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  • CindyL
26 Apr 2023 09:55
Replied by CindyL on topic JEFF!!!!!
I do like the "remember me" box and it's usually checked.  This is  day 3, at least, of having to log out to get back in.  It's funny, it's just been recently that I have been having issues.  I was able to stay logged in for years.
It's more frustrating than anything else.
Thanks for the reply!
  • raj369459
27 Apr 2023 12:23
Replied by raj369459 on topic My 12 year old daughter with Chronic ITP
Hello All,
It's been a while since I updated my daughter's condition. Since my last post, her hema stopped Sirolimus and N Plate as they were not affective and restarted Promacta 75mg along with 12mg of Dexamethasone for 4 days. Unlike other treatments, Dexamethasone increased her platelets to over 650K and then a sudden drop (<2) after about a week later.  Then they tried WinRho which showed some positive results for 2 weeks, but she couldn't sustain the count. Now she is on Dexamethasone once in 2 weeks as this is the only treatment which raises her counts although there is a drop to single digit a week later. The hematologist says they can't keep giving her Dexamethasone as it has adverse side effects and the only option left is to go for Splenectomy this summer. Can anyone share risks involved with Splenectomy and whether this outweighs risks living with very low platelet count? Of course I understand the risks with low platelet count.  Thank you!
  • mrsb04
28 Apr 2023 04:56 - 28 Apr 2023 05:58
Replied by mrsb04 on topic My 12 year old daughter with Chronic ITP
Has she tried Avatrombopag or Fostamatinib ?
Personally I  prefer a low count to a splenectomy. There is absolutely no guarantee it will work. My spleen is staying put.
  • raj369459
28 Apr 2023 10:20
Replied by raj369459 on topic My 12 year old daughter with Chronic ITP
Thank you mrsb04. I will check these two treatments with hematologist.
According to multiple hematologists we have consulted over the past 3 years, the recommendation to remove spleen is because my daughter is responding to steroids and none of the other TPORA medications work well. They say taking steroids which inhibits her immune system is as good as not having spleen for the duration of steroids in her body. This is the argument they make whenever I talk of other treatments as removing spleen should be last resort and in case of emergency.
Also, living with low count is very risky and we don't know how low can we go before we take this into consideration. As we have noticed, my daughter bleeds whenever her platelets hover around 0 to 2000 which most of the times is the case. This is causing a concern not only for her but for all of us at home. She is not responding to other 'safer' treatments like N plate, eltrombopag, IVIG etc.
  • JulieM
28 Apr 2023 11:12
Hi Kats - you say you don't have any bleeding events, have they found your few platelets to work well or have any special characteristics? I understand it's scary to have low numbers, but if you've gone this long without much treatment, what is the ultimate goal of starting treatment when you have no symptoms? Have they ever considered Puesdothrombocitopenia or anything else in your case with no major bleeding events?
  • mrsb04
30 Apr 2023 06:58 - 30 Apr 2023 06:59
Hope you are feeling human again!
If only Mel...count on Friday was 5 so now on a Pred rescue !!!!!!
Retest Tuesday 2nd 
  • CindyL
30 Apr 2023 09:34
Oh, mrsb, that sucks! I'm sorry to hear this!
  • Ricdillon1
01 May 2023 21:48
ITP Doctor in Cleveland was created by Ricdillon1
I was recently diagnosed with ITP here in Cleveland.   My platelet count has been between 32K and 45K for the past year.   The hematologist that I am seeing is wonderful but she has never treated anyone with ITP before.   Does anyone have any recommendations for a great ITP doctor here in Cleveland?   I know the Cleveland Clinic is here but I am finding it impossible to get information on what doctors treat ITP.    Thanks
  • MelA
02 May 2023 00:11
Replied by MelA on topic ITP Doctor in Cleveland
A hematologist/oncologist treats ITP - some people have their PCP treat ITP.
Do you have symptoms at those counts?  My hematologist probably wouldn't treat at those counts if I didn't have symptoms.
Personally I'd go to the Cleveland Clinic!  
  • MelA
02 May 2023 00:13
mrsb what are we going to do with you - talk about a roller coaster - bless your heart!!
I am so sorry you are bouncing around like a tennis ball - this is nuts.  Praying for stability in counts for you!!
Can't wait to hear what tomorrow's count is!
Hugs!!
  • MelA
02 May 2023 00:15
Replied by MelA on topic JEFF!!!!!
Cindy - hope things are going better and you don't have to log in every time you come here!!
  • CindyL
02 May 2023 09:25
Replied by CindyL on topic JEFF!!!!!
Everything is going good so far!  It's just so frustrating when it does happen.
  • MoJoPokeyBlue
02 May 2023 17:06
Replied by MoJoPokeyBlue on topic Doptelet (avatrombopag) experiences anyone?
I started on Doptelet about 4 months ago.  Prior to that I tried just about every treatment but my Platelet count never seemed to go higher than 50.  With Doptelet, my count is now 352.  I even had my spleen removed last November, but it did not increase my count. 
  • MoJoPokeyBlue
02 May 2023 17:13
Replied by MoJoPokeyBlue on topic My 12 year old daughter with Chronic ITP
After trying everything, I had my spleen removed this past November.  It was a more difficult procedure than I had imagined and it took 3 months for me to fully recover.  It made no difference to my platelet count.  Without any medication, my count would go below 10.  I am now on Doptelet and that is working great.  
  • mrsb04
03 May 2023 10:18 - 03 May 2023 13:08
Yesterday's count was 30. Now on Avatrombopag twice a week, Fostamatinib twice a day and 3mg Pred daily.  
  • CindyL
04 May 2023 09:37
That's a better number for you mrsb!  Hopefully it goes up just a tad more or holds steady there.
  • raj369459
04 May 2023 18:35 - 04 May 2023 18:43
Replied by raj369459 on topic My 12 year old daughter with Chronic ITP
Unfortunately my daughter had blood in her brain and her hematologist had to do emergency splenectomy. There was another discovery by her hematologist. She has LRBA deficiency and the previous hematologist forgot to check this report in January this year. I am not sure if they had targeted treatment for LRBA deficiency, her ITP would have been controlled and not go till the stage of splenectomy. Now my daughter has to deal with two issues- one without spleen and another with LRBA deficiency.
  • MelA
05 May 2023 00:22
Replied by MelA on topic JEFF!!!!!
That is good to hear Cindy [and yes, it is frustrating]
  • khakie4
05 May 2023 12:56
LASIK eye surgery was created by khakie4
I am wondering if anyone with ITP has had LASIK eyes surgery? I am currently on Promacta to control my platelets and they have been at 55 for a few months. My doctor thinks it is fine as long as my platelets stay in that range. Just wanting to see if anyone else has had this done. 
  • RR01
05 May 2023 15:07
Replied by RR01 on topic My 12 year old daughter with Chronic ITP
Hope she is doing fine, keep us posted. Let's hope that the splenectomy works for her and she gets out of ITP. LRBA - Are they giving reasons as to why she got that, like is this an acquired condition just like ITP? 
  • raj369459
05 May 2023 15:43
Replied by raj369459 on topic My 12 year old daughter with Chronic ITP
LRBA is an acquired genetic condition. My daughter inherited one bad gene from me and another from my wife. They said that if a child has LRBA deficiency then s/he is prone to autoimmune conditions and one of them is ITP.
  • midwest6708
06 May 2023 09:54
Replied by midwest6708 on topic LASIK eye surgery
I have not had LASIK; but two ophthalmologists, in separate instances, proposed different surgeries to me.  They didn't foresee problems at any count but did require at least 50 for maximum safety.  For every other procedure I've had, including major oral surgery, the doctors wanted a count of 50.  You're probably good to go, but ask at the surgery center you're using to make sure. 
  • JandS
06 May 2023 13:09
Mayo or Cleveland ITP MD? was created by JandS
Hi! Does anyone know of a terrific hematologist with ITP experience at either Cleveland Clinic or Mayo Clinic? Will greatly appreciate any responses!
  • MelA
06 May 2023 13:18
Replied by MelA on topic Mayo or Cleveland ITP MD?
Have you checked their websites?
  • MelA
06 May 2023 13:23
Queen Camilla Question was created by MelA
Can someone tell me why Camilla is "Queen" and Philip wasn't called "King" but Prince??
Is Camilla called Queen or Queen Consort.  I, being an American don't know all this.  I just find it hard to call her "Queen".
Thanks for any insight!
  • JandS
06 May 2023 14:21
Replied by JandS on topic Mayo or Cleveland ITP MD?
Hi! Thanks... we've checked their websites and see a few MDs who treat ITP, but it's difficult to figure out who's really good. I am hoping for a specific recommendation...
  • mrsb04
06 May 2023 14:28
Replied by mrsb04 on topic Queen Camilla Question
Mel
Princes never became kings because they would then out rank their wives who were queens. 

