Tiredness and ET

[Phojespa]

I’ve been on 1000mg of hydroxycarbamide since 2005 with steady platelets around 370

I always suffer with tiredness and headaches does anyone have any tips to combat this

Thanks you

[hunter5582]

The answer to fatigue depends on the cause. ET can cause fatigue, but so can the HU. Asthenia and dyspnea are common adverse effects from hydroxycarbamide. If it is the HU causing the problem, then dose titration or using an alternative may be considered.

Likewise with the headaches. Can be caused by the ET or by the HU. Solutions again depend on the cause.

online.epocrates.com/drugs/...

The MPNVoice site has a good resource on dealing with fatigue.

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

Hopefully you have a MPN Specialist n your care team. Suggest you review your symptoms and find a viable solution.

[EPguy]

Hunter says it well on tips for helping. I take it as generally good health habits are best, as for many other ailments, and such habits are important.

In my case my habits, health (other than MPN) , and blood numbers are all very good. I don't usually show it but but I have all the vague miseries of MPN and/or HU. Dizzy, numbness, malaise, headaches, GI, ok days and not-ok days.

Hope to find a solution by switching to INF and maybe combining with N-AC or low dose Rux to address inflammation. Many here, including Hunter, are doing well with INF (PEG).

My Dr proposed Rux, but I don't want that in its full doses. My Dr is ok working with me as Hunter has discussed. If Ropeg is approved by US FDA this week I plan to try to start that in the medium future.

I see many here from UK are on PEG, you may talk to your Dr about it. It may reduce your odds of progression also.

[jointpain]

Hi, depending on what your red and white cell counts are, ask your consultant if you could change or have in conjunction with the hydroxycarbamide, Anagrelide, this is supposed to just target the platelet count. My wife has MF and has been on 500mg hydroxycarbamide every other day and 1500mg Anagrelide every day, though just recently the hydroxycarbamide has been increased by 750mg a week, as her platelets had shown a slight rise in numbers to 370, as hydroxycarbamide has such a great effect on her, she has elected to take only an extra 250mg a week until her next FBC.You may not be offered anagrelide as it costs around £4 a tablet!!

But do ask about it.

[Anag]

Hi Phojespa!

I’ve regained my life’s energy by taking Acetyl L-carnitine Frim GEN German Elite Nutrition), also called ALCAR. It’s an amino acid. At first, I took 2 capsules (500mg each) in the morning and 2 at 3pm. I started getting a life again. I was able to do more and more and built up more muscle and endurance, first in the household, then in walking and exercise. Then I reduced to 3 a day, morning midday and late afternoon. I’ve been taking this since May. Will probably take it all my life. I also do CoQ10 100 mg from Terra Nova. (English product) best vitamin company! I get my supplements shipped to Austria.

This particular L-Carnitine passes the blood brain barrier and helps memory as well! Also helps repair the nervous system. 😁 the most important thing is that it helps our cells take up the nutrients we eat. CoQ10 helps our Mitochondria (batter packs in every cell) work better!

They are worth a try. Try one first and then you can add the other 2 weeks later to give your body a change to register what’s happening and You can see how you feel. 🙂

[Phojespa in reply to Anag]

Thanks for the advice I will look these up

[EPguy in reply to Anag]

Neat to hear of your success with the supplement. Others here have had some benefit with another amino acid, N-Acetyl-L-Cysteine (N-AC). N-AC is being studied for MPN. Amino acids generally are looking interesting for MPN.

I think CoQ10 can affect platelets, have you heard anything on that? I've hesitated to use it for that reason.

[Anag in reply to EPguy]

I’m starting on NAC this week once I get it! What a coincidence!! It also detoxes the harmful agents in The Pfizer vaccine, which caused me terrible leaky veins in my legs. I will not take it again. There is a better vaccine coming.

Apparently, CoQ10 at 200mg daily helps reduce thrombocytes. I now take 100mg. So great. There was a study posted a couple of years back. Check that out in internet. 👍😁

By the way, HU caused me Neuro side effects. Discoordination of hands, dropping things, bumping into door frames, door knobs, teetering, difficulties making even breakfast, not being able to get myself ready to leave the house. Nasty!!

[EPguy in reply to Anag]

Did you ever get to ask your Hem about the CoQ?

Look fwd to know if you find the N-AC any different than the Acetyl.

Are your bloods under control without HU or other meds? That would be neat.

For the Pf vax, mRNA is fully absorbed by the body in a few days, so it shouldn't be a direct cause of trouble after that:

<<Our cells break down mRNA and get rid of it within a few days after vaccination.Scientists estimate that the spike protein, like other proteins our bodies create, may stay in the body up to a few weeks.>>

cdc.gov/coronavirus/2019-nc...

But the antibody production for sure can cause certain discomforts. Have you seen other data of leaky veins with mRNA? It would be interesting. I've had 3 doses.

[Runner999]

How is your fluid intake? Not just water - all drinks plus fruit and veg all help with propesity to headaches

[Andrew8]

Hydroxy can effect your heart rhythm ( known side effect ) so worth getting an ECG. My heart rhythm went into AF after 6 months, now on Jakavi Ruxolitinib, but had to have several cardioversions to get back into rhythm. Also some of these meds cause magnesium loss, which can cause fatigue, so worth trying some magnesium supplements for a few weeks, should not cause any issue with ET or MF meds, according to my haemo consultant.

[Phojespa in reply to Andrew8]

Thank you

[Pte82]

Phojespa, hydroxycarbamide causes a loss of magnesium and adequate magnesium is needed to activate thiamine which together are needed to create ATP for energy in all cells of the body which may be a cause of fatigue. . Magnesium also keeps platelets from sticking together too . Krispin in the link below offers calculations for magnesium supplementing. The B vitamins work better together so if your using a B complex now look into supplementing with additional fat soluble thiamine like TTFD, Benfotiamine or Sulbutiamine. They can pass through the blood brain barrier and offer other benefits as well. One thing to be aware of are anti thiamine factors that have a negative effect on thiamine. The stuttersence link contains a comprehensive list. Consult with your health care provider before using any supplement.

ncbi.nlm.nih.gov/pmc/articl...

everywomanover29.com/blog/f...

stuttersense.blogspot.com/2...

krispin.com/magnes.html