Who has ET struggling every day??

[shiela23]

Who has ET struggling every day??

[LT55]

Hi Sheila - I am 56 years old and have had ET since 2015. I have noticed in the past few years that fatigue is more and more of a problem. I can manage it, but need to be very regimented about sleep (particularly getting to bed at the same time every night. And I cannot go-go-go anymore. I am still quite active (run, walk, tennis, golf), but I need to have down times throughout the day.

Saw a new hematologist yesterday (my prior one sadly retired). He told me that the fatigue is not due to ET?!?!? I don't believe him. All other tests/bloodwork are fine. And the MPN specialist I saw six months ago advised that fatigue is definitely an issue. Frustrating that the doctor I am supposed to rely on doesn't seem to understand ET that well. Sigh...

[Mazcd Partner MPNVoice in reply to LT55]

hi LT55, very frustrating that you were told this about fatigue, perhaps your consultant needs to read the information on our websitempnvoice.org.uk/living-with...

mpnvoice.org.uk/wp-content/...

best wishes, Maz

[LT55 in reply to Mazcd]

Agree, very frustrating. Thank you so much for the link - it is quite helpful!

[Bobadog in reply to Mazcd]

Many thanks Maz.I too am struggling more than usual with fatigue,at the moment,even though I lead a relatively ‘active life’.This link reinforces the things we may already know and should be doing (!) .But I realise that I have become more lapsed with managing the fatigue.

I hope it helps others too.

Bobbie

[Borage in reply to LT55]

Not the most inspiring comment from your specialist!The sudden fatigue is like hitting a heavier gravity where your limbs seem too heavy to raise, your eyelids won’t stay open, and you need to sleep.

[hunter5582 in reply to LT55]

That is a ridiculous comment. Fatigue is the most common constitutional symptom associated with MPNs. It sounds like this hematologist lacks the KSAs to provide proper care for someone with a MPN. Suggest consulting with a MPN Specialist.mpnforum.com/list-hem./

All the best.

[LT55 in reply to hunter5582]

I couldn't agree with you more. I saw a great MPN specialist in November. At the time, my thought process was to keep my regular hematologist (my original doc was wonderful), but use the specialist if/as needed relative to changes in my condition and new treatment. The MPN specialist is less geographically desirable, but I think worth it to avoid someone who is so completely out of touch.

[hunter5582 in reply to LT55]

Absolutely. I have two hematologists. A MPN Specialist about 2 hours away with whom I consult 2x/year. I also have a local hematologist who is a wonderful doc, but not a MPN Specialist, The local doc handles the ongoing care. The MPN Specialist consults on the care plan. This arrangement works great.

[EPguy]

Are you still on HU? What dose? Our unpleasants can be vague combos of the MPN disease and the meds that treat it.

My balance is not as good as it use to be, still functional but climbing trees for trimming the yard is slightly harder these days.

[kevmince]

I had been ticking along fine with ET on HU for 15 years until my mid 40s when I was hit with bad fatigue, at first I just put it down to post viral fatigue ,which I am prone to but after months of , an afternoon shopping requiring 2 days in bed ,GP did raft of tests which came back clear so I discussed with specialist nurse . They said ET can cause but so can HU, so we will wait and see. After a few more miserable months , since my blood results were stable in the middle of normal, it was agreed I could try reducing HU. This has to be done slowly or it can send things a bit mad with blood numbers . Anyway at a reduction of 0.5 g per week every six months over two years , I now take 0.5g every day and my every levels are mostly normal and my blood results are stable at the top end of normal.

I will say , you need to advocate for yourself , make sure your drs appreciate you are a whole person trying to live your life not just manage this condition. During the above HU reduction process, my usual clinic appointment was with a shiny new Dr instead of the specialist nurse with whom the reduction was agreed, and this baby doctor could not see past the blood count numbers "we don't want these going up" I was still in the normal range , my energy levels had improved with the last reduction , and this course of action had already been agreed , so I a naturally quite timid person had to point out quite forcefully that if it was a choice between a small increase risk of clots and spending my life miserable and unable to function I'll take the risk thank you.

So it can be a quandary when both the condition and the meds can cause fatigue, but your quality of life is important, so please try to remember that

[Murdoch01]

Hi Sheila I have had ET since 2017 and until the beginning of this year I was mostly fine. I now have bad pains in my legs, out of breath when going slightly up hill, dizziness and off balance, migraines regularly, sweating etc. just dreadful. Spoken to my Heamatologist who told me to see my doctor because it has nothing to do with ET or the HU. Went to the doctor who stared at me blankly, felt my legs, sent me for an X-ray of the lungs (nothing wrong), looked into my ears (nothing wrong) and sent me on my way. I have been trying to get a referral to a MPN specialist to no avail 😩rant over

[shiela23 in reply to Murdoch01]

I have the same problem as you … same symptoms.. my hematologist answer is the same as well… that’s I’m so confused 😮‍💨 I don’t know what to do. 🤷🏻‍♀️

[shiela23 in reply to Murdoch01]

How did you coped with the dizziness?

[shiela23 in reply to Murdoch01]

How old are you? What dosage are you on HU?

[Minu68 in reply to Murdoch01]

I have all those symptoms and my haematologist says it's definitely ET and fatigue added to by Hydroxy.

[KentBee in reply to Murdoch01]

Hi, I have JAK2POSITIVE ET and on Hydroxycarbamide , Aspirin and GP meds. When speaking to the Haematologist I always mention extreme fatigue and some dizziness but it is always brushed aside. Very frustrating. Like many others I have had to battle for 3rd and 4th vaccines, goodness knows if I will be offered 5th. Like many others I didn’t get the urgent PCR tests or info. All a battle.

[Murdoch01]

I am 72 years old and on 500mg Hydroxicarbamide during the week and a 1000 mg weekends. I am going to push until I get referred to an MPN specialist.

[hunter5582 in reply to Murdoch01]

Assertive patients receive higher quality care. Passive patients do not. You will only get optimal MPN care by consulting with a MPN Specialist. What some in the NHS have relayed that what worked was to contact the MPN Specialist directly and get agreement to see you. Then go back to your GP and get the referral. When the system does not work, work the system.

Suggest heeding Yoda's advice. "Do or do not. There is no try."

[Murdoch01]

Thank you Hunter I will push until I get proper care.

[yarrowleaf]

Hi !! I am fighting tiredness every minute. I'm eating healthily and get enough sleep. I do everything suggested , but still I'm totally stoned most of the time. My bloodcounts --all around-- are fine too.

With the tiredness comes depressions, which is quite normal, I suppose.

I also feel like I have all too little oxygen , but I have had several blowtests, which were fine them too.

Maybe it is our spleen and kidneys which are overworked by cleaning up continously after our injections ??

Hope we all will feel better when summer arrives

All the best !!