Gotta love those 4:30am phone calls......aaarrrgh!

Well crap! That's all I can think of to say right now.
I've been back on Promacta for a month now, I thought things would go back to where they were before this insurance hassle started last July. I mean, Promacta had kept me nicely in the 50k range for three years (been dx'd for 10 years). So I'm sound asleep this morning, when the phone rings at 4:30am. It's my hematologist's Nurse Practitioner on the phone scaring the bejeebers out of my wife. The NP is freaking out because my count is a whopping 3k and she wants me to go to the ER. Uhhh, been there, done that, and got the t-shirt. I just told her that I am not exactly new to ITP and I'd call my hema from work after he got into his office. I didn't bother thanking her for waking me up or for needlessly scaring my wife.
It's a bummer though. I see another round of Dexamthasone coming this week, then a bump up to 75mg of Promacta. I honestly thought I'd be able to easily slide back into Promacta after not being able to treat for a couple of months (due to an insurance change). I guess not. Thanks for enduring this frustrated rant.
Oh well.....life goes on.


EDIT - to update:
Just got off the phone with my hematologist. Yup, as I suspected it would be; another Dex pulse and increase Promacta to 75mg. I'll stay here at work until my Dex script is ready. Then I believe I will take the off rest of the week and hide from humanity, while the Dex does it's thing. I may as well just have a 4-day 1950's science fiction film marathon at my house! It beats being 'aaarrrggh' at work (and I have to use up a few remaining vacation days this month anyway).
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Well that was sure rude of her to wake you up like that! You have ITP Pro status and should not be bothered in the middle of the night!

Good luck with the Dex and let me know if you have any cool hallucinations.

Wow! Why were they just noticing "critical" lab values at 4:30 AM? I hope everything works out for you. Joan

That's too bad Jack! I thought you were not on any meds for a while now - but maybe it was only because of this insurance thing.

How are you doing so far? How is the "coming off" of dex? I find ending dex to be worse than being on it personally. But I'm always thankful its for such a short time.

I suppose an update is in order. It has been...shall we say, "interesting". No...it's been STUPID!
Picture 4 monkeys pulling each others tails and running around in a circle.....or one clown car and 7 mimes.
And remember, I currently pay a $340.00 monthly insurance premium for this hassle!

I have no medication....other than a standing Rx for Dex. I took last week off work because I could not do my engineering job on Dex....just couldn't do it this time around. I am now on day 3 of what I term 'jello-days'.....that horrid phase after the pulse. Luckily (after 10 years of this goofiness) my boss understands and doesn't expect me to think much or do much this week. Note: I refuse to live on Dex...I hate the stuff.

I was able to obtain one month of Promacta in November with the assistance of GSK to help with the co-pay (I cannot swing the $1400.00 monthly co-pay my insurance wants). Anyway, the Promacta ran out on December 3rd. That 50mg/day dosage for one month left my count at 3k....not exactly stellar.
No problem, we started to repeat what we did 3 years ago: a big Dex boost followed by 75mg/day Promacta (then would drop it to 50mg after it kicked-in well). Oops! NOW the insurance company and the pharmacy had to approve the new 75mg dosage!
So here we are two weeks later, and still no Promacta. Nope. Currently I am waiting on the pharmacy (I think). They told me yesterday that the insurance had not approved it (even though the insurance company called me twice last Friday to confirm their approval). Then a different guy told me an hour later that it was the doctor who had not. Then they told the hospital assistance director (at the same time) a different version. This circus has been going on for 2 weeks now.
And no one can tell me what the new co-pay will be.
The pharmacy and insurance hassles are more exhausting than the ITP.

Life with ITP wasn't really all that bad for the 3 years I was on a steady Promacta Rx, counts stayed in the 50k range, and I only had to get tested every 6 months. Yep, relatively speaking, life was good then! Ahhhh...the good old days.
Honestly, if my counts didn't tank to below 4k without meds, I probably wouldn't bother treating.

Oh yes, and for the bonus round: My insurance company informed me Friday that we'll have to go through all of this again in a couple weeks (January 1st)....it's a new year after all! Sheeeeeeezzzzzzzzzzz......

Eventually, it will work out. I'll pay $$$$$$ out the wazoo for it, but it will work out.....I think...perhaps...maybe.

OH YES.....another update already! And it just gets more confusing by the minute!

