Danazol for ITP

Has anyone heard of Danazol for ITP treatment? I finished Rituxan in December and am still in the teens count wise.
Dec29 - 12
Jan 6 - 15
Jan 12 - 17

My doc wants to try something else without waiting around due to >20 counts. He said he doesn't like Promacta and has several on Danazol with good results. He says side effects are much less than other options.

D Mann, 'rjsmyth' has mentioned Danazol to me before as something he was going to investigate.

pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/29292-a-type-of-itp-which-induces-skin-dermatitis.html#57250

If he doesn't respond here, may want to shoot him an email and see what he has learned.

I need to firm up a backup plan myself. So don't be shy...

What did your doc say about NPlate? There are several good stories on here with it.

Doc said he prefers Danazol over Nplate or Promacta. He said they are the same drug, 1 is injection the other is a pill. He doesn't like the fact that both increase production not suppress the fact we are killing our platelets. The Danazol suppresses the immune system instead. He doesn't like kicking up production due to side effects.
If my count stays about the same I think I will give it a try.

Hal9000 wrote: D Mann, 'rjsmyth' has mentioned Danazol to me before as something he was going to investigate.

pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/29292-a-type-of-itp-which-induces-skin-dermatitis.html#57250

If he doesn't respond here, may want to shoot him an email and see what he has learned.

I need to firm up a backup plan myself. So don't be shy...

What did your doc say about NPlate? There are several good stories on here with it.

See thread "Highly Refractory ITP" - just started taking Danazol

I tried Danazol a long time ago. After taking it for a few days, I broke out in hives and had to stop. I wasn't on it long enough to see any response. Good luck. It can take a while to see a response.

Ok, thanks, will follow rjsmyth.

I guess at 200mg X 3 times a day looks like a mid range dose from what I've read so far. Guess the doc needs to figure out how the liver is going to react at that level.

Question for you. I assume you've been treated with steroids long ago / initially. How well did you do on them? That is, can they bring your counts up to 150 or so?

I am still taking Prednisone at 10mg daily. When I got out of the hospital in October I was on 60mg and my count peaked at 119 then started dropping. My doc started lowering the prednisone saying if it isn't working let's get off of it. At 60 I couldn't sleep and was a crab all the time. I think the 119 peak was due to transfusion and IVIG in the hospital. I have been in the teens since late December when I did the 4 week Rituxan. Last 4 counts were 11, 14, 15, 17 give or take 1. Although they are low I am hopeful that the Rituxan is working since the count is trending up and not down. If I get into the high 20 or low 30 in 3 weeks when I see my doc I think I will hold off on the Danazol and just wait and see. February 1 is my appointment and that is only 4 weeks from my last Rituxan dose. My symptoms are minor and I am willing to wait.

Today's count (prior to 50gm IVIG) and after one week on Danazol was 23 (15 last week without). That is my highest count in nine months - interesting but maybe not that significant yet. No nasty side effects so far.

You have to be patient with danazol:

www.ncbi.nlm.nih.gov/pubmed/7482120
The time to response was 35.6 +/- 48.5 days (range 14-180 days).

www.bloodjournal.org/content/106/7/2244
Treatment must be continued for 4 to 6 months to see its full effect.

rjsmyth wrote: Today's count (prior to 50gm IVIG) and after one week on Danazol was 23 (15 last week without). That is my highest count in nine months - interesting but maybe not that significant yet. No nasty side effects so far.

Ooh, that is some potentially exciting news. My doctor had tossed out the idea of Danazol for me when we discussed treatment options previously. As a female, I was not excited about the potential side effects of hirsutism and permanent voice deepening, so I picked another option.

I'm going to be following your experiences with the treatment with interest to see how it goes for you.

Hopefully your future counts will continue that upward trend.

Impressive rjsmyth. Very nice. Blaze that trail, LOL

I was reading that low dose Danazol can be used keep one in remission too. As a maintenance treatment.