Before Queen Elizabeth  died she decreed that Camilla would be Queen consort.  However invitations to the coronation referred to her as Queen. Presumably the King wished for her to be called that. 
  • MelA
06 May 2023 18:09
Replied by MelA on topic Queen Camilla Question
Thank you mrsb!  Ok, so a King is higher than a Queen.  Is a Queen Consort less than a Queen?
Like I said, I'm having trouble calling her Queen.
I appreciate your help mrsb!
  • MelA
07 May 2023 00:22 - 08 May 2023 00:06
Replied by MelA on topic Mayo or Cleveland ITP MD?
I know you are - but sometimes the websites for the clinics you mentioned will help.

Just my experience - I went to the medical school hospital and saw the head of hematology, he told me "you WILL have your spleen removed!" - that was around 1990-91 and my spleen is still in the same place it was when I was born.

Good luck - hope someone has a recommendation for you.
  • mrsb04
07 May 2023 04:06 - 07 May 2023 04:10
Replied by mrsb04 on topic Queen Camilla Question
Queens are either regnant  or consort. A regnant Queen is first in line to the throne  when the previous monarch dies.
A consort queen is married to or marries a king and has less power than a regnant queen as she cannot appoint a Prime Minister, dissolve parliament or create peerages. 
Our late queen's mother was a consort but was referred to as Queen Elizabeth, note the lack of a regnal number. 
Prince Philip was a consort too. 
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