I heard from my insurance company today.

[Barbiebreath]

I was approved for Besremi. ❤️🙏❤️

[Elizka]

Great news! Here is my protocol for the first injection (including some suggestions Hunter gave me):

1. Have a nurse or medical tech from doctors office show you how to do the first injection. My husband and learned a lot and also got instructions on the disposal item to purchase.

2. Start at a low dose. I started at 50mcg and got my HEM's okay instead of the recommended 100mcg.

3. Do something fun after the injection. (My husband and I went out to lunch. )

4. Take the following day off or don't make big plans.

5. See if the speciality pharmacy will ship you your prescription for the second box and going forward. Mine does and it makes it so much easier than going to pick it up.

6. Realize it isn't really a big deal. I had so many doubts and was stressed for the first injection. Sure, its a serious drug, but the research is solid.

7. Establish a mindset: Besremi is going to help your body fight PV.

[hunter5582]

YEAH!! 👍👍

Our friend Elizka summed up some great feedback. The injections are really easy to do. Best thing is to have a nurse show you how and be observed the first time. After that it is a breeze.

The very smart nurse at my hematology office made "fake skin" using a surgical glove stuffed with other gloves to make a simulated roll of skin. Then used syringe with saline to practice. The actual injection was easy. I hung out for 20 minutes then went on my way happy as a bug in a rug.

Happy jabbing!

[EPguy]

Welcome to the "Club of Besremi". Hoping we all see its good benefits.

From your posts I don't see that you've had allele burden (AB) measured. If so, sorry for missing that. With PV odds are very high you have Jak2, but even that is not 100% for sure. You should seek "Next Gen" sequencing where they look for from 50 to 100's of different mutation types beyond the basic ones. (I had 54 which is low these days)

Your Dr may say there is nothing they can do with this info, and it's true AB and mutation types are just barely starting to be actionable. But INF such as Besremi can reduce your AB and tracking that over the months and years is worth knowing. Esp in the future it's very likely this info, and your starting condition, will be medically important.

[Barbiebreath in reply to EPguy]

I am Jak2 positive. That’s all I know. How do I go about Next Gen sequencing? Is that a blood test?

[EPguy in reply to Barbiebreath]

Correct it's available by blood. It's also avail by BMB (marrow biopsy) but not everyone needs or gets BMB. Your Dr, if they are real MPN experts, should have planned the NexGen for you. Otherwise you'll need to get active in your care as Hunter says. Insurance can be an issue if your Dr is not on board.

As a minimum they should tell you your Jak2 AB level. Some members here on INF (and the clinical trials) have seen large reductions in this AB level.

[Meatloaf9 in reply to EPguy]

Hey EPguy, you just gave a very good reason for having a Next Gen sequencing and knowing your AB. Both these will likely become very important in the future for treatment decisions and judging your current treatment. I just read an article about TET2 and DNMT3A and their connection to myocardial infarction. My DNMT3A mutation was found on one of these next gen tests. I would attach the file with the article here but don't know how to do it.

[EPguy in reply to Meatloaf9]

You may have also seen this post that has some further details on TET and DMT3A, but the report it's from is not easy reading:

healthunlocked.com/mpnvoice...

[GardNerd]

This is great news, and I wish you all the best! May I ask which insurer you have? I’m having a hard time getting mine to approve it, and I’m in need of the benefit of potentially stopping disease progression. Aren’t we all?

[Barbiebreath in reply to GardNerd]

I have a BCBS. I don’t have coverage through work so it’s one I found online. I’m shocked that they are paying because it’s mostly catastrophic. My MPN team were going to notify the pharmaceutical company for one of there quick start programs. They help depending on your income and I believe they said if you make less than 100k a year. This has all happened very quickly. I’m not sure if it’s all being covered by BCBS or a combination. I’ll let you know.

[nightshadow]

Congratulations!

[Barbiebreath]

Thank you everyone. 😀