Very High Platelets after Promacta

Hi everybody, we live in Colombia, southamerica and we would like to talk about our journey.

My wife has ITP for more than 20 years, just this year her ITP turned to be very refractary to corticosteroid treatments, she had splenectomy (twice, last one due to accesory splens),after last splenectomy she reached a normal platelet count for about a month, then It droped to 2K. So our hematologyst started with eltrombopag (promacta) at 50 mg a day. This is the data I would like to share with you guys.

date platelets promacta Prednisolone
12/10/2012 3000 50 mg 100 mg
13/10/2012 2100 50 mg 100 mg
15/10/2012 3000 50 mg 100 mg
18/10/2012 5000 50 mg 100 mg
21/10/2012 5000 50 mg 25 mg
22/10/2012 6000 50 mg 25 mg
23/10/2012 5000 50 mg 15 mg
24/10/2012 6000 50 mg 15 mg
25/10/2012 5000 75 mg 15 mg
26/10/2012 7000 75 mg 10 mg
27/10/2012 4500 75 mg 10 mg
29/10/2012 10000 75 mg 5 mg
30/10/2012 10000 75 mg 5 mg
31/10/2012 14000 75 mg 5 mg
01/11/2012 12000 75 mg 0
02/11/2012 38000 75 mg 0
06/11/2012 770000 75 mg 0
09/11/2012 992000 50 mg 0
10/11/2012 882000 25 mg 0

after platelets count reached 770 K our hematologist ordered to lower the dosage from 75 mg to 50 mg a day, the platelet count today indicates 882 K and my hematalogist set it to 25 mg a day, my question to anybody, Is this a regular procedure when platelets count reached so high? Should our doctor stop promacta and wait to see the platelets count in the following weeks ?

Today my wife is at hospital and she is now receiving a red blood cell
transfusion because her haemoglobin is at 7.6 ( she used to have it at 12 two months ago), her leucocytes count is 38.000. The doctor at the emergency room wants to keep her under observation due to her high platelets count and low haemoglobin. I will be updating.

I have heard of Nplate making your platelets skyrocket. I am sorry you have to go through this, hopefully soon the doctors will have more answers than questions for you. I haven't had Promacta yet, but I have read about many others who have and it seems to work well once you get the dose right. Breath and try to comfort your wife, I'm sure she is just as scared as you. hang in there.

Protocol with such high counts is to stop treatment until the count falls below 150 and then start again at a lower dose. Personally, and this is really just a personal approach, I wouldn't take any more tablets just now even if the doctor said to.

today ( 11/Nov/2012) Platelets ( 495 K , with 25 Mg of eltrombopag (promacta)), H.9.6 ( after blood cell trasfusion ), WBC: 37.000,
Several days ago WBC was 40.000, We are waiting the internist to observe this results. We hope the internist would let us go out of the hospital and return in two days for Control.

WBC has been decreasing but at low rate, doctors may wondering why WBC is still high, there is no clear evidence of any infection. She had pleural effusion due to her second splecnotomy. At that time her pleural effusion was so small, and it vanished after a month, right now It seems to return, my wife have some pain in the left abdominal area again. Can it be infected ? We think not, but we have to wait what doctors would say about it.

Wow all I can say is be careful I had a stroke in nplate when my counts reached 500k because our platelets are big they can or when that high I am in no means a dr but I would talk to yours about taking an asprin a day to taper the number down not telling this to scare anyone I just don't want anyone to go through what I did if it can be prevented

I have read some of your topics, you have a lot notable things during your journey with ITP.

We are now with 495 K of platelets and H. of 9.6 ( after a red blood transfusion). Now we are facing with the anemia, doctors ordered a week ago erictropoyetin to raise heamoglobine count, but only the red blood transfusion work out well to her lately. It seems to work when doctors ordered to lower the dosage of promacta, first from 75 to 50 mg and then to 25 mg a day. We were scare because at that pace platelets raised to 992 K in just one week and all the literature we find over internet says that the dosage must be stop after reaching 400 K. I dont know why doctors didnt take this desicition. Maybe He knows that It is better to continue dosage without stoping. I trust a lot in our hematologists (2) but with all the things we read, we were a litte scare about it. We were 2 days at the hospital and in the meanwhile she received Hartman solution to liquid a little bit her blood, in two days platelets went from 992 k to 495 K. We have already a month taking promacta( eltrombopag) and the side efects we noticed are headaches, nauses besides the pain for the pleural effussion. Since the begining of our crisis, we decided to go natural with food and leaving out some elements of our lifestyle that could interact with platelets production. What we want someday is to keep a more natural lifestyle ( food, etc) and maybe only receive a small dosage of promacta.

Tomorrow she has another hematologyst visit and we will see how she is doing now.

Thanks to all

Hello!
We are facing now low platelets we had a week with 50 mg of promacta but today it was increased to 75 mg of promacta. Our hematologist is worried about her low heamoglobine (7. and high WBC, so he ordered blood culture and red blood cell transfusion. My wife is still having fever for several days. We are waiting to see the results.

Last data:

date platelets promacta Heamog. WBC
11/11/2012 495K 25 mg 9.2 37200
13/11/2012 22K 25 mg 9.3 32100
20/11/2012 13K 50 mg 7.8 53200

Your family is in my prayers. Wish I had something helpful to tell you

HI!

My wife is keeping same results for several days ( Platelets 8K, Leuco 26K, Heamglobine 9 ), promacta ( Eltrombopag) is under maximum dosage ( 75mg). Our hematologist is willing to give her a plasma exchange wich have been a good therapy for ITP and others diseases. We wait that this plasmapheresis filter out most of her antibodies. There will be a plasma exchange daily for seven days.

We hope everything will be allright and maybe It could be a complete remedy for her ITP.

Leoned:

I haven't heard of anyone having plasmapheresis for ITP for many years. It's not used because it doesn't usually work. It does remove the antibodies, but the body just quickly produces more.

Anything is worth a try though and if your doctor is willing, good luck. Please let us know how it all goes.

HI!

Because the plasmapheresis had some troubles to get all the elements, our hematologyst give us to try another line of treatmente, we are now waiting to have Nplate ( romiplostin )instead of Promacta ( eltrombopag) and we are also try another cocktail with danazol and others drugs.

We dont know exactly what would be this cocktail, anyone knows how would it be?

I'm not sure why they are doing both of these treatments at once, how will they know which works? I think your doctor might be inventing some treatments - better ask the doctor!
Erica

We are here again,

Our cocktail now is:

400 mg Danazol
100 mg azathioprine
20 mg prednisolone

and she is still taking 75 mg of promacta ( eltrombopag)

at the same time we are taking:


2 gr Vitamin C
Vitamin B Complex
Papaya leaf extract ( 500 mg, Rochway- australian )


Platelets: 7 K

HI!

We are now out of the hospital, after several days with the same cocktail We got 20K a days ago.
Today platelets are in 15 K, out hematologist says that everything seems ok so far.
He lowered promacta to 50 mg a day.

update:
Platelets 28K

Everything seems all right.