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Danazol/Dancristine - any experiences?

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11 years 10 months ago - 11 years 10 months ago #40342 by Zomzombie
Danazol/Dancristine - any experiences? was created by Zomzombie
Hi there!


I would like to try combo Promacta + Danazol. Promacta 25 mg works for me fine, but costs about 60 EUR per day. Danazol is a modified testosterone, an old, cheap drug. In addition to this Promacta is a maitenance drug and Danazol can lead to durable remission after ceasing of treatment. The plan is to stay on Promacta till Danazol will start work. Do you have any experince with Danazol?


Many thanks.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 10 months ago #40343 by Sandi
Replied by Sandi on topic Danazol/Dancristine - any experiences?
I tried it for a short while. I had to stop because I was allergic to it.

Danazol can take a long time to work (months). Over the years, I've seen very few people respond to it and maintain decent counts. The worst side effect I've heard complaints about is boil-like acne.

It doesn't hurt to give it a shot though.
The following user(s) said Thank You: Zomzombie

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11 years 10 months ago - 11 years 10 months ago #40347 by Zomzombie
Replied by Zomzombie on topic Danazol/Dancristine - any experiences?
Maybe it is less popular among women due to side effects (male hormone)?
I saw some promising reports, but sources are not always trust worth.

I decided to try Danazol with Promacta for one month and see if my platelets will be higher than 10 after tapering Promacta. Any figure over 10 k makes me living normal life.

I also started a diet without sugar, processed food, dairy, wheat and reducing meat.
I take some probiotics as well.

There must be a solution somewhere...

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 10 months ago #40354 by Sandi
Replied by Sandi on topic Danazol/Dancristine - any experiences?
Oh, plenty of women have taken Danazol....I've seen more women than men, but of course that's because there are more women ITP patients. Danazol just isn't known to give a fast or high rate response so it's one of the third line treatments that gets a blurb.

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11 years 10 months ago #40447 by Zomzombie
Replied by Zomzombie on topic Danazol/Dancristine - any experiences?
Just quick update:

Last week plt : 6 k.

This week plt 576 k!!! - Promacta 25 mg + Danazol 2 x 200mg + probotics + diet: no sugar, no dairy, very limited wheat (trying to elimanate at all).

Promacta has been stopped - I hope to have at least 30 k on next week check.
I am coming back to live after 9 months of a nightmare..

Cheers

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 10 months ago #40451 by Sandi
Replied by Sandi on topic Danazol/Dancristine - any experiences?
I'm glad your counts are up - that is a high count!

I don't know why I didn't think to tell you this before, not that it matters if you're stopping Promacta anyway, but people have gone into remission after Promacta use.

www.healio.com/hematology-oncology/hematology/news/print/hematology-oncology/%7Bb11cec31-e0a4-4c96-89e0-d441862c9e10%7D/eltrombopag-maintained-efficacy-after-cessation-in-immune-thrombocytopenia
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11 years 10 months ago #40461 by Zomzombie
Replied by Zomzombie on topic Danazol/Dancristine - any experiences?
That`s sounds great! My hema told me about a guy who took just couple of pills and went info remission.

I am cautiously opimistic to not hit zero again. I am totally syndromeless above 10 and anything above sigle digits makes me happy.

In addition to this I can see clearly the link between the diet changes and the improvement.
Anyone having autoimmune problems should consider lifestyle changes... it works!

Cheers.

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11 years 10 months ago #40558 by onlyhair
Replied by onlyhair on topic Danazol/Dancristine - any experiences?
I have had ITP since 1979. Been on Prednizone since then. Tried Danazol but it didn't work for me. Doesn't mean it won't for others.
I have had the Chemo from 3 difference Hospitial Groups also. Of which they didn't work either.

Don

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