Tiredness

[April-May]

Recently diagnosed with PV (previously ET) I am finding tiredness a major problem. With ET I could manage if I stayed awake during the day and then I could easily sleep for 9/10 hours at night. Now I’m yawning all the time. Anyone else experienced this? Any advice?

[hunter5582]

Fatigue it the most common constitutional symptom for ET and PV. It is also a common side effect from hydroxycarbamide. It is likely impossible to be sure whether this is a HU side effect or from the progression of the MPN. Perhaps a change in medication would be helpful. Suggest you discuss this with your MPN care team.

There are techniques to help manage fatigue.

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

powerfulpatients.org/2023/1...

[April-May in reply to hunter5582]

Thanks Hunter appreciate your advice as always

[RoundTheWorld]

Yes - I also get v tired and hard to know whether the PV itself, treatment side effects ( I think recently iron deficiency after venesections is quite a contributor - timing fits), stress of diagnosis or other factors.

I have been more open with family and friends and they’ve been kind in adapting plans. My Haem tells me that I can hope to feel somewhat more energetic when treatment controls counts better, so I’m (usually) staying optimistic and in the meantime factoring in downtime and following the usual advice re sleep, food, light exercise, hydration etc.

[April-May in reply to RoundTheWorld]

Yes, I think you’re right that it’s probably the venesections. Over the years, I’ve adapted lifestyle and diet - now have no sugar, no wheat or dairy, - vegetarian, organic wherever possible, exercise as much as able - qi gong is my favourite - and try to stay optimistic and cheerful. This site is such a help as we all realise we are not alone and there is much to be grateful for.

[ainslie]

allegedly 92% of us with MPN have fatigue, venesections and or Hydroxy may well add to that. If the meds are working as planned you should be venisection free. Venisection definitely added to my fatigue, re meds it might be worth trying the others ie Peg or Rux to see if it’s the Hydroxy, also there is a view the other meds may for a subset have allele burden reduction ability which might be a good thing, and other bone marrow changes.

[30371madison]

April-May, I found that Hydration is the best thing to overcome the side effects from ET. That feeling of dragging a anchor behind you dissipates if you drink plenty of water. Hope you feel better.

[April-May]

Thanks, Madison. I agree and drink water all day long. Even have a water machine so it is pure and have cut out coffee - apart from 1 which I is my morning indulgence.

Stay well

[Tipsy2023 in reply to April-May]

Hi totally agree about hydration ,

dragging an anchor also paints a perfect picture ,

to whoever described it that way, it is often how I feel ..

That image will now remind me to drink more water…

as always realising there are others who experience and understand how it feels dealing with such a variety of symptoms is heartening . L

[mazeoffire in reply to April-May]

You might need electrolytes. I sometimes drink more than plenty and can’t quench my thirst, especially when it is hot. I have some plain electrolyte powder that I find really helpful.

[Loubprv Volunteer]

HiIsn't it odd how different we all are? I m 70.

I ve had pv for 16.5 years and up until last year was on hydroxicarbamide and about 3/4 venesections annually, and suffered no fatigue whatsoever.

Interferon didn't like me at all, am now on Rux and started to suffer fatigue for the first time about 4 months ago.....I just live with it, get up when I feel like it sometimes not until 10.30, walk around an hour to an hour and a half a day.

No processed food or drink, no caffeine, no alcohol. xx

[PupsBestFriends]

I have PV, and severe fatigue began soon after starting phlebotomies. Later I was prescribed Besremi, and even with counts in control and no more phlebotomy I have continued to have significant fatigue, much more pronounced than any "tiredness" I've experienced in my life prior to PV. Could be that iron deficiency was causing fatigue before, and Besremi could be causing it now.

Sometimes I yawn 3 times/minute for hours with tears streaming from my eyes. Coffee and short walks help me feel better, but it's no guarantee. Naps have provided no relief, so I just deal with it and watch some TV when I can't function since that at least keeps me awake.

[EPguy in reply to PupsBestFriends]

You hit the important detail I also emphasize. Fatigue of the pathological sort has almost nothing shared with being tired. When I had "just" PV I often felt tired, and a good physical activity fixed it for a while. With my 2nd condition I now understand. Fatigue is more about inability to function. Rest might help but sometimes can make it worse.

It's clear from posts on the Voice that some MPNs indeed suffer fatigue of this sort.

In your case, it is possible the IFN is adding to it. I had that.

[mazeoffire]

I have been suffering with fatigue since I was a teen. I was diagnosed with fibro 12 years ago, which explains the tiredness. Duloxetine actually keeps the worst of the fatigue and pain at bay. Then came Covid, Long Covid and raised platelets and I am even more tired all the time, limiting quite significantly what I can do. My sleep is rubbish as well, despite amitriptyline.

[April-May in reply to mazeoffire]

I so sympathise - not sleeping well is really awful. Sending a magic wand your way …