Lack of energy

[WeeHarry]

Hi All

I have MF with low hb 90 and platelets 30 at moment I am tired all the time. Age 79 and been treated since 2007 on Ruxolitinib 5mg twice a day and injections exprex and zarzio 3 times a week. I have transfusion occasionally. Is there anything you could recommend to boast my energy?

[Paul_1971]

Hey

I sympathise as having low HGB levels does impact your energy levels.

As I dont have MF (i have PV) its difficult to advise exactly, but hydration and excercise have always worked well for me. I have bleeds so do sometimes get low HGB (It was 4.7 when i was diagnosed) so i understand the challenges it brings.

I know excercise is tough when you feel tired, but it only has to be a walk round the block, some fresh air...it can make all the difference. Dont overdo it though. Do it gradually.

And the hydration, drink plenty of water. Dont substitute water with coffee etc. Doesnt mean you cant have tea of coffee, but in moderation and more fresh water than other liquids, tap water is fine. My sin is Alchohol here, i up my water intake when i have a drink.

Maybe increase it earlier in the day though so it doesnt impact your sleep patterns, which are most important.

Its probably stuff you are doing already, hopefully someone might have some more advice .

I would make sure you discuss it with your consultant, there may be something they can look at.

Hope you can find something to help.

Paul

[trotty100]

Hi WeeHarry

I am writing to express kindred feelings, no helpful suggestions, hopefully this will come from others.

I have just had my 84th birthday, diagnosed nearly 3 years ago with primary myelofibrosis.

I have been treated with increasing doses of Hydroxyurea and during the past year my hb. has been dropping currently 92, platelets 690. I’m told I have anaemia.

I am in the process of treatment change to Ruxolitinib, in a few days time .

I have been extremely tired ,trying to fight it only makes it worse, I have felt on the point of collapse at times.and have had to return to bed.

There are some days when I can walk ( around a mile) at a better pace and without getting breathless, these are good days.

I can only wish you well, hopefully better weather and fresh air will improve your energy levels..

Very best wishes

Margaret

[Mazcd Partner MPNVoice]

hello WeeHarry, I am sorry that you are experiencing this, and I would agree with the suggestions from Paul, exercise can help, even when you feel you don't have the energy to do anything, but a walk, even if it's round the garden, can help. The information on our website about fighting fatigue might helpmpnvoice.org.uk/living-with...

and lots of other suggestions under our 'ways to feel better' section

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

best wishes, Maz

[JediReject]

Hi WeeHarry, , is there a reason you are on a relatively low dose of Ruxolitinib given you have been treated for MF for 13 years. . Have you been on a higher dose and it's been lowering your counts. . Wondering if a higher dose say 10mg twice a day would improve your wellbeing.Regards - Chris

[Pte82]

WeeHarry, research thiamine for energy and to buffer creatinine . Magnesium is needed to make thiamine bioactive. Thiamine plays an important role with your digestive system and the creation of energy plus brain function. Always consult your health care professional before using any supplement.

nootropicsexpert.com/vitami...

eonutrition.co.uk/post/thia...

ncbi.nlm.nih.gov/pmc/articl...