Would love to get in input from others - as my HM team, seems to be unfamiliar with the updated data provided on the MPNResearch Foundation Page, NORD, and WHO. I was diagnosed in January, Jak2 positive, with numbers that have been above 400 for the last 5 years, but they didn't flag until this year. I had been asking why I might have been feeling flu like symptoms - that never lead to me feeling totally horrible but they are pretty consistent - daily. Plus the tingling or numbness is fingers - face, and lower legs..
My hematologist has put me on 2 baby aspirin a day.. symptoms the same. He doesn't understand the tingling or numbness - even though I was somewhat assured after finding this site and others with the same.. they make me feel like my symptoms are "Special" meaning they said they don't believe it's related. I was also recently scheduled for nerve testing ?? I find myself thinking.. what for? This seems to be something others have though I don't know if it puts me in more of a higher risk category - thus wanting me to have a sense of urgency about lowering my platelet count, even if it's not outrageously high compared to others... It feels a bit frustrating though I'm trying to stay positive.
Since my mom had a major stroke at 60 and a dad and brother, have had heart attacks before age 50, I am wondering if I am more in the moderate risk and if so, should I consider Hydroxyurea? I am not trying to push for something I don't need, rather I feel my dr's are not up to date and if I am in more of a moderate level, I personally like the idea of getting my numbers down and my symptoms hopefully gone!
As mentioned before, I'm 47, was active and have been told - only low impact exercise, though I have appreciated others sharing their physical fitness habits.. you all have been so encouraging - though I know situation is different. I also love to exercise more moderately - running, spin class, etc. They sort of freaked me out saying - no more of that.. but sounds like if they understood better - maybe they would have another recommendation.
My goal - to get #'s LOW /NORMAL - and then change insurance provider next year when I can find a specialist!
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JenngeetingR828
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I also suffered from numbness in my hands and unresolved ‘flu-like’ symptoms. This seemed directly related to the diagnosis of my condition (ET and Jac+.) In regards to hydroxyurea, it seems that the specialists in Australia are reluctant to begin this treatment if you are under 60. My count is around 1100 and I have been put on 1 aspirin a day. I hope this information is helpful.
Thank .. for the delayed response - I was traveling with limited access to the internet. Sure appreciate your input.
Hi Jenn, I feel you are you too young to go onto hydroxyurea. Like Maz said in Australia the age is 60 and here in NZ 65years. I am 66 and just on aspirin daily. Doing well with no symptoms of ET. As for the exercise I work out really hard with a trainer and attend the local gym. Not sure why you have to do low impact exercise? What is their reasons for that? My platelet count is 620. Lyn
Hi Lynn.. thank you. I was traveling and sorry for the delayed response. No idea why he said low impact exercise - my guess is bc he worried it might cause stroke or heart attack? So crazy!
In the UK the use of drug therapy is risk based. Your family history might suggest that your risk is higher than someone without that history.
It sounds as if your HM team is out of date. Can you find the name of the nearest MPN specialist and ask for a consultation citing your unease with your situation rather than doubting their capacity? If not, get copies of the material from MAZ (administrator) and give it to them, asking them to comment on the content. Take courage .... Sallie
Thanks Sallie. I am in search of an MPN specialist who will see me, outside of my current medical coverage group. It has not been easy.. I will keep at it.
You are young at 47 to consider hydrea. It’s not unheard of though!
It is possible that your symptom burden and family history may determine some cytoreductive therapy. However, the ‘elephant in the room’ is you need to have confidence in your haematologist to have this discussion, and from what you say I think that is lacking.
I can’t emphasise enough that you should continue to seek out an MPN expert - particularly due to your young age. Age doesn’t automatically put you into the low risk group, other factors have to be considered. An expert will be best placed to evaluate your medical history/symptom burden and above all gain your confidence to recommend the best way forward for you.
Hi Jenn, I’m a great believer in quality of life. Everyone is different and as such, MPN patients need their treatment to suit them. I’m no expert but in my case my pins and needles disappear when my platelets dropped below 450. Hydroxicarbomide suits me and improved my platelet count also quality of life.
Are you in the USA? If so, maybe the Mayo clinic can advise you of an MPN specialist.
