I am in such a bad state of mind now and I don’t know what to do. A CBC blood test a few months ago revealed I had a platelet count of 648. My doctor recommended I go see a hematologists. He took some blood then 2 weeks later he called and said I am positive JAK2 mutation. He told my from a virtual doctors visit, it totally caught me off guard as when I was in his office he said he doesn’t think it’s anything. He thought the high count could be from my stomach issues I have been having. I am 43 and in very good health , but he prescribed my hydro. I read online that most doctors would give someone like me low dose aspirin. When I called to tell him that he looked it up and said I was correct. Now I am so confused on what to do and what things I should be aware of. When a gave blood in his office my count lowered to 617. I am feeling so down and I keeping thinking I won’t be around to see 60. I feel horrible, but have to act ok around my three small children. Hoping I could come here to hear what people in the same boat as myself would advise and just have some support group to interact with. Thanks in advance and sorry for rambling!
I tested positive for the JAK2 mutation - MPN Voice
I tested positive for the JAK2 mutation
Hi Jdb123,
Sorry to hear that you have been diagnosed with JAK2 mutation, but good for you that you found this community. People are able to help you here! I went through the same drill in Feb when I was diagnosed with JAK2 positive ET. First week was awful, mind racing about future and panicking.
It is not a death sentence. Sure, we are not as well off as general population with this, but your life ecpectation is almost as good as any ”healthy” individual - and very likely you see not only 60, but also 70 and even 80.
You have it right, seems that you belong to so-called ”low risk” group, whose standard treatment is baby aspirin only. Some doctors disagree, and say that also low risk patients should be treated with Pegasys, which is alternative to Hydrea. My hint is to study the alternatives, discuss them with your doctor and be active. Let’s talk more later.
Cheers,
Bigcheat
Thanks Bigcheat!, do you know if this disease gets worse over time? Are there any things I should expect to feel with my body. I feel great other than waking up with a tingle in my arm from sleeping on it all night, but I’m note sure if that’s normal or not. It’s so thought because physically I feel great.
Hi Jdb123,
There are probably others in this forum who have had this condition much longer than me, and can tell how symptoms develop over time. I know there is a possibility that disease progresses, but also that it can sometimes be put to a remission too, with proper treatment. Also, I suppose other risk factors pay a role too (lack of exercise, nutrition, etc.).
I have the same problem as you, with numbness in the arm during night. I do think it is related to ET. Other than that and some visual disturbances, I feel fine. If I didn’t know I have it, I would say I am as healthy as ever. But it is good to have that knowledge, and prevent any clots with aspirin.
Here is a quote that gives me comfort at times:
”The life expectancy of patients with essential thrombocytosis (primary thrombocythemia) is nearly that of the healthy population. Median survival is approximately 20 years. For patients younger than age 60 years, median survival is 33 years.”
emedicine.medscape.com/arti...
Article is free but requires registration.
Cheers,
Bigcheat
Thanks Bigcheat, do you still have your ups and downs, or are you mostly fine mentally? It’s hard because I am seeing so much of “ everything is going to be fine and you can live a long normal life” to other not so comporting facts. I know it comes down to the individual, but trying to find information on this subject is not easy, so many conflicting websites and scattered facts. Do you know of any good resources/websites? Thanks again for the talk!
Hi Jdb123,
Yes, I do have my ups and downs. It is not easy mentally. I also have three kids and haven’t yet told them about the condition. I have studied quite a lot of articles on this. It has helped me, but of course people are different. If you want, message me and I can share some links .
Cheers,
Bigcheat
hello jdb123
I was diagnosed in April 2020 and like you was in a very bad place and panicking. But I still kept at work physical job and keep my family close and so far have carried on as normal I've been well since and more accepting of E T Now WHAT did help a lot is a cancer help group in north London they have been marvellous I hope you feel better soon
instow 1
Hi, I remember when I was diagnosed same as you and told what the treatment was I was on 4 Hydroxy a week and questioned why I needed to take this. (Was also shocked at the time, which I think you may be feeling,) There was a McMillan nurse there and she poo-pood my query as it was such a low dosage. At the time I just took this but now realise having been on since 6 years that I have no side effects from the drug (now on 3 a day) and lead a normal life. I am 70 next year but feel well. I couldn't take Aspirin as it had side effects so am on Clopydogrel with it instead.
