Besremi vs hydroxurea

[Teachme85]

new to this community. Diagnosed with JAK2 in 2019 via BMB. Transitioned to PV last year. Have had 4 monthly phlebotomies since. New BMB last month confirmed PV with additional mutation of IDH1. Have been on hydroxurea since March 15 and still needing phlebotomy. Doctor suggesting Pegasus or Besremi. Cost is extremely high - $3000/month. I am considering just staying with hydroxurea until such time that something else pops up medically. Anyone else have a similar situation.

[Mishie14]

I have ET JAK2. Both Hydroxy and anagrelide came with overwhelming side effects. Quality of life was low. My doctor said to try interferon. It’s a different technical approach and is by injection vs pills. So far so good. Platelets slowly moving down again but with zero side effects. Interferon has thus far cost nothing! I was approved by Medicare to be treated at the local hospital infusion center. I go once per week for an injection. Within 3 days prior I must have a blood test. They are checking for liver and kidney enzyme values. The only thing that has come up is directly related to having too many platelets—high potassium in blood samples have been proven to be caused by the lab blood draw technique. I do not have high potassium. I can manage all of this as the hospital is close by and where my care team clinic is as well as the lab for blood draws which I had already been taking weekly. Please have your doctor or medicare advantage provider explore options to get interferon approved. Yes, interferon is expensive but the cost may be covered after all. Good luck and stay safe!

[hunter5582]

We are each different in how we respond to these medications. Some respond well to one but not to the other. I experienced significant toxicity on HU and it was not effective. I also had problems with the adverse effects of phlebotomy-induced iron deficiency. The side effects of these two interventions were worse than the PV symptoms. I switched over to Pegasys then to Besremi when it became available. I pay $100/month for either of these medication on my insurance plan.

Note that Besremi as a new medication is much more expensive than Pegasys. The full retail cost of PEG = $4,200/month, BES = $14,000/month. It sounds like you may have one of the 80/20% plans for your medications. If you find that you cannot afford your medications, there is assistance available. Here are two of the resources.

Pharma Essentia Source pharmaessentiasource.com/hcp/

Pan Foundation panfoundation.org/

[Mirror368]

I have read that people split the doses. If your dose is 45 mcg then you get four doses out of 180 mcg vial.

[ainslie in reply to Mirror368]

yes splitting the dose is very common