Good news: My Promacta Rx is ready to ship to my house!
Bad news: My 'new' co-pay (again with GSK assistance) went from $75 to $315.20 ! A 400% increase?
That adds up to about $800 more per year than I'd pay without GSK assistance! And remember, I'm already paying $340 a month just to have insurance in the first place.

I give up.
I see my hematologist this coming Monday for my check-up anyway. I'll either do some cheap alternative, not treat and drop to 0 for awhile, or start selling off my possessions and bow to the almighty insurance lords.
Like Maxwell the pig says, "Wheeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!!!!!!".

Jack, how are you now doing? Did you get your Promacta straightened out? I'm finding that the pharmaceutical companies are coming out with all these new meds, and we now cannot affort them. The insurance companies are not coming through for us.

I do hope you are doing better and have this straightened out. Good luck to you and give us an update when you can.

As The Blues Magoos once so aptly put it, "Life is just a cher-o-bowlies". :whistle:
My counts lately (Dec) have been 3k, 8k, 5k, 4k, and 9k. But I'm more of a 'symptoms person' than a 'count person', so no biggie. I did bleed a bit over the holidays and collected some dandy bruises. I think my hulking great 17-year-old 'steam-punk' snow blower won the fight last weekend....it beat up my arms apparently!
My son came home for the week of Christmas (been 2 years). I spent the week on DEX. But we had a great time anyway.

The PLAN now? Since the 'assisted' Promacta would cost me $800 more per year than just bowing to the great insurance gods, I'm planning on pulling $3,500 out of my 401k this month and just getting the Rx through the normal channels.
I've really been waiting on 2013 to proceed. I have to wait until after tomorrow (1-4-13) when the current Rx expires, then I can have my doctor submit a new Promacta Rx, run everything through their process, and we're good (I hope).

But it has been educational. Since I've done so many Dex pulses lately. I've used them to study how I am affected, what doses do what to me, the 3-day process for coming off it, and how much I still hate the stuff.
I am happy to say that today I can stand up without falling over or walking into a wall!!!

Jack, that does sound like a good plan. Your health is worth the money. And, I know what your going through as starting in April, I,too, will be paying about $400 a month for my insurance (that's just for me--not for my spouse). The one thing that really got me upset is that they don't give you any warning so you can plan ahead (the company and the insurance). My deductible for the year will be about $3,200 or more.

And, those Dex pulses are something else. I had quite a few of them, and the worse part is after you've come off of them. After I've had the 4th one, the next day I an hardly get out of bed!

Good luck to you and hope 2013 will be a lot better year for you. Please do keep us posted

My insurance premium is $910.70 a month. I also have a deductible and co-pays. It's outrageous!

That is a COBRA payment. My former employer just decided to switch insurance companies, so I might have to start over with all new doctors. I have about 9 of them. This is going to be fun.

And, our Congress wants to know why the middle class gets stressed out or complains! Basically, we live just to pay our insurance premiums, pay our doctor bills, and buy our food!

Oops! While preparing to visit my GP yesterday, I pulled-up my company's 2013 insurance changes and realized they raised the max out-of-pocket to $3,500 + the $500 general deductible. Oh well, looks like I'll fork out $4,000 this month.
No worries....I'll be back on track by February. It's only money.....
At least my wife found another job. After 16 years as the Manager of a large family practice medical facility, she is now taking service calls at DISH TV. One does what one has to do in these odd times in the USA.

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Just an update on the continuing saga.........

6k count on Monday, so it was back on Dex Tuesday.

At least my hema's Nurse Practitioner at The James realizes now that she doesn't need to freak and call me at 4:30am.

I got all the new insurance info on Tuesday: 75mg dose is $7,717.48 per 30-day Rx, I'll have a copay of $2315.24 in January, then only $1184.76 in February. Which will complete the $3500 out-of-pocket-max for 2013.
I had planned on covering this with an FSA account to spread it out over the year. But the government just reduced that from $5,000 to $2,500 for 2013, so I'll dip into my 401k instead.
It'll be well worth the money to stay off Dex the the year!
Hey, the cost of Promacta was over $9,000.00 a month when I first started on it 3 years ago. So I should be happy that it is going down in price a little.

Life goes on....as does my foam-rubber helmet.
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Well, it sounds like you are getting this straigtened out and it really doesn't sound too bad money wise. We are all paying a lot more; and Sandy is really getting hit hard for her insurance cost.

I would say that next....you are going to need to be patient to get your count back up. You have gone through a lot emotionally and through this insurance mess. And, out body seems to react to all of this.

So be a little patient, and here's wishing you good luck on your treatment plan.