Tell me. Is there a maximum time the doc will give you the full dose of 200mg x 3 per day? Will he be forced to reduce it to a lower dose after a few months? Or, is it ok as long as the liver is good with the dose level?

Hal9000 wrote:
Tell me. Is there a maximum time the doc will give you the full dose of 200mg x 3 per day? Will he be forced to reduce it to a lower dose after a few months? Or, is it ok as long as the liver is good with the dose level?

We have agreed I will take it for eight weeks to guage if it is working.I am booked in for an appointment in four weeks.

I believe six months is the usual duration as this drug can put people into remission.

Very early days - disappointment is a common theme for us with ITP!

No update this week as they managed to muck up my FBC. Usual IVIG. Got a rotten cold that won't go away so hope that is the reason for feeling lousy and not the Danazol. Amazing isn't it, the one week I would have liked to have known my count!

I had a really bad cold about 3 weeks ago. Right in the middle of Rituxan treatment. I dunno, for me, getting some outdoor air somehow seems to clear up the congestion. I took 30 minute walks. Also, started taking 3 capsules of Vit D everyday.

Blah, we wanted to know your progress too...

No muckup with FBC this week.

48 - now this is getting interesting.

Hot dog rjsmyth, 48. Blaze that path. That 23 count from two weeks ago was no accident.
Any untoward symptoms?

Hal9000 wrote: Hot dog rjsmyth, 48. Blaze that path. That 23 count from two weeks ago was no accident.
Any untoward symptoms?

Not so far thanks Hal. IVIG always make me feel a bit ropey for the first 48hrs anyway.

8th February and 48 again so neither up nor down.

We carry on with Danazol.

Ack, stalled at 48? Any extenuating circumstances? Lack of sleep, a cold, scratchy throat, physical or mental stress?

In a unsolicited but related note, have you ever tried 'Kefir' ? Next best thing to a vegetarian diet, I think.

Hal9000 wrote: Ack, stalled at 48? Any extenuating circumstances? Lack of sleep, a cold, scratchy throat, physical or mental stress?

In a unsolicited but related note, have you ever tried 'Kefir' ? Next best thing to a vegetarian diet, I think.

No extenuating circumstances. Not into alternatives but that is not to say that I believe they don't work.

Always had mild prostatitis which I perceive as having got worse since starting the Danazol - may be a coincidence - will discuss with Haemo next week.

34 today - spoke with Haematologist and we are stopping IVIG and continuing with the same dose of Danazol as although my count is fluctuating it is still a good response.

Theory is that IVIG was not doing much for my count and the Danazol is doing the work.

Spoke at length about side effects - apparently for my weight the dose is considered low - PSA test to be done as Danazol can make Prostate cancer worse (I have no reason to believe I have PC) - liver function normal but regular testing is mandatory as Danazol can cause liver damage although this is reversable when Danazol is discontinued - yearly liver ultrasound is required.

I am hopeful but not convinced - ITP has a nasty habit of being very unpredictable.

Gosh I hope he is right about Danazol doing the work now. Trying to understand it. If the IVIG contributes 10 then the Danazol could be contributing 14 to 38. By the way your talking it sounds like he wants to up the dose a bit after doing the tests you mention.

I know your practicing restraint, but I'd be pumped - Hanz and Franz style
www.youtube.com/watch?v=S-GLO_PydqU

Three weeks on and four weeks since last IVIG and I have some symptoms returning (bruising and mouth blood blisters) although nothing terrible.
Count today 14 - not bad for me!
We agreed that the Danazol so far is only a compliment to IVIG, but a good option.
IVIG today and continue with Danazol FBC and IVIG in three weeks then review after FBC three weeks after that.
Sounds like a plan.

Four weeks with only Danazol sounds pretty darn good, to me. I like the word 'alternative'. What would be really nice, and possible, would be to regain some/most of your diminishing IVIG response. Or, a synergistic response between IVIG and Danazol, over time, would be great too.

So is Doc thinking (mentioned) Danazol benefit may climb a bit over time?

