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Real members of myMPNteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Do You Blame Your Fatigue And Brain Fog More On Hydroxyurea Or ET (high Platelet Count)? Which One And Why?

Do You Blame Your Fatigue And Brain Fog More On Hydroxyurea Or ET (high Platelet Count)? Which One And Why?

Hi I'm just starting on this site. I'm trying to figure out how to be less fatigued and more clear-headed so I can do my desk job well.

I would like your advice on what would make me less tired:

I learned that essential thrombocythemia (my marrow produces too many platelets) often causes fatigue and light-headedness. In fact a study found this is experienced by 64% of people with ET. But I also read that fatigue is a common side effect of taking hydroxyurea, especially after increasing… read more

posted November 26 (edited)
A myMPNteam Member

I suspect it's the hydroxyurea dose. I had to stop taking it because of skin ulcer side effects, and do feel a bit less fatigued. Now relying on aspirin until am able to see a specialist. RBC keeps… read more

posted 2 days ago

How Do You Thank Your Family And Friends For Their Support?

How Do You Thank Your Family And Friends For Their Support?

posted November 23
A myMPNteam Member

My husband has read so many articles on PM that he could write a book. I am so thankful everyday for him. His family is also a big support as we have always been close. I thank them all often and… read more

posted 5 days ago

Cancer Insurance

Cancer Insurance

I was diagnosed in May. I had forgotten about a cancer policy which I’ve had for 50+ years. Has anyone filed on theirs with ease. I sent my claim off Nov.1 and yet to hear anything back. Assuming this is Cancer, will they accept my claim? I read that it was only classified a couple of years ago as such

posted November 20
A myMPNteam Member

Linda yes I am in Pittsburgh PA

posted 4 days ago

ET Symptom Of Neck And Throat Stiffness And Rigidity?

ET Symptom Of Neck And Throat Stiffness And Rigidity?

Hi Everyone
I was diagnosed with ET 6 years ago (2016). My hematologist started me on 500 mg of hydroxy daily for 6 months and then increased my dose to 1000 mg daily since my platelets were not decreasing. We are still playing with dosage as my platelets are all over the place. My symptoms…which are many have escalated during the last few months which is frustrating. But one I have not read about and am experiencing is extreme neck and throat stiffness. It feels almost rigid. Has anyone else… read more

posted November 19
A myMPNteam Member

Yes, I have neck, throat , shoulder stiffness as well, but I have RA also.

posted November 20

Does Anyone Have Schwannomatosis NF3, I Have Had It For Over 50 Years, Just Someone To Swap Symptoms Compare Effects, History Of?

Does Anyone Have Schwannomatosis NF3, I Have Had It For Over 50 Years, Just Someone To Swap Symptoms Compare Effects, History Of?

Maybe even make breakthroughs in the treatment of this? I have a personal specialist for this condition, it was finally diagnosed in 2017, by a neurologist subsequently now my specialist! I have noticed a few effects, not really listed in accepted lines of Schwannomatosis NF3 symptoms! I also have Juvenile Myoclonic epilepsy, which 'started' the same time as symptoms of NF3, could they be indirectly related? They both started in 1970, when I was aged 14, I am now aged 66, male, and retired!

posted November 19

Just Curious If Anyone Else Has Tried Besremi (ropeg Interferon)?

Just Curious If Anyone Else Has Tried Besremi (ropeg Interferon)?

I tried it for 2 months and it was horrible for me, mainly due to the aquatic pruritus it caused me. It felt like fire ants for 20-30 minutes after most showers, even a luke warm shower. In addition, I had frequent flu-like symptoms and heavy fatigue. My blood responded very well to it, but I couldn’t tolerate the side effects. So far my best medicine has been heavy daily exercise to keep my HCT low and avoid phlebotomies.

posted November 14
A myMPNteam Member

So sorry to hear Jan. Yeah Besremi is rough :( No easy answers with our disease.

posted November 20

Anyone Out There Getting Treated For PV With Ropeginterferon, (Besremi),

Anyone Out There Getting Treated For PV With Ropeginterferon, (Besremi),

What side effects are you having and how do you mange them?

posted November 8
A myMPNteam Member

Same Here Side Effects are Tough! Going back to Pegasys.

posted November 21
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