SHARING INFO ON RESULTS ON MY DEX PULSE

Dear all,

Just to share info for those that might be interested in it.

I finished a Dex Pulse on 10th December with the following results so far.

- 18.12.18.......................39000
- 03.01.19........................43000
- 10.01.19.......................74000
- 18.01.19........................43000
- 28.01.19........................55000
- 08.02.19........................39000
- 19.02.19........................35000

Crossing fingers it stays over 30.000!!!

Best regards

Nice, Mr Marx.
What do you think. Try another pulse if it does go down further? Or, bail out and try something else? Promacta maybe?

Too many dex pulses are not good . I think diabetes is a serious concern about that .
If possible and you're asymptomatic , Don't undergo any treatments (and also if you don't have other comorbidities . for example , high blood pressure and low platelet count is dangerous . I think because of possibility of stroke). That is probably equivalent to platelets > 10,000 per microlitre (Personally , I have experienced 4k with almost no problem , and 1k with slight bleeding in my gut )
But if you need treatment , Consider Nplate or Promatca .
Rituximab might be an option . Hal might have idea about whether you should try that before TPO's or not . But if you used Rituximab , Don't overdose like me . I got no result from it and my doctor insisted to have 5th infusion , despite getting no result until 5th week . it sent me to hospital for couple of nights due to "fluctuation of my body temperature for over a week" . UGH !

About going on without treatment , also consider this :
dexamethasone half life is about 4 days . After two months , it seems safe to say that it is your own count . However , it might fluctuate again , as it regularly does in itp . And given the fact that you were diagnosed surprisingly by a routine test (not intended to find out whats wrong with those bruises ? ) It seems safe to "Try remaining untreated for a month , while you are also above 10k and get continue with getting weekly blood test for a couple of months to make sure you are not hanging around with less than 10k thrombocytes swimming in each microlitres of your bloodstream "

My insurance and my doctor are in touch. It seems promacta will be on the menu if my counts are steady below 30000 for some time.

Yes Lman.

I well noted your advice. It makes perfectly sense. It was my first DeX pulse and it seemed to me less invasive than prednisone. However I look forward not having a second one.

I hope my counts stays over 30000 so it is out of question to have any medication. As you say, it might be my own count, so maybe i touched bottom. I had a nice 74000 out of the blue that made euphoric but it didn't last

finished a Dex Pulse on 10th December with the following results so far.

- 18.12.18.......................39000
- 03.01.19........................43000
- 10.01.19.......................74000
- 18.01.19........................43000
- 28.01.19........................55000
- 08.02.19........................39000
- 19.02.19........................35000
- 01.03.19 …………….34000
- 18.03.19……………..29000


On the edge

Just a thought Mr Marx. If one gets fewer tests, fluctuating counts are less troublesome/worrisome.

Edge, as in living on the edge when a train is approaching?
www.youtube.com/watch?v=7nqcL0mjMjw

Indeed but I want to know when is too low as well as proving my insurance I need promacta

If I had results like you Groucho , I wouldn't even check PDSA anymore
Maybe it's time to check counts every 3 months and forget about platelets ?

How often does your insurance company need to know your counts?

Mrsb04
My insurance wanted to have 2 consecutive results below 30 but then they asked me if they can contact my doctor directly. I agreed. Then doctor told me we will evaluate the needs for splectonomy, rutixumab o promacta after a while.

It seems my doctor agrees with Lman since he told me not to do any more blood test except if i need to fly or make a physical effort or i have bleedings or petechiae...

All seems pretty vague to me.

Groucho sounds a nightmare to me .. I am so grateful that over here in the UK we have the NHS. I now qualify for free medications. Prior to becoming 60 I paid the equivalent of $140 a year that covered all my medications. How much longer free prescriptions for the over 60’s will continue in the current economic climate is anyone’s guess however.