Brain fog, fatigue and burning feet.

[KHardey]

Diagnosed with ET Jak 2 in August 2022.

Started on Hydroxyurea 500mg per day and 81 mg aspirin twice per day. My platelets have been high for years but ignored by Dr’s. Started having neuropathy in feet years ago, mostly at night and prescribed Gabapentin. Doesn’t help all that much. Now bottom of feet under toes are going numb. Last several months started having burning in feet. Almost intolerable. Seems to be worsening. Platelets are lowering and am scheduled to see MPN specialist in November. Also, very severe brain fog , which seems to bring on fatigue… strange feeling, like I’m not really present. Anyone else suffering from these? Are severity of symptoms related to level of platelet count?

Thank you for any input or ideas you may have. God Bless.

[Ayla13]

Hi KHardey,

I have had burning feet , especially felt at night for about 5 years before my diagnosis in 2020 . I still have hot feet now , but the symptoms are not as severe since taking Hu . During the day I can distract myself with walks and gardening . I take 1000 mg of Hu a day and aspirin only 3 x a week ( due to burning in my chest ) . My platelets were at 1.4 million and now hover around at 470 . So the Hu certainly has helped to get the numbers down . But it has also slightly brought down the red blood counts(3.05) and hemoglobin (119) so I believe the brain fog is due to the Hu because I never had that before taking it . I would be tired and could fall asleep easily but now some days I just need to close my eyes and shut off my brain so to speak even if it’s only for 20 minutes and I feel refreshed again . I’m 64 yrs and retired so having a short break here and there is not a problem . Daily walks have really improved my symptoms . Hope your MPN specialist will help you with your symptoms. Good luck !

[KHardey in reply to Ayla13]

Thank you for responding. So glad your feet have improved!

[Winchie in reply to Ayla13]

My platelets had been over 1 million for about 22 years because I was afraid to get on medication. Fortunately I didn’t have a stroke. I started getting symptoms three months ago and went on HU. I did have burning feet for maybe 3 to 4 years and my primary doctor didn’t know the cause, but evidently it was related to my platelets, I haven’t had burning feet since I’m on HU. My platelets had reached about 1.4 to 1.5 million when I started HU. The bottoms of my feet and toes would mainly burn in the evening, and I would put ice on them. The very last day that I went to the emergency room. My fingertips started to burn and I was dizzy and a strange feeling in my arm. I went on HU a couple days later. So far no burning in my feet or fingers and I feel much better. I hope it lasts. I wish you the best.

[KHardey in reply to Winchie]

So glad the Hu is working for you! Great news. Unfortunately it has not helped with my symptoms. We’ll see what the specialist has to say in November.

[Uzza]

Hi K,

Yes, I do have those symptoms, exactly. I take Duloxetine daily, helps not cure. I would imagine there is a link with platelets and exercise. The trouble is, fatigue and other conditions also make life difficult.

Cheers

Uz

[KHardey in reply to Uzza]

Thanks for the reply. I’ve been on Gabapentin, but doesn’t help very much. I’ll ask my Dr about Duloxetine.

[neela2020]

Many dont feel any symptoms having high platelet counts and there are many who feel otherwise and feel micro vascular symptoms ,dizziness and light headness with just a slight elevation in their blood counts. So it cannot be compared. I do feel medication reduce burden of symptoms and it does take a while to adjust. We are just worrying too much about side effects of these medicines and depriving us from a better life today. My approach is life is today and quality of life matters too ,So do not compromise on symptoms and start medication.

[Exeter21]

I had the brain fog exhaustion extreme gastric problems on Hydroxy. Taken off it at 6 weeks or I would have as massive weight loss. 4 months on nothing & now feel perfectly normal again . Have just started on Peg Interferon & hoping for less awful side effects Julia UK .

[AndyKay]

I take Hydroxy 2 500 mg per day and an 81 mg aspirin. I also have brain fog and fatigue. Spoke to my doctor and he said it was not the Hydroxy causing me to be tired. He wanted me to be tested for sleep apnea. I was tested and do not not have apnea. I think that when I get tired or stressed I feel the fog and fatigue more. I was diagnosed with ET in January. So far I've had more good days than bad ones.