I now feel pleased that I was diagnosed and feel that at least now I am hopefully staving off strokes etc with the treatment.
Hope you feel better about it all soon. This site is really reassuring and helpful, both to you and how you might speak to your Haematologist during consultations. Take care.
Hey there Jdb123... 
First of all both you and Bigcheat, are really in the very best possible company for having an MPN, of any description, in my view...
There are simply loads of other very exclusive members to this rather rare gathering, (people w/ MPNs), and were are all quite a unique crew after...
Everyone is super friendly and full of empathy for what you are experiencing, because we are right here w/ you...
Besides, there is also loads of really good news too...
Most people w/ ET go on to live very (near) normal lives... Truly!
And of those who do progress to Myelofibrosis (MF), like myself... Well, I try to live more of a Spartan lifestyle these days. I take far better care of myself now than I possibly I ever may have (?)
Good anti-inflammatory diet, 'Intermittent Fasting' and a consistent exercise regime, (in my case cycling).
Incidentally, my Platelets have always been super high, (currently floating 800-900s), and I am doing just fine and have been for sometime. However, I do grow somewhat concerned once they cross that Million marker... So, I just keep a really close eye on all of my results, stick to my new normal, and just get on w/ it...
Nevertheless, when I was diagnosed c. 4 years ago... I too was very overwhelmed as it completely changed my whole life in one fell swoop... Anyways, that was then...
Stay positive, keep your family safe and well... And never be afraid to ask questions about your MPN.
I have found that my being 'pro-active' learning about my MPN was the best thing I could have ever done, and yes... I also found myself leading my Haematologist around because in Australia, there are even less MPN specialists than there are elsewhere...
Keep smiling...
Best wishes
Steve
PS. Oh yes, before I forget, if you are taking just Aspirin for a while for your Platelets, (which you may well be being so young), MAKE SURE... that the Aspirin is 'Enteric-coated' that will protect your stomach against the harsh acids... 
Welcome to our very exclusive club.
First, it is entirely normal to feel confused, anxious, overwhelmed around the time of diagnosis. I doubt there is a person on here who hasn’t felt like this. I imagine your mind is racing and in turmoil right now. If I’m honest, my uppermost thought at the time was ‘OMG I’m going to drop down dead any minute’. Rest assured, the noise will subside. Perspective will be gained. The realisation that you are most likely to live an entirely long and normal life will prevail.
Secondly, arm yourself with some up to date, reliable information about MPNs. In this case Dr Google is not your friend. Much information out there is out of date, plain wrong and therefore unnecessarily alarmist. The understanding, management and treatment options for MPNs are moving at an exponential pace. Check out MPN Voice here in the UK. It was set up by the team at Guy’s Hospital under Prof Harrison, one of the leading authorities on MPNs. They also monitor this Forum. Here you will get good, sensible information and sound support.
Third, because MPNs are so rare and because you are relatively young it is imperative you get expert care from someone who specialises in MPNs. It sounds as if this may not be the case. Sometimes easier said than done. Tell us where you live. You’re right. Normal protocol for someone under 65 with ET (if that’s what you have) and platelets under 1500 and no other compromising health conditions or previous thrombotic episodes is aspirin and monitoring.
Finally, there is an MPN information day coming up on September 10th run by MPN Voice and their counterparts in Austria. Maz, the Forum / MPN Voice administrator posted about this in the last day or two. Sign up for it (by the 5th)!
Hope this helps.
When I was diagnozed with PV I considered that as warning from God to stop smoking, drinking few, eating more Healthy , don t warry Life is going further FOR better and worse
Ramble ahead, my head was a shed for years and I was approaching 60. I didn’t have a young family to support. You need time to let it sink in.
Be positive , once you have read up on your condition think of other conditions that are far worse and with devastating prognosis. Your life will be relatively the same. Yes it might have to be tweaked to allow you rest time.
Do seek advise from an MPN specialist.
Maz will give you a list.
This site will give you huge support. No matter how irrelevant you think your question is post it! You will be amazed at the positive support.
Meanwhile go on MPN voice.org.uk for more information
Are you in the UK ?
