ET Jak2 and have been in watch and wait on 81mg daily asa. Diagnosed in 2023 due to fatigue (thought perhaps thyroid issue). Over the last year I have grown very fatigued impacting QoL with increased tinnitus, and some heart palpitations (never experienced this before). Concerned with being prescribed hydroxy and thinking the iron infusion maybe best start without hydroxy given while >1000 is high it is not above 1500 and no easy bleeding or bruising yet. Note platelets have been increasing year… read more
Hello Sarah. Dogs are great, I have two Jack Russell's of my own, no off switch, no removable batteries!
A good clean diet and regular excercise are considered recommended to all but more important to us.
A lot of study suggest a strong link between gut health (good clean diet) and the immune system. Excercise, particularly resistance excercise is also considered in support of the immune system.
The problem is, the meds we take reduce the immune system by virtue of the way they work. This isn't so bad when we're younger 50's-60's, but can cause problems as we run into later years.
Its also been suggested that the fitter we are, both physically and metabolicly they less side affects we're likely to experience.
Sadly, there are no certainties in medicine and everyone reacts differently, but it's certainly worth a try.
Hi I have jak2 mutation and PV, I started on hydroxy and aspirin in 2018 when I was 59 I didn’t have issues until a year later, some leg swelling and rash, I’m currently on Jakafi 20 mg twice a day and the aspirin, my blood has been stable. Day by day live your life
Thank you MH, JanetCardenas, and AndrewRudge I appreciate your feedback and insights. As there are no MPN specialists in Atlantic Canada having individuals like yourselves share your experience is helpful. I am thinking I will start the plan my hematologist is recommending and take it from there. I am otherwise healthy and try and practice good health habits (two large dogs keep me active). Hoping this helps resolve my fatigue and everything that comes along with it.
Sarah. I was also reticent about taking hydroxycarbamide but in the end my concerns had no basis, I was fine.
In my case they started me on a low dose, 500mg a day, and did blood every two weeks, in which time they studied how my blood reacted to the meds and also how I reacted to the meds, keep a diary of anything that doesn't feel right. If all goes well they may steadily increase the dose until they reach what is considered suitable for you.
If the hydroxycarbamide isn't working for you, there are other methods, other meds, a good diet and excersise also goes a long way.
Wishing you the very best.
Hi SarahTeal, I treat my iron deficiency with a heme iron (animal not plant based) supplement. My physicians know this. Plant based iron supplements cause GI distress. I purchase it on line. I'm not sure if the company ships to NS. Current recommendations for iron deficiency is a target ferritin of 100. The dose is based upon weight. Are your hgb and red blood cells in the normal range? I'm sorry to hear about your fatigue. I understand. Any fatigue I experienced or experience has/is never correlated with my platelet count. Some will say they feel better when their count is controlled. It's difficult to know if your worsened fatigue is due to your platelet count. I've always felt better when I've had a little more hgb, even a .5 point increase makes a difference. I do not think physicians', specialist or otherwise, believe me when I tell them. Well, I know they don't. re: platelets I see a very well respected MPN specialists. He told me that for some of his patients he sets a target in the 600,000 and sometimes higher. That's me. He is happy if my count is in the 800,000. I do not have any co morbidities for stroke/heart attack. But, I am Jak2 pos and over 60 years old. When is your next blood draw? Maybe wait and see if the count levels off. Also, my local hematologist will order a CBC for me if I'm concerned about my count. She doesn't require an appt, just the blood test. Is this an option for you? Finally, if you do decide to take medication I suggest a very low dose to start and possibly every other day. My comments are from my own experiences and what I've learned. Hopefully, you can speak with your physician about possible treatment and treatment goals and be part of the decision. All my best.