ET and Fatigue

[Bears23]

I have ET Jak 2+, recently started experiencing bad bouts of fatigue. All other bloodwork normal. Currently only taking aspirin. Doctor considering starting me on meds (based on symptoms-fatigue). Has anyone found any of the meds help with fatigue? I’ve read some posts that some meds cause fatigue? Any help is appreciated, thanks!

[Hidden]

I would loved to know why most patients have fatigue with ET and I have never experienced it. If you find out why, can you let me know?

[tifftriesit in reply to Hidden]

Be grateful. I didn’t have it at first either and now I’m selling my home bc I can’t afford to keep it without two incomes, and I’m going to stop working because I can’t do much at all. It’s awful.

[Hidden in reply to tifftriesit]

I am very grateful I havent got it because I have to work to at 68 to pay off a mortgage. I am only asking what causes it?

[tifftriesit in reply to Hidden]

From what I understand, it is caused by the body working overtime trying to make blood when it actually doesn’t need it. My dr related it to a car running it’s engine all the time on overdrive. Then it would eventually break down. What I don’t understand though is why I’m fatigued all days— even days following a phlebotomy.

[Bears23 in reply to tifftriesit]

Sorry to hear that. I also had to stop working, fatigue comes on quickly and wipes me out.

[tifftriesit in reply to Bears23]

Sorry to hear about you too. It stinks and is definitely not where I saw my life going at 41 but it’s a new reality. I’m doing the best that I can. I wish you al the best!

[Bears23 in reply to tifftriesit]

It stinks, but I try and stay positive, and enjoy the good days.

[Ginny70 in reply to tifftriesit]

Do you have critical illness cover? I claimed successfully. I have debilitating fatigue too

[Bears23 in reply to Ginny70]

No, live in the US. I retired early.

[Ebot in reply to Hidden]

50 million dollar question! It’s something we’d all like to know the answer to! There’s quite a bit of research going on right now trying to tease out what might be the cause of fatigue in MPN patients, how it manifests itself and why so many MPNers experience it to a greater or lesser degree. And in this mix, is the really interesting question, why do some patients say they never experience fatigue? It’s a complex picture. Will be fascinating to see what emerges.

[Bears23 in reply to Hidden]

I have had ET since 2008, never had any fatigue until recently. Very hard to explain but some days I am completely wiped out without doing anything. I’ve been an avid runner my entire life, some days I’ll do nothing and be exhausted.

[BloodZero in reply to Hidden]

My conclusion is that since blood is closely linked to our energy system in carrying oxygen and cleaning out junk cells and everything else its does. In us, its not working correctly, therefore our energy system is not working correctly. Our blood is abnormal, therefore our energy system will be abnormal.

The ways to gain more energy and endurance is the same for everyone with or without ET. Eat really healthy and exer ise.

But ET sufferers usually have to increase their exercise very gradually. I learnt this the hard way.

[Hidden in reply to BloodZero]

That sounds very reasonable, I have been very active most of my life and I feel with my career as a nurse, in my feet for eight hours has actually benefited me and my ET. Yes I get tired after work but I wouldnt call it fatigue. I sleep well and try to eat a good balanced diet. Off to aqua aerobics shortly! I will just continue to take my aspirin and keep stress at bay!!!

[tifftriesit in reply to Hidden]

Keep that up! It’s very difficult to even get out of bed for me some days, so if that’s working for you, do your best to maintain the consistency. I hope you continue to feel great!

[Ebot]

I have PV and meds (Hydroxy) worked for me. However, I am also no longer being venesected and I am also no longer iron deficient. I do still get fatigued but the iron deficient wipe out fatigue was something else!

Meds should improve your symptoms but sometimes that is not the case. And counts and symptoms are not always related. It might be worth considering the drug intervention. You can always stop.

[Bears23 in reply to Ebot]

Thanks!

