danazol, predizone

hi everyone new to this with my wife, had this for about a month, the itp. our counts are very up and down, anywhere from 3000, and last week in hospital, had to get readmitted, counts were low, was up to 69,000, then went down to 23,000 in three days. point i am making is what are your thoughts of danazol and predizone, might have to go to promacta, mood swings really crazy with predizone. would like thoughts, on all this. right now we go to hospital now twice a week for cbc, and cross match, if needed, might need hemoglobin and platelets, not a great life, tough to try to work probably have to go on disability, hope to hear from all, thank you

It's really early in the game to make any permanent life changes. Many people work with ITP, low counts and all. There are other treatments to try if Prednisone isn't helping. I hope the doctor suggests something soon. In the meantime, hang in there. It does get better!

dont make any quick decisions it can be frustrating i was fired from a job because I was put in the hospital for two weeks with a count of 1k and a hemoglobin of 4 dont think that was legal but anyway there are many diff treatments from steroids to promacta. I started out at 17 taking steroids that used to work but now that I am 25 the things that used to work no longer do with promacta you have to be careful because it effects the liver my liver function went up tremendously and promacta did not work at all I am now on Nplate and from four months being at 5 or under my counts this last week were 43 down to 24 not awesome but i just started nplate 3 weeks ago so their still hope for better counts. the idea is to stay positive have you tried IVIG? Rituxin? Splenectomy? these work for alot of people, not me, but I know alot of people have had great success I would think about going these routes before promacta and nplate until it is your last choice just because drs have no idea the long term effects either can cause. Hope this helped a little?
Keli
Chronic ITP for 8 years

MusicGuy,

Did I read your post correctly? Are you saying that BOTH you and your wife have ITP? I don't know that I've heard of that before. I would be definitely looking at whether it is due to some environmental or drug-induced cause, or did you both recently get the flu shot (which has thrombocytopenia as one of it's more common side effects)?? Have you had your house fumigated, done any recent painting or varnishing or remodeling, things like that? You'd be surprised at the vast number of common OTC drugs, prescription meds such as antibiotics and the many anti-depressants/anti-anxiety drugs that can cause low platelets. Many toxic chemicals can have the same effect. So, I'd really investigate as to any possible trigger. There are ways to mitigate that, if you know what the cause is. Anyway, that would be my first thought.
But, then again, maybe I'm not understanding your post correctly, either. I just think that seems really bizare that you'd both get it simultaneously.

April

So it doesn't get remembered as a 'fact' because someone read it on the internet - here - while ITP may be a side effect of the flu shot in more than zero people, it is far from 'one of its more common side effects'.

www.cdc.gov/flu/about/qa/flushot.htm The CDC website is the source for the following statement:
<<Why do some people not feel well after getting the flu shot?
The most common side effect of the flu vaccine in adults is soreness at the spot where the shot was given, which usually lasts less than two days. The soreness is often caused by a person’s immune system making protective antibodies to the killed viruses in the vaccine. These antibodies are what allow the body to fight against flu. The needle stick may also cause some soreness at the injection site. According to the Advisory Committee on Immunization Practices (ACIP), rare symptoms include fever, muscle pain, and feelings of discomfort or weakness. If these problems occur, they are very uncommon and usually begin soon after the shot and last 1-2 days. >>

That would be really weird if both husband and wife had itp, I agree with april, you'd have to look at environmental factors. What I think the writer was saying was that his wife had itp and it was more of a supportive perspective saying 'we' but I'm not sure.
Erica

no im sorry just my wife

@April, you just make me think whether there is a connection between after renovating my apartment & dx with low platelets 6 months later in 2009.:huh:

MusicGuy,

Don't be sorry that it's "just your wife"! I'm really glad it's not the both of you, as I read it. Though it still won't hurt to consider the other things I mentioned, for your wife. Hopefully, it will be a short term "slice of life" adventure for the two of you. Makes life more interesting, and you never know where it might lead...

Lindy,

That's definitely something to consider. You can check out the different products you used, and do some research to see if any of them contain chemicals known to cause thrombocytopenia (that's usually how it's listed--not as ITP).

I think my daughter's ITP was triggered by being trapped in a house during a huge storm of wild fires that destroyed thousands of acres in Southern California (She was at a slumber party, and the dad had fortunately dug a fire break around the house, the only thing that saved them. That area was the most deadly in the county) Hannah was diagnosed with ITP 6 months later, though I am certain that her platelets were dropping well before that, we just didn't realize the symptoms. But, looking back, that was when we started noticing a huge shift in her behavior (for the worse). I have always felt that it was a cross between experiencing the fear of almost certain death, and seeing the total destruction around her, as well as all of the highly toxic fumes and chemicals she was forced to breathe in, as they were evacuated, not just once, but twice, as the fires continued to rage out of control. And, our air quality was very poor for weeks afterward. Even though everyone tried to stay indoors for the next week, the ash and fumes still managed to seep through the house somehow. It was awful!.(Though it did make for some incredible sunsets!) It was interesting to see how the homeopathic remedy she needed was related to fire in many ways.

hello everyone. the cause of my wifes itp was medications, yes medications. she was taking metformin, and lisinprol with hctz, these i say , these can not be taken together, the side effects of metformin is destruction of platelets, which is crazy, also the combination of hctz(hydrochlorothiazide), this drugs made the problem, she was taken them for a number of years , the pharmacist, and the doctor was sleeping, when these were prescribed together. cooper hospital in camden did confer this. ladies and gentleman be careful with medications, they can do more harm than help

Lindy,
There's another member here who sees a connection with a severely moldy carpet and the start of her ITP. Did you happen to come across mold too?

My home was mold free when I was diagnosed, but when I discovered a little mold about a year ago it really freaked me out remembering that story.
Erica

@Erica, my home is carpet free so no moldy carpet.
But it could be the renovation work at that time.
Maybe breathing all the dust in the apartment during the month when the workers were hacking wall & floor tiles, etc... I was in the apartment all the while as hubby is away at work.
Now that was 2 years ago. Till now my platelets still low.
Wonder what can help? Under watch & wait mode.