Thank you for all the posts of your journey with PV as they are really helpful for me. I was diagnosed with PV June 2022. My HCT and platelets have been high for at least 6 years, and confirmation of PV was done with the JAK2 gene testing positive (thankful for the doctor at an ER testing for it).
So far, I have taken a daily aspirin and had a phlebotomy monthly. My HCT hovers around 48 and my platelets have been going up. The phlebotomy is not a solution and I have been told this by the oncologist; it's just a minor fix. The oncologist has prescribed me 50 mg of Besremi, at my request. I am 55 and did not want to do HU for years. She agreed that I am too young to start on this and should hold off if possible.
I will take the first does to the infusion center next week for someone to show me how to inject it. I do have some anxiety around self-injecting, and fear of not mastering how to get the right dosage from the syringe (of 500 pre-dosed mgs).
How is it doing the self-injection? Is there any reason I should have my husband come along to learn how to inject the med? What can I expect in terms of side effects after starting on it?
Other than that, I have felt pretty good other than always feeling on edge about a possible blood clot, heart attack or stroke due to PV. I appreciate reading all your stories of PV.
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MrsBerri
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The self-injections are very easy to do. Truly no big deal.
I learned by injecting into fake skin. The nurse stuffed a surgical glove with other gloves to create a fake skin rill. I injected saline into the fake skin roll to practice then did the real thing. I stayed for about 20 minutes just in case of a very rare instant adverse reaction. I have never had a short-term reaction to the Besremi injections.
Starting at 50mcg you may well have no adverse effects but expect to increase the dose for efficacy. Some of us increase dose in 25mcg increments to give our bodies time to adjust.
Do not worry too much about getting the dose exactly right. It is very easy to get the dose very close providing you have good light. It makes my skin crawl to waste 350mcg of a drug that costs $7,500 per 500mcg, but that is just how it goes.
I have been very successful on Besremi. Very few adverse effects and my allele burden has reduced from 38% to 9% in 18 months. My liver function tests are currently up but not so high as to be an immediate concern. Other adverse effects have been minimal and well worth the benefit.
good luck on the Besremi . It isn’t difficult to self inject and you will get better each time you do it. I find injecting straight instead of on an angle better for me. Good luck ! Let us know how you do !
I started Besremi in June and had the same anxiety about self-injection. My doctor did the first injection, and I’ve been doing it since. The needle is so skinny that I hardly feel it going in. And it’s very short, so that makes it pretty easy, too. If I were you, I’d take your spouse to your first injection. It’s not that you’ll need him to do anything, but I’ve found that having the moral support and engagement of my spouse is reassuring. On my shot days, I give her a 30 minute heads-up that it’s almost time for my shot, and she just hangs out with me. Not necessary, but it’s nice.
Before I did my first shot, I watched the video on the manufacturer’s website and read the materials. Okay, I watched the vide like five times! But all that helped me get comfortable.
I started at 100 mcg and went up by 50 mcg every two weeks after that. That’s more aggressive than most of what you’ll see here, but I was tolerating it well and the doctor said it would be easier to get to my max and then back it off from there based on results.
Side effects: I’ve had good luck here, generally. At the beginning, I had a little bit of nausea but not a big deal. I’m super paranoid about stomach illness, so I asked the Dr to prescribe some Zofran. I take it as needed, which is very infrequently. I had a minor rash last week which is responding well to moisturizer (and maybe isn’t even related). I’m pretty sure I’ve experienced some mood changes from the drug, which is one of the highlighted side effects. These have been manageable but noticeable. I’ve always been high energy and generally cheerful, and I feel a little more low energy and irritable since being on the drug. I’m hoping this gets better if we decrease the dose. But I feel like I can live with that if this drug can control my counts and possibly stop disease progression. I’m willing to put up with quite a bit for that outcome.
I’m no doctor, but it seems to me you’re on a good path. You’re pretty young and will be starting Besremi relatively early in the course of your PV. Given that the drug has been shown to slow or stop disease progression in some people, it seems to me you’re starting this drug at a good time. I wish you the best of luck and the ability to tolerate the dose you need to control your blood counts!
You've have gotten some great advice. It took me awhile to adjust to taking a serious medication such as Besremi, but I'm so glad I did start it.
I had my husband come to the appointment to learn how to do the injection. Frankly, he does a great job and I like not doing it myself.
I recommend starting at a low dose. I did 50mg and slowly worked up to 165ish.
I was so concerned I would have side effects I got the first shot on a Friday assuming I'd be sick all weekend. I woke up fine Saturday morning, and other than an uptick in migraines, I haven't had any side effects since starting in Feb of this year. I'm currently at 150mg.
Good luck with Besremi! It has been 11 months for me since I started Besremi at 100 mcg and and it is at 150 mcg for 5 months now. The results were excellent as shown in my CBC, CMP, and iron/ferritin testing. Side effects have been minimal. Happy Holidays and God bless us all!
Thank you for posting. Like you I will start Besremi next week and I’m not looking forward to it. I was diagnosed with PV JAK2 positive in August 2021 and have been on 500 hydroxyurea, aspirin & phlebotomies since then. Hearing other’s experiences is very helpful and I didn’t know there was a video available, I will definitely be looking for that before next week! I check this forum several times a week and it has been tremendously helpful in this journey. Thank you all and Happy Holidays!
You're right about the phlb, current thinking is to look for other options long term.
I was my Dr's first Besremi patient. Because of rules they are not allowed to do it in the office, but several staff came in just to watch the me do the new thing. I was clueless, I didn't even know the alcohol pads don't peel apart.
If you're doing the official dosing method, you will press the plunger till it's at the right place. A lot goes to waste. Then inject and just press till it stops.
Good idea to have hubby watch and learn.
I felt some of the expected light flu like symptoms at the start. I switched from HU and now at 140 dose. I sometimes get a small blood spot at the site, but it goes away in seconds and nothing else is there. I always look away when I get a regular shot but somehow I'm ok doing this one. One difference is the needle is really small and painless. But I have encountered a couple dull ones from the box, so I use ones I get at my Dr's office.
Like Hunter I have had a reduction in mutation, but from lower levels. Wishing you good results on the new medication.
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