Cindy - hope things are going better and you don't have to log in every time you come here!!

Everything is going good so far!  It's just so frustrating when it does happen.

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. 

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.  

Yesterday's count was 30. Now on Avatrombopag twice a week, Fostamatinib twice a day and 3mg Pred daily.  

That's a better number for you mrsb!  Hopefully it goes up just a tad more or holds steady there.

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.

That is good to hear Cindy [and yes, it is frustrating]

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. 

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? 

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.

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. 

Hi! Does anyone know of a terrific hematologist with ITP experience at either Cleveland Clinic or Mayo Clinic? Will greatly appreciate any responses!

Have you checked their websites?

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!

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...

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. 

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!

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.

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. 

Oh, my! Point taken. Thanks for sharing; I'm glad you were able to keep your spleen!

I'm with Mel, can't call her Queen.  Does her Consort title also have something to do with the fact that she is King (gotta get used to that!) Charles' second wife?
Did you get up to watch the Coronation, mrsb?

I haven't looked but I wonder if the sites for Cleveland Clinic and Mayo Clinic have the name of the head of the Hematology dept [or hematology/oncology] - could write him/her to see if they have a suggestion on who to see.

I have had a few hematologists since the start of ITP, including one in Tokyo & one in Hong Kong - one here was so so so fantastic but unfortunately he passed away suddenly, his wife wrote each of his patients a personal letter letting us know how much each of us meant to him.  Now I have a hematologist who absolutely LOVES blood (he is also an oncologist because he said you can't just be a hematologist, you need oncology too) - my first visit with him he had a flip chart made up about ITP and also gave me a hand out he'd written about it, he knows a lot about ITP and with that flip chart and handout he had me forever a patient.   After all by the time I became his patient I'd had ITP for over 20 years.  He is a super hematologist, I pray I never need him as an oncologist!   

I do hope you find someone to help you at either of the clinics - seriously, you might write (or email if you can get an email address) the head of the hematology department for advice as who to see.  Or call and get the hematology department.

Does her Consort title also have something to do with the fact that she is King Charles' second wife?
No it doesn't  Cindy the spouse of a monarch is always a consort. 
Yes I did watch it. 
 

Thank you for this heartening reply! I am so glad that you've found a wonderful hemo MD; I hope he does well for you for many years. We have had some experience with recommendations from dept heads (tho' not in hemo), and have found that sometimes the one recommended is not necessarily the best (tho' sometimes) but often the one that's new and in need of patients. So, if we can find a recommendation thru another route, we'd prefer that. That said, we may end up going the dept head route. We shall see. Meanwhile, thanks again, and best wishes.

Made an account to come tell you! All of the hematologists treat ITP but they usually are oncologists/hematologists. I am seeing Dr Kerwin (he is GREAT!) of the Cleveland Clinic and I know he has other ITP patients as well. You can always use the website and search for a doctor but you can also type in ITP in the search bar and it will bring up doctors with it as a specialty too! 

I have also been dealing with it mostly the past year as well so hit me up anytime! 

Don't be intimidated to have an oncologist/cancer center as your main place of care! The Moll Cancer Center in Fairview is where I get my ITP treatments and care  

Hi Tony,
Sorry about your diagnosis.
My last hematologist said that folate acid can help platelet counts a bit. I haven't seen a noteable change.
When I went from being vegan for 17 years to eating tuna and salmon I went from staying around 100000 with 25mg Revolade to not needing any ITP medication. Could be a coincidence that it happened at the same time. Or because of b12 and omega 3 acid... 
There was some leaf extract that was talked a lot about a while ago, I forgot what, but I had it and it didn't seem to do anything. I can't imagine anything natural helping raise platelets a lot.

Was it papaya leaf extract? I read about this somewhere and bought some, but I couldn't decide when I should try it. It might just complicate things while my haematologist is trying out medications. Currently on a diminishing dose of prednisolone and a hefty dose of mycophenolate. I'm thinking I'll try the papaya leaf when I come off the steroid. I'll certainly post if it does anything

Thanks MoJo for the info and so glad Doptelet is working for you!

FYI - I decided to push for/try Doptelet and my Heme doc agreed, insurance approved, and start tomorrow - encouraged by your response and others in this forum - Cheers JVP