Immune Thrombocytopenia Purpura (ITP): What helps?

Hi Emma,
The name Eltrombobag fills me with dread...My Husband was put on this four years ago, the first weekend he was on it, he had a stroke, but he did have un-diagnosed high blood pressure.
He continued to take it (altered strength) for a few years it was fine and then his levels began to drop so was put onto avatrombog, he finds it very difficult to get any for of stability with this med, he still takes it, but weekly blood test and ranges from 1 to 500 within one week isn't ideal.
His Specialist is going to try the Ref????(forgot the name) infusion in the coming months, so fingers crossed.

I was taking Promacta which was slowly bringing platelets up but doc took me off because my liver numbers were very elevated. I just started taking Doptelet yesterday so have nothing to report as far as how it’s working.

I have not yet, but will be starting Promacta next week.

I believe members like @vishu1009 @leilab1 @yrag @agfromtheuk @genohappydays can share their experiences with thrombopoietin receptor agonists (TPO-RAs) such as eltrombopag (Promacta), romiplostim (Nplate) and/or avatrombopag (Doptelet).

Emma, have you started taking a TPO?

Has anyone with ITP tried a type of TPO agonist medication? And if so what was your experience like? Was it helpful? Any side effects?

Thanks for contacting me. I am concerned about my platelets. Right now my platelets are only in the 50 range.

I was commenting on my lymphocytes. The Dr said my lymphocytes were not low enough to be a concern. He said that because I was concerned about them and asked him about it.

@et09, I'm glad that your platelets level is not a cause for concern. It sounds like you remained concerned however. How are you doing?

Hi @emmalapp, results with IVIG may vary from patient to patient. As @donnasouthwick, the treatment didn't work for her son. According to this article https://www.pdsa.org/treatments/conventional/immunoglobulins.html
"IVIG temporarily increases the platelet count in about 80 percent of ITP patients.2 The duration of the response varies and the treatment can be repeated when the platelet count drops.

IVIg does not work very well for those ITP patients who have anti-GPIbalpha antibodies on their platelets."

You might be interested in this related discussion about IVIG and treatment as blood disorders
- Most effective way to administer IVIG
https://connect.mayoclinic.org/discussion/most-effective-way-to-administer-ivig/
Have you decided to try IVIG?

This is a follow-up to my first post here about my 80 year old husband. He is in a "watchful waiting" stage for possible MDS (Myelodysplastic Syndrome) and continues to suffer with terrible itching from little bumps that erupt especially where there is some rubbing (e.g., elbows, backside and behind legs from rare periods of sitting watching TV or driving the car), etc. Every 3 months he has gotten a battery of tests from a hematologist/oncologist in a reputable cancer center (rated #24 in comparison to other US cancer centers).
Last week's blood tests revealed: Platelets normal but right at the borderline. His RBC, hemaglobin and hematocrit are slightly below normal and his RDW is high.
He also consults with a dermatologist (he's actually seen 4 dermatologists) and the latest one finally talked directly to the hematologist but we still have no answers about the itching --- other than continuing to apply steroid creams. The itching is the worst part in this watchful waiting. The dermatologist ordered an incredible number of blood and urine tests from the routine ones to hepatitis, rheumatoid arthritis, TB, etc. and all were negative.
In November, my husband will meet with the hematologist/oncologist who may give him direction on getting CAT scans for chest and abdomen. The hematologist/oncologist still does not see the need to get a bone marrow test yet. My husband will also meet with the last dermatologist to talk about the extensive tests he prescribed and possible next steps.
My husband remains very active politically and physically. He doesn't look or sound his 80 years but the itching is terrible.
One more thing: He has gone from being an avid pro-vaxer for Covid vaccines for himself and others to now questioning if he should get the next booster or not. All his problems started after getting his second Pfizer which may be a concidence or possibly not.
It would be helpful to hear from anyone in a similar situation while we count our blessings that my husband remains in a watchful waiting stage. I read all the posts about skin but I'd also welcome any advice about his itching/eczema that continues to drive him crazy.
Thank you!

My son has had many of them. They didn’t necessarily work for him, but there were other kids in the hemoc department that it worked really well for. So for the kids there’s an infusion room and they come in and put the IV in and then they just start running the IVIG I think he was playing battleship when it started lol and then he got what’s called the Rigers. He started to shake and feel really uncomfortable, nausea, headache, just really crappy and that only meant they needed to slow the infusion down, that it was going in too fast. Once they slowed down the infusion, it was much better. Other than that, and him not liking getting poked, the infusions were not horrible at all for him, they just didn’t work. Ultimately he had a spleen removed and that has kept him in a permanent remission for 30 years now.