I am quite excited that CVS/Caremark had approved of Besremi prescription after the appeals process which the hematologist had submitted - as the original response was a denial where it was mentioned that Besremi was not included in the formulary. I am 64 and still working in the Illinois area, and my insurance is from employment.
I will still have to make an appointment with the specialist regarding administering the treatment.
My current platelets level is really high at 1079 , WBC is also high, and many other blood chemistry data from CBC test are out of range. However, the hematocrit which the hematologist wants to be at 45 or less is actually manageable. I get phlebotomy every 6 months (average) over the last 4 years after original diagnosis of PV and I take asprin daily. I have not taken HU that had been recommended to me when my platelets hit 800 (maybe a year and a half ago). Except for itching that I somehow able to manage with baby oil and ceramide based cream (from Costco), there are not much other symptoms in 4 years since diagnosis.
On my own, I daily take Centrum vitamins, Garlique supplement, and eat half-bulb (yes a lot and not clove/s) of crushed garlic exposed between 10 to 15 mins (to generate allicin) before eating it raw. Not exactly recommending it but it works at least to reduce my blood pressure - not taking low-dose blood pressure medication which my primary doctor had recommended 3 years ago ; and I read that allicin helps in control of platelet aggregation - not sure with both but will continue with raw garlic as it seems to be good in many different ways.
I had bone marrow biopsy 2 years ago where the doctor said I did not have scarring - so that was good news; but missed the chance to know the allele burden when this BMB was performed. In anticipation of Besremi treatment, I had the allele burden tested last month from blood sample and showed 69.7% - and I still have to discuss the significance with the hematologist.
So, I hope to be able to share my Besremi experience in future months and hope that this treatment will be suitable and effective.
I always thank God for all the blessings even when I have PV!
Good luck to all of us in our MPN journey!
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Pat032018
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Sorry, I am not sure about the allele burden of 69.7 %. The lab results, that only came out last week, call that number "mutation frequency" (and I thought that is the same as allele burden) - and as I mentioned I have not discussed that with the hematologist.
Congrats on your approval. I am in a similar situation but have not yet been approved. Initial application was denied by United healthcare and my doc is reportedly asking for an exception and then if necessary an appeal. I am curious as to your level of involvement with the appeals process. Were you active in filling out the paper work or did you you just let your healthcare provider handle that process? I would also be curious as to how you respond to Besremi although I realize everyone may be different . Thanks in advance for any information you can provide.
I was not involved at all in the appeals process as the hematologist and pharmacist took care of all of the paperwork. PharmaEssentia contacted me and would like to enroll me in a financial assistance program pending approval; however, the insurance approval came ahead of completing any paperwork with PharmaEsssentia.
I am very glad to hear you got Besremi approved on appeal. That is very good news. I am about to switch from Pegasys to Besremi this coming Wednesday. I have responded very well to Pegasys. I no longer need phlebotomy to control HCT and my platelets are WNL. It also reduced the Basophilia to WNL. I hope you find Besremi agrees with you and helps you to achieve hematologic remission.
I expect mutation frequency = mutant allele burden = variant allele frequency. All just different terms for the same thing. If you are interested, here are a few research articles on this topic.
You are correct in thinking that garlic has both anti-hypertensive and antiplatelet effects. It can potentiate aspirin a bit, but likely not enough to be an issue (just my opinion).
Will look forward to hearing about your journey with Besremi. We can all share our experiences and build our own database. We truly are stronger together.
The benefit of garlic for me is I do not have to take any blood pressure medication. Garlic in supplement form and raw crushed garlic, which I take everyday, have not lowered my platelets count but probably help in preventing platelet aggregation good enough while I wait for Besremi.
Congrats! I had my first Besremi shot/dose last Friday. I started with 50 mcg, not the 100 that was recommended. I felt fine the day of and the next day. I did notice my neck was a bit stiff the day after, but that could have been from the stress of the whole "first time" situation. I had been on the fence about taking Besremi since I don't have any symptoms from my PV other than what my CBC says. That said, I'm very happy I did start it; I'm doing the best thing to hopefully have a normal lifespan.
Funny, I literally just got a letter in the mail today from CVS saying my request for Besremi was denied as my health plan shows I should be on Jakafi. For someone with PV they clearly have no idea what they’re talking about. Sounds like they at first will deny and maybe hope people go away. I understand they probably don’t want to pay for it because the cost is outrageous, but based on its FDA approval it now meets the requirements of something they should cover. Congrats on your appeals success. Look forward to hearing more about your success on the drug.
I got approval on the appeals process where my hematoogist did all the work. I did not have input in the appeals process. In an email portal, all I mentioned to the hematologist was that Besremi is the only FDA approved treatment for PV. Maybe, it helped that I was not taking HU, Jakafi, or Pegasys; and in this case, the hematologist can say that Besremi is the first line of treatment for me.
Turns out same thing happened to me. In fact the same day I got the denial letter from CVS I got an email from doc office saying where my prescription would be filled. They were working through all the process behind the scenes. Few days later then got an approval letter from CVS. Now just waiting on seeing what total cost will be. That’s the real kicker.
I'm very interested in this thread, and thanks for sharing your experience. I'm just starting the process with CVS/Caremark. @Pat032018, I'm hoping my experience will be like yours. I'm also from Illinois and worked for State Farm in Bloomington before retiring last year. Like you, I haven't been on HU -- things have been going well with phlebotomies and aspirin, but turning 60 argues for going on some drug. Do you know what arguments your hematologist made to make it through the appeal process? Thank you so much.
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BESREMI ACHIEVES PATIENT-SPECIFIC TREATMENT GOALS IN POLYCYTHEMIA VERA: FINAL RESULTS FROM THE PROUD-PV/CONTINUATION-PV STUDIES
Started Besremi
