I am new to this forum and have enjoyed the informative comments by various members. I am a 71 year old female in the States diagnosed with PV in 2018. My journey started with a trip to the ER for atrial fibrillation. In 2007 I had a cardiac ablation for AF and had not had an incident for 11 years, so when it started I knew something was really wrong . Blood tests revealed very high hematocrit, etc. I was immediately put on blood thinners and given the PV diagnosis. The hematologist wanted me to start Hydrea, but because of side effects I declined and started phlebotomies only. I am lucky to live near a major academic center where I started visiting a MPN specialist and in 2022 she wanted me to start Besremi. Being the stubborn person I am, I declined again. It took a BMB done this year to reveal a very high allele burden(95%) and co-mutation(Jak2 and TET2) to convince me to start the medication. I have been on it for a little over a month(starting at 50mcg) and now have recently titrated to 100mcg. I do need a phlebotomy and my platelets are still high, but I hope the medication will work over time. No side effects so far too! Hope to hear from members who are benefiting from Besremi, and wish all strength and faith in living with these diseases.
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Pogm
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Welcome to the Besremi club. I have been on Besremi for 17 months, and have not had any side effects. ( I also refused Hydrea when it was suggested at age 60.) I started Besremi at 50mcg, and very slowly titrated up to 150, then 180, but my wbc's have gotten too low so I'm back to 150. It took awhile for my HCT to drop and I was also getting phlebotomies until maybe 6 months ago. Others have also had their HCT's drop slowly so be patient. My allele has dropped down to 32%. My platelets fell in line pretty quickly, and other than my WBC's my CBC looks "normal" on Besremi. I also live next to a major academic center and have great care. I'm know I'm very lucky.
Also, I get my allele burden checked every 4 months or so. I like to see it moving, even if a little in the right direction.
Thanks Elizka, your comments give me hope! After waiting so long to try any medication, I guess I wanted things to change overnight! I will ask about having my allele burden checked every so often.
In December of last year, I felt out of breath and checked my Apple watch and found out I was in AFIB. So strange as I had done a Peleton ride with my coach earlier in the day and felt fine. No cardiac issues prior to that day. I was put on Flecainide and Eliquis and advised to consider an ablation. I had 3 AFIB episodes (that I know of), but I went ahead and got an ablation, I'm off Flecainide but will take Eliquis indefintely.
It is known that MPN's are a risk factor for heart issues, but I was good about monitoring my heart health with stress tests, APOB, calcium score, etc. Doctor said it was not MPN that was the cause, as my blood counts are controlled, but my age and the fact I'm a woman. Two things I can't do anything about!
I have been on Besremi 6 months and it has been great! I just went to MD Anderson yesterday and everything is going well. I used to see Dr V, but he sadly left. However, he was of the philosophy of going slow. I am on 175mcg and Dr Marasovsa told me to just go to 200mcg since I had phlebotomy in May and my HCT was 43 yesterday. It was funny yesterday because last time I was there my platelets were 1.6 million. So during my visit she had all the numbers but that one. Lab ran it like 3xs because they didn’t think it was real!! My platelets are now 573, so a little ways to go, but amazingly improved! I was so happy! Wbcs are normal. Doctor told me most of her patients really level out at 250-300. And she said the 300mcg is usually the once monthly dose. She was very pleased and so am I. I did have to start thyroid medication as a result of Besremi, but I felt that was a small price to pay for what I can gain. I am on cloud nine after yesterday. This medicine is working!! And Dr V told me it can take a whole year to get the right dosage so I am super pleased it is seemingly like we are going to reach our goal even faster. I would tell you be patient. Your doctor may have a different way of doing this medication. But my local doctor and MD Anderson doctor are of the take it slow approach increase med every 4-6 weeks pending labs. I do see myself at the 250mcg dosage likely, but I don’t want to take more than I have to either. Hope this helps!!
Hello and welcome to the forum. Glad you found your way here.
I started on Pegasys before Besremi was approved then switched to Besremi when it became available. I took the PEG for about 6 months then switched. It only took a few months at 45mcg PEG to achieve hematologic response. After about 18 months total on low doses of the IFNs, my JAK2 allele burden dropped from 38% to 9%.
