Possibly weening off Promacta!

Hi All,

I wanted to share some good news! I 've been on a solid 50 mg dose for more than 2 years and have always had counts in the 100's+. I read on this form about maybe tapering back the dosage to 25 mg recently and my doctor was for seeing what would happen. So far its been going well!! My counts are in the 60's range and my doctor wants me to try taking 25 mg every other week.

Last week we tried every 3 days at 25 mg and the counts were in the 80's range!

This past week I went from Monday -Thursday with no meds and the counts were in the 60s. I spoke with a different doc then my own today regarding the results and she suggested staying off one more day and then seeing what my primary doctor wanted to do.

I don't want to get overly excited because this whole ITP thing has been a roller-coaster, but man would that be something if I could be off this stuff!

Thanks,
Dan

It would be great, Dan, but I wouldn't go too fast. You don't want to end up back at square one!

Hey Dan. The statistics say its going to happen to some. IT MIGHT AS WELL BE YOU !

Just off hand, having a solid non varying response for such a long time kinda suggests a good outcome. What worries me is a 60 count also sounds like a partial remission/response.

LOL, you can tell your doctor that you also heard about treating with low dose Danazol as maintenance to remission.
annals.org/aim/article/702046/low-dose-danazol-therapy-idiopathic-thrombocytopenic-purpura

That is some really great news Dan! Definitely take it slow on tapering off, but it sounds like you've been managing some relatively stable counts on the drug, which is fabulous. Stability is good I would love some stability with mine, lol! Even if you end up staying on 25mg for a long period, that's half of the dosage you have been on for years. Not a bad thing at all!

And Hal, I'd be taking any kind of remission offered to me :lol:. Counts in the 50s-60s with no treatment sounds preferable to treating with anything.

Mom, at one time I would agree totally with you. But I think there are some situations that call for an exception to that rule. As far as I know, it is only low dose Danazol that would qualify as a good drug for prolonged maintenance. Since I've not taken the drug yet, have only read about it, that notion may change though...

Hal9000 wrote: Mom, at one time I would agree totally with you. But I think there are some situations that call for an exception to that rule. As far as I know, it is only low dose Danazol that would qualify as a good drug for prolonged maintenance. Since I've not taken the drug yet, have only read about it, that notion may change though...

Yowza, we definitely have a different perspective. I would much rather have no drugs and safe counts than Danazol for an extended period. Messing around with hormones if it isn't needed doesn't seem like a good plan for "prolonged maintenance." If counts are safe 50-60 with no treatment, why would you want to do prolonged treatment?

And out of curiousity, why do you feel that a patient who has been so stable on promacta like Dan is a situation that calls for an exception to the rule? I'd say he's a poster child for being able to potentially achieve remission and taper off of promacta like Emily has done for the most part. These are the cases that give me such hope

My doctor had vaguely mentioned Danazol when discussing treatment options, and reading about all of the masculinizing effects and potentially permanent lowering of the voice was enough to scare me away for now. If I get desperate, then we'll talk, but in general I'm scared to mess with hormones!

My thoughts exactly Mom, I'm hoping I'll follow Dan & Emily's path but it's early days for me . After looking into Danazol I decided it definitely isn't for me.

Two things I have to say about this thread.
1. I agree with not messing with hormones. It can set you up for a whole host of problems.
2. Dan, I'd be a bit concerned about having your primary manage Promacta doses. Many Hemo's don't even know how to do it right. I hope that wasn't what your Hemo is suggesting.

Yea, if I were a woman I'd be pretty squeamish about Danazol too.
I get the impression though that low dose levels of 50mg is far better tolerated than the standard dose level - which for me is 600mg. I admit I don't have any links which fully describe low dose side effects.

From the statistics I'm reading Danazol (65%) is second only to IVIG (80%) and TPO agonist (80%) in population response rate. That's better than steroids, Rituxan, MMF, Cyclophosphamide, Azathioprine, Dapsone, and Vinca alkaloids. Danazol is like a 'combination' treatment in terms of drug scope - and thus ITP type specificity. In comparison, that should make low dose Danazol like Prednisone but 1) without any side effects, 2) benefiting a greater share of the ITP population, 3) doesn't raise counts (for most), 4) does keep counts from falling.

