Hello all, I am ET jak2+ diagnosed 2012 age 57, I have been on hydroxy for a year following angioplasty as a result of this disease. I take 1gm per day but my platelets are still rising, increased dose is not an option as I am anaemic. It has been decided that I will start on Anagrelide as well as hydroxy even though it is know to affect the heart. I have been told to report to haematology for a bmb in 2 weeks but have been given no further information. I would just like to know what to expect really, I’m not stressed about it although I always get infections when they stick needles in me so I am concerned about that! I’ve not been told to not take my Aspirin or to not drive or have a day off work or anything! It was just a quick phone call to give me the appointment!
Any info greatly appreciated, thanks
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SuekJ
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I think you should definitely clarify the aspirin with your doc. I had BMB last year, checked with doc two days before whether I should stop aspirin. He said yes and I should have been told to stop earlier. It took an hour to stop the post procedure bleeding. However I had Von Willebrands which increases risk of bleeding.
Procedure itself was no problem, I’ve had two and no concern re a third. And I drove home afterwards.
If you read through past posts on this Forum you’ll find a range of BMB experiences described(!). I’ve had two and although I wouldn’t aspire to list BMBs as my favourite leisure activity the procedure was fine. Yes, between the anaesthetic, the aspiration and extracting a core there is a lot of needle activity. Some of it is typical of the discomfort of a needle going in and some of it is more of a tussle as they extract the bone marrow. I suspect your individual experience depends on your body (how well or not you are ‘covered’!, your anatomy etc), your mental attitude and the skill of the person carrying out the procedure. But really it’s pretty straightforward.
I’d suggest you take it easy afterwards (recovered much better the second time around when I did not go for a major hike back to the car and then bash the wound site getting in to said car!).
I recall having to stop aspirin in advance to minimise risk of bleeding / bruising. You may feel some residual pain at the injection site for a week or so. Any post procedure discomfort easily managed with paracetamol.
You’ll find plenty of hospital patient advice leaflets online.
Hi,move had 4. Stop aspirin one week before. You'll be ok to drive home but take someone with you if you are anxious. Take a couple of paracetamol afterwards, I just had a slight ache for a while. Good luck.
I have had ET for 27 years and started on interferon injections for first 9 years, then aspirin alone for 10 years. In 2006 I went on Hydroxy until June this year 2018 when I had a leg ulcer. I was put on Anagrelide and can honestly say I hate it. For the first time with ET I feel really down in the dumps. I started with one twice a day and the platelets went up. I was then put on two twice a day and have continuous had headaches and feel really ill most of the time on going back to the hospital my platelets were still over 700 and I was hoping to go back on Hydroxy but “No” I was reduced to one anegralide twice a day and told to go back in 3 months time. I find this worrying and am worried about the rising platelets. I am still having headaches. I know lots of people are having a successful time with anagrelide and I wish I was one.
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