My dose of Besremi has gradually increased to 150mcg. Side effects have been minimal, mild lymphopenia, borderline neutropenia, mild itching/rashes that are controlled with daily Zyrtec. My liver function tests did elevate to 3X upper limit of normal at one point. I take a daily dose of Milk Thistle Extract to support liver function. My LFTs have returned to normal.
On the whole I am very pleased with my response to Besremi. It is more effective and much easier to tolerate then hydroxyurea. I also have a non-driver mutation (NF1) that puts me at increased risk for progression to AML. While it is still in some debate, I believe that a reduction in allele burden is a valid marker of treatment success that does indicate a reduced risk of disease progression.
Hi.. I started Besremi 2 months ago at 100 mcg after being on Hydrox for a couple of months along with monthly phlebotomy. Am 74 and latest BMB confirmed progression to PV with additional IDH1 mutation. No side effects thus far and haven’t had a phlebotomy for 6 weeks. Everyone is different in how they react. I hope your process works well for you.
So far I have no liver or thyroid issues. I am getting a complete CBC, liver panel and metabolic panel done every 2 weeks so I feel the MPN is really on top of things. My ferritin is low(7) and hoping this will improve over time. The worst symptom I have is itching and antihistamines do not work, other than make me sleepy. I contribute this to the very high allele burden. MPN recommended small dose of antidepressant, Remeron, for itching, yet I do not want to add another medication "to the mix"! Thanks again for everyone's input.
You can see my posts on my Bes experience, worked great till I became one of the super rare that got permanent immune disorder from it (triggered by a flu vax).
One result is anxiety and insomnia, re comment here from member Pogm:
I'm on Remeron for insomnia and anxiety. The lower doses (3-15mg) are esp for sleeping. Strangely higher doses are not effective for sleep. It's working well for me (after trying many others) taken at bedtime and I hope to taper it eventually, but if you don't need help sleeping it there should be better solutions.
Welcome to Besremi, and I hope it goes very well for you. I started Besremi in June 2022 at age 60 (after having been diagnosed 16 years before that). I had been on phlebotomies and aspirin all those years. An updated bone marrow biopsy showed some fibrosis and an allele burden at 88%. The doctor said, “We need to get you on an interferon.”
I’m also going to a university setting and seeing one of the MPN specialists on the list that you’ve probably seen on this site.
My doctor took the approach of quickly moving me up (in 50 mcg increments) to the highest dose I could tolerate, and that ended up being the maximum 500 mcg every two weeks. I went through some mood stuff along the way, but that resolved. I have a minor rash and get sleepy the evening of the injection. Nothing is a big deal at this point, thankfully.
The slowest CBC component to respond was the HCT, so I continued to need a phlebotomy every few months for about 9 months. My platelets are a little below the normal range, so we’re watching that. The good news is that a BMB about one year after I started Besremi showed no increased fibrosity, allele burden down by 9%, and two abnormal karyotypes were completely gone. Another thing that happened is that the post-shower itching all but went away. I’m not sure what to attribute that to.
I believe the Doc may reduce the dose at some point, but I wouldn’t mind if we kept it where it is until my allele burden goes down more (which I’m hoping for).
« Seventeen patients had abnormal baseline karyotype, and 4 were noted to have changes in their chromosomal abnormalities with PEG treatment (supplemental Table 1). One patient with PV and a normal karyotype at baseline developed +8 and +9. Three PV patients, all harboring JAK2V617F, lost part, or all, of their clonal karyotypic abnormalities on treatment, and all 3 achieved a CR at 12 months »
Hello Pogm! Welcome to this big family! I was also diagnosed with TET2/JAK2 mutation like you are. My hem said the additional tet2 mutation is not that bad, at least there is no significant change in the progression to MF or AML. I have been on Brsremi for 3 months at 500mcg and see plt and wbc drop down. My hem suggests drop to 350mcg and continue monitor. Wait to check the AB in 2 months.
greetings, and welcome. I have E.T. Since 2019, tried HU and Bomdemstat, an experimental drug. I began Besremi about 3 months ago and I have to say I have felt more like myself than I have in a long time. The thought of giving myself a shot was a little daunting, but in reality not bad. The med does need to stay at a certain level of refrigeration and I could keep it at appropriate level for an 8 hour trip, but not sure more than that would have worked. Overal, I’m feeling good about this treatment. Everyone’s body differed of course. Namaste
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