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Yesterday 23:55
  • MelA
  • MelA
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!!
03 Jun 2023 09:30
  • CindyL
  • CindyL
Oh no, mrsb!  Hope it settles in your comfort zone soon!
03 Jun 2023 04:44
  • mrsb04
  • mrsb04
Count now 323....too high. Missing today's dose then down to 3x a week from Monday
02 Jun 2023 09:03
  • CindyL
  • CindyL
01 Jun 2023 14:18
  • MelA
  • MelA
Tomorrow a decision on the dose - I hope you get a "normal" count tomorrow mrsb, one that you are comfortable with!!
01 Jun 2023 00:05
  • MelA
  • MelA
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. 
31 May 2023 18:42
  • AsMom
  • AsMom
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. 
31 May 2023 18:27
  • ImPatient
  • ImPatient
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.
31 May 2023 18:24
  • ImPatient
  • ImPatient
What does your doctor say, and does he/she know what's in these products?
31 May 2023 16:39
  • AsMom
  • AsMom
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?
31 May 2023 04:16
  • mrsb04
  • mrsb04
Thank you both. Staying on alternate days this week. Retest on Friday and then a dose decision after the result. 
31 May 2023 00:05
  • MelA
  • MelA
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!!!
30 May 2023 07:01
  • CindyL
  • CindyL
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!
30 May 2023 05:49
  • mrsb04
  • mrsb04
29 May 2023 20:01
  • JJ
  • JJ
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.
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