TOPIC:

Oh my CamperGuy, a 965 makes me want to hold my head in pain from headache just thinking about it. Thanks for explaining what happened in detail. I hope you can get good results with Doptelet. It is so potent though, it scares me too.

I have ITP and have had 3 DVTs (same calf/leg) over a period of years. I am now on Pradaxa probably for life. My platelets run from 27-90 and bounce around quite a bit. I was told that I have a "prothrombin" mutation, but that it is not Leiden Factor V. Supposedly it's not as concerning as Leiden, but obviously 3 DVTs later, it certainly seems to have a negative effect. Current state with ITP: After treatment with Prednisone and Rituxan totally failed, the next step is to try NPlate. Then this whole Covid thing got going, and I just decided to take a break on new treatments, going in to medical building at this time, etc. I'm asymptomatic from ITP, and not convinced that continuing to run through the various meds is what I want to pursue at this time. I realize that there are risks no matter what I do, but may search out a second opinion as a sanity check. It was interesting to read your comments that ITP and clotting are sometimes found together. So far my regular GP and hemo treat my like I'm some sort of weird unicorn with these comorbidities. I suppose statistically I am, but at least I now know that there are some other weird unicorns in this world too. Good to have company, LOL. Thanks!

I had a blood clot just above my left knee in early February 2021. Was taking Promacta (eltrombopag) 75mg daily. Fortunately, the clot was not deep, so I was put on Xarelta (blood thinner) for 45 days and sent home. My hematologist reduced my Promacta dosage to 50mg daily at that point.

Your letter sounds like it was written by me. Same treatments same reaction from Dr.s. Wondering how your feeling now and if you have had any new treatments?

How often are you getting blood tests? I am on 50 promacta and also pradaxa for blood thinner. If my platelets get too high Dr reduces my promacta I was on 100 mg at one point. I get blood test about every two weeks to make sure. I had also 3 blood clots in my leg and most serious was one in my portal vein. It’s a double whammy to have both blood disorders for sure.

Before the clot, I was getting tested every 4 weeks. Afterwards, my hematologist switched my blood tests to every two weeks since he was reducing my Promacta dosage, and because I was about to go in for my Covid vaccine.