Body twitches

[Luvlyhubby]

My husband (73) was diagnosed with PV with Jak2 6mths ago,after annual blood test (had them last 20yrs after heart attack) showed High Haemaglobin. Referred to Haematology ,where his doctor is amazing. Had 3 Vinesections prior to diagnosis,but then prescribed Hydroxycarbamide. After 5visits adjusting his dosage, finally got bloods/platelets under control 3wks ago, & dosage is 500mg each day, said she would see him in 10wks. He has remained as fit & well as he was 30yrs ago (SO thankful). Unfortunately, the last couple wks his body twitches,but only when he's fast asleep. He doesn't realise as it doesn't wake him. Always takes his med around midnight so wondering if it could be that. First time posting- hope I have gone on too much!

[hunter5582]

Hello and welcome.

The short answer is that muscle spasms (tetany) or twitching seizures are a possible hydroxycarbamide (hydroxyurea) adverse effect. mayoclinic.org/drugs-supple... What you are observing may or may not be related. Suggest that this issue be reviewed with his MPN care team.

[Luvlyhubby in reply to hunter5582]

Many thanks for quick reply. I will contact his team

[Inclement]

My husband often twitches in his sleep, sometimes quite violently, which wakes me. However I am the one taking hydroxicarbamide for PV! So be aware that not all symptoms are MPN related.

[Luvlyhubby in reply to Inclement]

Thanks so much for your reply. I do overthink things (Hubby doesn't). He is so well in himself,so will contact his Dr just to put my mind @ rest. Really hope you're doing ok🤞

[mhos61]

Another thought to consider is ‘restless leg syndrome’ related to iron deficiency from the venesections.

My hubby has RLS but his is associated with Rheumatoid Arthritis. Notably, it doesn’t just affect his legs, his arms and body can twitch quite violently at times when sleeping. It affects me more than him, he usually sleeps through unless a particularly violent jerk wakes him up.

Abstract. Introduction: “In polycythemia vera (PV) patients undergoing phlebotomy, iron deficiency (ID) may develop. ID has been linked to restless legs syndrome (RLS), and in one study, 29.6% of PV patients had RLS”.

pubmed.ncbi.nlm.nih.gov/377....

[Luvlyhubby in reply to mhos61]

Many thanks, for your reply. All this info really helps

[HuckleberryH]

I had nighttime muscle spasms (restless leg syndrome?) when my ferritin level was really low after weekly phlebotomies. It was such a strange phenomenon. I started taking vitamin E and it went away.

[Luvlyhubby in reply to HuckleberryH]

Thanks so much. Hope you remain ok🤞

[Cja1956]

My partner twitches in his sleep, as well but I’m the one with MF. It seems to be happening more as he gets older. He is 71 and also sometimes wakes me up.

[Luvlyhubby in reply to Cja1956]

My hubby hasn't a clue that it happens, he's such a deep sleeper!