If one is an adult male then Danazol should be given appropriate drug preference hierarchy re-ranking. If one does not respond to steroids too, like myself, Danazol is even more compelling. Many folks that don't respond to steroids do respond to Danazol.

Mom. IMHO a partial response (less than 100) is indicative of someone that has two types of ITP antibodies. With a partial response, one type has been corrected and the other hasn't. Many studies I've read suggest partial responses are short lived, eg Rituxan. I do admit the TPO agonist study that Jay posted did suggest partial remissions are *not* short lived - they are long lived. This is an interesting difference. Just off hand, makes me wonder if you were to get a partial remission through Promacta, would your counts stop wandering all over the place as a result? Ack, if we could just get tested for which type of ITP flavor we had, the puzzle should start falling into place much faster.

As we all know, the proof of the pudding is in the eating. LOL, and I've already volunteered to try the pudding.

With all of those glowing reports on Danazol, you'd think it would be used more. Seriously, in all of my years here, I can only remember two or three people that had success with it. One woman was on it for quite a while and she did have steroid-like side effects, mainly bad mood swings and anger. I used it for a short while and all it gave me was a boil on my chin.

Hal,
2 points here
1) Please cite where you get your statistics from. When I started my degree the first thing I was taught is that without supporting evidence statistics are meaningless.
2) Are you talking about immediate or sustained responses.?

When I was diagnosed back in 2004, Danazol was one of the treatments on a list. When I saw my hema, I had said list in hand and we went over each of them. He also said no to all of them, including that one! I did Pred, IVIG, splenectomy and finally Rituxan, which put me into remission.

Sandi, there certainly are negative aspects of standard dose Danazol. As you know, more than half of all suffering of ITP are women - who for the most part don't want anything to do with it. If that isn't enough there are more things that I know of. Some 15 to 20% have an adverse reaction - just as you did. That is a really nasty statistic. Further, some argue ( page 1669 ) that Danazol doesn't provide sustained response after discontinuation. In that context, Danazol is like steroids, once again. But don't forget about ' zomzombie ' who had a fantastic and instant response once it was combined with Promacta. We all have a tendency to remember the bad things, and the good things - not so much. Humans survive better with this trait. It used to be a matter of life and death whether one could remember bad things that happened to us.

MrsB, upon further review, LOL, I may have overstated standard dose benefits. My contribution to this thread was really intended to be about 'low' dose Danazol though. Still, let me give you what I have and then you can critique as needed.
This study talks about how 67% of folks have either a partial or complete response.
This study says the response rate is between 60% and 67%. See the section on Danazol.
This study talks about the response rates of other ITP treatments. See table 4. I admit I misunderstood the 'Complete response' column. Overlooked the 'on no treatment' part of the definition.

Please give me a passing grade professor Anne. Pretty please? Please, with lots of platelets on top?

CindyL. As I was mentioning to Sandi, 15 to 20% of folks have an adverse reaction to Danazol is a really nasty number. One's chances of adverse reactions with Rituxan are much better - though potentially more severe. As I see it, for a woman, Rituxan makes a lot of sense to do before Danazol. For men, it seems like a harder decision between Rituxan and Danazol to try first. Danazol may have the edge.

Hal
Haha... Professor is a bit strong. BSc (Hons) is a s far as it gets. One of my ex colleagues keeps banging on at me to do my masters but at 60, still working and granny duties I think I'll stick where I am for the time being. Aforementioned colleague retired 2 years ago and has just completed her PhD.
Have been trying to find articles less than 10 years old regarding Danazol but it's a difficult challenge.

I'm going to the UK ITP conference in May. It'll be interesting to see if Danazol is mentioned, this is the list of speakers
Prof. Adrian Newline
Prof. James George
Prof. Victor Blanchette
Prof. John Hunter
Dr Drew Provan
Dr Jecko Thachil
Dr Marie Scully

Cheers Anne

Hal:
All I'm saying is that Danazol isn't used much. There has to be a reason for that. If it were so successful, it would be a first line treatment.

Here is a joke for you Sandi.

Question: What is worse than a splenectomy?

Answer: To have your woman-hood robbed from you with Danazol treatments.

You could get lynched for that.

Yea, am hoping when I start taking Danazol it will help with self control.