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  • mrsb04
17 Apr 2023 14:55 - 18 Apr 2023 01:51
A count above 800 is not what I want.!!!!!!
Avatrombopag on hold. Weekly bloods continue 


If anyone knows how to move a topic  into the correct category please let me know. This should be in Treatments General not Newly Diagnosed 
  • MelA
18 Apr 2023 00:22
Seriously mrsb your count is above 800??
You are a mystery woman for sure - what is going on, bless your heart!!!!!!!!!!!!!!

[I'd click on Report to moderator below, it is above the Quick Reply  Reply  Quote buttons - as them to move this to the Treatments General section]
  • mrsb04
18 Apr 2023 01:22 - 18 Apr 2023 09:25
Thanks Melanie I have done as you suggested. 
Consultant thinks I must  be extremely sensitive to Avatrombopag. Now taking baby Aspirin until count lowers  
  • CindyL
18 Apr 2023 09:55
OMG, mrsb!  That's a high number!   It's sad that your doctors are having such a hard time finding something to keep you in your safe zone. I bet they are getting just as frustrated as you.
Fingers crossed that number comes down, but not too low.
  • JVP
18 Apr 2023 16:00
Hello all - Wondering if anyone has experience with Doptelet they would like to share.  
I've taken Promacta in the past -  worked a bit for me keeping me 30-60 range for 2 1/2 yrs until it didn't - tried Tavalisse but unfortunately did not work.  Heme wants me to consider Rituximab or Splenectomy now - have avoided both of those options - then noticed small 44 pt study abstract that stated Doptelet works in many even after Promacta failure. 
  • MelA
18 Apr 2023 17:59
What is the range of your count now?
Why does your hematologist feel a splenectomy will work?   
  • kbrinser5859
18 Apr 2023 20:24
Prosorba column replacement was created by kbrinser5859
After 21 years of remission, my ITP is back.  The treatment that worked really well for me was Prosorba column.  However it went off the market in 2007.  So far nothing has worked to get my counts up.  Not prednison, IVIG, Promacta or Doptelet.  Just had my second treatment of Rituximab and will be starting  NPLATE on Friday.  Anyone out there who also had success with Prosorba and have suggestions on something that has worked well for them since Prosorba is not around anymore.  Thanks

Karen
  • kbrinser5859
18 Apr 2023 20:48
Gut Microbiome and ITP in adults was created by kbrinser5859
Anyone know of any research being done on how the gut microbiome relates to ITP in adults.  I did see some research being done with Kids with ITP and the gut microbiome at CHOP but was wondering if anyone knew of research being done with adults.  Thanks,

Karen
  • JVP
18 Apr 2023 21:26
Hi MelA  -Count is 23 as of this week. (which is symptom free for me and close enough t o 30 that it keeps me calm)  went low as 9 and 15 in Feb and March while on Tavalisse.  I have made it clear to Heme that I'd like to leave splenectomy as last option but was open to rituximab. Honestly don't know his rationale yet. He is top in field like many, but I usually wait 45 min to get to talk talk to him for 20 min. (not sure if that is same everywhere but common with specialist visits in the states) I have fear of increased risk of infection for both those options that, for me, weigh against remission chances. So I guess the answer is I don't know why he feels splenectomy will work.  He sched initial consultation and I have visit with surgeon later this week just to get info on procedure.

I was kinda hoping to recycle a Promacta like drug before trying Ritux or splenectomy or maybe do wait and watch for awhile.  I've been more than 7 years under 50 now so my comfort level with wait and see seems higher than Heme doc.

   
  • mrsb04
19 Apr 2023 02:04
Replied by mrsb04 on topic Doptelet (avatrombopag) experiences anyone?
Eltrombopag eventually failed me but Avatrombopag in conjunction with 100mg Fostamatinib twice a day works for me so well I'm on  a break from it to bring my count back down from above 800. I was only taking it once every 3 days this time. 
  • mrsb04
19 Apr 2023 02:06
Replied by mrsb04 on topic Gut Microbiome and ITP in adults
I have been keeping my gut microbiome healthy for years. It has no effect on my platelet count unfortunately
  • tonymarinello
19 Apr 2023 09:04
Platelet "Boosters" was created by tonymarinello
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?
  • sneakerlrw
19 Apr 2023 10:11
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.
  • MelA
20 Apr 2023 00:08
Replied by MelA on topic Platelet "Boosters"
Have you discussed this with your hematologist/oncologist?
  • MelA
20 Apr 2023 00:15
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"?
  • JVP
20 Apr 2023 01:02
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
  • JVP
20 Apr 2023 01:07
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
  • mrsb04
20 Apr 2023 03:17
Replied by mrsb04 on topic Platelet "Boosters"
  • MelA
20 Apr 2023 14:35
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!
  • Lman
20 Apr 2023 22:14
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.
  • Reeves29928
21 Apr 2023 10:22
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.
  • dwfritz78
21 Apr 2023 21:25 - 21 Apr 2023 21:28
Relapse of ITP after 22 years was created by dwfritz78
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?
  • CindyL
23 Apr 2023 19:19
Replied by CindyL on topic JEFF!!!!!
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.
  • mrsb04
24 Apr 2023 05:04 - 30 Apr 2023 07:07
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. 
  • CindyL
24 Apr 2023 09:33
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!
  • CindyL
24 Apr 2023 09:38
Replied by CindyL on topic JEFF!!!!!
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?
  • MelA
24 Apr 2023 23:57
For sure 201k is lots better than the 886k!!!!!
How nice the pred was decreased!   Hope you are feeling human again!
  • tonymarinello
25 Apr 2023 11:03
Pancytopenia was created by tonymarinello
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?
  • Jeff
25 Apr 2023 11:39
Replied by Jeff on topic JEFF!!!!!
If you check the little "Remember Me" box when you log in, which I'm sure you do, it should allow you to stay logged in for a while.  But every computer is different and there are a lot of factors that could contribute to your "session" (logged-in to a website) to be reset.  Sometimes we have to reset things on the back end, which might terminate users' sessions.  Hopefully this will not be an everyday occurrence for you.  Sorry for the trouble.
  • JulieM
25 Apr 2023 14:05
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.
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