I was diagnosed with ET around 12 years ago. I was on Hydroxy at first but been on Anagrelide for a few years. I’ve been anaemic for a long time, usually iron tablets bring the hg up again but it’s staying low at the moment. Specialist nurse has just called to say consultant wants to do a bmb to check whether the ET is transforming to anything else.
Has anyone who has gone through this any tips whether there are any symptoms I should be looking out for? It’s quite worrying, obviously, just what the future holds, treatment etc.
Thank you
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lizzziep
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Thank you. No weight loss, even though I am trying to lose weight. No night sweats, apart from this hot weather, or itching - so far. I have been quite tired lately though. Got everything crossed, hoping I get a quick appointment for the bmb, which the nurse said they now use a drill for that!
Because I’m anaemic despite iron tablets, I’ve been anaemic a long time but the iron tablets have brought the hg up previously. I had the camera where the sun doesn’t shine and into my stomach a couple of years ago to see if I had any bleeding but nothing showed. Since then my hg count has been up and down - mainly down. So they want to check if there’s any sign of progression into anything else, which is quite worrying.
I understand. Wishing you well and let us know when you get your next results.
The drill they describe to you I think is a "trephine" to get the solids part of the marrow to see the physical shape of things. For MPN this is normal to have. They also take out a liquid part. I had this procedure too with both parts.
I did experience ET transformation to PV. This was accompanied by an uptick in inflammatory symptoms. I did not recognize them as connected at the time.
It sounds like a wise plan to do the BMB to find out what is going on. Please do let us know how you get on.
Please keep in contact , so sorry to hear you have these worries. Out medical teams are excellent and will care very well for you.I read your article as I have been on hydroxy for 4 years so quite a novice!
I do sometimes think about future years.
Wishing you very well, keep healthy and eat well ,lots of lovely walks .
Hi. Exactly the same is happening to me. All my counts are really low. So bmb scheduled I also have stopped anagralide for a short time. But really fatigued and anemia. So will have to wait and see results. So u are not alone
Sorry to hear that, my other counts are ok, including platelets, as far as I know. I used to get a print out of them at the appointment but that stopped when telephone appointments started with the pandemic. Good luck to both of us.
Yes hope they get is sorted for both of us. My consultant is hoping it's just my Anagrelide that is affecting my counts. If so then I guess another medication required
I’m on Anagrelide too. I know it can cause anaemia, hope all we both need is a change of medication to one that hasn’t got too many side effects. Got my bmb on 27th.
I don’t have any experience in this lizziep as I was diagnosed in 30s 2 years ago. This is something I have been informed could happen. But I am really wishing and praying for the best for you and that it isn’t transforming and you stay as healthy as possible and the same for everyone on this forum. 🙏
Hi LizzieiepYou profile sounds just like mine. I was on Hydroxy for 7/8 years. Two years ago I changed to Anagrelide because the hydroxy stopped being effective. My consultant recently changed and the new consultant wants me to have another BMB which I’m not looking forward to as it wasn’t a very pleasant experience last time. I too have exactly the same symptoms as you- anaemia which causes shortness of breath although interestingly when I suggested taking iron tablets the specialist nurse said I would be wasting my money as it wouldn’t work! I play a lot of tennis and the anaemia makes me feel very short of breath when I’m playing. I have also lost weight, and sometimes have difficulty sleeping because of itching or night sweats. I have a bedroom fan which helps, especially in this hot weather.
I’m also concerned about the progress of the disease and would be interested in what they find when you have your BMB. Good luck. I really hope it’s all stable and not progressing as you fear.
Ì was diagnosed with ET in March 2016, put on hydroxy, had severe fatigue after 8 months, changed to anagrilide but no help , diagnosed with AF, then after another bmb, diagnosed with M F, so put on Jakavi, have had itching which I treat with organic Aloe Vera gel, take Magnesium malate for fatigue, for aching legs use AV and Sweet Sleep magnesium butter. Had Sepsis and Covid in March this year, recovering slowly.All this caused by exposure to Benzene in petroleum products, also Benzene compounds used in food and cosmetics at safe level ? How can you have a safe limit for a poison ?
Hi, sorry that you're no doubt going through a troubling time. I'd had PV for twelve years before I started to become anaemic. Blood tests did not indicate MF, so a number of other possibilities were explored along with various tests. A first BMB was a dry tap but fibrosis was revealed. Apart from the anaemia I was experiencing some mild night sweats but otherwise no apparent symptoms. I think the most important thing to do is be referred to specialist haematologist rather than rely on a 'generalist', especially if the BMB indicates MF. Good luck with whatever transpires.
Hi lizzziep, My situation sounds very similar to yours, I was diagnosed with ET in 2009, I was on hydroxy, then went onto anagrelide. I am now on Pegasys & have been for the last 6 years. My hb levels have been going down over the past year & feel quite tired & also breathless sometimes, when I walk, no night sweats, but some weight loss & I am anemic & will prob need an iron injection. I have had a more specialised blood test NGS (???) & I am having a scan on my spleen in a couple of weeks. No mention of a bmb. My haematologist has warned me it could be progressing. It is a worry, but good we can hear other peoples experiences.
We’re all hoping for the best results as I know this is scary. I also have ET and on Hydrea and this is always in the back of my mind every time I go to the doctor for a checkup. The possibility never leaves us. Prayers.
Hi Lizziep. I think it’s quite normal to have a periodic BMB, especially if there are changes to symptoms or results. In addition to bloods it can be necessary to help get a fuller picture and inform future management plans and best treatment options. I was diagnosed with ET in 2009. Had a BMB in approx 2010. I started having to have venesections a few years later (more consistent with PV but still had the high platelets). I didn’t have a BMB again until Nov 2020. That scan did show some scarring, though I’m fortunate that I’m not suffering any notable symptoms. So at present I’m still on aspirin only. I do hope that your result is a positive one for you. I completely understand that it’s a worrying time. As for the BMB itself, I’ve found the thought of it is worse than the actual procedure. Keep us posted with how you get on.
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