I saw the MPN Specialist on Wednesday to review my status and treatment plan. I have been having issues that the doc agrees are likely related to chronic iron deficiency from the phlebotomies. There are of course, a host of secondary symptoms that the MPN Specialist also noted are quite common with PV. (Side note - it really is nice to talk to a doc who knows all the different ways MPNs manifest). While there is no current signs that the PV is progressing, it inevitably will (hopefully slowly). My own risk for leukemic progression is higher, though, due to the NF1. We discussed all of the options, and decided to initiate treatment with PEGylated Interferon. This is both to try to achieve better symptom control (higher quality of life) and with the hope of preventing/delaying disease progression. We discussed the possibility of reduced allele burden and remission, but it is not an expectation that this will occur. It would be nice if it did!
One piece of good news is that my insurance might cover Besremi since it is in Orphan Drug status. I was very surprised when I checked into it as I have been having nothing but problems with the new form of insurance since I had to shift to a Medicare Part D formulary. The doc was really surprised that it was even possible. So we are going to try for authorization. If Besremi does not get authorized, I will start on Pegasys then shift to Besremi when it does get FDA approved.
I also saw the nephrologist yesterday to review the possible chronic kidney disease. She agrees that something is wrong, but that it is not an immediate threat. We will be doing a series of additional tests and an ultrasound to sort things out. We re going to rule out elevated uric acid levels/gout and glomerulonephritis (both of which can be PV related). The nephrologist thinks there may have been some kidney damage due to past medication use. We will get it sorted out over the next couple of months.
So - on to the next stage of the journey. I am hoping for a favorable response to the PEG-IFN no matter which form I use. I will certainly give it s try and see how it goes. I will post how things are going once I know more.
As always, thanks to everyone for listening and for your support. All the best to all of you all.
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hunter5582
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Wow a lot of new news! Are you having symptoms of a chronic kidney issue? Good news your insurance seems cooperative. Hoping for the best for you Hunter. You are an inspiration for me and I really appreciate all of your postings.
Thanks. I appreciate all of the support you and others give. The kidney issues are on paper (labs) only. I have no symptoms I can feel. Just a few numbers on labs are a little outside of the normal range. I am not particularly worried about it, but best to catch something like this early and respond to it so it does not get worse.
Hopefully the insurance will cooperate. They have been me making though a bunch of hoops on various meds. It is rather frustrating and takes a lot of persistence to get what you need approved. I think that is the intent - to make it harder to access more expensive care, even when it really is in your best interests. I am certainly going to advocate for my own best interests and do whatever it takes to get the system to cooperate.
Good to read that you have such a good MPN Specialist, Hunter. Hoping you find out and put right your iron deficiency issues and the other symptoms . Hope you achieve a better quality of life with the PEG Interferon or with Besremi if you manage to get that covered by insurance. I’ll be interested to hear how you get on kidney-wise as although my kidney blood tests appear to be normal I’m suffering from a painful bony lump on my wrist which I think is high uric acid caused by the Hydroxy. Recent telephone consultation with Haematologist resulted in her diagnosing gout, but this was without sight of problem. We don’t have video links here in the N.E. of England so I’m attempting to see my GP . I’ll be watching to see how things go for you. Best wishes and good luck. Fran
Thanks. My MPN Specialist is really great. Sorry to hear about the gout. You are likely right that it is connected to the HU if it is indeed present. For those of us with PV the erythrocytosis can also cause it. I am also having pain in my left hand that feels like tendonitis. Maybe more effective treatment for the PV will help this too,
Hello hunter - as always you are an inspiration, and so pleased that you will have access to PEG and possibly Besremi - hoping your kidney problems can be managed before they escalate and that a change of medication will work well for you. Very best Anne-Marie x
Glad to hear your MPN specialist is giving the time and attention your wonderful self deserves Hunter 💚
If you need to hear some Pegasys good news stories - I’m on week 9 of treatment and my platelets have stopped the slow creep upwards. Side effects have also eased.
Will be keeping fingers crossed that you have a fantastic response from both your insurers and whatever form of Interferon you proceed with.
Hope you get on well with Pegasys, I’ve found it to be a great drug but does take a bit of time to work. My WBC and platelets dropped very quickly but RBC/HCT took ages.
I started as ET and then PV (or masked PV if this category still exists).
How high is your JAK2? Mine hit 80% pre Pegasys, now 12%
Do you monitor your LDH? Mine was 250, now sub 110.
That sounds like a brilliant response to pegasys Paul! Do you mind me asking how your Jak2 allele burden was measured both time? Bloods or bone marrow?
That is an amazing response to PEG-IFN. My MAB is somewhere between 26%-29% based on two different tests on 2020. It was at 25% a year before that. My doc does not track LDH. I may ask about next go round as I do run very high on inflammation. All of my interleukins are at the very top of WNL, except for IL-10 which was high.
Yes, my WBC was about 11 so something stirring. My first BMB was ET as was second which was doubled checked by Guys who suspected PV. Guys said PV/MPN-U.
Good luck with Peg. I’ve been on it for nearly a year now, side-effects are manageable and I’ve been feeling much better since starting it. Please keep us posted on how you fare with it. Your posts are always so clear and well-informed.
