ET

[lindabomba]

Just curious if anyone here has ET and if you have fatigue and if so have you tried Ritalin or anything else to deal with it? Thanks.

[hunter5582]

Fatigue is the most common of all the MPN constitutional symptoms. Different things work for different people, The use of stimulants is really not a good idea for dealing with this issue. That can cause more problems than it solves. We each have to find things that work for us. The MPN Voice site has some good tips.mpnvoice.org.uk/living-with...

[lindabomba in reply to hunter5582]

Thanks

[katiewalsh]

HiI actually avoid caffeine generally as I use it to help treat headaches & to refuel my energy around 5pm. Also I try to nap if I can. I do recall reading that some have tried Ritalin but can’t recall their experiences. Good luck.

[April-May]

I love coffee but confine it to just one at breakfast. Also found cutting out wine completely has helped. Drinking lots of water and a meditation tape at bedtime seems to work for me. (Don’t want to add more pills!) Good luck

[dancingfiend]

No, I just try to do a bit less, and maybe even take a nap (although avoid that as far as possible). Still working (invigilating school exams), walking and sea swimming (in the English Channel!) at almost 72. Would not be keen on taking a stimulant drug as Hydroxycarbamide and ET between them have enough side effects! The fatigue is annoying (and must be even more so for quite young you) but afraid it is a MPN side effect anyway.

[Andrew8]

I was diagnosed with ET in 2016, with some fatigue, but after 6 months on Hydroxy* , I experienced severe fatigue episodes, and then found to have abnormal heart rhythm ( known side effect of hydroxy ) then after another biopsy, re-diagnosed with MF, and put on Jakavi ruxolitinib. Much better but after a few months fatigue came back, and my heart meds were changed several times, but fatigue continued. I tried various vitamin supplements and found that magnesium and B12 have helped, with approval of my cardiologist and haematologist, which seems to have helped. So worth trying, as some of these drugs do deplete vitamin levels, but get approval from your specialists beforehand.

[Cja1956]

I am post Et Mf and have suffered from fatigue for many years, having been diagnosed with Et in 2008 and Mf in 2019. This past year I switched to a functional medicine doctor and she suggested taking D3, methyl folate, and b12. I also read that hydroxyurea depletes your magnesium, so I also take that. I’ve also gotten into a routine of walking on a regular basis. I also cut out most processed foods. My fatigue has improved considerably. I hope you try these other things before you take Ritalin.

Good luck to you.

[ladyanello]

I have tried Ritalin, both short acting and long. I didn't find it helpful - awake but exhausted. Gave me about an hour of productivity and major heart palpitations. Really unpleasant to me.

[Wyebird]

I do recall someone on this site posting a really interesting articLe on the Mitochondria in people who suffer from fatigue. It explained that those who suffer from fatigue their bodies take longer to recover/ reproduce the mitochondria.