The whole point of treating ITP is not to normalise platelet count but to aim for a safe count by using the lowest dose of medication to keep a count around 50 to 80

My husband and I feel the same way about masks in stores and about Covid. We are just trying to get the courage up to try to start living life. I am glad you have reached out

Brookiesnana
I have never worn a mask around my grandchildren even with counts as low as 4. I routinely wear them when I go for blood tests and medical appointments but other than that I assess the situation as to whether I wear one or not.
Are you still having weekly blood tests? It seems a bit excessive with a count that good.

mrsb04,
 Thank you for your response. Yes, I do go every week to have my number checked and I get my NPlate injection then as well. The dose for the NPlate is still on the higher side, and it seems to be working. When I first came down with ITP I was in the hospital for 2 weeks with a count of 5000, and was told I was very hard to regulate since nothing seemed to work and was told by my hematologist to wear a mask around my granddaughter since she was in preschool. At this point I guess I am still spooked about taking it off around her, though my husband and I really want to. We do however wear our masks everywhere we go. My new hematologist, when we asked her if my body was actually making more platelets then it was destroying, said it is probably just the injection, which confused us.

I'm with mrsb - a count of 86k is very good, as long as no symptoms! Unfortunately you may never know what is causing the low platelets - we believe (that includes the hematologist) we know what caused mine, a gamma globulin injection which was required by my husband's company before we could go to Tokyo to find an apartment for a move there. It was shortly after that injection & while in Tokyo looking for the apartment that the petechia showed up on my torso. When we got home to pack a week later I looked like I was beat up in a back alley with a 2x4 & had a count of 11k and dropping - I can laugh at that now, 35 years later. We moved to Tokyo a couple months later while I was on a high dose of prednisone, had THE best hematologist there who actually knew my hematologist here in the US - and later moved to Hong Kong before moving back home.

However I do understand your anxiety - all is right with the world and then bam, something we never heard of muchless dreamed of entered our life (ITP). I am glad your doctor is sending you to a hematologist, I still see a hematologist all these years later & my count is now fairly stable & decent.

Please keep us posted on how the visit goes with the hematologist and how you are doing!!  

Basically N Plate (Romiplostim) tells your bone marrow to manufacture extra platelets because either it wasn't producing enough before injections started or your spleen is destroying your platelets. Yor haematologist should be able to tell you which it is. Have you had a bone marrow biopsy?
Over here in the UK injections are done by the patient at home which reduces the amounts of tests if counts are stable.

I have not had a bone marrow biopsy, but my hematologist seems to think it is coming from my bone marrow. We are not allowed to give the injections at home, we have asked about that.

Hello,
My Background: 41 year old male

ITP 2008 - remission - Danazol and Rituxan worked.

2024 - Current - ITP came back - Danazol and Rituxan working well and praying for the same result - remission.

In regards to PRP for subjects in remission having had ITP or whom have low platelet numbers I would have to advise against it. Everyone is different but this is my story and I don’t want what happened to me to happen to anyone else.

In 2021 I had PRP to my right hip due to OA and hip pain. It worked great and my right hip feels great present day. So I used to be a proponent of PRP until recently.

2023-2024 I had right shoulder pain that would not heal. Tons of PT and still was not healing. I like the natural route of healing so I tried PRP and got (3) injections to my right shoulder. The injections are given once per week for (3) weeks. For those whom never heard of PRP essentially they draw blood from your arm and spin it in a centrifuge. The healing properties (platelets) are then injected into the problem area. After the last injection, approximately 7 days later, my ITP came back. Now with ITP it is very hard to pinpoint exactly that it was PRP that caused the return of my ITP but coincidentally it’s very hard for me to say that PRP isn’t the primary cause. I wish I had done a platelet count before I got the PRP injections but I did not. But I believe the PRP caused my body to go into overdrive and destroy my platelets. Two weeks ago I was down to 3 platelets. Fortunately now I am in normal range.

So this is my story. I was a proponent of PRP and now I am not. For those whom had ITP as a child, ITP as adult and are in remission, or have low platelets I would do your homework. God bless.

Hi,

my 18 month old son was recently diagnosed with ITP. His platelet count has increased over the last 5 weeks from a count of 3 to a count of 16. We were told initially to keep him out of his usual childcare setting, which is a baby room at a loca nursery for 0-2 year olds. As you can imagine, this can be quite a physical environment with plenty of opportunities for accidents!! 

After his most recent blood test which showed the blood count was still extremely low at 16 we have been advised we should send him back to nursery. We don’t feel comfortable with this as we have read that there is still a severe risk below 20. 

Are we being over the top, or is the healthcare professional being a bit too simplistic - their written advice talks about return to school, but suggests no contact sports until the count is over 50. To me, nursery is basically a contact sport!! 

Any advice would be great!

Thanks

My hematologist treated me with a round of the corticosteroid Dexamethasone in October but my platelet increase was only temporary. It has gone up and down since that time. Co-incidental with the decline starting in January of this year was that my cardiologist switched me from Simvastatin to Rosuvastatin to lower my LDL cholesterol to the 60s. Now I'm wondering if the new statin has adversely affected my platelet count, as there are reports of that occurring. In any case, as my count had dropped from 55,000 to 41,000 and I'm scheduled to have cataract surgery next month, my hematologist recommended a two-day IVIG infusion to try to raise my count. I underwent that treatment this past Thursday and Friday, April 18-19, and will learn the results this coming Friday, April 26. I'll be consulting with my cardiologist tomorrow, April 22. I'm wondering if anyone else in my age group, I'm now 79, has experienced the extremely lower platelet counts that I have after taking these cholesterol lowering medications.