I have JAK2 ET and MPN: Anyone else have these symptoms?

Well, I’m 77 so pregnancy isn’t an option! But, it made me chuckle.
I was diagnosed with PV/JAk2 about 5 years ago. Take 1000mg of HU daily.
I’m sure many of my symptoms/complaints have as much to do with my age as PV. But, I am relatively stable so much so I now go for blood test every 60 days. When my hematocrit reaches 43 I can feel it and know I need a phlebotomy (despite having a couple of nurses tell me I didn’t!)
I’ve also taken thyroid med for at least 30 years and it has rarely fluctuated. But, fatigue being the worst side effect of HU, I didn’t realize my thyroid med needed adjustment, I was searching for a GP and when I finally found one, she ordered TSH and my med was adjusted. Well, it was like someone flipped a switch! I actually had the energy and desire to get some things done!
So, I’m just throwing that possibility out there and it’s easily checked.
And, having despised exercise since I was a kid (always preferring a quiet space and a good book) I hate that it actually helps overall and, specifically, with the fatigue.

pegasys injection and thank you for your kind comments...yes for a good while I honestly thought I was pandering to the fatigue and in ways was almost a relief to be given a valid reason...

Hi @cathy8 It’s really encouraging to see that your new interferon treatments are working to lower your platelets. It’s nice to have different treatment options!
The best news is that your hemoglobin is rising back closer to a more normal range. 10.4 is still lower than the average of 12-16. but way better than your reading of 8. Wow, no wonder you were so fatigued all the time. Now with an increase in red blood cells, there will be more circulating oxygen available. That will really make a difference for you.

Thank you for the update! What is the name of the interferon medication you’re taking?

Hi just a quick update on my treatment, I was diagnosed with two mutt Jak2 and Calr , apparently to have one is ok but two is very unusual...my platelets were over 700 and haemoglobin dropped to 8 mg. Fatigue was the worst aspect. I was on Hydrea for some months with no real affect, I also had 3 transfusions to help the anaemia. Subsequently I've been taken off the Hydrea and now inject weekly with interferon 150 ml and once every three weeks with Aranesp 300 ml, the platelets have started to come down and the haemoglobin has come up from 8 to 10.4. it's still early days and the chronic fatigue is still there but at least the bone marrow is functioning a little better...hope this is of help or of interest..my final diagnosis was MPN ET

Hi @hudson2019 The use of hyperberic chamber treatments for Lyme’s diseases is gaining recognition. I live in an area of high instances of the scourage and have heard positive comments from the treatment. Instead of typing out what I know, I found a good article for you with all the information.
https://www.nationalhyperbaric.com/hbot-treatments-and-conditions/lyme-disease
I’m just happy you found a doctor who takes Lyme’s disease seriously. If you try the therapy, please report back on your progress!

I’m so sorry to hear that your wife passed from AML with FLT3 mutation. I had the same leukemia in 2019 and it was an incredibly challenging ordeal, including a bone marrow transplant. Despite efforts by both patient and supporting oncologists, AML-FLT3 can be a difficult disease to treat. I’m very sorry for your loss.
So you’ve been having to face your new health issues flying solo. Do you have a support system nearby with family and friends?

Good morning I have the CALR mutation. I think I'm going too try the IV Antibiotics with the Hyperbaric chamber any thoughts on the Hyperbaric chamber. I also think Stress plays into this, yes my Integrative medicine Dr thinks that might of flipped the Switch for me the Lyme Disease Cancer Dr says nothing, my wife passed away from Acute Myeloid Leukemia with a FLT3 gene in 2020, so I question a lot of things.

Welcome, @hudson2019. You’re certainly having your share of medical drama the past couple of years. Lyme disease can cause huge variety of issues in the body so I’m happy to see that your doctor is taking this seriously. Lyme disease is finally getting recognition and treatments are more forthcoming.
It appears the HU is helping reduce your platelet level as anticipated. I hope you continue to improve and that the Lyme Disease treatments are successful for you. Did your doctor feel there was any correlation between the elevated platelets and Lyme or is the ET due to a genetic mutation such as the JAK2 gene?

Hi I was Diagnosed with ET in Jan 24im on Hu 1000mg day I also was Diagnosed with Lyme Disease in May 23platelets over million than platelets now 665been treated For Lyme Disease oral Antibiotics for two months Lyme still there Dr Suggests intervenous Antibiotics with Hyperbaric Chamber 6wks. I have no Symptoms of either Disease but trying too get platelets Down and the Lyme Disease too.

I too have found that heavy exercise really helps. I returned two weeks ago from an 9-day wilderness backpacking trip with four long days (10-, 11-, 12-, and 13-miles) of hiking between camps, and feel completely restored. I'm sleeping better and can work through the afternoon fatigue with an occasional short nap and by going out and tackling gardening chores in our southern heat and humidity. I've been on hydroxyurea intermittently for 18 months, finally getting platelets down to 469,000 taking 500mg daily.

Ive been diagnosed with PV one of the MPN'S and I could tell something was wrong because my cell numbers were increasing over time and was told dehydration several times..Finally the numbers went over normal so I made an appointment with a hematologist..He knew without the Jak2 it was PV but did the Jak2 which was positive. My problem with this hematologist is when I asked questions if he didn't like it he'd say "don't ask questions like that" well that was the last visit with this guy. I'm with another Hematologist at another facility who wanted their own Jak2, bone marrow and lab work and who has made me a partner in my care. I wouldn't think twice about changing hematologist's if your not getting answers..Your symptoms sound troubling to me. I'm 76 you're a young mother, please consider getting into the weeds and find out what's going on....I'm from the medical profession and know how to navigate the system, they don't intimidate me....Don't except what you know is not right. Your inate self is almost always right. Good luck.....