ET related fatigue

[Morris941]

Hi my husband is 50 and was diagnosed with ET in January 2023 due to high platelets (917). He is overweight a little but other than that he does not have any other risk factors. All other bloods have come back normal. He is taking daily aspirin. We live in the UK. Since around September 2022 (prior to diagnosis) he was suffering with terrible fatigue and was coming home from work sleeping once he came home. He has been off work for the last 3 months due to prolapsed discs in his back so I know the pain medication has caused his fatigue to be worse. He is no longer on pain medication but his fatigue is still bothering him. Not to the same degree but it is there. He is due back to work next week and has just seen his haematologist who said that the fatigue could be linked to his ET but unlikely. I just wanted to ask if you can have fatigue from ET with no other risk factors or indicators? He is due to see his haematologist in the next 3 months and she has said that if the fatigue persists then they could start him on medication to reduce his platelets in an effort to reduce the fatigue. His current results this week showed his platelets in the 800s. He is worried that the fatigue will become extreme again once he returns to work next week.

[Cat1001954]

hi sorry to hear your hubby is unwell. I got diagnosed last august I was tired fatigued all the time everyday I’m on hydroxycabamide 500mg everyday. My fatigue is no where as bad as it was before. But it comes it knocks me out. At different times wish your hubby to get better in time and his fatigue gets less like min

[Cja1956]

Fatigue is definitely a symptom of ET. I have post ET MF, and I've been taking HU for many years. Sometimes that can make you tired, too. His platelets are high so that makes your blood sluggish. I take my HU at night to offset even more fatigue from the medication. But if you bring down the platelets, he may start to feel a little better.

[Ovingite in reply to Cja1956]

ET specialists recognise fatigue as being one of the most common quality of life impacts of the disease, but unfortunately many non-specialist hematologist are unaware. It is very important to keep well hydrated with ET, so drinking plenty of water may help but probably won't eliminate the fatigue. Vitamin D deficiency can also cause fatigue (it did for me) so it might be worth asking your GP to do a simple blood test.It's also well worth looking at th MPN Voice website as they have lots of excellent advice on coping with the effects of ET

John

[ET824]

I've had ET diagnosed almost 2 years ago now -66 years old Jak2 - fatigue was overwhelming before I started treatment with HU (platelets were 1.4 to 1.6M). I still hiked over 2 hours a day mostly but was wiped out by the end. It got better once treatment brought it down. For me I think regular exercise helps a lot - like walking more then an hour every day - working through the fatigue makes me feel much better then not exercising. I was also getting anemic from the HU but the Iron supplements have helped that as well.

Good luck.

[Solyesh]

Fatigue is definitely a symptom associated with ET (for me personally it is the most overriding symptom). I am the same age as your husband.

I am currently on Peg (started on HU but did not tolerate well and wanted to be on Peg if I needed to be on a cytoreductive medicine) - the Peg has helped somewhat but still fatigued at times. For what it's worth I haven't personally noticed a correlation with platelet level and level of fatigue but that might just be me.

My MPN specialist (and others on this site) suggest: hydration (super important) - exercise (the days I don't exercise I definitely feel more fatigued) - work on sleep hygiene (this has been the hardest for me - to try and get to bed earlier, get to bed in better conditions (no phone near bed; no TV etc.) - I also happen to suffer from insomnia (have for years before official diagnosis) so that hasn't helped - but I have found when I can get a nap in (not easy for everyone) it helps.

[Rem31]

Has his employer put a plan in place for a phased return to work? Going back full on from day one could be difficult to cope with.

[lynnieb]

I feel his pain. I'm 52, and my platelets are North of 1200. I am constantly exhausted, and have even fallen asleep standing up, falling over in the process! I only take aspirin as another medical condition makes it tricky to treat my ET. Trying to get help is a nightmare. Good luck

[Gaithersburg]

Hi there, I totally understand how fatigue can be a huge symptom of ET and that was why I was initially diagnosed at 27 as I thought I may have been anaemic. My platelets were 1,500. I am now 56 and have been on aspirin only and then Hydroxyurea with Aspirin and now Anagrelide with Aspirin. I know it sounds strange when you're exhausted but exercise really helps. Just start with a few gentle 30 minute walk a few times per week and you will see a huge difference. I am very tired today but off to play tennis in a bit and I know I'll be fine and feel better for it. My platelets are around 300 now and I still get tired but nothing as bad as initially. Do take a look at MPN Voice webpage. Look after yourself and remember you are not alone.