You will be fine- Chin up!
Hello. Sorry to hear about your diagnosis. Is it the haematologist who prescribed hydroxy? I would talk to him/her again. They may want to reduce your platelets and hydroxy is good for this. Take care. Jx
Hi Jdb123,
Welcome to the group. Hopefully you’ll find some helpful tips along the way. But do remember you are a unique individual so what works for one person may not be ideal for you. Also , It’s your body. You do not have to take or do anything that you don’t want to. No matter what the docs say, you always have the final say in your treatment. ( I used to work in the NHS until I moved abroad) . Not all haematologist are knowledgeable about ET. But they will absolutely try and make you think they are, rather than lose face.
I am really happy you have a questioning disposition and take the time to look things up. You have access to so many medical research papers online and I really would recommend you do that and keep the docs on their toes 😁
As for MPN, it seems a bit biased towards drugs for me, but then they are partly funded by pharma. Make of that what you will.
I too have ET Jak2 Diagnosed aged 49 with platelets around 1200/1300 but most likely had it for at least 10/12+yrs before, without any indication. I went to the gp with what turned out to be a whole load of vit B12 deficiency symptom which all resolved within one month of taking supplement. ( again I had to do my own research with this as Docs know almost nothing about vitamins) Findings ET was just a coincidence.
As Socrates said, look at your diet and make it as healthy as possible. Catherine Shanahan wrote a great book “Deep Nutrition “ that I highly recommend. Also “Tripping Over the Truth “ by Travis Christofferson is a very very interesting read, looking at the history of cancer treatment, what has and hasn’t worked . He then talks about the latest research, going down a different path ( mitochondrial health) and how promising that looks. Really interesting !
Also, keep yourself fit. Very important.
As for me , I was like you. The haematologist wanted me to take platelet lowering drugs, which from my own research, I saw I did not fit the required criteria, so I refused. He then wanted me to take aspirin, which I did for a couple of months but then stopped that too, as again I did not meet the criteria to take it daily and aspirin is not totally harmless. (I think unless they are prescribing something they feel a bit useless. )
I have changed my diet, take supplements, keep exercising regularly, and only see the haematologist once a year-again my choice.
I know a lot of people on this site will disagree with me but you do have the right to question what the docs say, and the right to refuse treatment if you don’t want it.
Wishing you all the very best .
Lots of great replies above. I’d just add that MPN’s are relatively ‘new’ and there has been little research into cures/improved treatment options. All that has changed dramatically over the last 10 years, our medics have a much better understanding and there are exciting new drugs in trials. Many claim that within 5 years they will have treatment options to offer a near normal life span. And ET is the least aggressive of all, hence you should have loads of time to wait for better drugs/cure.
And worst case is a Stem Cell Transplant. Already a viable last resort option (albeit unpleasant and risky) but there are rapid advances being made, both with reducing the risks/side effects but alternative better therapies. Give it 10 years.....
Hence I’d bet you end up living a normal life span.
Big hugs xx it’s not as bad as it sounds. 10 years ago ET was just a blood condition. The cancer word makes it much more frightening so it’s just a word, remember that. At least the condition gets more funding now. I have ET Jak2 and am on aspirin only. Platelets 820. No talk of other medication till platelets rise a lot more or I hit age of 60. Worth asking your haematologist why he wants to put you on more medication at this point. He should be able to explain all the facts to you and ask as many questions as you need. Good luck and we are all here to support one another x
Hi, I was diagnosed with PV (Polycythaemia Vera) in 2005 at age 50.
Like yourself I was terrified but was reassured that with daily asprin and venesection when required I could lead a fairly normal life. The biggest issues symptonmatically for myself have been fatigue and bone pain with some occasional brain fog.
Last year on reaching 65 my Haemo put me on Hydroxy 500mg every other day and did a B.M.B. oe Bone Marrow Biopsy
This showed that I was pre M.F. so I am presently taking a wait and see approach. A couple of months ago my Haemo increased my Haemo dosage to 500mg 5 days a week Mon.to Fri. with a rest at weekends.
As some of the others posters suggested you should try to see an M.P.N. Specialist Hydroxy at your age seems somewhat soon. Try not to worry too much most of us live an almost normal lifespan. If this was your Haemo who had to check if you were right about asprin v hydrea I would certainly be looking for a change !
