TIA due to low platelets

I have had itp since the 1960s (i am 56 now) and really not a lot of treatment. In the 80s I was on predisone it worked but I stopped due to side effects, so mostly watch and wait. In 2009 I was on a study for eltrombopang (promacta) and I went from 17k to 425 in 30 days. Rest of study I was one week on and one off. Since no checking and no treatment. Last Saturday my left hand went a bit numb and that was only a minute or 2. Then to a drive thru only to find out I couldn't speak properly. By the time I picked up my coffee in the window I was again fine. Next evening a bit of numbness so to the ER we went. All the time I was having a terrible headache but thought sinus infection because of the crazy weather here on the east coast. To my surprise my platelets had dripped to 3k! I had a bad cold about a month before so assuming that brought this on. They admitted me, put me on steriod drip, platelet transfusion, which made no sense to me since itp devours them. Released with 14k. Next day back to 3 when tested and the nurse was calling it a TIA. Prednisone prescription and after 3 - 50mg days up to 12. I have only been over 20k when on the study. They said I had drops of blood on my brain but no Neurologists came to see me at all. They gave me tramodol for the slight headache I am still having. It is not anything like what it was. Also waiting on promacta. Unfortunately I was denied prescription plan when trying to update my CareFirst back in 2008 for pre-existing condition and I make too much for the free program with Glaxo. I ordered from an online pharmacy in Canada $1500.00 for 28 pills suppose to be here 7-10 days. Fingers crossed.

So has anyone had something similar happen to them? Anyone heard of other options for paying for promacta? Anyone purchase from Canada? Not sure how long until i may be back to normal as far as the headache. I wish a Neurologist would have come see me at the hospital and online diagnosis can be frightening. A wake up call for sure. Sorry for the long rambling (I blame it on the Prednisone) and all the questions any info greatly appreciated.

Certainly I am no medical expert but not being able to speak properly seems like a pretty big deal to me. It takes a lot to make me want to go to the doctor and that would make me go see a Neurologist.

Cannot help with the prescription options. I know my mom has gone the Canadian route with success in the past. (doing everything I can to stay off my soapbox about the US subsidizing the rest of the world to have cheaper treatments)

Interesting to hear about your cold. I got ITP (4k in hospital) after a four week battle with a fierce cold and it settled down after about 4 months (80k - 130k range).. came back 4 years later when I had a 3 week battle with another particularly heavy cold.

It does sound like TIAs caused by tiny haemorrhages. Are you now being seen by a haematologist? They are the ones who should be helping you.

Thanks all. Yes I have had a hematologist always but haven't followed up for about 2.5 years. I have the one at Hopkins in Baltimore and one here now on the Eastern Shore of Md for CBC weekly until this is sorted. Back in today 13K. Like I said a bit blase about it because i have lived with it for over 45 years. Not anymore. Did ask questions to the nurses at the hematologist today so they got some answers from the Doctor and a print out of what was happening on my release. Last night about 5pm the headache totally disappeared.

As far as the Promacta. I spoke to North Drugstore this morning and found out that the drugs are coming from India and that made me hesitate but was given an option for $250.00 more to receive it from their licensed pharmacy in the UK. A friend runs a Doctors clinic in Newcastle and she checked it out but was told it was a hospital only drug so there was no way for her to get me a private prescription. I expect the pills to arrive before 21 days. Feel lots better about all of this today because for the first time in about 8 weeks there was no headache upon waking.

Char

@Big Dave the drug pricing IS insane I am just going to see how this first route goes and take it from there!

Don't bait me in this conversation I have affiliations with someone rather high up in a drug company and to see the costs associated with researching and bringing a new drug to market would absolutely blow your mind. Compound that with the fact that every other country gets their supply at a discount because we here in the US make up the difference and if we instituted the same policies here about 75% of the research would just evaporate.. arrgh! I said I wasn't going to do it..

ccurley wrote: As far as the Promacta. I spoke to North Drugstore this morning and found out that the drugs are coming from India and that made me hesitate but was given an option for $250.00 more to receive it from their licensed pharmacy in the UK.

Interesting considering we in England can't get the drug at all. It just isn't available here so I have no idea where the licenced pharmacies might be.

Ann

@Big Dave no baiting . One step at a time on this one for me see if i gat my first prescription and I'll take it from there.

I spoke to my friend who runs an NHS Doctors practice in Newcastle and was told it is a hospital drug only that is all I know about availability in the UK. The Canadian drugstore offered me an option of their licensed pharmacy in India or their licensed pharmacy in the UK and I choose the UK. We shall see what the drugs come I'll post where they are from if you want to know.

Char

If they turn you into Chewbacca I want to be the first to know

BigDave you bet with photos

Ok, I'm curious, what Canadian drugstore out of which Province?

northdrugstore.com

Still nervous about transaction but received a call and email to verify. They had it wrong again coming from India but quickly updated it to UK and in process. Suppose to ship in 3 days and arrive 7-10. This is all an experiment I hope doesn't go terribly wrong.

C

I hope for your sake there's no issue with shipping across the border!

I'll have to ask my doctor about this company next time I see him. I see it's based in British Columbia out on the West Coast; I'm in New Brunswick on the East Coast.

I was just curious, thanks!

My first call was to my friend in Kitchener. She gave me local pharmacy numbers but it isn't as easy as walking in with a US Prescription. You have to have a Canadian doctor sign off on it as well. Then you should be able to take it to any pharmacy. But that being said I am wondering how easily accessible it is in Canada as well. I think it all has to be specially ordered in someway. I am not too clear on that. Once I wasn't able to be on any of their discount programs there was nothing left to pursue.

I will post back if an when it comes. Hope for best, expect worse...

C

Just an update on Canadian drugstore. I cancelled the order and will have to pay US prices. 15 at a time. But they will be overnighted and i will have tomorrow. First they came back about India then finally money came out of checking and that's when I receive a call about it being hard to fill in UK did I want to get from India or wait longer. My platelets went to 5 and did Wynrho drip Monday so figured it was time to stop screwing around now lets see how long for refund! Diplomat Pharmacy folks are great. Live and learn.

Rec'd Promacta on Thursday last. One tablet for Thursday. In Friday count it 6K. 3 more days of Promacta and continuing on the wonderful Prednisone and Monday a.m. up to 21K. 40mg Prednisone tomorrow, then 30mg, 20mg and finally 10mg. So last Prednisone is Friday. We will see where I am then. Doctor has already suggested maybe taking Promacta every other day sounds great to me. It was a good day.

Hey! Going up! all right! I am praying for ya! And yelling a lot apparently...