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Mr. GIANNI’s Story

 

My name is Gianni, I live in the Province of Ancona - Italy, I am 47 years old.

I am not asking for information I just want to contribute as protagonist of the disease treated in this website.

 

June 1995

My story begun on June 1995 – I was 36, when I noticed bruises on my legs that never disappeared. And I noticed tiny red dots around my ankles and my low limb (petechiae).

 

I did blood test, and the results of hemochrome highlighted the platelets count (about 60,000) and here begun my ordeal.

I started a cortisone-based treatment (deltacortene) 50mg per day, the result was immediate, platelet count rose till 200,000 but when I decreased the dose the count decreased worrying.

So I was advised to visit a specialist for blood’s disease.

 

 

November 1995

Since the visit and the following blood tests – in November 1995 – I was diagnosed with Werlhof’s disease, an illness I do not know about cause and about treatments.

I was proposed a cortisone-based cure, deltacortene 50 mg per day to take for 3 – 4 weeks and then change over a slowly decreasing of the dose.

 

 

June 1996

The treatment had been lasting for 6 months and the platelets count do not raise over 60,000, but, end of July, even if the 50 mg cortisone dose the platelets count went irreversible down to 4,000 on 1st July.

 

July 1996

I was advised about splenectomy and I had surgery - after an immunoglobulin treatment to go up the platelets count (15th July, 1996).

 

 

August 1996

Suddenly after the surgery the platelets count jumped over 400,000, but since the half of August

it decreased, and at the end of the month I start again with cortisone :

-          Deltacortene 25mg

-          Azathioprine 100mg

I have been taking deltacortene and azathioprine for 3 years, the dose varying from 50 mg to 5 mg depending on platelets situation, and in July 1999 I had a strong relapse (31,000).

 

July 1999

My doctor suggested me Vincristine (a chemotherapy drug) 2mg I.V.

In the meanwhile another doctor, followed the previous, suggested me before taking Vincristine, to contact Dr. Todisco in Grottammare.

Dr. Todisco explained me about the treatment to do and the positive results with other patients with the same disease.

On July 1999 I have begun the treatment :

-          melatonin 13 pills (2mg) per day

-          vitamin E (tocopheryl acetate), a spoon in the morning together with a spoon of Shoum solution

-          in the same time deltacortene (25mg per day) gradually reducing the dose

 

 

November 2002

Since November 2002 I have definitely given up with cortisone.

From November 1999 to July 2002 the platelets count have been weaving between 30,000 and 70,000, at alternative period (and considering the low count petechiae vanished).

 

Year 2004

In 2004, in order to increase the platelets count I had to improve the dose of melatonin from 13 to 15 pills, successfully.

 

 

January 2005

Since 2005 I have decreased the pills to 12. Platelets have been increasing - more or less gradually - settling on more than 80,000 and in 2006 the count exceeded100,000.

I can state that the treatment with melatonin allowed me :

- stopping the cortisone, in long run it causes relevant side effects

- living quietly also when the platelets count wasn’t high enough

-  increasing the platelets count, in the course of time and steadily taking melatonin

I hope I make a profitable and positive contribution for all are about to visit this website to search for information about Werlhof’s disease, best regards.

 

GIANNI

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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