Questions and more questions! JAK2 617v ET

[MPNJunebug]

Good morning!

It has been a while since I’ve posted. I’m working with a wonderful Hematologist/Oncologist who specializes in MPN. I have ET and started Hydroxyurea 500mg. So a low dose. Started on 10/28. I believe I’m tolerating. I have bloodwork 12/11 to see what my numbers look like. I’m 56 and the exhaustion is unbelievable. I was always the energizer bunny and now I’m barely a turtle. How do you deal with it? I try and walk for fresh air and energy to push myself. That doesn’t seem to be effective. I’m taking b12 with hopes that will help. Any thoughts or suggestions? Is this my new normal? Does this ever lift? How do you work with it? I don’t want to let the exhaustion win.

Thank you in advance!!

[Hbm1]

Vit B12 has helped me enormously. But…and a big but….tablets weren’t working because I believe that hydroxycarbamide (and certain other drugs) affect the body’s ability to naturally absorb B12. I therefore asked my GP for an injection and it more or less changed my life as far as energy and mood. Worth giving this a shot…no pun intended! It also worked extremely quickly, I felt a really noticeable improvement in two days. Best of luck.

[JAB6]

Exercise and increasing protein in diet has helped me immensely.

Best to you

[Hopetohelp]

thank you for posting. Sorry I can’t help but I will probably be starting hydroxy soon so am interested in seeing your replies. I hope you get the energy thing sorted. Good luck

[hunter5582]

Sorry to hear about the issue with fatigue. this is the most common constitutional symptom people with MPNs experience. It can also be a side effect from hydroxyurea. Sometimes the only way to tell which is which is timing of when the fatigue began.

Vitamin B can help if Vit B deficiency is the issue. I was found to be Vit B/Folate deficient and did start on supplements for this. We titrated the dose based on my measured response. It os worth noting that other nutritional deficiencies can also contribute to fatigue. It is worth having a complete nutritional analysis done. My doc ordered the NutrEval panel. gdx.net/products/nutreval

There are some things you can do to help manage the fatigue. Here are some resources.

mpnvoice.org.uk/living-with...

patientpower.info/myeloprol...

youtube.com/watch?v=lGVvbTc...(Not working as expected?)