When I had IVIG they gave me 50 grams for five days. When you go in for a single day, do they give you a lot more? 100?

Hal9000 wrote: Four weeks with only Danazol sounds pretty darn good, to me. I like the word 'alternative'. What would be really nice, and possible, would be to regain some/most of your diminishing IVIG response. Or, a synergistic response between IVIG and Danazol, over time, would be great too.
When I had IVIG they gave me 50 grams for five days. When you go in for a single day, do they give you a lot more? 100?

I think that is what he is thinking.

50 grams daily over five days is one hell of a dose Hal. I believe current thinking is that large (huge) doses of IVIG have little or no benefit over smaller doses given by weight. Doubling my dose had zero effect on my count or duration of reaction other than I spent most of the day urinating it out into the toilet!

This regime is still very successful for me so far as it is giving me much more freedom to plan holidays without the restriction of the weekly IVIG hospital visits. I'll take three weekly (50gram) IVIG anyday. No noticeable side effects so far.

Just goes to show how disperate each individuals ITP problems can be!

Oops. My dose was the standard 1g/kg for 2 days, but spread out over 5 days instead of 2. That means I got 30g per day and not 50.

I've been thinking about asking my hema about taking low dose Danazol. I guess low dose is defined as 50mg per day. Either Rituxan, or IVIG, or elimination of gluten has pushed counts from low teens to the 20-30 range. Most likely, I guess, the increase would be from a partial response from Rituxan. The idea of taking low dose Danazol would be to preserve this partial response. From what I've read partial responses aren't known to last very long. Would you suspect just liver monitoring is all that is required when taking a low dose? Any recommendations?

I note from this study, full response to Danazol can take 4 to 6 months. Is that your understanding too?
www.bloodjournal.org/content/106/7/2244?sso-checked=true

Wednesday 29th March

Not going well - severe bruising - petetchiae on my head and feet - fatigued - feeling quite unwell - count of 6.

IVIG today and continuing Danazol but IVIG in two weeks (not three) with FBC then visit Haematologist the following week for FBC and chat.

ITP as refractory and unpredictable as ever!

rjsmyth, was getting worried. Have been working on what I will try if Danazol fails for me. Perhaps your hema will have some good ideas on next visit. Or, maybe just sticking with Danazol longer? They say it can take awhile.

Here are some ideas. I note you've tried several single agent/drugs . Getting a poor response from Prednislone, Dexamethasone, Azathioprine, and Mycophenolate Mofetil. But did any of those 'move the needle' a little?

Perhaps combining two drugs (combination therapy) is a good idea to get a more powerful effect. A simple thing to do would be to merely add NPlate/Promacta back into the mix with Danazol. As I understand, NPlate is a more powerful drug than Promacta but one can develop antibodies to it. I don't think antibodies to Promacta are possible. So, Danazol and Promacta could work where Danazol and NPlate could not.

How about another alternative - to add an immune suppressive to Danazol? It seems like an immune suppressive could 'amplify' the effects of Danazol.
This study suggests adding Azathioprine or MMF to Danazol. See 'Second-line therapy' section.
This study suggests one can get a better response from Danazol when it is combined with steroids. See section on Danazol.

I wonder about combining MMF with Danazol. Perhaps you know. Isn't MMF pretty well tolerated compared with the other immune suppressants? Perhaps that is the safest combination?

Once an immune suppressive is added to the mix then one would think NPlate could begin to work again.

The war on ITP continues. Advance on all fronts!

Thanks for the ideas in your reply. They are all sound ideas. I have responded to Azathioprine in the past.

With all of these concoctions of drugs they have awful side effects. I am just fed up with feeley tired, breathless and generally poorley most of the time. My main wish is to stop taking as much as possible whilst minimising the more dangerous symptoms.

Well it looks like I may be trying Danazol after all. CBC yesterday showed my count has dropped from 130's to 45 in the last month. I guess the high counts were holdovers from the IVIG in the hospital earlier this year. I go back to the hemo early May, if the count has dropped again I am going to give Danazol a try.