  There are many "treatments" out there, and many are ineffective or dangerous.  Perhaps Grover's disease goes away for some after a period of time because those individuals slowly detox the mercury toxicity that causes the disease.  Perhaps those of us who have chronic cases do not detox well or have a constant source of exposure.  There are many posts on this thread where long-term sufferers found relief using Dr. Dantzig's protocol.  There are so many diseases that do not have a cure or effective treatment.  Grover's disease is no longer in that category. 

BTW, it is no small thing that the District Court ruled that this treatment is "medically necessary."

Offline Waybad1

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Re: Grover's disease
« Reply #1992 on: Monday August 19, 2019, 05:34:35 PM »
I just received my blood test results after 58 days on the Accutane.  ALT 21 AST 58. Cholesterol 208. All within range. I am pretty sure at this point
I am only going to give the Accutane one more month and if the itch does not go completely away, I will stop taking it. Don't get me wrong, it has helped
tremendously. I sleep through the night and the insane itch is no longer there. It has, however itched me consistently for a week now, just enough to make
me feel very uncomfortable. I haven't left my house for 7 days because when I go into the direct sun (it is 91 today) it immediately makes me uncomfortable.
I am looking into the Chemet process, although I do not have the means to fly to NY to see Dr Dantzig. In the meantime I am making a cilantro shake every
morning which I did about 6 months ago with some success. I am also going to get a Kenalog 40 injection this week to at least have 10 days of zero itch
just to put into perspective what I am aiming for which is no itch at all.

Offline Greg M

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Re: Grover's disease
« Reply #1993 on: Monday August 19, 2019, 07:30:46 PM »
Trying to find a way to post a link to a medical study done on a 56yo F with persistent GD.  Pictures of her were terrible!  My cousin a Dr and asked him to keep looking for more clinical studies/research done on GD.  This woman was treated with almost everything people have listed on this thread since its inception back in 2003!  Here is a quote from their clinical study...

"We report a 56-year-old woman with recalcitrant,  persistent,  and  generalized  GD  who showed  complete  remission  after  6  weeks  of treatment  with  oral  acitretin  (0.8mg/kg/day).  The treatment   was   well-tolerated   and   laboratory parameters   remained   unchanged.   The   patient remains free of any recurrence at 26 months. To the best  of  our  knowledge,  this  is  the  first  report  of  a complete remission of the persistent form of GD as a result of oral acitretin monotherapy." 

After reading the rest of the article, Acitretin is a representative of the second retinoid  generation.  The parent compound is called etretinate(0.25-0.50mg/kg/day) and given orally. 

The study was done at UC Urvine and was posted on Dermatology Online Journal.  I could provide the link to the article, but once you open it an read the first paragraph, you have to download the PDF which opens the article in another language (I think due to the dermatologists being foreign).  I am trying to figure out how my Mac opened it in English and will post the link as soon as I figure it out! 

IS THERE HOPE?!  Btw, I have had Grover's for 5-6 years with flare ups usually lasting 6-8 months and then i get a transient time of 1-2 months.  This current flare up is bad and just ordered DMSA to see if I have mercury issues.  If this article is accurate, then this drug is a synthetic second generation retinoid.  Others on here have tried isotretinoin, which is a first Gen Vit A retinoid.  Maybe they have bridged the gap with the Vit A and synthesized a better form of it to cure our GD!
« Last Edit: Monday August 19, 2019, 07:57:18 PM by Greg M »

Offline Greg M

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Re: Grover's disease
« Reply #1994 on: Monday August 19, 2019, 08:06:23 PM »
JD1,

I have read your posts since the beginning.  I hope the best for your case and continuing coverage of Chemet.  If that fails, I'm sure you know this already, but couldn't you just purchase DMSA and take that instead?  This is the same drug and you can purchase it in many different doses that suit your needs.  After reading all the posts here through the years, and doing a ton of research on Andy Cutler Chelation, DMSA would be no different than taking Chemet.   

Again, I hope you are awarded coverage so this isn't an issue, but there is hope if your legal argument fails.  As you just stated a few days ago, GD doesn't fall under not curable anymore.  If only people and many of the Derms out there would just look at the medical facts that some of us have found through years of research!

Take care!

Offline Waybad1

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Re: Grover's disease
« Reply #1995 on: Tuesday August 20, 2019, 06:02:23 AM »
It's called Soraitane and some members here have tried it. You can search it here in the Grover's thread.
I am definitely going to try something else if the Accutane does not work for me. My liver and cholesterol
have changed very little after 2 months with Accutane. No side effects except very dry lips. This maybe what I
try next. We will see in a month. I have zero issues trying anything since I am of excellent health
 

Offline Waybad1

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Re: Grover's disease
« Reply #1996 on: Sunday August 25, 2019, 08:59:25 PM »
So things are back in the upswing again as the itching has seemed to level off to a minimum.
It is more of an annoyance now as opposed to an actual itch and is solely confined to the center
portion of my back only. This is where in my case the itch originated. My chest rarely itches anymore
and is almost completely clear. My back and shoulder blades are also much smoother now.
My shoulders which were a major concern for the first year and a half burn at times, but do not itch.
I also have to update my latest blood test. My AST was reported at 58 by my derms office, but really
was 19. 58 was for my triglycerides. It was nice to know that my liver enzymes have actually gone down during
this whole Accutane process. My cholesterol has gone up, but not all that much.

  Out of Range CHOLESTEROL, TOTAL   
CURRENT RANGEOVER TIME
CHOLESTEROL, TOTAL 
208 H
<200 mg/dL

 
 TRIGLYCERIDES   
CURRENT RANGEOVER TIME
TRIGLYCERIDES 
58
<150 mg/dL
 
 AST     
CURRENT RANGEOVER TIME
AST 
19
10-35 U/L
 
 ALT     
CURRENT RANGEOVER TIME
ALT 
21
9-46 U/L
 
 CBC (H/H, RBC, INDICES, WBC, PLT)   
CURRENT RANGEOVER TIME
WHITE BLOOD CELL COUNT 
5.5
3.8-10.8 Thousand/uL
RED BLOOD CELL COUNT 
4.92
4.20-5.80 Million/uL
HEMOGLOBIN 
15.2
13.2-17.1 g/dL
HEMATOCRIT 
44.8
38.5-50.0 %
MCV 
91.1
80.0-100.0 fL
MCH 
30.9
27.0-33.0 pg
MCHC 
33.9
32.0-36.0 g/dL
RDW 
12.8
11.0-15.0 %
PLATELET COUNT 
242
140-400 Thousand/uL
MPV 
11.4
7.5-12.5 fL
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CHOLESTEROL, TOTAL
Total Cholesterol > 200 mg/dL
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Offline Waybad1

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Re: Grover's disease
« Reply #1997 on: Wednesday August 28, 2019, 05:49:18 PM »
 
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« Last Edit: Wednesday August 28, 2019, 05:51:03 PM by Waybad1 »