I am in the same situation. I am going to star with Besremi probably next month because the burocracy is higher.
What kind of problem in the kidney we have to check? My hematologist dosent have any idea about symtons related to PV. I have a lot of problems in my extremities, uric acid higher, plaquetocrito too. No bad the rest the blood count. The worst are the pain in my legs and hips.
I dont know if Besremi will work well for it.
What kind of test do you have to do befire starting with Interferon? My physician says any proof I will need. I think it is wrong.
Increased red blood cell turnover can cause increased uric acid levels. Increases risk for gout and kidney stones. rarediseases.org/rare-disea....
"It is proposed that there is an association between polycythemia vera and the development of glomerulonephritis." onlinelibrary.wiley.com/doi... . Note that this is not a common thing and not something that would be routinely looked for. Typically PV does not affect the kidneys per my MPN Specialist. The only reason we are looking at this is because I am having some sort of issue with the kidneys that we need to sort out.
That is the thing with rare diseases that can have rare manifestations. Sometimes you just do not know what is causing what. You just have to figure things out as you go and treat what you see as best you can.
Glad to hear that you had a good productive appointment. I was on Peg for a year and the only side effect was aching joints which were sorted out with Paracetamol. Let us know how you get on.
Thx as always Hunter for the update. Your discussions with your medical team are a must to follow. Good luck with your continued journey.
Good doctors make such a huge difference. Empathy and knowledge is so important for patient trust. I have been on PEG since Jan. Time flies! The physical side effects have disappeared- platelets are around 350. Definitely good
I do experience some mood issues usually last only few days between injections but hoping this will vanish in time. Fingers crossed you will get besremi l think it’s better formulation and less side effects. Wishing you all the best with new treatment plan
Well it seems you have a good hold on what is going on with your symptoms and that hopefully will steer the medics to act in a very positive way! Your MPN specialist sounds really good. Here's to some good news for you and keep persevering! All the best.
Fab to hear that you are happy with your MPN specialist. I too am hoping to change to pegasys in June. We can compare notes although it won’t be like for like as I’m ET Calr. Thrilled Your medical insurance is covering the expense. Living in the UK takes that pressure of bills away from me.
It will be Pegasys for me. Cost will be $100.00/month until I reach my cap of $2000/year then pays 100%. Due to my other meds, I am already nearing my cap for this year. We can definitely compare notes once we are both up and running with PEG.
Hi Hunter, it's great that you have an very experienced MPN specialist looking after all your issues. Always learn something from your posts. I wish you all the best.xx
Hunter best of the best to you.I know you have personally replied to me on several occasions with very good advice.It is indeed maddening that these insurance companies will fight the best form of treatment because of cost. What treatment are you currently on?
I am currently on phlebotomy-only. The chronic iron deficiency symptoms have become just as problematic as the PV symptoms. Time to move on to a new plan. I tried to get into the PTG-300 clinical trial, but I am so chronically iron deficient that I could not get in to the trail of the drug that prevents iron deficiency while controlling erythrocytosis.
I will be starting with Pegasys since we were not able to get Besremi approved. I will switch to Besremi as soon as I can. They already said they will approve the Pegasys. Since the cost of Besremi is not much more, once the FDA approves I hope authorization will not be a problem,
Good luck with the Pegasys. I have been thinking of switching from hydroxy. The hydroxy is working fine for me but I'm just tempted by all the positive press around Pegasys and Ropeg. However, my haem has agreed that I might be back on venesections while the Pegesys builds up, which itself seems a backward step. Do let us know how you get on -also with your kidney issue. Good luck.
Yes, Hunter, I also hope the PEG-IFN helps and that you can change to Besremi soon. I haven't been on this board very long, but I'm very impressed with how much help you have provided to the rest of us. You truly are a blessing to us all. Thank you and good luck.
BTW, what Rx insurance do you have? I'm male, 72, ET, JAK2+, SRSF2 and del(20q) [both appear to be very rare with ET/JAK2+], TIAs, on aspirin twice/day and about to start on Pegasys. I'm expecting my Medicare D copay will average $400/month or a more.
Thank you for your kind words. We are all blessed to be here for each other. It has been a rather interesting couple of years for me with 4 surgeries and the progression of the MPN. The forum has been a huge support to me though it all.
I now have a Medicare Part D plan through the Cigna retiree plan from my former employer, Fairfax County. Despite the challenges I am having navigating this new system, I know it is still a better plan than many have access to. I have a monthly max cap of $100/per each high tier med and a yearly cap of $2000 for all meds. Once I reach that, I have 100% coverage. I reach the cap every year now. Having caps is quite critical to our financial situation. Between all the meds I need these days and the four surgeries, I would not be in a good situation without the caps on meds and medical.
As a male at age 65 with both the JAK2v176f and NF1:c5425C>T mutations, recent heart, brain and other surgeries, life has become quite interesting. Aging is certainly not for sissies! I actually had to discontinue the aspirin due to excess bleeding/bruising on it and because the brain tumor was hemorrhagic. I know all about rarity between having PV less than 2/100,000, NF1 1/3,000, adult pilocytic astrocytoma 1/60,000. If I could turn that into lottery winnings I would be rich!
