Hi all,
I’m Et jak2 positive.
Been on hydroxy and aspirin for c 2 years. No real Side effects.
About 6 months ago I developed a frozen shoulder - no obvious reason.
My physio who is terrific thanks it might - he’s very non committal about it - be related to the hydroxy as it’s an inflammation issue rather than muscular.
Anyone else had any experience of this?
Thanks I’m advance.
Sorry to hear about this, I know from experience that frozen shoulder can be agony. When I had it (both sides!) I was on Anagrelide so not related to Hydroxycarbamide in my case. Many people get it for no obvious reason. Mine resolved after about eight months so hopefully you haven't got long to go.
Pjjcm, hydroxy causes magnesium loss. This link explains how magnesium can bring on frozen shoulder. Boron needs to be checked out to for it's role in the tendons.
Hi
Yes, I think it does. I currently have Frozen shoulder. It’s been 6 months or so and not nice! 10 days ago I got an injection of Saline&Steriods into my shoulder.
This has worked a little and I have more movement and less pain. I have to continue physio for the next weeks:months!
Well, I got Covid a few days ago and that’s hit me hard, so once Covid passes I will, haha
Good luck and hope they sort it soon!
Thanks for your reply.
It does look as though the hydroxy may cause magnesium deficiency and thus the shoulder issue.
Good luck with that - and the Covid recovery!
I’m ET triple negative, aspirin only. Developed sudden onset frozen shoulder for no apparent reason. Couldn’t believe it, but three months later sudden onset in other shoulder. Gently physio and both resolved after a year. My husband (no health conditions) also had frozen shoulder. Seems to be one of those (many!) things that can happen as you get older. Wishing you a speedy recovery.
I would say it’s more likely to be a coincidence. Having treated loads of people in the past with frozen shoulder, ( when I was a NHS physio) it’s very common and usually occurs with no obvious reason or injury. In fact last year I too had a frozen shoulder- no known cause and I don’t take anything for my ET other than occasional aspirin , but it quickly got better with quite aggressive physio, stretches / exercises and just using it.
Wishing you a speedy recovery.
I was on hu for 6 years and I didn’t experience anything g but we are all different. You never know
Hi
I’m Et jak2 positive. I had a frozen shoulder however this started after my first covid vacation and my shoulder became more stiff and painful after the 2nd vaccine. I thought the frozen shoulder was due to the vaccines but maybe 🤔 not. You have got me thinking now.
Yvonne UK
Hi! I have ET (Jak2) and have also had frozen shoulder (once in each shoulder). Never thought about a connection between the two. Know a lot of people (including my sister) that have had frozen shoulder - seems to be pretty common, particularly with women in their 50s.
The first time I had frozen shoulder - terrible experience. Lots of pain. Prescribed PT (physical therapy), but really was not helpful during the initial and middle stages. I finally found an amazing doctor that helped. Saw him immediately when I got frozen shoulder the second time. He gave me a cortisone shot (had this within a couple weeks for my first symptoms, i.e., well before the freezing began)- no more pain and fully resolved in 1-2 months with home exercises (as compared to nearly a nearly a year the first time). I have learned that if you get a cortisone shot very early in the process it makes all the difference in the world.
Good luck!
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