Best of luck going forward
Garry
I feel I’m in a similar boat to you - diagnosed at 38 with platelets around 550. Hard to get anyone to take it seriously at first then they found the mutation. I had an 18 month old daughter at the time and now she’s 4 and I have a little boy too. The first few weeks/months are stressful so allow yourself to feel down about it. But believe me you will get used to things and might not really think about it other than before your blood tests. They are finding more young people with this problem and hopefully it’s just catching a slow disease earlier than they used to - we should have some good years left and by the time you’re 60 hopefully lots of treatment options will become available. My main advice is to find yourself an MPN specialist rather than what sounds like a general blood doctor. They will probably prove to be far more reassuring. Good luck and welcome to a very supportive group
Sorry to hear what you are going through, we have all been there. This is great site, with a great group of people. We all have questions along our journey with any MPN. I would strongly suggest you find an Hematologist that specializes in MPN’S, that’s very important. Best of luck!
Hi jdb132, like you, I tested positive for jak2 and have platelets that test 520-590. I also went through the mental anguish for several weeks, no fun! However, now I find that since I feel fine and go about my normal life, I am mentally much more at peace and know it could be much worse.
But, let me tell you, you must find a specialist for this condition! Someone you trust and feel comfortable with. From what I have learned, you probably should not be on hydroxy and perhaps nothing but except blood checks to check for significant changes.
This is NOT a death sentence, it is a condition that may or may not progress.
One more thing....try and reduce your stress as stress only makes things worse! Exercise is my way of keeping stress under control.
Be safe and be happy!!
Thanks so much to everyone here, you all sound like great people. I think it would be a good idea the see if I can find an MPN specialist. I live in Newtown Pennsylvania, that’s about 30 minutes from Philadelphia. I wish this wasn’t so rare, I would love to talk to someone near me that is going through the same thing. I will be posting on here soon with some more questions if you all wouldn’t mind helping me with. Talk to you all soon. Thanks again!
Here is one of the MPN expert docs docs in your area that looks promising.
Your recommended hematologist: Dr. Elizabeth Hexner
City: Philadelphia
State/Province: PA
Country: USA
Phone number: 215-614-1847
Email: elizabeth.hexner@uphs.upenn.edu
Website: UPenn
There are more on the list to consider mpnforum.com/list-hem./
Hang in there child. I am female 78 and have had PV since my 30s. I am on Hydroxyurea.
I now also have severe lower back problems. I am retired so I don't have to worry about working like some do. It has taken a long time for me to accept I can't do as much as I did when I was Younger.
I had that fear of not living to raise my family. It in normal. You will make it too. Follow you doctor's orders, Did He give a list of foods to limit, like red meats?
Learn to tell people NO when you are having a tired spell. Don't push yourself. If they get mad, you don't need them anyway. Don't be scared,YOU will make it too.
I was diagnosed with ET over 30 years ago. About 7 years ago it progressed to PV. Now at age 65 I have had and continue to have a good life. There have been some challenges, especially in the last couple of years - but we all face challenges as we age. I also have a condition called Neurofibromatosis Type 1 that presents issues. Regardless, life is good. You can live a normal to near-normal life span with ET or PV. Each of us has a unique presentation of the MPN. Each of us needs an individualized treatment plan.
My old hematologist missed the progression and was not treating the PV properly. Fortunately, I have a relative indolent MPN and I came to no harm. I changed my treatment team to better match my needs. Many hematologists have little to no experience with MPNs. They lack the KSAs to provide optimal treatment. It is very important to have a provider who has expertise in MPNs, which are rare disorders. MPN Specialists can be hard to find. Here is a link to docs recommended by other MPN patients mpnforum.com/list-hem./ . The nearest MPN Specialist to me is two hours away at Johns Hopkins MPN Clinic. My approach is that I have a local hematologist who is a fantastic doctor, but not a MPN specialist, who handles my ongoing care. I consult with the MPN Specialist, who advises me and my treating docs regarding my care. I would suggest a change in your hematology treatment team is in order. NOTE: however far you need to travel to see a MPN Specialist - it is worth it. Tele-Medicine is a huge asset in this situation.