[Mirror368 in reply to Gaithersburg]

I was diagnosed in 2022 with ET JAK2. My hematologist just mentioned a possible switch from HU to Anagrelide. My issue with HU is headaches. I am reluctant to switch because I have Paroxysmal AFib and i have read it can cause heart palpitations, What is your experience with switch to Anagrelide?

Eileen

[Gaithersburg in reply to Mirror368]

Hello Eileen, I have been on Anagrelide since 2010 and haven't had any palpitations. We're all different - I do sometimes get headaches but my doctors thinks it's the Menapause and I do still get tired sometimes but on the whole I am doing well. Sometimes it's hard to know if we would have these other side effects as we age. Good luck with what you decide to do.

[Mazcd Partner MPNVoice]

hi Morris941, so sorry to hear that your husband has had this problem with his back, and the fatigue, which is very debilitating, we have some information on our website which might help mpnvoice.org.uk/living-with...

and as per the question from Rem31 about a phased return to work, hopefully your husband's employer has put this in place for him. Best wishes, Maz

[ChillyAsh34]

I find walking and plenty of water,and Mediterranean diet got rid of my fatigue and I have lost 1/2 stone in 3weeks I am 71 still working a few hours and a teaspoon of marmite a day on toast it's uck but has the B12 which helps

[Amethist]

sorry to hear he’s struggling. I was like that originally and that’s what took me to gp, then discovered ET.

I do hope his GP has excluded all the more common causes of fatigue. If not please ask for a blood test to test :Vit B12, folate ( folic acid), iron, vit D, thyroid tests. Can also be done privately if gp isn’t helpful. It’s important not to supplement before a test as this may lead to a false impression all is ok. I was deficient in a few things vit d and B12 in particular and since rectifying these, I have no more fatigue, despite having really high platelets.

good luck

[Melaniem59]

Dear Morris 941

I think we all suffer the fatigue, not sure if it’s been mentioned already but the Mediterranean/anti inflammatory diet helps me have more energy for work although I have taken part time at 52 which I didn’t plan to do

Hope your husband finds a way through back at work

Kind regards

Melanie

[ainslie]

fatigue is number one symptom in MPN, it’s concerning your doc didn’t acknowledge that , for some meds can maybe reduce fatigue or actually increase it.your Haem may not be optimal.

Theres not a lot we can do about the MPN fatigue, exercise helps even if it seems hard at the time. People with MPN may have other causes of fatigue just like other non MPN people. So no harm in checking that with GP , it’s a big subject but maybe worth checking thyroid etc and B12 and other vitamins

[Morris941]

thank you everyone for your responses. These have been so useful and confirmed what I thought. He is going back on reduced hours and will see how he goes.

[hunter5582]

As others have commented, fatigue is the number one constitutional symptom associated with ET and the other MPNs. It is not, however, cased by having too many platelets. It is more complex than that. Deregulation of the JAK-STAT pathway can cause more problems than thrombocytosis. The JAK-STAT pathway regulates more than hematopoiesis. It also causes the overproduction of inflammatory cytokines. It is this upregulation of the JAK-STAT pathway that causes the secondary symptoms, not the platelets themselves.

Some of the medications that are used for cytoreduction (e.g., hydroxycarbamide, Pegasys) might help with the fatigue, but they can also make it worse. Cytoreduction is usually not used for low-risk ET unless the person is symptommatic. There are other interventions that can be tried prior to imitating cytoreduction. Mazcd already provided a great link. Here are a few more.

patientpower.info/myeloprol...

mympnteam.com/resources/man...

There are other reasons we can experience fatigue, including nutritional deficiencies. We can ill-afford to be deficient in Vit B, iron and other nutrients critical to energy levels. It is worth doing a nutritional analysis to determine if it is a contributing factor. His GP should be able to help with that.

It is also important to consult with a MPN Specialist to ensure that he receives optimal care. MPNs are rare disorders. Most doctors, including hematologists, have little experience with them. Here is a lit of MPN expert doctors. mpnforum.com/list-hem./

Wishing you and your husband all the best.