Well, the 201 is better than 800, but I know it's still high for you.  Good news on the Pred being reduced!  With any luck, the Avatrombopag won't raise your counts too high again!
Fingers crossed that this combination works for you!

In order for me to get on this morning, I had to log out then log back in.  Unless I do that, I just keep getting the message "Your session has expired, please log back in".  I'll have to go through this again tomorrow in order to get on.  PDSA is my homepage when I bring up my browser and I'm already logged in.
My question is, What Session is the message referring to?  Is there a timer on how long one can stay logged in?  Why?

For sure 201k is lots better than the 886k!!!!!
How nice the pred was decreased!   Hope you are feeling human again!

Hello All. . .I was just diagnosed with Pancytopenia. WBC, Platelets and RNC are all deficient. Does anybody have first hand info on the treatment for this malady. This happened after chemotherapy for AML Leukemia. My oncologist is giving me various injections for WBC and RBC boosts. He is holding off TPO-RA's so far for the platelet issue. Anyone have any experience in this area?

As a middle schooler, I was diagnosed with Grave's Disease (overactive thyroid) and had that treated. They also found ITP and I've been monitoring it for 26 years but never had treatment, except for Prednisone for my two births, in which my platelets rose to 33 and 48 and I didn't have any problems with bleeding. In fact, I've never had any problems with bleeding. When I get down to 5-10k, I see more bruising, but nothing alarming. I range between 12-30 but don't have any symptoms, no bruising, no bleeding, no red spots, nothing abnormal.

After reading stories here, I feel very fortunate, almost like I don't belong to the group of real ITP patients who are struggling with life threatening issues. It's interesting to read about ITP being connected to many other diseases, and I wonder what is so wrong (or so great) about my platelets.

Has anyone dealt with the false lab reports of platelets or live at a low number but with no symptoms? I found the idea of Pseudothrombocytompenia to be interesting, but I don't know where to find out more. After living symptom free for the past 26 years, I've given up on seeing a specialist, who never seemed to help in the past (because I didn't really need help). Even when I had a "high risk" pregnancy, the hematologist offered nothing more than Prednisone, and we had a normal birth with no abnormal bleeding. At first my numbers give fright, but then there is nothing to do since my body behaves normally.

Pseudothrombocytopenia is a common laboratory phenomenon that complicates or precludes reporting of platelet count. It is often, but not always, a phenomenon commonly caused by the anticoagulant EDTA. The prevalence of pseudothrombocytopenia varies depending on the study, but it is estimated to occur in up to 17% of patients who undergo blood tests using EDTA. The prevalence is higher in older adults and in patients with certain medical conditions, such as autoimmune disorders and cancer.Pseudothrombocytopenia can be difficult to diagnose, as it can mimic other conditions, such as thrombocytopenia. However, there are a few key features that can help to make the diagnosis, including:A history of EDTA-dependent pseudothrombocytopenia
A normal platelet count in citrate-anticoagulated blood
The presence of platelet clumps in the blood smear

If pseudothrombocytopenia is suspected, it is important to confirm the diagnosis by performing a blood test using citrate-anticoagulated blood. This will help to rule out other causes of thrombocytopenia. Pseudothrombocytopenia is a benign condition that does not require treatment. However, it is important to be aware of the condition so that it can be diagnosed and managed appropriately.

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!

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!

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.

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.

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?

Hope you are feeling human again!
If only Mel...count on Friday was 5 so now on a Pred rescue !!!!!!
Retest Tuesday 2^nd 

Oh, mrsb, that sucks! I'm sorry to hear this!

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

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!  

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!!

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?