I have been keeping my gut microbiome healthy for years. It has no effect on my platelet count unfortunately

I have (AML) Leukemia and ITP. I am currently in Chemo Therapy. This chemo knocks my platelets down even more than ITP. .  .Sometimes to the single digits. I am almost always under 20 and I am constantly requiring transfusions to get them up?!  Is there any medicine booster than can be used in concert with chemo and leukemia to bring them up without danger?

Thank you for your comment. I wasn't able to find any information on the impact of joint replacement on ITP. Did you find any articles that deal with removal of bone marrow during a full hip replacement and its "after surgery" impact on ITP patients? 

Although the disease is idiopathic (and I am not a doctor), sometimes I wonder if the removal of productive bone marrow doesn't impact overall platelet production. 

Again, thank you.

Have you discussed this with your hematologist/oncologist?

Was asking JVP because I know of someone [there was a group of us ITPers who would get together here] who went to London to do the indium test to see where her platelets were being destroyed - the testing showed the spleen.  She came back here, had a splenectomy and was ok for a couple weeks & count back down it 5k.  

Have you discussed with your hematologist about your hope to "recycle a Promacta like drug"?

MelA - Thanks for info/folIow-up : )   have appt with hematologist this Friday - plan to discuss Avatrombopag (Doptelet).  Since posting I found one small study of people who switched from eltrombopaq (Promacta) to avatrombopaq (Doptelet) and almost all did better on Doptelet. Also encouraging to see mrsb04 doing so well on it!
I think I've seen that post you are referring to. I've done a lot of reading posts here and med journal abstract reading (at least what isn't way over my head /you don't have to pay a subscription for) and although I'm happy for and supportive of people who posted here where a splenectomy and/or Rituximab has provided remission for them, I think I want to leave as last options. JVP

mrsb04 - Thanks for sharing/ the info - Glad you're doing so well with avatrombopaq and tavalisse!  .. and that avatrombopaq-Doptelet worked for you after eltrombopaq-Promacta  Great to Hear     Cheers JVP

Have you tried TPORAs ?
pdsa.org/platelet-growth-factors.html

I'm really not in a remission [count not normal, but count decent] - I had to take baby aspirin for 2 weeks after each knee surgery & my count went up.  Now taking a daily baby aspirin and my count has gone up.  Crazy!

Hi
so sorry to hear that
Platelet transfusion is normal for GI bleeding
There are still plenty of treatments available (or a combination of treatments)
I don't know where you live but try to find a more professional doctor who knows how to combine treatments. What they have done so far seems based on protocols. but some people may not respond to treatment but may respond to a combination of treatments. You may also consider rituxan as well.

I hope you find something that works best for your son. I've been there and I'd pray for your son to get better soon.

Thank you for your kind response. They started Rituxan three weeks ago. He is still receiving Doptelet and Fostamatinib so they are trying combination treatments. This morning his platelets were 2000. He has been hospitalized for 11 weeks. Bone marrow biopsy and FoundationOne testing showed no cancer.

thanks for any and all help.

I'm a 44 year old male living in Connecticut.  I was first diagnosed with ITP at age 22 back in 2001.  My count was 1000 when I went into the hospital.

I was hospitalized for about a month (2 weeks in California and then 2 weeks in my home state of NY).  They did the standard treatments at the time (Prednisone, IVIG, WinRho, Vincristine) but my count barely moved from 1000.  

Once I got a splenectomy, my count returned to normal and has been fine for 22 years.  I've generally been able to live a normal live, although the trauma of having ITP is something that you never get over.

In early March, I had to travel for work and ended up catching Covid for the first time.  I was fully vaccinated so the illness itself was pretty mild.  I tested positive on March 6, and on March 29, I noticed some petechiae on my forehead just before going to work.  As I said, it had been 22 years with no incident, but as soon as I saw them, my heart sank.  By lunch, I noticed more petechiae on my arms and chest, and went to the ER.

My count was 2000.  I was admitted on March 29 and immediately given IVIG and dexamethasone.  After two infusions of IVIG and daily dexamethasone, my count was up to 43,000 by Saturday and I was discharged with a daily prescription for 60 mg of Prednisone.

Unfortunately, when I got my bloodwork done the following Tuesday, my count was back down to 8000, and then next day it was 1000, so I was re-admitted on April 5, and I've been in the hospital ever since.

They re-tried IVIG and dexamethasone but it didn't move my count this time.  I've been on 60 mg of Prednisone every day, and have had 2 NPlate injections (April 10 and April 17), but my count so far hovers around 3000-4000.  I have some minor petechiae but no major bleeding from the nose or mouth/gums.

They've also done a bone marrow biopsy and it appears my system is producing platelets well but my immune system is destroying them.  

I'm having my first rituximab infusion tomorrow and will continue with NPlate.  I expect to be in the hospital for at least another week or two.

I'm just very concerned because now that I've had a splenectomy, I don't know what will happen if other treatment options don't work.  Has anyone else gone through something similar?

Jeff, I'm having issues getting logged on again.   Do you use some kind of timer on how long a person can stay logged in? It seems like every couple of months I keep getting kicked off then have trouble getting back on.
Is anyone else having this problem? Tomorrow when I come back, I will probably have trouble getting logged in.

In the right category now, thank you Jeff.

So as reported previously  Friday 14th count=886 and Avatrombopag on hold.
Repeat count on 17th down to 481, and on 21st down to 201. 
I am to restart Avatrombopag today (Monday24th) taking one dose a week. 
Repeat bloods on Friday 28th. 
Pred down to 2.5mg/3mg  from this morning. 

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!!