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.
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.
I have been on nplate for many years. Probably close to 8 years. Promacta and other treatments don't work. I just found out 2 days ago that I have dvt in my right leg. Was told by my hemotologist that we would skip my nplate and start blood thinners right away. Kind of scared that I'm on blood thinners. But good to know others have had this problem. I've been losing sleep over thinking to much about the blood thinners.
So sorry to hear of your blood clot issue. I’ve been struggling with low platelets in addition to blood clots for several years I have been on blood thinners for seven years and promacta for several months. It can be managed but hopefully you don’t need to stay on them forever like I do. If my platelets fall under 50 they take me off blood thinner and if they rise above 100 they reduce my promacta. Best wishes for a speedy recovery blood clots are very painful.
Thank you Denise for your response! Yes they are painful. My question since this is my first one, did you ever have to get transfusions because of the blood thinners? Or do the platelets not drop to bad?
Hello! Hoping you DVT recovers quickly! I have been on blood thinners and eltrombopag for years. The blood thinners have never seemed to affect my platelets. If I go below 30 platelets, I come off the thinner for a few days until we get my count back up. My doctor had a lot of reassuring to do in the beginning and explained it as different molecular levels and so it is safe. So far, so good! I easily handle low platelets but never ever want to endure another PE.
Good luck to you for a speedy recovery!
Thank you for your response! I hope my platelets don't go down. Haven't had my nplate shot in over 10 days, so I'm hoping they won't be bad. Thank you guys for helping redirect my mind lol it's been very scary finding out.
I have not needed a transfusion. Been close but thankfully levels went up. I have been in the hospital a few times with internal bleeding which happened when they didn’t take me off blood thinners and my platelets got too low. Sounds like your dr is on top of things. This whole process is very stressful I don’t blame you for being scared. But I have lived through a blood clot in my portal vein and a few in my legs. I trust you are going to be ok!! Just know there’s others who do understand. Feel free to message me anytime. if you would like email@example.com
I know the Promacta rx pamphlet discusses an adverse effect of thromboembolic events (clotting events). Because of that and in my case, my doctor looks for a target platelet number of 50,000. When I exceed 50,000 (went up to 75,000 on 50 mg), my doctor reduces. I'm currently on 4 days at 50 mg and 3 days at 25 mg. I range from around 42,000-56,000. Low stable. I would be concerned if the platelet number got too high as a clotting event would be more likely (from what I understand). I don't know if N-Plate is similar. Clotting events are scary. I wish you the best!
The itp did not cause the portal vein blood clot. I had a splenectomy and they super dosed me with steroids to get my platelets up for surgery. Because I also have a clotting disorder I should have been placed on blood thinners after surgery. I have learned a lot in the last few years. I now take 75 mg promacta daily and pradaxa is my daily blood thinner. When my counts drop they increase promacta and take me off blood thinners so I don’t get a clot.
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