AFIB, Besremi refused by insurance, and more

[Elizka]

On December 1, I felt breathless, climbing

stairs quickly and caring for my husband (who had open heart surgery in November).

I felt like my heart was beating fast, and I was winded. But it got worse: My apple watch said I was in AFIB.

AFIB??? I have no heart issues. I went to the emergency room and got back into an NSR in about 30 minutes with a dose of Flecainide.

The following week, I went in for the stress test, and though I wasn't aerobically challenged during the first few minutes on the treadmill ( I do cardio 2x a week and walk a lot), my heart went from 94 to 180 or higher in a matter of minutes. AFIB! Stayed at 110 though I was sitting down. I was admitted, and given an oral dose of Flecainide again, blood thinners, and Metoprolol.

At first cardio doc thought it might be an issue due to Besremi, but they ruled that out as the incidence of arrhythmias in the Besremi trials was less than 1%.

I don't have any other risk factors except what they landed on--age. My heart is structurally sound, and when I wore a halter for 48 hours, no AFIB or arrhythmias were detected, but I had 93 PACs (premature atrial contractions).

I have another Echocardiogram, a CT Calcium Cardiology, and a coronary angiogram scheduled next week.

Now, I'm on Flecaincide and a blood thinner (big risk with PV and AFIB for stroke or clots) and meeting with an electrophysiology doctor on February 1 to discuss an ablation or other options.

This new DX has really upset me. I was doing with PV. I feel like I'm at my limit. I adjusted to life with PV, and do not want another disease to deal with.

On top of all that fun stuff, my insurance took Besremi off their formulary even though they renewed the prescription for another year last month. My medical team and cancer pharmacy are trying to see what they can do.

I also have to change my health insurance in March to Medicare with supplemental insurance with CalPERS. Though I'm not retiring, it is required since my husband did retire from teaching this year.

I hope one of Medicare plans Calpers offers does cover Besremi. I can't imagine not

using it.

[hunter5582]

Sounds like the old Chinese curse "May you have an interesting life." Wouldn't you love to be boring! That is one of my goal. i want to be "The World's Most Boring Patient." Sadly, my care team has informed this that this is not an achievable goal. Sigh.

Is the current insurance company going to honor the prior approval since it was given for 1 year? One would think they would. If not, then time for the next step.

With many insurance programs, non-formulary medication can be approved. There is a process for this that has to be followed. It is based on a set of plan rules that can be different for each insurance plan. Successfully appealing the denial is based on understanding the rules for approval. Insurance companies do not automatically explain all of this. research is often needed. And a lot persistence. It took me 14 hours of calls/research and filing a Medicare Grievance when I was denied before Besremi was on my formulary. Along the way, I learned about the difference between a Medical Services Review and an Administrative Review. These are two different types of appeal that go to two different departments.

Besremi is the second drug like this where I had to file my own appeal after my providers did not succeed. Fortunately, Besremi is now on my formulary. My care team successfully appealed the first level of denial. This time I did not have to do anything. What a relief.

Wishing you successful authorization moving forward.

[Mazcd Partner MPNVoice]

hello Elizka, I am so sorry to hear this, I do hope that you get your insurance sorted, and wish you well for the tests next week. Maz x

[Anag]

I’m so sorry for all that you’re going through and pray that your husband will recover well.

Although my heart is apparently strong as a horse’sand I have NO plaque anywhere, Anagrelide was causing heart pounding for 5,5 years now. I tried doing a stress test and collapsed at 1,5 minutes. The doctors said: doesn’t matter, Healthy. Two years before that (before diagnosis) I extensive Zumba and i was super well.

I’m almost weaned off of Anagrelide now and am taking Besremi. My BP stabilized completely T 113/68!! Pulse at 65 (im 57). Besremi seems ok for me. No problems till now except for a bit of brain fog the first 3 days after the injection. Now we know that the Anagrelide was also causing the brain fog, heart pounding, a rollercoaster BP, constipation, general weakness and shortness of breath.

the facts that your doctor does not see heart problems with Besremi possible in your case is a unacceptable! Hello?? One percent is a lot! It’s not one in 10,000! A doctor cannot just rule that out! Doctors making false decisions like that cost me my ET diagnosis coming 7 years late and cost me 6 TIA with unidentified cause, even at 758 PLT!! For you, Besremi may be the cause, it may not be the cause. It may be part of the cause. ?

