Hi All, I have been part of this great group for the last year or so, and although I wish none of us were here, I’m glad to have found an online community that shares the same concerns as myself. I’m 37 years old now and I was diagnosed with ET in 2009 when I was 24, so it was kind of a shock, but honestly I did not know a lot about the decease and I was told my life expectancy was close to normal so I really did not make a big issue of it and continue living as a regular young male, working out and enjoying life as much as I could. However looks like my initial diagnosis was incorrect and it was really PV instead.
It was not until September 2021 that I started to have symptoms related to the condition. Symptoms included, dizziness, nauseas tiredness, mildly enlarged spleen (14.5), pain in the left side of my back, normal WBC, but ~800 PLT and 17.5Hb, 52HTC, fibrosis grade 1, elevated liver enzymes. I spent 13 years without treatment, but looks like the inactivity due to Covid and being lockdown for a whole year took a tool on me and the decease caught up with me. Then I decided to seek for help and after several attempts with HU ( very bad side effects, diarrhea, stomachache ) and Jakafi ( high liver enzymes ) I decided to take a different route and join a phase 2 clinical trial for bomedemstat on PV.
It took me some time to post since I did not want to give any sort of hope before seeing real results, however after almost 5 month taking bomedemstat I can tell you all of my symptoms have improved considerably, not only clinically in terms of dizziness and nauseas, but also the spleen size reduced from 14.5cm to 12cm and the pain has improved a lot. My counts are normal, first time in 13 years, 46HTC, 14.6HB and 136 PLT a little bit low (140 - 400 normal range) but nothing major, liver enzymes are slowly normalizing and looks like the fibrosis has not advanced and on the contrary might be improving. So finger cross this could be a potential solution for some of us. I know there are a couple of drugs under investigation currently, and this is only one of the many, but I wanted to share my experience with you all and bring some hope to this community.
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jafar09
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Hi jafar09This is an excellent result for you, and very good news for all of us that a drug has worked so well. I have heard very little about bomedemstat but it is so good to read your story and it certainly does inspire hope. Thank you for posting.
I am a lot older than you at 70 but also have PV and grade 1 fibrosis. I take Rux which manages my symptoms, mainly the itch has gone which is a huge relief but it doesn't manage the bloods so good.
Great news. I think Bomed is the farthest along of the most promising all-new agents. It is known esp for its PLT reduction so your lower PLT levels may be consistent with that while still taking enough to control the other blood counts.
Understand on the liver risk with IFN, it does need close attention. Also IFN can add plenty of its own symptoms, I know this directly. Your large symptom reductions are a big deal and wonderful.
Is the trial checking your allele? (Jak2 VAF%)
One member here did not work out on Bomed, but the trial updates on average look good. All part of our unpredictable different responses to all therapies.
Hi EPGuy, trial is checking allele burden as well. In my case I have not seen a reduction, but a slight increase. Still too early to say honestly. Also in terms of MF, looks like it will make headway, some cases have seen improvement in transfusion dependency, others MF score reduction. Looks promising overall. However, adapting to the pill takes time like any other drug and results cannot be seen until the right dosage is found.
Thank you for sharing your experience with the LSD-1 inhibitor, sounds very promising and gives hope that another treatment option may be available in the future. Wishing you all the best.
That is such wonderful news! Especially about your liver enzymes. I know you were worried about that. I so wish Bomedemstat had worked for me. So easy to pop that pill verses the injection stuff. What can I say? It seems if there is a rare, weird side effect to be found, my body will find it. 🙄I know we will be hearing a lot about Bomedemstat very soon.
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