I am 73, previously fit and active ,diagnosed with iron deficiency and PV after a Postive JAK2 IN MAY 2024. I had 2 venesections and had "luckily" been on Aspirin for 2 years prior to diagnosis. Later commenced HU but after 10 days my platelets had fallen drastically and I required hospitalisation , a platelet infusion plus BMB.In NZ the Allele burden is not routinely measured but after reading various posts on MPN Voice I requested that the test be repeated with a %of the mutation, so that I could monitor the progress of the disease and/or efficiency of treatment . I had to pay privately for the test. It came back last week at 76% and I have an urgent appointment with the haematologist later this week . I am assuming she may start me on either Pegasys or JAkavi which are the only alternatives funded in New Zealand and only available if the patient cannot tolerate HU. My Hb currently is 118, Hct,Rbc 6.31 , Platelets 168, LDH 388. My main symptom is gross fatigue plus SOB on exertion. I realise each patient reacts individually to any drug and all have numerous side effects but which would be your choice ? I have appreciated all the advice and common sense you have posted previously . Thank you
Questions for Hunter: Allele Burden and Pegasys ... - MPN Voice
Questions for Hunter: Allele Burden and Pegasys v JAkavi
Thank you for your kind words. I hope others with knowledge and experience with these medications will also weigh in.
Treating PV with either Jakafi or Pegasys would be very reasonable in this situation. Both have proven efficacy and tolerability. The evidence for disease modification/reduced allele burden is good for the interferons. There is also evidence that Jakafi can have this same benefit. Jakafi may have a bit more efficacy for some symptoms (e.g., pruritis) but both medications can offer relief to some. It is hard to say which would help the most with fatigue and dyspnea. You would likely only find out by trying.
Given the current shortage of Pegasys, it may make more sense to try Jakafi. I would be reluctant to start on any medication if the supply was uncertain. I gather that Besremi is not currently available in NZ. That is unfortunate as there is no supply shortage. While I opted for the interferons after HU and venesections proved unsuitable, I would definitely consider Jakafi as an alternative.
I would recommend starting at a low dose of whatever medication you choose and going slowly in terms of dose titration. I would also repeat blood tests every two weeks while titrating doses. This is what I have done in managing my own care. It will be important to include CMPs as well as CBCs. Your hematologist can best advise on any other labs that would be indicated.
Suggest that you have a focussed conversation about your treatment goals and risk tolerance with your MPN care team. It is important to be clear about what you hope to achieve through treatment (risk mitigation, symptom management, disease modification), what risks you are willing to take to achieve your goals, what adverse effects you are willing to put up with (there often are some), and what your preferences are in treatment approach.
WIshing you all the best moving forward.
Hey Hilary... 
My name is Steve (from Sydney – or just across the ditch. 
I am Post ET / MF CALR T2 (w/ASXL1 & VWS), and I currently remain relatively stable on Ruxolitinib (Jakavi) for these past SIX (6) years... & counting...
Sorry to hear that you are feeling a tad anxious concerning what is obviously quite a high JAK2 AB (76%).
As Hunter mentioned, either Jakavi Or Pegasys' Interferons maybe beneficial, and as you've also pointed out earlier... Each person can have similar MPN & yet have totally diverse reactions to some Med's...
Hunter mentioned the shortage w/ Pegasys' that may or may not prove to be a big problem for you in NZ. In Oz, Echo Therapeutics has recently taken over distribution, & licensed a company called "Just Med's" to handle all deliveries in Oz... Thus far, all seems okay...
However, there is a 'Red Flag' for when a shortage may appear in Oz, which is reported as in or around March 2025...
Bearing all of that in mind however, you will need to seek strong advice from your chosen MPN specialist, as taking Jakavi can have some other unwanted effects that you should be made aware of, and especially so since you mentioned fatigue...
1. Ruxolitinib (Jakavi) is an "Immunosuppressant" which can have the affect of inducing anaemia. When taking Rux' one must also be taking a strong 'Anti-viral' like Valcyclovir because the Immune system can become very low & each patient may become highly vulnerable to a host of unwanted infections: From a simple cold, flu, CV19, gastro' & perhaps a few others...
2. Secondly, and given what I've mentioned above, is that your Platelet counts could dive even deeper, which given their low present count would also be an unwanted event...
"Thrombocytopenia is a condition in which you have a low blood platelet count. Platelets (thrombocytes) are colorless blood cells that help blood clot. Platelets stop bleeding by clumping and forming plugs in blood vessel injuries.
Thrombocytopenia might occur as a result of a bone marrow disorder such as leukemia or an immune system problem. Or it can be a side effect of taking certain medications. It affects both children and adults.
Thrombocytopenia can be mild and cause few signs or symptoms. In rare cases, the number of platelets can be so low that dangerous internal bleeding occurs." MAYO CLINIC
mayoclinic.org/diseases-con...
Your HB is already on the lower side too...
3. The final insult of taking Rux' for some people, is then learning how to manage one's body weight... Rux' often makes people gain weight fairly quickly... Fortunately, (as I've found) maintaining a good plant-based diet coupled w/ aerobic exercise can work wonders...
Well that's most of all the negative stuff out of the way...
... Here';s the good news... After failing to be able to cope w/ HU myself, Rux' basically gave me back some semblance of a normal & more manageable life... The veil of mind fog, instantly lifted, for me... My spleen returned to normal, and I found the energy to teach myself how to fight the fatigue, start a better diet & exercise regime... & even tho' I also have a Higher Risk Mutation in ASXL1, (which purportedly can designate a poorer outcome).
However, I am still here after Six (6) years on Jakavi...
Hope I haven't made you anymore apprehensive Hilary... Just wanted you to be aware of what being on Jakavi has taught me in my MPN journey thus far...
Lastly, I would also like you to be aware that there are a few reported cases of how Pegasys' has lowered the AB burden of JAK2. One of our members Mark, is now down to 5.9% last I heard... Pegasys, is also said to possibly be able to have the effect of a complete molecular reversal CR, in some cases... (fingers crossed for everyone able ti use it).
We also have a Virtual MPN Meeting every Six (6) weeks in Sydney. All the details are always Posted on our Australian MPN-MATE FORUM (we call MATES), and of course you are welcome to join us at any time...
mpn-mate.com/forum/viewforu...
Best wishes Hilary, and pls feel free to reach out anytime...
Steve
Steve
Couple of points
Your correct Rux can cause anaemia with MF but not with PV if dosed correctly,the poster has PV, if someone with PV has anaemia it’s because the dose is too high, simply reduce the dose. That’s what Dr Verstovsek told me and he is of course correct.
Rux can cause immune issues more so with MF than PV because unfortunately those with MF tend to have lower immunity whatever meds they are on. I am on 22.5+20 mg Rux for PV for a long time no immunity issues, healthier than most people I know, havnt had Covid despite my partner being sick with it. I had shingles though, 6% on Rux get shingles allegedly, Shingrix is very effective.
Good health to you.
Hey Ainslie...
As already mentioned in my Post,
"Bearing all of that in mind however, you will need to seek strong advice from your chosen MPN specialist, as taking Jakavi can have some other unwanted effects that you should be made aware of, and especially so since you mentioned fatigue..."
Of course, I am only able to talk via my own experiences w/ Rux' & as we are all aware, effects can be quite diverse from one person to the next...
Best wishes
Steve
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