You’re going through a lot! Give yourself a break. Take some passaflora (passion flower drops) or sniff on a little bottle of a good lavender essential oil, take baths, breath, etc anything to calm you down so you can accept the changes in your life. Can any of this be panic attacks? They don’t last very long. About 15 min accompanied by great fear. I was told that I had these, but my attacks were 1-1.5 hours. Again, I was constantly falsely diagnosed. I was even told it can’t be Anagrelide.

I’ve said in the chats before that after my Pfizer vaccine gave me vein problems in my legs, massive brain, weakness such that I couldn’t lift the pan to make an egg! Brain fog and forgetfulness. My BP ran wild. the problem escalated, heart pounding at 180-200 bpm for 70 minutes!! From all the tricks I know nothing could slow it down! I collapsed at the supermarket 4x while packing groceries. My heart was pounding like crazy. BP 180. I finally did five sessions of bio resonance therapy, which rod me of the spike proteins. I got my life back. hyperbaric, oxygen chamber therapy strengthened me.

I have many friends, neighbors etc that had dangerous adverse reactions to the vaccine (2 strokes, vein problems, 2 heart problems-myocardia, brother Bell’s palsy and one death, my friend’s brother-in-law (a health 60 yr old farmer)

My best friend, whose friend peer reviewed Pfizer advocated the vaccine, the reason I decided to take it. After the 4th jab, she has a heart problem. Her 25 yr old son after his 3rd. 😑 Check that out for yourself if that’s a possibility for you.

One more thing: The VN is responsible for most of our internal organs; that they run properly. It sends them signals. Anagrelide was blocking the signals from my VN to my heart and my heart would rev up and not want to calm down. when I took more Anagrelide the heart symptoms went up, when I reduced the Anagrelide, the opposite. Taking acetyl l-carnatine helped!!

Eventually, my doctor insisted to the insurance (I’m in Austria) to pay for the Anagrelide, although it’s not in the program for ET yet. This was possible because HU caused terrible neurological side effects and Besremi was a solution.

I wrote a book here. Sorry hope to have helped.

Anag

[clubdino in reply to Anag]

Yes! Finally people are speaking up about this. There are so many people developing heart problems after the vaccine. My grandfather was newly diagnosed with afib after the vaccine. The vaccine is known for causing many nasty problems and it's all being hidden by the governments. Another family member developed ET directly after the vaccine. (We are not blood related.) If you want to know the truth about what's really going on check out covidvaccineinjuries.com. or

twitter.com/Storiesofinjury...

[Anag in reply to clubdino]

I wrote a mistake above. My Dr. Convinced the insurance to pay my Besremi.

the latest I read was that there are 178x more serious adverse reactions to the Covid vaccine than to the flu vaccine, which I’ve never gotten and will never get. I don’t even get colds anymore. Just one in the last 5 years. The autoimmune paleo diet and immune system modulation do wonders. Also absolute reduction of environmental toxins! 🙂

[EssThro]

Hi, Elizka.

It sounds like a lot to deal with, and I wish you well.

Some quick thoughts on Medicare: Medicare.gov has a page where you can screen the Part D (prescription drug) insurance plans. You can enter the medications you are taking or expect to take and get a cost comparison for the plans available in your area. It is a great tool to get started with.

For the supplement, I started a few years ago and took Plan F which covers the full 20% copay plus an additional percentage beyond the Medicare approved amount for each service. It has been a Godsend for me and my various issues. Flan F is no longer available, but I believe Plan G is, and that seems to be just as good. The high-deductible Plan F may also still be available. Unfortunately, I am not aware of a good site to compare costs among the various providers of these supplements. Remember though that the difference among the providers is just the premium. The provisions of Plan G, for example, are the same from every provider. In some areas there are financial planning companies that can help you select a supplement provider, FREE of any cost to you.

Good luck to you!

[Elizka]

Thank you. Because we are with Calpers, I have to choose one of their supplemental medicare options. There is no plan F or G. It is all combined.