fatigue

[Maxpenny]

was diagnosed with ET and Jak2 in October 2023. I have been on Hydroxycarbamide, 500 mg per day and 75 mg aspirin since then with platelets decreasing to 310 last week. Been not too bad until encountered the fatigue which I find overwhelming. It surprised me how it just suddenly happens and how debilitating it is. Joint pains in hands and arms but it always reassuring when you read here you are not alone . So the is to all who share it always helps someone.😎

[Mostew]

maybe discuss with your team wether you could try taking Hydroxicarbamide every other day and see if it helps with tiredness.

Also alternative medication that may suit you better.

Would a nap during day help ?

Hope you find a way to handle it…

[Mazcd Partner MPNVoice]

Hi Maxpenny, so sorry to hear that you are experiencing fatigue, it can be very debilitating, we have some information on our website to help fight fatigue, it might help mpnvoice.org.uk/living-with...

[Spanelmad]

I know what you mean it's like you suddenly hit a wall and then I'm asleep for 2 hours and I'm ok to go again!But I'll be fine for a week then zonc out every day it's very frustrating but years of RA mean that I've learned to do what my body needs and pace myself

[Maxpenny in reply to Spanelmad]

Yes that’s it exactly what happens I sometimes lie down but don’t sleep. It just feels weird. I don’t know what my body needs I expect time will tell. Thanks for that it helps when someone is the same. Nurse said it was from ET and the medication so if that’s all I have to suffer…. Good!🤞🤞

[Spanelmad in reply to Maxpenny]

Are you able to extend the time between taking the tablets now that you are within normal blood ranges.

[Maxpenny in reply to Spanelmad]

Not so far I hope if still same in 11 weeks that may happen, that is appointment at hospital this time. They were really pleased with all bloods so fingers crossed.🤞

[Spanelmad in reply to Maxpenny]

Results are really good now and at a face to face appointment you can really get the fatigue across.Have a good weekend

[TLJ-1]

I have been taking two of the 500-mg per day hydroxycarbamide capsules for the past two years for my MF. The fatigue is not normal tiredness: for me, I hit a wall in late morning every single day so I’m rather nonfunctional by noon. A 45-minute nap helps a lot, but I still feel like my arms and legs are made of lead until it starts to ease after 2-3 PM. The drug itself causes some tiredness, so I find it better to take the capsules at night.

Good luck on dealing with it!

[Spanelmad in reply to TLJ-1]

For me it's the same feeling but I'm on interferon

[Ipadlin]

I’m in a similar position, having started on hydroxy in Nov. 23. People talk of the tiredness having a pattern, but I haven’t recognised one yet. I just suddenly realise I’ve done too much! There doesn’t seem to be a fix it’s more a question of learning to live with it. Compared with others experiences, it feels like a small price to pay, though perhaps that’s easier to say when you’ve been retired for a while as I have.

[ChillyAsh34]

Hi maxipenny I had very bad joint pain in leg and back and tired when I first took hydroxycarbamide for about 2 month then I decided to see what may help me I started with 5000 steps a day not in one go but all day including shopping etc then as I got fitter ,I upped it to 10000 a day before I knew it the pain was gone the tiredness went never returned up to now that's 3 years that is what put me in good recovery the surgeon said and I didn't need painkillers after surgery as I ached but no pain as such we are all different you will find what works for you hope this helps a bit I also had a very sore mouth but wisdom mouthwash sorted that one .it took a year for my body to get use to taking hydroxycarbamide pace yourself have a nap don't beat yourself up if something is not done .and speak to your health team as some people it doesn't agree with them hope you are well soon

[Maxpenny in reply to ChillyAsh34]

I try to do my 10000 steps every day if I can yes feeling the fatigue is a small price to pay. Thanks

[ChillyAsh34 in reply to Maxpenny]

I hope your joints and fatigue settle down soon ,thoughts are with you

[Maxpenny in reply to ChillyAsh34]

Thanks I appreciate that it’s good to know that it seems to even out this morning bad but after lunch started to feel much better.

[laylaloulou]

Hi Maxpenny, I was diagnosed with ET in Feb 2022, I had a blood count of 1450, I was recovering from a pulmonary embolism at the time. I was given 500mg of hydroxy for a year then on three days it was increased to 1gr.. My blood count is now 475. I too suffer from fatigue. I found taking the capsules in the evening helps with the nausea and fatigue. I still feel it in the morning but it has improved by lunch time. I also have the pain and stiffness in my joints but that is more on the days i take 1 gr. I find drinking lots of cold water during the day and some during the night helps also going for walks.. I am 76 and look after my husband who had a severe stroke 2 years ago. He has carers coming in four times a day but I still find it very hard.. my family are very good but I think it is quite hard having an invisible illness.. I hope you feel better soon and you have support

[Maxpenny in reply to laylaloulou]

It’s strange our circumstances are similar my husband had stroke 4 years ago during lockdown which was incredibly difficult as not allowed to see him. He was in hospital for a month as you say invisible handicap makes life difficult and now we have an invisible illness. I think I might have to change my time of day to take medication. Thanks