Essential Thrombocythemia treatment with Besremi

@mdramsey48 sorry for the late reply as I was travelling in summer. The side effects I had from Besremi include itchy scalp and skin, lower WBC and Hgb. But now it seems both are improving overtime while platelet counts are well within the acceptable range.

just wanted to share a follow-up update. I have triple negative ET. After HU was not doing much good (platelet count >700000), I switched to Besremi, 200mcg every two weeks this February. Besremi has been working effectively for me. Platelet counts started dropping after 2nd dose. My platelet count has been trending down and in the normal range now. Side effects are limited too. Hgb and WBC level was low and this had some negative on my cycling performance. And now it seems being stabilized. I also have itchy scalp and skin on the legs. The two week interval of self administration under the belly skin works well for me too. Besremi seems tackling the underlying allele mutation by reducing it for which this address the issue from the root. With the data trend, there seems a possibility for reducing the dose soon. In general, Besremi has worked for me pretty well considering the struggles I had with HU. I am very grateful. Please let me know if anyone needs any information.

@mdramsey48 sorry for the late reply as I was travelling in summer. The side effects I had from Besremi include itchy scalp and skin, lower WBC and Hgb. But now it seems both are improving overtime while platelet counts are well within the acceptable range.

@sdduan
Can I ask what is TRIPLE NEGATIVE ET?

just wanted to share a follow-up update. I have triple negative ET. After HU was not doing much good (platelet count >700000), I switched to Besremi, 200mcg every two weeks this February. Besremi has been working effectively for me. Platelet counts started dropping after 2nd dose. My platelet count has been trending down and in the normal range now. Side effects are limited too. Hgb and WBC level was low and this had some negative on my cycling performance. And now it seems being stabilized. I also have itchy scalp and skin on the legs. The two week interval of self administration under the belly skin works well for me too. Besremi seems tackling the underlying allele mutation by reducing it for which this address the issue from the root. With the data trend, there seems a possibility for reducing the dose soon. In general, Besremi has worked for me pretty well considering the struggles I had with HU. I am very grateful. Please let me know if anyone needs any information.

I may have missed one side effect. In first a couple of months, I did show lack of interest in a lot of things which I used to be into after I taking Besremi. Now is much improved. I guess it did something on my emotion.

@sdduan Thanks for logging that response. Pegasys had some pretty bad emotional side effects (depression) for older people, so it's good to know that Besremi has much milder psych side effects.

@nohrt4me i am curious, what are you doing for nausea? My daughter is experiencing unbelievable nausea, and she has taken ondansetron and a number of different medications, and nothing seems to help. This nausea is debilitating and painful to watch her be so uncomfortable. She is off medication right now because she is allergic to Besremi, and she is the first person in the history of the world to be allergic to Besremi. With Pegasus, her side effects are even worse. We are at a loss over here. This is a desperate mom.

@nohrt4me i am curious, what are you doing for nausea? My daughter is experiencing unbelievable nausea, and she has taken ondansetron and a number of different medications, and nothing seems to help. This nausea is debilitating and painful to watch her be so uncomfortable. She is off medication right now because she is allergic to Besremi, and she is the first person in the history of the world to be allergic to Besremi. With Pegasus, her side effects are even worse. We are at a loss over here. This is a desperate mom.