inactivity

[johnnyjumpups]

Can anyone tell me what causes the "inactivity" related to ET? Is it the JAK2 mutation, the ET itself, or is it the hydroxyurea that I take that causes it? Thank you!

[JP1952]

I asked my haematologist a similar question last week. I asked was it the MPN or the Rux causing my symptoms and he said it was definitely the MPN. The Jak2 mutation is present in every blood cell not just the bone marrow and because blood is pumped throughout our bodies so all parts of our bodies are affected.

[johnnyjumpups in reply to JP1952]

Thank you JP1952. That does make sense. It might help me to not be so negative about taking HU.

[ainslie]

hard to say exactly but I suspect it’s a combo of all three

[hunter5582]

Fatigue is the most common MPN constitutional symptom. It is thought to be related to the overproduction of inflammatory cytokines. HU can also cause fatigue. Sometimes timing is the only clue as to what the cause is.

[Rem31]

I only have experience to go on. Crushing fatigue for over a year was the symptom that led to my ET diagnosis. Before the onset of fatigue my full time work was manageable and I was physically very active.

My Mpn is ET CalR and my platelets at the time were in the low 500s, never more than 650ish. I started HU on diagnosis and it made little to no difference to my fatigue.

A recent spell of iron deficiency added another level of exhaustion. My GP said low iron is not uncommon with a vegetarian or vegan diet and I’m vegetarian so that was a lesson learned.

I’ve found keeping up a good level of physical activity and fitness alongside pacing has been the best way to manage fatigue day to day but not always easy to do.

[johnnyjumpups in reply to Rem31]

Thank you Rem31. I remember just starting HU and feeling nauseated and very tired. Mornings were awful. It took a long time to get better. I do feel like the HU adds to my fatigue and feeling lousy. I became anemic after about 10 months and dr. had me take it every other day for 3 months to get my red cells back up. I felt so much better! I am worried about what will happen if I ever need to up the dose for my platelets. I am also vegan, have been for about 7 years now. Dr actually doesn't know I am vegan, but was pretty sure it was the HU that caused the anemia. Did you go back to eating meat?

[Rem31 in reply to johnnyjumpups]

I’ve been on HU for 11 years with a couple of small increases along the way. I remember my dread over the first increase but it was a non event and it knocked my platelets back to target. No two patients are the same so although we share various symptoms and reactions it’s difficult to compare with each other.

I completed a course of iron tablets and will recheck ferritin level soon. The awful exhaustion and feeling I’d aged 20+ years has gone so it must have improved but my usual Mpn fatigue symptom continues regardless.

Being iron deficient was a surprise but I’m not planning to add meat to my diet. I need to look into how I can maintain an adequate iron intake and I’ll be talking with my GP after the ferritin check about taking a supplement.

[johnnyjumpups]

Thank you Rem31, that helps. I have high cholesterol, so eating plant based seemed like a good solution, after trying other diet plans. My ldl cholesterol stays high though. I saw an mpn specialist who was answering patient questions, and someone told her that her hematologist said to eat more red meat when she became anemic. The mpn specialist said "no, do not do that." Basically that we have to be very diligent about our heart health, and more meat would not be a good idea.

Thank you for talking with me.