You made the right choice regarding hydroxyurea. There is a broad consensus that age 42 is too young to take HU. If you are mostly asymptomatic, there is no reason to take a "highly toxic medication with a low therapeutic index" when it is not needed. There are other options should cytoreduction be needed. There is no proven value to reducing platelet levels per se at the levels you noted. Sanitizing blood cell numbers to "normal" values is a treatment approach that the MPN experts no longer support. What matters is controlling symptoms and risks. Thrombosis is the primary risk, but you can be at risk for hemorrhage too (particularly if platelet level gets above 800k). Daily aspirin is the appropriate treatment protocol for most people with your ET profile (assuming good overall health).
It is important to understand the JAK2 mutation in order to manage it. The JAK2 mutation does more than cause thombocytosis. It can also increase other forms of hematopoiesis. The JAK2 mutation can also cause PV, MF and other MPNs. At the core all MPNs are inflammatory disorders. The JAK2 mutation deregulates the JAK-STAT pathway. This kinase pathway does a lot of things in your body: immune response, hormones, hematopoeisis, tumorigenesis, apoptosis, and inflammatory response. Many people with MPNs experience an overproduction of inflammatory cytokines, which are thought to be responsible for many of the secondary symptoms we experience. One piece of information that is important to know is your JAK2 Mutant Allele burden - the percentage of JAK2 mutated hematopoietic stem cells present in you body. It will show as a % on the lab. If this has not been done, the test is called a JAK2 Mutant Allele Quantitative Analysis (or similar).
Over my 30+ years with a MPN, I have actually had more trouble with the systemic inflammation and its consequences than the primary ET/PV risks. Treating the inflammation is now one of the primary treatment goals for me. I have never had a single incident of thrombosis. I did tend towards excessive bleeding/bruising when on aspirin, so after 30 years of taking it, I discontinued it on the recommendation of the MPN Specialist at age 63. It turned out to be the right decision for me, particularly in light of something else that came up shortly thereafter.
There is a lot to learn to understand and properly treat ET or any other MPN. The good news is that you will have plenty of time to learn it. Here are a couple of links you may find useful to get you started.
mpninfo.org/conferences/201...
youtube.com/watch?v=hbVr9u3...
NOTE: The MPN-experts do not all agree. That is why it is so important to develop your own understanding so you can meaningfully participate in your treatment decisions.
All the best to you on what will be a long MPN journey,
Sorry to hear i was diagnosed early this year. My gp told me not to worry then I was diagnosed with jak2. I was in a bad way mentally but it does get better. I still have times where I worry but mostly getting on with life xx
Hi Jdb123.
I'm sorry to hear of your diagnosis but I am very pleased for you to have found this wonderful forum!
I absolutely understand how you feel as I was diagnosed with PV (jak2 +) over 3 years ago, when I was 38, and had a 3 year old son. I was devastated and felt not only like I was going to leave my child without his mother but I was going to do it so soon that he might not ever remember me. Back then, I had platelets in the 500's and I thought that was high.
Nowadays, my platelets are in the 900's and although I freak out each time I hear the number and get disappointed that they aren't lower, it is only a small wobble compared to how I reacted back then.
I hope that you too will gradually come round to the idea that it isn't perhaps as bad as we can imagine. I have a few symptoms and take baby aspirin daily. Should those pesky platelets increase more, hydroxy will be on my menu, as it likely would be yours, but we can take heart from the many people here who tolerate it well and who have their MPN kept under control by it too.
Take your time with coming to terms with it though and don't feel guilty for how you feel about this. It is a type of grief really, as you are grieving for the 'normal' life you feel you have lost, and that is perfectly normal. I found it made me feel better to plan lots of things. I am a worst case scenario person, but strangely, planning for those worst scenarios helps me feel more in control. So I planned how my husband and child could cope without me, I started making memory books for my son with info on me and my life and on his life up to now. I revised my will, I booked holidays and changed how I work so that I spend more time with my family. I planned to eat healthier and exercise more. And I researched my MPN and possible treatments. These are things that helped me and they may or may not help you too.
I have rambled on now sorry but I wanted to share my experience, not because I love talking about myself but because I wanted you to know you are not alone in that initial fear, and it will take time but you will come out the other side of it. And even then, wobbles are perfectly normal and acceptable. Yes, MPN's might not be as drastic a cancer as many other types of it but it still has an effect on our mental health, so be kind to yourself and take your time to adjust.
