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Palmoplantar Pustulosis (PPP) Board / Re: PPP (Palmoplantar Pustulosis)
« Last post by sumitchhabra on Thursday September 05, 2019, 04:32:04 PM »
Caresse - I'm so glad you finally got your MRI's sorted out!  Hopefully they will have some answers for you!  And Yay that your hands are better too... too bad on the foot, but hopefully it will go the same way too! ;)

I'm feeling much better now... I think it must have just been a virus that has been going around because everyone I know seems to have had it in the last couple of weeks - LOL - so I'm glad it's not the Doxy!  I have to say I am sooo impressed with the results I've had on it so far!  I only have TWO (!!!!!!!!!!!!!!!!!) pustules on my foot, when a week and a half ago there were at least 40 painful inflamed things.  And they seem to go as quickly as they show up - yeehaw!!  So, I'm keeping my fingers crossed that I at least get a bit of remission out of it, and I'm glad I've finally found something that works so if I get a really bad break out I can try that again!  I have had a couple of pustules show up on my hands though, but they are tiny and they seem to come and go fairly quickly too - yay! :D I will post photos of my foot when the experiment is over - LOL!

Also, I just wanted to mention a couple of other things that I've been doing in conjunction with the Doxy that may have been of help too...

Firstly, I gave up drinking Diet Coke (I was drinking at least 2 Litres a day). 

Secondly, I started using a soap called "Pinetarsol" which is used for Chicken Pox, Dermatitis and the like.  I don't know if you can get it over there in the states (that's it's Australian name anyway), but it is Pine Tar as opposed to the Coal Tar (which I have found does absolutely nothing for me).  Anyways, I started using this soap on my foot when it was really infected last week at the same time I started the Doxy, and I can say that the itchiness/burning was relieved pretty much instantly.  It stinks like Pine-O-Cleen - LOL - but I'm happy with it.

I stopped using the coal tar lotion that my doctor had prescribed because it seemed to just make it worse.  Instead I'm just using a small amount of a steroid called "Diprosone", and Vaseline over the top of that.  I've found even in the last couple of days that I've cut the coal tar out and started using the Vaseline, it has improved heaps!

I also started taking a Zinc supplement as I remember when I had acne in my early twenties, that seemed to help and I figured it couldn't do any harm!

So, all in all I'm doing well.  I just can't thank you all enough for sharing your stories so that I could find out about this treatment.  Otherwise I would still be hobbling around this week I'm sure.  I'm also going to send photos and a letter to my Dermo so that he can see the results as well and maybe keep it in mind as a possible treatment for other sufferers.  I know all the Dr's will say that it was just a coincidence, but I think it's a mighty huge coincidence if that's the case - LOL!  My foot hasn't looked this good in at least 6 months. Online dietician India
Skin Complaints and Skin Disorders / Re: Grover's research?
« Last post by M@t on Saturday August 31, 2019, 10:57:01 AM »
Hey Greg,

Looks like you are trying to upload / display a picture.

If it's hosted on the internet already, you can use the img tags:
Code: [Select]
If not, we have a gallery facility (click on the gallery button on the top toolbar) and you should be able to upload some images into your personal gallery, and then link to them using the img tags described above.

Skin Complaints and Skin Disorders / Re: Grover's research?
« Last post by Waybad1 on Friday August 30, 2019, 09:56:37 PM »
What is this? New research?
Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by Waybad1 on Wednesday August 28, 2019, 05:49:18 PM »
Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by Waybad1 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   
208 H
<200 mg/dL

<150 mg/dL
10-35 U/L
9-46 U/L
3.8-10.8 Thousand/uL
4.20-5.80 Million/uL
13.2-17.1 g/dL
38.5-50.0 %
80.0-100.0 fL
27.0-33.0 pg
32.0-36.0 g/dL
11.0-15.0 %
140-400 Thousand/uL
7.5-12.5 fL
Performing Sites
EN Quest Diagnostics-West Hills, 8401 Fallbrook Ave, West Hills, CA 91304-3226 Laboratory Director: Tab Toochinda MD
Total Cholesterol > 200 mg/dL
The level of total cholesterol circulating in the blood can help determine your risk for heart disease. The National Heart, Lung, and Blood Institute (NHLBI) considers a total cholesterol level of less than 200 mg/dL to be in the desirable range. A total cholesterol level above 200 mg/dL may suggest you have a greater risk for heart disease. Total cholesterol levels vary by age, gender, and heredity. Other cholesterol measurements, alongside patient characteristics, should be taken into consideration when determining a personís risk level for heart disease. Click here to learn more from this guide about cholesterol levels and how they matter to a person's health from the NHLBI.
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These results have been sent to the person who ordered the tests. Your receipt of these results should not be viewed as medical advice and is not meant to replace discussion with your doctor or other healthcare professional.
Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by Waybad1 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
Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by Greg M on Monday August 19, 2019, 08:06:23 PM »

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!
Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by Greg M 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!
Skin Complaints and Skin Disorders / Grover's research?
« Last post by Greg M on Monday August 19, 2019, 07:29:03 PM »
/Users/gkmcclung/Desktop/Screen Shot 2019-08-19 at 2.23.43 PM.png
Skin Complaints and Skin Disorders / Re: Grover's disease
« Last post by Waybad1 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.
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