Hello Everyone,
I am a male 78 years old and have ET with JAK2 (Probably for 4 years, diagnosed 2 years.) Also had a heart attack and blood clot prior to being diagnosed. Taking Hydroxy 500mg every other day. Suffer from extreme fatigue. Any ideas to help improve the fatigue?
You all are a great and I appreciate the group!
Hello and welcome.
It sounds like you are experiencing some classic MPN issues. It can be tricky to figure out what is from the MPN and what is from the hydroxyurea. Headaches and fatigue can occur from either the MPN or the HU. Sometime the timing of when the symptom began is the only clue. HU can also cause GI issues. You already found that sometimes probiotics help. This is due to what HU does in the GI system. Glad to hear you found something that works.
It will help dealing with the fatigue to determine the cause. Suggest you talk in detail with your care team about your fatigue and how best to manage it. Meanwhile, here are some resources that may help.
mpnvoice.org.uk/living-with...
mympnteam.com/resources/man...
patientpower.info/myeloprol...
It is important to understand why the headaches are happening to manage them most effectively. They can occur as a microvascular symptom of the MPN. Some people find a higher dose of aspirin helps. Others find that the HU helps. On the other hand, some people find that the HU is what is causing the headaches. Suggest you review this with your care team as well.
The good news is that if it turns out that you are having difficulty tolerating HU, there are other options. I was not able to tolerate HU. I have done much better on the interferons (Pegasys/Besremi). They are more effective and easier to tolerate for me. Note that we are all different in how we respond to these medications. Some tolerate one and not the other. In addition to the two first line treatment options for ET (HU and Pegasys) there are second line treatment options like anagrelide and Jakafi. There are also medications in clinical trials for ET (e.g., bomedemstat, Besremi). We are fortunate that there has been significant progress in treating MPNs in recent years.
Hopefully your care team already includes a MPN Specialist. MPNs are rare disorders and optimal care is more likely from a provider that has this specific expertise. Just in case you have not seen it, here are two lists of MPN expert docs.
pvreporter.com/mpn-speciali...
All the best
Thank you so much for you helpful input. I’ve had migraines most of my life but had to cancel some of my other medication’s because of the So the headaches are back. Its really helpful to hear from you folks . I see my Dr next week who is a hematologist and oncologist and quite knowledgeable. Have a good day and thanks.
So sorry for your symptoms. As a 62 yo JAk2 ET I found the best for me was to force myself to do gentle exercise when I am most tired. (dog walk or treadmill). Also I went vegan and after some months of whole food plant based my energy levels increased significantly. a useful group of medics are pcrm.org/ Hope this helps. Good luck at your next appointment and in controlling symptoms.
hi I am 72 and had ET Jak 2 positive diagnosed 7 years ago. I too get headaches but have found 3 things affect how I feel. Lack of exercise, not drinking enough water and stressful situations. I'm not always as disciplined as I should be, stress is difficult to handle sometimes too, with all three but there's no doubt, for me, they make a huge difference. Good luck and listen to Hunter he helps us all.
Stress certainly seems to be a big factor, I too know this from experience.
Linda, I too find that stress makes me very tired. I'm trying to walk more and eat better. I was diagnosed with ET in January so trying to find things that make me feel better. I really do feel good most of the time, but occasionally, I feel very tire.
Thank You so much for your comments. Best wishes to you !
Exercise, and drinking enough water was the answer
for me.
Have a nice weekend
Thanks so much, i’m gonna try drinking more water.
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