Thank you Wyebird and everyone who has responded.. just a couple months into this and all the feedback from this group of people is what helps keep me going! I appreciate you all more than you know!! I don't know you.. but I pray for you.. every single one!
Oh sorry wyebird - Your words are encouraging and I can tell from them, you are a good person with a good heart! Hang in there.. what ever has you down... I hope you are able to find joy in something positive in your life. For sure - I'll keep praying for ya! In fact, I just paused while writing this.. and said a prayer for everyone that has been logging in and sharing their story, or their questions and feedback.
Thank you Jenngeeting, tomorrow I face dental surgery. It’s the 2nd attempt to remove my infected implants. It’s taken me 4 weeks to recover and now I’m repeating it all again. The surgery I know will further impact on my depleted HB.
Along with a steady increase in hydroxicarbomide resulting in even more fatigue. So I’m just feeling sorry for myself. Love hugs and prays to you too.
Well I survived. The second dental surgery was a breeze compared to the first and only took 2 to 3 weeks to recover apart from a sore in my mouth which is still there 3 months on. Albeit hardly noticeable. Unfortunately my Hb is still low now 104. It’s risen from 103. 1 point approximately 6 weeks after the second surgery which incidentaly didn’t impact on my eating.
So in true style after being seen 2 and 1/2 hours late I had a melt Down in clinic. After missing 3 tablets my platelets have risen approx 50 points.
I’ve even requested a councillor from Macmillan and contemplated withdrawing meds.
Macmillan councillor was great.
Last week I started to feel better. It’s like a switch got turned on. Still not where I was and still considering my options.
Thankyou so much for asking about me.
How are you doing? Where did you travel to. I do hope you had a good time. I’m off on holiday in two weeks time .
Wow.. you have been through a lot with dental surgery and sound like you are on the mend! Great to hear!
I traveled with my husband on his business trip to Prague. It was my first time to Eastern Europe and I loved it. The only challenge was keeping up with energy levels. It was new to me to recognize-the exhaustion I have been noticing over the last few years as my platelets were rising - and the extreme bone aches in my lower legs.. were possibly related to ET! (I had noticed such a change in how I was feeling - that I wondered if I might have a parasite or something from my travels the last five years for mission work in Nicaragua. I kept inquiring with my dr. And would send me for blood work and then say it was nothing. I was fine. However.. Because of those tests.. we had a benchmark of watching my numbers climb - unknown to me- from the low 200’s to over 600 now.
Anyway.. a blessed trip and now back and going to start trying to lose weight and see if I can help with the aches and low energy.
Oh I visited Prague 3 months after my diagnosis. It’s stunning. I was shocked when I saw a wall of graffiti, only to look at it in amazement when it’s significance was explained.
I think as time goes by, as my meds increase, when Hb goes down and platelets up my symptoms are worse. My aches are nothing more than the aftermath of a strenuous work out.
You and many others have pain, I’m so lucky, I don’t.
You take care I wish you well with your mission work.
It seems because of your age and no thrombic event and your #’s are not extremely high you are not in the high risk category that requires HU. However, I would be concerned that your Hemo does not seem to be knowledgeable on the symptoms of ET:/ I am 59 had a heart attack in November with platelet count near 1K, diagnosed with ET, JAK + in February and they started me on HU 6 weeks ago and platelets are still high @ 655. Dr increased the meds by 3 additional tablets a week and I will not see him for 2 months. I am hoping the platelets will come down to 400.
Hi mbr8076 - prior to your heart attack, did you have any prior symptoms? So sorry to hear about the heart attack and hoping you are recovering stronger than ever. Sounds like the platelets are coming down.. will pray they keep at it!
I had the itchy skin thing after showers but no other symptoms. When I was in the hospital with the heart attack my platelets were 1K and was put on aspirin and that did not reduce my platelets until started HU. Like you my father had major stroke at 61 and passed @ 62 and my mother had her first heart attack @ 60. They say ET is not hereditary but my dad had his first blood clot in his early 50’s. Thank you for your kind words of encouragement. I have been doing cardiac rehab and am feeling much stronger
Thank you for your input. It’s so hard to know whether to start but I feel anything that lowers the numbers are helpful.. especially given the symptoms I have. I am encouraged your story. Prayers for you buddy!
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