1 Year on Besremi results

[PupsBestFriends]

Just a quick post to show my results of taking Besremi for 1 year. I started at 100mcg and titrated up 50mcg each injection until reaching the max dose of 500mcg which I am still on. Last phlebotomy was 10/25/2022; before that needed monthly.

I have had severe PV symptoms since diagnosis which have remained even with CHR. Besremi side-effects have been tolerable, and have consisted of feeling a little crummy a day or two after injections, slightly increased fatigue at times, and some random arthritic pains.

I did skip one dose entirely in July 2023 due to 10 day episode of intense upper chest, throat, and head pain which I am scheduled for endoscopy to diagnose. HCT was down to 38.0% before missed dose. Overall I am very pleased with Besremi response.

Day of original PV diagnosis (11/08/2021) :

WBC- 12.3, HCT- 61.4%, Platelets- 1433

Just before starting Besremi (8/02/2022):

WBC- 10.0, HCT- 47.3 %, Platelets- 922

After 1 year on Besremi (9/09/2023):

WBC- 4.0, HCT- 41.0 %, Platelets- 331

[hunter5582]

Those appear to be good results. Glad to hear that you are tolerating the maximum dose.

Wishing you all the best on this journey.

[monarch5000]

How did you get your blood counts down so sharply between the day of original PV diagnosis (11/08/2021) and just before starting Besremi (8/02/2022)? By using phlebotomy + Pegasys or phlebotomy + hydroxyurea?

[PupsBestFriends in reply to monarch5000]

I had monthly phlebotomies only.

I did use HU for 26 days starting 11/13/21 and ending 12/9/21. My HCT was still at 58.2% on my last day of HU treatment when I went to the ER for adverse effects and was admitted to the hospital for two days. A month later on 1/6/22 my HCT was 41.3% having only had one more phlebotomy. I believe the hematologist prescribed too high of an HU dose (2000mg daily) which caused my HCT to decrease 20.1% in less than two months.

During this time I began having the severe symptoms I still endure; shortness of breath, dizziness, fatigue, brain fog, chest pain, etc.

[monarch5000 in reply to PupsBestFriends]

I agree 2000 mg is a huge dose! Would have made me sick as well.

[gjh8733]

That’s excellent news! I am close to my first year anniversary too on Besremi with 9 months at 500 ug. No phlebotomy in the last 5 months and hematocrit staying in the 42-44% range. WBC and plaleletd also behaving in the 7-10 range and 200-400 range.

I have a few more AES but it is not clear to me and oncologist are they caused by the disease, besremi, both or something independent. Most frequent are facial flushing, increased facial skin sensitivity, mild headaches, nausea, and joint aches at night. I have been able to treat with NSAIDs -ibuprofen 200mg or alleve. It has meant taking them morning and evening at times although at present am taking about 1/day

[PupsBestFriends in reply to gjh8733]

I also had joint aches while in bed at night for several months when my Besremi dose reached maximum. I have a previous lumbar injury that is problematic and that was usually the most painful area. I took Advil sometimes which helped.

Eventually those episodes disappeared, and the random arthritic pains I referred to above seem to have greatly diminished. I hope your AES resolve or can be managed, since otherwise your numbers are great and it seems to be working very well for you. Best wishes.

[DiveGoddess]

PupsBestFriennds, glad to see improvements. Hopefully more calm days ahead. I am 9 months in but team kept me at 150mcg. Here is to continued success for you!

[KLCTJC]

I am at 6mos. Will see how it is going in 2 weeks. Labs in August were good. Platelets just have a little ways to go and hoping HCT stays stable. At 200mcg, but MD Anderson doc said she wouldn’t be surprised to see me at 250mcg. So glad to hear someone out there is tolerating the highest dose and doing well!!!! Thanks for the post and best of luck!!!!

[PupsBestFriends in reply to KLCTJC]

I'm usually very sensitive to any medication, so I was pleasantly surprised to reach the maximum dose. I definitely don't miss the phlebotomies!

It's great your responding to your dose in a short time; my specialist says it usually takes about 18 months to achieve CHR. I'm sending you good thoughts for your next visit!

[KLCTJC in reply to PupsBestFriends]

To be honest it has been pleasant surprise. Dr V was my doctor and before he left MDA told me it will take a year. And his philosophy was go slow. Only increase once a month for that reason. And he told me he would be happy with platelets under a million. So the fact that my last 250ml phlebotomy was in May, Hct is holding at 43, wbcs normal and platelets have dropped in the 500’s has been a good surprise. Went up another 25mcg which now has me at 200mcg. And I feel really good. Thank you for your good thoughts! Right back at you!!! Thank goodness for Besremi! All the best

[GardNerd]

This is great to see, and I’m glad it’s going well for you! May the positive journey continue!

[Anag]

Absolutely marvelous! I’m ET and on Besremi for 11 months. Only up to 200. That seems to be enough right now. Still taking one and Anagrelide per day. Was at 253 and reduced from 2 Anagrelide to one. Now 501. So happy. Same symptoms as you. Better than the terrible tiredness, heart palpitation/pounding and blood pressure spikes from Anagrelide. Thanks to the researchers for their hard work!

[Wyebird]

AMAZING results long may it continue