Danazol
 

What is danazol used for? Quite a few people seem to take it.

I take it because it has the side effect of making red blood cells. I think others with different illnesses take it for other purposes.

Hey Lotusbud!

Danazol is an androgen -- synthetic testosterone. A few decades ago, it was often used for folks with Aplastic Anemia, and it seemed to help a small percentage of them.

Several folks on marrowforums (including yours truly) are enrolled in a clinical trial at the National Institutes of Health that is using Danazol to treat patients who have abnormally short telomeres on the ends of their chromosomes caused by a genetic mutation affecting the genes associated with telomerase (TERC and TERT). Some folks with this mutation wind up with AA, some with pulmonary fibrosis, some with cirrhosis of the liver, and some (me, at least) with MDS. And some don't have any apparent health effects.

The idea with this trial is that the androgen will stimulate the telomerase cycle and lengthen the stem cell telomeres, so they quit making lousy blood cells. Some test-tube studies at NIH have suggested this is possible.

You can read more about all this in this thread, and this thread.

The NIH trial is here.

Aside from this whole genetic mutation-telomere angle, there's some evidence that androgens, including Danazol, can stimulate red blood cell production in much the same way as Aranesp and Procrit.

Take care!

Greg

Hi Greg, I'm really jealous of your ability to communicate.

It astounds me how you can take something complex, absorb it, understand it and then recommunicate it in a way that every one can understand.

Thank you for being on this forum and simplifying difficult to understand concepts.

Regards

Chirley

Aw shucks, Chirley, you're making me blush -- and that looks doubly funny when you have a forehead so high it stretches all the way over the top and onto the back of your head.

Funny thing: I've been bald on top (but not the sides) since my early-30s. Classic male-pattern baldness, I suppose, since my maternal grandfather and one of his sons had pretty much the same bald spot.

I've been lucky with the Danazol (knock on wood) and have had no side effects -- with one exception. After 20 years of being bald as the proverbial cue ball on top, I have begun to sprout peach fuzz up there. My wife thinks it's hilarious.

Take care!

Greg

Wow Greg. So Danazol really has some quite awsome effects! So you are getting a new hair!
And thanks bundles you can explain things so well.
I find curious the link between androgens and red cell production --
for entirely different reason, I was given Danazol a long time ago. However, my skin exploded red all over within overnigth. Now with this suspicion of MDS (atypical) hanging over my head, perhaps the reaction was something else... However that kind of reaction can be serious enough that there will not be worries ever again. At the same time, my recovery was very slow and the doctors were thinking I have some underlying problem.
But Greg good luck for your newly sprouting hair!

Michal

Hi Michal!

Danazol does have some potentially nasty side effects, including both acne and seborrhea -- though what happened to you sounds more like an allergic reaction.

Even scarier are the very rare Peliosis hepatis (blood bubbles in the liver) and benign hepatic adenoma (tumors in the liver), either of which can suddenly cause internal bleeding, as well as pseudotumor cerebri, where you get pressure on the brain that acts like a tumor, but isn't. These are both pretty rare, but are associated with long-term, high-dose use, which is a reasonable description of the two-year, 800mg per day trial I am on. I'm keeping my fingers crossed.

Like everything else with MDS, you get a disease that's trying to kill you, and then you take drugs for it, and the drugs try to kill you.

Take care!

Greg

Greg,

I second Chirley's praise of your ability to communicate in a way that us nonmedical and nontechnical people can understand. Your posts have proved to be invaluable, especially to us caregivers who are searching so hard to find the right combination for our loved ones.
Your positive attitude and input as an MDS patient yourself inspire me and I'm always passing along your posts to my husband (who is the ostrich and buries he's head, which is all right with me if that's what he has to do to deal with this terrible disease). We both got a good laugh out of your peach fuzz!
Take care and we both hope things keep looking up for you.

Hey Linda!

You and Chirley are killing me; I already have a red nose and now my whole head is red.

The peach fuzz is starting to morph into whisps, and I'm thinking it won't be long before I can pull off a kind of Kewpie doll look -- you know, with the one thin curl on top?

Take care!

Greg