ET / Osteonecrosis / Surgery

[Bodensee]

Hello

Has anyone else with ET experienced problems with insufficient blood circulation causing osteonecrosis? If surgery is inevitable, what extra cautionary measures should ET patients take?

With ET JAK2 diagnosed 11 years ago, I've been on Litalir, changed to Anagrelide 2 years ago and for the last 4 months on Rux. Quite unexpectedly 2 weeks ago after 10 days of painful walking, necrosis of the head of my right femur (about 50% necrotic) was diagnosed and I'll need a hip replacment within the next few weeks, despite the increased risk as an ET patient of thrombosis or haemorrhage. My Haematologist has advised the Orthopaedic Surgeon to consult a Coagulation Specialist for peri-op. monitoring and treatment as necessary. If anyone has advice or tips for this situation, I'd be glad to hear from them.

5 years ago I had a small area of necrosis on my left foot. The Orthopaedic Specialist at the time tried various medications over about 6 months. None of them worked. He suggested that ET might be causing the problem. Then fortunately I had to go to my Physiotherapist on another issue. He gave me a few simple exercises for my foot and I had no further problems! I mentioned this to the Orthopaedic Surgeon but he replied that the affected area on my femur is too large to be treated conservatively.

Any explanation of the relation between ET and osteonecrosis would be greatly appreciated! Likewise any tips.

Many thanks 😊

[Scaredy_cat]

Have you had the fibrosis level in your bone marrow checked? If high could this play a part

[Bodensee in reply to Scaredy_cat]

No, as far as I know, the fibrosis level hasn’t been checked, so I‘ll follow up on that. Many thanks!

[johnnyjumpups]

I have been taking Fosamax, a drug for osteoporosis, which includes osteonecrosis as a side effect. I am interested in the replies you get. I am so sorry you are going through this!!

[Pte82 in reply to johnnyjumpups]

Search on Geranylgeraniol for bisphosphonate related osteonecrosis of the jaw.

[Bodensee]

Many thanks to you all for your input. I‘ll follow up on these leads but realise now that it‘s quite complex. Certainly I‘ll post any results which may emerge.

Best wishes

[user2021a]

I had osteonecrosis diagnosed in my knee but it gradually improved and not having issues with it. I was convinced it was caused by clotting due to PV (I have Budd Chiari caused by clots). Knee doctor and haematology didn’t think it likely but I think it is possible

[Bodensee in reply to user2021a]

Many thanks, user2021a, that's quite interesting because I have a feeling mine was caused either by ET or else by the medication (Ibandronat) I've been having against osteoporosis. Of course, as you say, doctors don't want to consider this possibility... The osteonecrosis on my head of femur is too advanced for it to be saved, but it's certainly something to look out for in the future!

All the Best!

[user2021a in reply to Bodensee]

I wasn’t on any medication at the time other than warfarin so can’t blame that. It was at a time where my red blood cells were high and was having venesection but perhaps not as frequently as needed.