Hi, just checking on your situation. I'm 1 year and 10 months late replying on your message. I also have an 8 year old daughter who has chronic ITP and I've been homeschooling her for 3 years now. Her older sister was also homeschooled for 2 years but started going to school building last year because she is done with me and wants to socialize like other kids. They're both Covid vaccinated but yes she often brings germs and therefore my youngest gets nosebleed and we have taken her to ER several times for blood test.

Hi, I was wondering if anyone here has given this medicine to their child and if there's any adverse effect or contraindication. Thank you so much. 

Count on the 5th was 23, on  the 12th it was 174.
I took my last  Fostamatinib this morning.
Be interesting to see what the result on  19th is. Into clinic on 22nd to discuss with consultant.  

23k to 174k in a week - mrsb you really are a mystery!
Can't wait for your count on Friday - hope it is one you like!!

Thank you for the update, mrsb!  I've been wondering how you were.
Wow, talk about bouncing around!  Fingers crossed your count on the 19th is more in your comfort zone!

I am gettting a Haplo BMT. . .anybody have any experience?

Count on Friday 19th was 10,  2 days after a Covid vaccination and 4 days after stopping Fostamatinib. Extra 20mg Avatrombopag taken on Saturday.

This morning (22nd) count is 23. I have just been to clinic and now going to take Avatrombopag 20mg on alternate days and retest count weekly unless I stabilise then it  can to fortnightly. Back to clinic in 8 weeks. 

My digestive system is much more settled since stopping Fostamatinib. 

Oh, mrsb, you surely are a yo-yo!  23 isn't bad for you.
I am glad to hear that your digestion is better!
Hugs from across the pond! (Canada)

mrsb that 10 we don't like - I'd bet it was stopping the Fosteamatinib, what do you & the hematologist think?
Glad you are off that though, your digestive system was taking a beating.    

Now that 23 is going in the right direction - I pray that continues for you, upward to a comfortable count and then stabilize!

Hugs!!

I'm not sure Mel I had 2 counts of 5 whilst I was taking Fosta.
I am glad just to be on just one medication. Combinations are all well and good but how does one know which one is working? Or are  they combatting each other? 

If you're having vomiting and diarrhoea every day then you need to see a proper doctor, not someone who's simply going to give you supplements.

197 this week 

Wow!  That's quite the jump in a week.
And that's with only taking the Avatrombopag on alternate days.  Or has that changed?
My heart goes out to you mrsb!

mrsb, mrsb, mrsb - as Cindy said, that is quite the jump in a week.  You are a mystery my friend!
Are you staying on meds as is to see if things will even out?  
Sending good thoughts to you!!!

Thank you both. Staying on alternate days this week. Retest on Friday and then a dose decision after the result. 

I tried to search for what I needed, but all of the posts seem to be more than a year old and I'm wondering if there are any updates in protocol. My daughter has been in remission for 5 years after a very rocky road and treatment with prednisone, ivig, and Rituxin. She would like to pursue a phlebotomy course, but is not eager to have the required covid vaccine. She's already survived covid twice, and is concerned about the vaccine pushing her out of remission. I read about a study that showed (I think) that 12% of ITP patients in the study had a severe exacerbation of their ITP. Is the recommendation to be vaccinated still as firm, even if one might potentially have built some natural immunity?

What does your doctor say, and does he/she know what's in these products?

Margaret yes Papaya. Curious to read about your experience. I can't say for sure whether it worked for me or not, because I was taking it while on Prednisone and my platelets dropped so much I had to take Dexa + Nplate, later Revolade. So, it's possible my platelets would've dropped more quickly without Papaya, or it's possible it did nothing... for sure it didn't do enough.

I'm honestly not sure, but I was looking for current general protocol.   She's been unhappy with her doc and because we live in a rural area there just aren't a lot of choices. 

I don't know what the current protocol is - however I have had 5 covid vaccines, the recommended amount and I am now old enough to get a 6th.  I've had ITP for 34 years.    It is too bad your daughter is unhappy with her hematologist - however it might be good to get his/her opinion on the matter. 

Tomorrow a decision on the dose - I hope you get a "normal" count tomorrow mrsb, one that you are comfortable with!!

Hope you get/got good news today, mrsb!

Count now 323....too high. Missing today's dose then down to 3x a week from Monday

Oh no, mrsb!  Hope it settles in your comfort zone soon!

Oh mrsb I am so sorry - all this up & down bless your heart!!
Will you test again on Friday to see if 3x a week is better?
Take care now!!

I have blood tests booked for every Friday until the end of July.
IF everything settles down and I achieve some sort of stability I can always cancel some. 

That is good to hear.  Fingers crossed you can cancel some blood tests!

With my count at 233 this morning and my NPlate dose at a mere 10 mcgs (total dose, not mcg per kg), my MD recommended I stop taking it altogether.  So that's what I did!  The hope of being in a true remission has made me giddy.  Even if it's not "remission" per se, just maintaining a stable enough count to not need treating is a big blessing.  

Ever since Feb of this year, the count has been mostly stable despite the gradual lessening of the dose.  If anyone was to make me speculate about what happened, my guess would be the two back-to-back steroid dose-paks I had for an unrelated problem at that time perhaps "shocked" my system somehow.  Before the first pak, I was still careening from 114 to 37 in a week's time with no change in NP dose of 50.  After the second dose-pak, I haven't budged out of the mostly mid-100s, with a couple of 200s in the mix.  

I bet the office nurses will be glad they won't need to mix such an impossibly tiny dose anymore.  I will still need weekly CBCs for a while, but I'm still pretty pumped at this turn of events.  
There aren't too many people in my life who would even understand what all my fuss is about.  I know you do, so thanks for listening.  

Great news Janet. Long may it last.

Congratulations Janet!