With love and best wishes,
Skye
Hi,
This forum will help you a lot! It did help me ;-). I am 45, ET and Jack2 positive. I had more than 600 for years, all the doctors I saw they said not to worry the rest is normal just keep an eye on them . Only when they were more than 1000 I was able to see an specialist and when they were more than 1500 they told me I needed meditation. I am with Interferon and my last test was 175!! After a year on the medication.
It was hard to hear I have a disorder and face the fear to die young! I am mother of two young boys!! But I learned to live with it, I can’t complain I have a good quality of life, this makes it easier to be positive!
Take care and learn about Mnp, it will help you!
Try not to panic. Im 47 and have lived with a platelet count of 1300 for 10 or so years and also JAK2+. Im my opinion pursuing a healthy lifestyle goes a long way. For many years i had pain in muacle and bones. Dizzy spells. Enlarged spleen and other problem and was against starting Hydroxy. But i did about 1 year ago and no longer have symptoms.
Take positive action with the things in your control. What you eat and keep active. Sleep full length.
I am also on aspirin but that is mostly my choice as a precaution. My platelets came down to 400 and doc said I could stop aspirin if i wish but i prefer not to.
Hi Jdb,
Don’t despair, I have ET and am Jak 2 positive. I was diagnosed nearly 16 years ago with platelets of 1200.
I was on HU for many years and am now on Peg interferon. I am 80 next Birthday. Plenty of time for you to go on living and enjoy your life.
Best wishes,
Katie
Thanks so much everyone I sound have my top questions for you all by tomorrow. The one question I have now, is why would some of you think the reason for my hematologists to say what I have is not a cancer. When he first told me of my JAK2 test result he said it’s not cancer. Then when I called him back to question his choice in prescribing me HU he said I do not have cancer. What would be the reason for him to say this? I am only finding out on here and other places on the web that it is in fact a form of blood cancer. Thanks again everyone!
Hi there.
What was his actual diagnosis? Did he tell you that you have ET (I can’t see where you have said this specifically)?
If you have an MPN then it is definitely classed as a cancer. About a decade ago Myeloproliferative Disorders (MPDs) were reclassified by the WHO as Myeloproliferative Neoplasms (MPNs) and therefore referred to as a blood cancer rather than a blood disorder.
Unfortunately there are health professionals who haven’t quite caught up with this! And those health professionals are best steered well clear of! Not surprisingly they also tend to be the ones who are least up to date with management and treatment practices.
The ‘C’ word is loaded. But it is really, really important to remember that MPNs are chronic, blood disorders and that well managed, MPNers tend to live out entirely normal lives (and die of something else entirely!)
On the upside, since MPNs are now regarded as blood cancers it means you are afforded some protection under disability discrimination legislation (certainly in the U.K.) and may be able to claim on critical illness policies etc.
Hope this helps.
All he said was that my JAK2 has mutated. He told me in a virtual office visit. At the time I wasn’t expecting bad news because the first time a had a visit with him he said he feels that I am ok since all my other blood counts from my CBC were perfectly and at the time a had really bad stomach problems. When I went to visit him in person for the first and only time there was a bit of confusion. When I was in the office they said I never went to the lab and that they didn’t have any blood work to review with me. They never told me to go to the blood lab, I was very confused. They decided just to get my blood there since I was already there. He said it should be about 2 weeks for all test to come back. He said I should have nothing to worry about, but that turned out not to be true. The he said just take on HU everyday and I will be fine. When I discovered that most people in my age range 43 and platelet count 617 only take a low dose aspirin at most I gave him a call to ask. He said I was correct and told me to not take the HU and only take the aspirin until my next visit in October. He said in October we can check to see my platelet count. After the virtual visit ended I got a call from his office for a visit to be set up in October. They informed me that the visit was going to be virtual again. I scratched my head because how could he take blood and check my counts if I didn’t actually go to the office. This whole thing has been a mess with him. From what I’m reading is all JAK2 mutation considered a blood cancer? If him telling me multiple times it’s not cancer is not true that’s another head scratcher from this guy. I’m just so frustrated. I think I need to see an MPN specialist. There is on near me in Philadelphia University of Penn. I’m just super confused and feel I don’t have all my information correct. Thanks!
