Overall fatigue and muscle weakness

[Ridenez]

I have PV Jak2+ and was diagnosed in June 2020. Started with Phlebotomy and baby aspirin and am now on 500mg HU daily.My question is does the fatigue and muscle strength get better as time goes on.I try to walk at least 30 minutes daily.Thank you for your replies in advance.

[AirconBob]

Hi and welcome.I have had JAK2+ PV for 7 years, very similar medication etc. If I feel tired the I go to sleep - feel better when I wake. Muscle weakness comes and goes - I just make the best of what I have. I am still working at 70, though I select what I do and when I do it....

I decided at diagnosis that I wasn't going to be a slave to PV, I have kept things as normal as possible

Hope you stay positive and enjoy life within the limitations of our problem.

Regards B.

[Ridenez in reply to AirconBob]

Thanks for the encouraging words.Best wishes to you

[hunter5582]

You are asking a somewhat complicated question. MPNs can cause fatigue on their own. Treatment can help when this is the case. Phlebotomies make us iron deficient, but not anemic. This can still cause fatigue even when anemia is not present. In addition, HU is well known for causing asthenia (fatigue) and dyspnea (shortness of breath). It may take a bit of detective work to figure out what is what. First clue - when did you notice the fatigue and weakness started? Match timeline to treatment interventions/adverse effects.

It may also be more than one thing. The muscle weakness may or may not be from the same cause as the fatigue. Regarding muscle strength, note the following.

"The results of the present study were consistent with a study in which iron deficiency was associated with muscle strength without anemia (15). Several studies investigated the effects of iron levels and iron supplements on sport performance (16,17)."

jag.journalagent.com/ias/pd...

I also have PV. I was on HU for about a year, but had to d/c as I could not tolerate it. Toxicity even at very low doses. I have been on a phlebotomy-only regimen for over a year. I am now so iron deficient that my ferritin is at 6 or lower. I am having issues with fatigue, concentration, alopecia, damage to nails, and it is increasing the thrombocytosis +200K. I had hoped to participate in the PTG-300 clinical trial, but am too iron-deficient to get in to the study. Due to these issues and some additional PV symptoms, I am now considering a change to my tx plan. May begin PEGylated Interferon in the near future. I would like to get my iron levels closer to normal while still controlling the erythrocytosis,

Hope you get it all sorted out. All the best.

[Ridenez in reply to hunter5582]

Thank you Hunter for the very informative reply. I am relatively new to this and am I guess looking for some easy answers to which I don’t think exist.

[hunter5582 in reply to Ridenez]

Easy answers are elusive, but there are answers when you work at it. It does start to make a bit more sense when you start to understand the base science and underlying physiology. Knowing how hematopoiesis, hemostasis, and iron metabolism work and what is different because of the MPN puts things in context. Likewise learning more about pharmacology and the mechanism of action of each of our treatment choices.

I am sure you will get it sorted out. Just give it some time and put the pieces together. Meanwhile, all the best in dealing with the fatigue. Meanwhile, here are some tips from our friends ay Voices of MPN. mpnvoice.org.uk/living-with....

[jillydabrat]

I was diagnosed in 2015 and was given 2 phlebotomies and put on 1000 mg of Hydroxy straightaway. The drug worked immediately to get my blood levels normal but, like you, I have terrible fatigue, muscle weakness and the worst part is the joint pain. I live with the side effects because I couldn’t probably live without the drug, having had 3 blood clots previously. You learn what your limits are and you listen to your body xx

[Albt4z]

I was diagnosed with PV in 2015 a year after being diagnosed with Parkinson’s!! So the fatigue and joint pain symptoms are difficult to assign. I had venesections and aspirin at first but now on HU. I don’t know anyone else who has both. My Haematologist doesn’t. My Parkinson’s consultant is very good though and tests for various things.