[Ovingite]

Hi, I also have ET and have suffered from debilitating fatigue, which I put down to the ET. However my GP found that I had a large vitamin D deficit and put me on very high dose D3 supplement and bingo - my fatigue massively improved.

It might be worth asking your GP to run a test for vit D

John

[Bears23 in reply to Ovingite]

Thanks, how much D3? I will look into. My vitamin D was within range but on lower side.

[Ovingite in reply to Bears23]

My Vit D was 25 (normal = 80-150) so I was put on 2x20,000 iu tablets per week for 7 wks and then 1x1000iu daily (just increased to 2x1000 iu as vit D levels are dropping again). Hope that helps

[Bobthecob]

Hello, I have ET jak2 and have had the disease since 2000, it is treated with Hydroxycarbamide. I feel that the fatigue has got worse over the years, I am 57 now and have reduced my working week from 5 to 3 then 2 and now 1 day a week. This has had financial implications. At times the fatigue has been debilitating, after many visits to my GP I have been given vitamin B12, although I do still have fatigue and make lifestyle adjustments for it the B12 does help. Hope you find out what works best for you

[Bears23 in reply to Bobthecob]

Thanks, I’m in similar situation. ( 56 now). Tested for B-12 but that was good.

[Hidden in reply to Bears23]

In range is not necessarily sufficient. A lot of symptoms can develop many years before blood tests will show anything. Also worth checking your folate and ferritin levels .

[Bears23 in reply to Hidden]

Thanks, I will look into this. I know folate is good, but ferritin is on lower end.

[Hidden in reply to Bears23]

Ferritin is your store of iron and being towards the lower end suggests you might benefit from extra iron in your diet .( taken with vit c to aid absorption) Low iron can cause fatigue too.

With serum B12 I would suggest a level over 400/450 is best. If it’s within range but under this level you could try a sublingual methylcobalamin supplement .

[amhann]

Hello Bears23 - I am ET JAK2+ and like ovingite my utter exhaustion was found to be deficiency (as in through the floor)! of vitamin D (B12 was tested + ok) - now on a maintenance supplement + has made a huge difference. Very best Anne-Marie.

[Bears23 in reply to amhann]

Thanks, I will look into this. My D was within range; but on lower side. B-12 was good.

[XNICKYX]

Yes I suffer terrible with it. Its not a normal tiredness cant really explain it more like exhaustion some times when I have hardly done anything .

[Bears23]

Exactly, I’ve had ET since 2008, but this is recent, last several months. Sometimes I leave the house feeling fine, and a short time later completely wiped out and coming home to sleep. Never done anything like before. Not every day, but been hitting me a few times a week.

[clubdino in reply to Bears23]

This happens to me. I get ready and feel like I'm going to have a good day and an hour later I feel horrible and just want to crawl in bed. I also had to reduce my work hours to 30 hours a week. As far as what causes the fatigue I thought it had something to so with the cytokines that get all riled up when you have a MPN.

[Cja1956]

I was diagnosed with ET Jak2 positive in 2008, and Myleofibrosis this past year. I’ve always experienced some degree of fatigue but I also found that some medications made it worse and they had to be adjusted several times over the years.

[souplover]

I have PV and also suffer from fatigue. Usually I can push through it, but sometimes it's quite overwhelming and I can't concentrate on anything, can't even read.

That said, I'm doing a little better lately. I try to get more than 8 hours sleep if possible, using melatonin or CBD oil + lots of exercise. If I have to do something that requires concentration, I do it early in the day.

[Mardigras]

Hello,

I have ET Jak2+ and am on Hydroxy and aspirin. I get very fatigued. My age could have something to do with it as I am in my seventies, but I did ask my hematologist, and he said that some is down to ET itself and some, the medication. Since the meds are keeping my platelets down at the moment, I don’t thing I have any options.

Hope you feel better soon.

Kind regards,

M

[Bears23]

While I gave two good MPN doctors, I also understand who knows better than the individuals going thru it! Appreciate everybody’s experience(s).

[krotsida in reply to Bears23]

Very true.