Pros And Cons Of Doing The IV Thing That Removes Platelets. How Does This Work? How Often? How Long Does It Take Each Time? Does It Hurt? | myMPNteam

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Pros And Cons Of Doing The IV Thing That Removes Platelets. How Does This Work? How Often? How Long Does It Take Each Time? Does It Hurt?
A myMPNteam Member asked a question 💭

My Hema said I could do it in their office. I’ve heard it can cause iron deficiency, anemia, loss of nutrients.

But it’s gotta be less toxic than an Rx, right? Seems all options have pros and cons? Some better and worse than others.
Thought this could be a good place to start for if and when I’m told baby aspirin isn’t enough.

New to all this mess and just started baby aspirin Jan. 31 but don’t even want to be on that.

posted February 5 (edited)
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A myMPNteam Member

My personal experience is that Pegasys Interferon works very well and few have any side effects.

posted February 7
A myMPNteam Member

Plateletpheresis is rarely used to treat thrombocytosis. It would temporarily reduce the number of platelets but the overproduction of platelets would continue unabated. It is similar to a whole blood donation but the platelets are separated out and other blood components are returned to the patient. It can be done with a single line, like a whole blood donation.

Therapeutic phlebotomy of whole blood is used to treat erythrocytosis. It does cause iron deficiency since it is removing the red blood cells where the iron is found.

While plateletpheresis might be used occasionally, it is not a part of routine care for ET. Your MPN care team can do the best job of explaining each of your treatment options on a case specific basis.

posted February 6
A myMPNteam Member

After a few errors, and scarring, with venesections courtesy of an ancient GP, I now use an emla patch to numb the area of my vein where the needle will be inserted. Don’t feel a thing. Plus, I now have rare venesections done in the oncology ward of my private hospital, they really know what they’re doing!!!

posted 21 hours ago
A myMPNteam Member

It is certainly worth asking about coverage for your treatment options. Given that you have ruled our hydroxyurea, Pegasys is the most likely option to get approved. Besremi and Jakafi are still in clinical trial for ET and very expensive. A few people were able to get off-label approval for these meds for ET, but is it uncommon,

The underlying issue is cost. Monthly cost for hydroxyurea = $25, Pegasys = $4,200, Jakafi = $14,300, Beremi = $15,000. It is much easier to get Pegasys approved than Besremi or Jakafi, particularly for ET. It does help that Pegasys is in the NCCN guidelines as a preferred ET treatment option.

Bomedemstat is in a different class of MPN treatment options. It is a LSD1-inhibitor (Lysine-specific demethylase-1 = LSD1). It is a promising option that is in clinical trial for ET.

Cytoreductive medications can help people with MPN microvascular issues like migraine. Some also benefit from more aggressive blood thinning options. Sometimes it is as simple as taking low dose aspirin twice/day. That would be an issue to discuss with a MPN Specialist. Unfortunately, many docs are not familiar with treating migraine in the context of a MPN.

I experience a different type pf migraine, acephalgic visual migraine as the result of a brain surgery I had several years ago. I found a CGRP inhibitor (Ubrelvy) to be very effective in managing this type of migraine. While CGRP inhibitors are safe and effective, they are outside of the scope of many doctors. I consult with a neurologist/migraine specialist on this issue.

Wishing you all the best.
posted 2 days ago
A myMPNteam Member

There is huge variance in how insurance plans and Medicare Part D plans arrange the copays. Even internally to an insurance company like BC/BS , there is wide variance between plans. You would need to call your insurance plan to find out what copay you would be responsible for once a medication is approved. I think you can assume Pegasys, Besremi, and Jakafi would be higher tier medications with a higher copay. The better plans all have a cap on monthly out-of-pocket copays for any medication. The better plans also have an annual cap on out-of-pocket expenses.

The Medicare Part D plan I am enrolled in is managed by Cigna and sponsored by my former employer (a county government that I retired from on full benefits). This plan is structured to have maximum out-of-pocket caps on both a monthly basis per medication ($100) and on a yearly basis ($2,000) for all medications. The good news for people on Medicare Part D plans is that there will be a $2,000 yearly cap for everyone on all plans in 2025.

If you reach the point where you need to use cytoreduction for ET, then you will need to make a choice about which agent to use. The current NCCN guidelines include hydroxyurea and Pegasys as preferred choices for ET. Note that neither of these medications has a FDA indication for any MPN. They are both used off -label, but are in common use. Besremi and Jakafi have an indication for PV but not for ET. Both of these medications are in clinical trial for ET. Hopefully, they will receive FDA approval for ET in due time.

It is correct that there is data about Besremi/interferon and Jakafi reducing the JAK2 allele burden (Variant Allele Frequency). There is evidence that Besremi has the benefit of improved progression free survival for people with PV. While there is still debate about the role of allele burden in MPN status, the emerging consensus is that VAF does matter and is a valid biomarker for MPN status and treatment. In my own case, Treatment with the interferons (Pegasys/Besremi) has reduced the JAK2 VAF from 38% to 10%. The IFNs have kept the erythrocytosis and thrombocytosis well controlled on a low dose (175mcg Besremi). My quality of life has significantly improved compared to what I experienced when using hydroxyurea and phlebotomies.

By the time you need cytoreduction, you may find there are even more options. Bomedemstat is in clinical trial for ET and looks promising. There are other agents in research as well.

Wishing you all the best.

posted 5 days ago (edited)

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