I think you’re right .... you should go and see the MPN expert! I’m pretty confused by this guy too! You can have an MPN and not be JAK2+ but it’s the first definite marker for an MPN. It’s often normal practice to have a bone marrow biopsy as well just to be absolutely clear what’s going on and to provide a useful baseline to assess the disease in the future.
Given how difficult everything is right now with COVID and the fact consultations are being done virtually you need absolute clarity from, and faith in, your health professionals. Since you are relatively young and at the start of your MPN journey it is well worth getting very best of advice.
Dear Jbd,
I just wanted to tell you that I have been JAK 2+, with high platelets, for years and if it wasn’t that I have other health problems, I don’t think that I would know I had it.
Beacause I have had two TIAs, I take Hydroxycarbamide and aspirin. This is to keep my blood thin so that It doesn’t clot.
The Hydroxycarbamide is a cancer drug but it usually has very little side effects and does not stop me doing anything I want to do.
A person can live a normal life with an MPN, you just have to make sure you get your bloods checked regularly, by someone who knows what they are doing. i.e. a haematologist with a knowledge of MPNs.
The Doc. you are seeing sounds like he has no experience what-so-ever and this is probably making you fret more.
Speak to a specialist and i’m sure you will have a better outlook.
Good luck
Kind regards
M x
Hello Jdb123
Sorry to hear about your PV and condition. My heart goes out to you because I have experienced the fatigue, pain, and trying everyday to put a happy face on for the loved ones not to suspect anything .
I have had high HGB & HMT for almost 3 years and been seriously complaining to my doctor about serious leg pain at knees and arms always in the tendon area of attachment to bone during flare ups. My feeling was that my body should not have been aging rapidly in how I felt from age 49 to now 51. I am a building contractor and until 49 could out work a 21 year every day. My doctor felt high HGB and high HMT was from testosterone therapy treating low testosterone levels. Testosterone can be a conditional cause of secondary PV. Also, we felt it was an inflammatory problem because taking prednisone seemed to reduce issues when I would take it for poison ivy. I could go two weeks to two months and never have a problem. Last year I went to my doctor and told him something had to give, either figure out what was wrong with me, or start prescribing pain pills as my comfort of life was declining rapidly. Then, there was a lull and things went fairly well for 6 months.
This month things changed seriously all over my body. Pulsation problems as though I had a blood pressure cuff on started at my elbows. Now tendon pain has turned into pure bone pain. Self researching this sight, I have learned that is bone marrow starts producing too much red blood cells putting pressure on the bone and lining that I believe the tendons attach to the bones. Also, blood pressure goes high during episodes. This week, and II am still waiting, my doctor and adjacent office oncologist had Jak2 test done and still waiting for results. They have performed one phlebotomy and having 2nd one done tomorrow.
The aspirin treatment is to minimize a blood clotting and prevention. The key it seems to me is to get the RBC counts down to normal. One positive thing is during all my evaluations, I am still very muscularly strong although I have to push through with the discomfort. I had gotten used to the tendon pain, so I believe with getting the RBC down then the tingling, muscle and body fatigue will get better. The key to making sure you get better is to stay on top of your doctors, self educate, and learn not to take NO from doctors. Medicine is still very archaic. The Jak2 gene is a recent discovery that establishes PV so it may can help others get treatment or tested earlier in their life. I cannot say I am fortunate because I have been paying for preventive medical care which frequent blood tests are taken to make certain nothing is on the rise. My doctor in good faith has been working hard but nothing ever dialed in 100% for me because we were looking at other issues like wore out body from building houses.
I will prayer for you and your children. God bless you.
I’m 68, was diagnosed w ET in my late 40s, then PV in early 50s. I was on hu but it didn’t alleviate my itching so I’ve been on Jakafi maybe 6 years. I have had breast cancer, I walk five miles a day, run a magazine and write books. I say that the pv is indolent and assume it will stay that way. Of course you’re scared. Feel it and go thru it.
Newly diagnosed with PV JAK2 positive 
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Found Jak2 mutation with normal bloodwork