Hope you are able the access the Pegasys and achieve your treatment goals with it.
Wow! When I was a lad the expression for what you've endured was, "He was drug (sic) through a knothole...sideways!" I hope that things go much better from now on.
Thanks for the insurance insight. I'm expecting to hear about my Pegasys approval soon and keeping a positive outlook. Every day is a blessing for me since I've already lived 19 years longer than my father and brother (heart issues).
Hi, Hunter, I responded to you yesterday but I forgot to click on the reply button. Anyway, I’m really glad that the Besremi was approved for you and hope that it had the desired results. I understand your frustration with Medicare since I became a recipient myself this year. Only one drug plan covered my Fedratinib, and even that was about 7-8000 dollars/ year. I applied for a grant and got one that covered the entire cost. It was a very stressful process finding someone who would cover it. I also empathize with you regarding your kidneys. I don’t have kidney disease but I’ve had kidney infections a couple of times and they can be extremely painful. I wish you well with your treatment.
I really hope things improve for you. Please continue to keep us updated.
Thanks Cindy. Unfortunately Besremi did not get approved so will be starting on Pegasys, I will switch to Besremi when it receives FDA approval. I am fortunate in having one of the better secondary retiree insurance programs from my former employer. It is frustrating knowing that being on Medicare actually makes it more difficult to access medications than when I was just on regular insurance, but it is what it is. What is really aggravating is that the IRMAA income penalty makes my insurance cost more now than before I was on Medicare.
I am glad you were able to get a grant to help fund your Fedratinib, I hope that med is working well for you.
The ironic thing is I have been selling Medicare products for the last 11 years. But when it came time to me having Medicare, I didn’t realize how hard it was for my senior clients to obtain the drugs and services that they need, until I had to go through it. The cost for my Fedratinib was handled by my doctor before Medicare, But when I went on Medicare she said I was on on my own. I had to call about seven places before I found someone would give me a grant. Then I had to get it approved again through my doctor for my drug plan. I went into the donut hole within a couple of months. So now the drugs are actually very cheap because of my grant. I believe I will have to reapply for a grant every year. Believe it or not, all the other drug plans said it would cost $75,000 a year, so I would lucky to find one that covered it. The whole process was very stressful.
My heart goes out to you. You've had such a long and bumpy journey with MPNs. In the USA, do you not qualify for ruxolitinib on compassionate grounds and also because you are intolerant of hydroxycarbamide? I'm sure you and your specialist will have considered all the options available to you. You are so well informed and have given such excellent advice and support to many others. I wish you the best of luck in this next stage of your MPN journey. Take care of yourself. Best wishes, Lyn
We did in fact discuss Jakafi and I could access it. The MPN Specialist and I both felt that PEH-IFN is a better choice for me given my profile and treatment goals. We will see how it goes.
A lot going on for you Hunter, but I’m pleased to hear of some good-ish news regarding the current lack of progression of your PV in general (hopefully) and the Besremi. I know how much you would like to have access to it, my fingers are crossed for you! In the meantime I really hope the Peg both agrees with you and works it’s magic.
Regarding your kidneys, have you looked into foods that can contribute to uric acid? I only ask because I did google it once and only visited one site (Indian) where they listed many foods that could contribute.
What I’m really asking, is, do you think food choices could actually help or is that too subtle in your/our case?
Informative as always, thank you….I will have to look up ‘Orphan Drug Status’ now! 😉
Thanks. I did look up kidney related food issues. The short version would be eat a heavily plant-based diet. I pretty much already do that. Could cut back a bit more on animal-based products, particularly those that contain purines. I am getting the testing today to see if my uric acid levels are elevated.
"The Orphan Drug Designation program provides orphan status to drugs and biologics which are defined as those intended for the treatment, prevention or diagnosis of a rare disease or condition, which is one that affects less than 200,000 persons in the US or meets cost recovery provisions of the act." It means there are times when we can access drugs before they are FDA-approved. Paying for them is entirely a separate matter. Hopefully Besremi will be FDA approved soon. Unfortunately COVID slowed the process. Might be only a matter of months.
The lab messed up and did not run the right renal panel that would have included uric acid. Have to rerun that one. The nephrologist does not think this is what the issue is. I actually agree, but want to rule it out just to be thorough. All things considered it seems something like erythromelalgia is more likely. The MPN Specialist also said something like "that could just be PV." Oh well - we will get it sorted out.
My now, not so awesome haem (maybe it was just a bad day) says my foot pain is not EM because I don’t get the red rash.There’s a lot of messing up in the world these days, we must be patient.
The hematologist just ran uric acid levels. He actually thinks symptoms with the toes/feet my in fact be gout. Uric acid levels may or may not tell that story. Will get it sorted out eventually. Have to monitor anyway since I just started the Pegasys today.
Thank you for keeping us informed. I hope Pegasys will help reduce your allele burden and symptoms so that you may have a better quality of life. It’s encouraging that Medicare will be helping tremendously with your cost of treatment. Wishing you well with the start of your journey...
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