Hello everyone, I have just just been diagnosed with JAK2 after bloodtests showed a high platelet count ( over 1000). My other counts were elevated but not overly high.
I have Polymyalgia Rheumatica for the last 7 years, on Prednisone for 6, so I joined that forum here when just diagnosed with JAK2, so have been reading here!
I have only just begun this journey, not knowing exactly if I have PV or ET. The haematologist said "we are going to call it PV" (to spare me from going through bone marrow testing). I will be getting a second opinion on treatment options from a Cancer Hospital, but it will be a little while before I do.
First doc wants to put me on 500 mg 2x day of Hydroxyurea (already on 81 mg aspirin). I am 66, female & low iron but hematocrit normal. I have had no heart problem or thrombosis in the past, just a bit of background. Because of PMR (Polymyalgia Rheumatica) they test my blood regularly (some skipped because of covid running rampant here in the US), so I can see my platelets jump after I had three cortisone shots (one in Sept, one in Dec and one earlier this month) for two frozen shoulders and a swollen/painful knee.
I wonder if these multiple shots made my platelets go up faster and will they go down? I feel like waiting a bit before starting the Hydroxyurea to see a 'true baseline' for platelet count first.
Also wanted to wait for the second opinion before starting on the drug, to see if other hospital may want to determine if I have PV or ET. And give me other treatment options.
Scary time on top of dealing with pain from PMR so long! Any thoughts will be SO appreciated 🌼
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Androg
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Hi, my understanding is that cortisone injections can raise your platelets. However, having said that I have them every 6 months or so and they have never increased my platelets so it’s difficult to know
Welcome to the forum. This is a great place to get support and information from the perspective of others with a MPN.
MPNs are rare disorders. Most docs, even hematologists have relatively little experience with them. That is why is it so important to involve a MPN Specialist on your care team. Here is a list of docs with the needed expertise mpnforum.com/list-hem./ . It is worth doing whatever is necessary to consult with a true MPN expert doc to ensure your receive optimal care.
There is quite a bit to learn to better understand MPNs and what is going on. A few factoids worth knowing. MPNs are inflammatory disorders. The JAK2 mutation does more than drive up hematopoiesis. It also causes the overproduction of inflammatory cytokines, which causes many secondary symptoms. Inflammation from any source can also drive up thrombocytosis. Having both PMR and a MPN will likely be cooccurring disorders that have impact on each other. I learned that lesson with having cooccurring PV and Neurofibromatosis Type 1. The list of inflammatory issues I experience includes: osteoarthritis, plantar fascitis, GERD, eczema and insomnia. Systemic inflammation really is a thing we need to deal with.
It actually sounds like your current doc is on the right track to be thinking about calling this PV. Sometimes people experience a "masked PV" that looks like ET at first glance, but really is PV. The fact that you have low iron but normal HCT is suggestive, but not conclusive. Your EPO level would be another point of data to consider. Do also be aware that low iron levels can drive up thombocytosis.
Be sure to check out the Voices of MPN website for some good information.
In considering hydroxyurea, it is important to understand this medication and what the risk/benefit profile is. Some people tolerate HU and benefit from it. Others cannot tolerate it. I am one of those who cannot tolerate it as I experienced toxicity even at very low doses. We are each different in this regard. There are other options if you need to use medications (e.g. PEGylated interferon, Ruxolitinib, and others). ALL of the meds used to treat MPNs have their own risk/benefit profile. Not treating the MPN with drugs also has a risk/benefit profile. You will have to determine what is in your best interests.
Thanks so much hunter5582. I am learning fast that my PMR and PV/ET are co-conspirators (as I also have osteoarthritis, as as said you do.... I'm sure I'll think of other inflammatory things I hadn't thought of as well).
I have more questions than answers at this point so I thank you very much for your insights & links to further reading!!!
I do think an MPN specialist on my team would be my best way of going forward.... I'm in a small city, so while my 'first contact' seems good, I have it in my mind to not settle for a local oncologist as this IS a rare condition, as you said.
Well, off to start reading now. If it helps you to make "more educated guesses" on whether I have PV or ET, I'd be more than happy to send you my blood stats 👍
I value you taking the time to thoughtfully write to me...As at this time I feel particularly ill equipped to know what is ahead, so educating myself is such a benefit, thanks again.
It sounds like you are on the right track to create a MPN care team. The way I do it is that I have a really wonderful local hematologist who is not by his own definition a MPN expert. He handles my ongoing MPN care. I also have a MPN Specialist based out of the Johns Hopkins MPN Clinic. He consults with me and my treating hematologist about my care plan. this arrangement works great. I also have a NF Specialist/Neurologist based out of the Johns Hopkins NF Clinic as part of my care team. Since I had a NF1-related brain tumor removed last year her involvement in my overall care plan is particularly vital.
For those of us with significant co-morbidities, getting the specialists to collaborate is absolutely vital. It is up to us to ensure that this happens. We have to be our own advocates and case managers to ensure optimal care. It sound like you are already headed in this direction.
Please stay in touch and let us know what you learn, We benefit from shared experiences and knowledge. We truly are stronger together.
hello Androg, it is a scary time when you are told you have a MPN, it is a lot to come to terms with and understand. Take your time to read as much as you can about ET and PV, we have a lot of very useful information on our website which will help you mpnvoice.org.uk and I see that Hunter has given you some good links as well. It will be much easier for you once you have a definitive diagnosis and then you move forward. Write down all the questions you have and take them with you when you see your doctor, that way you won't forget to ask something important, and in particular what treatment options are available for you. Let us know how you get on. Best wishes, Maz
I was happy to hear from another voice in this wilderness stage of MPN I find myself in 🤗Mazcd, I just started my question list yesterday.... it's long but I found writing them down somewhat therapeutic, yes, because it organized my thoughts on what i already know and things I need to find out. Navigating a new maze is always helpful from those who came before!
And I will indeed keep you & hunter and others updated as I go, thanks so much, it means lot
Welcome, I bet your head is going round and round it. Make sure you don't overload yourself with information, allow for processing, drink lots of water all the time, and stick to this forum for support and queries - we are all in this mpn boat and help each other when it gets a bit rough. Take care, let us know how it goes for you x
You are so right Minu 68. I was up until 2:30 am reading and researching.Once I have my first dr. visit since diagnosis, on February 4th....then as soon as I get scheduled with a nearby cancer hospital for my myriad of questions, I think I'll have a better idea which way my treatment will go.
I've been through this type of thing before when I had an illness where no doctor gave the correct diagnosis for over a year. I ended up diagnosing myself and buying my drug over the internet.
So, dealing with research and navigating the maze of treatment options is not new, but this has a consuming quality to it, I must admit.
I will drink water more than usual and 'try' to not get overwhelmed 👍
Thanks for your words of wisdom & I will be adding more here as soon as I get more info to share 💙
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Outcomes of JAK2 V617F-positive polycythemia vera and ET according to the JAK2 V617F allele burden
Good news! 
lowered platelets
Diagnosed with Essential Thrombocytosis with JAK2 negative with some of my red blood cells abnormally-shaped. 
ET AND LOW NEUTROPHILS
