Tiredness

[Gunner73]

Hi all

I hope everyone is staying safe and well?

Just a question that I hope you might be able to help me with

I have ET and on interferon

I have been advised recently that my platelets are dropping below where they should be and have since had my peg dropped to fortnightly to see if this helps bring them back to normal. I have been on peg for about 6 years and coping well.

For about the last 3 months though I have been struggling with fatigue such as getting up in the morning with more aches and pains than going to Bed? During the day I am unable to exert myself otherwise it does me in and I need to rest. Most evenings now I am dosing on the sofa and when getting up off it it’s like I have ran a marathon but I have been shielding so I am not doing much to say I am tired out?

I am getting worried that if this is what I have to look forward to. I am only 48 and am quite fit as two young boys and cycling keeps me going but I am worried that if I’m like this now then what is it going to be like when I’m in my 60s

I’m hoping it’s because the platelets are lower than normal and when back on track I should be getting back to normality again.

Has anyone else had a issue like this??

Would be good to know to put my mind at rest a bit.

Thanks

[Mazcd Partner MPNVoice]

Hi Gunner73, I am so sorry to read that you are feeling so fatigued, it is a horrible feeling, I hope that once your platelets are at a better level you will feel better. It is good that you are still cycling as exercise does help with the fatigue, although when you are feeling so tired, any form of exercise is the last thing on your mind, but it does help to get moving around. I hope this gets sorted soon and that you feel much better, and hopefully when we are allowed out more it will help as well. Best wishes, Maz

[Gunner73 in reply to Mazcd]

Thanks Mazcd

[Mazcd Partner MPNVoice in reply to Gunner73]

you are welcome, and I've just realized that I didn't give you the link to the advice on our website about fighting fatigue, you will also see that you can download our fighting fatigue information leaflet, it might help.

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

[Gunner73 in reply to Mazcd]

Many thanks

[souplover in reply to Mazcd]

I just want to agree with Mazcd. I have PV and while my fatigue isn't as constant as what you're describing, the fatigue sometimes lands on me like a ton of bricks. It's not a normal fatigue.

It can feel like climbing up out of a well, like gravity just pulling you down. Still, if I manage to get moving, I usually feel a bit better. My hematologist told me, "Get outside. Get oxygen. Get moving." And I've found that hard as it is to push out of that fatigue, she was right.

[Otterfield]

What are your other blood counts like? I suggest you ask your haematologist about this; if you don't have an appointment coming up, is there a specialist nurse you could ring? Good luck.

[Gunner73 in reply to Otterfield]

Hi

Yer my other bloods are ok and I have mentioned it to the team, they have noted so we will have to see.

I am just wondering if I’m feeling this way because the count is low??

[hunter5582]

Fatigue is one of the known side effects of Pegasys. It can also result directly from the MPN. That can make it hard to sort out. You also mention aches and pains. Arthralgia and myalgia are also known side effects from Pegasys. Given that your platelets have dropped too low, it would seem reasonable to wonder if indeed your Pegasys dose needs to be reduced. Hopefully your change in dosing schedule will work.

Please let us know how things turn out.

[Gunner73 in reply to hunter5582]

Thanks Hunter and will do

[Ovingite]

Hi,Have you considered that your tiredness may not be caused by your MPN / drugs? I have ET and went through a period of intense fatigue a few years ago. My doc diagnosed vitamin D deficiency and prescribed high dose supplements. After a couple of weeks it was as if someone had thrown a switch and fatigue disappeared. I now take vit D supplements throughout the year and have no fatigue.

It might be worth looking into, particularly as lockdown & winter reduces our exposure to the sunlight that creates vitamin D. A simple blood test should tell if you are deficient.

Good luck and stay safe

John

[Gunner73 in reply to Ovingite]

Many thanks

[Trocken]

Hi, sorry to hear your feeling like this, I can sympathise I too am struggling with fatigue in the same way, I’m 40 and on hydroxy, I had a blood test last week because I feel as though my b12 is low again, interestingly it’s still in the normal range as is my Vit D? My platelets too have dropped into the normal range for the first time in 10 yrs! However I’ve spotted that my RBC is low and ferritin is borderline low, so something is going on. I thought I had the fatigue nailed for the past 6 months as I’ve been taking a vegan vitamin that has higher vit levels and have felt great, like yourself I wake up feeling like I’ve run a marathon and my body is so sluggish, the ‘mind is willing but the body isn’t’ it’s frustrating and worrying. I’ve come to learn theirs usually a reason for it as it’s not often my ET which I find fascinating. I hope you begin to feel more energised too, feeling groggy during half term doesn’t help either! Xxx

[Gunner73 in reply to Trocken]

👍

[Wyebird]

Hi I can’t help you but maybe it’s your platelets or indeed a deficiency in something else. Eg magnesium, b12, ferritin and a whole host of other possibilities. I think you need to contact your heamo. Good luck

[Gunner73 in reply to Wyebird]

Thanks for info

[IrishSarah]

Hi Gunner73,

How are you doing with the fatigue these days?

Did you manage to find anything that improved it?

[Gunner73 in reply to IrishSarah]

Hi Sarah

I’m still up and down but I have started taking vitamin D which helps

I’m back working now which doesn’t help as had so long off shielding, not used to the work.

Thanks