After my blood tests last week I was asked to go in on Thursday for a transfusion, as haemoglobin only 69. Felt better for a few days after that but started to get breathless again from Tuesday. Had another transfusion today. Nurse said I might need them weekly for a while. Not on any drugs for the MF now as doctor said to stop having the peg, probably going on Rux soon. Still on EPO injections and aspirin though. I haven’t had a transfusion before last week, as I mentioned before my counts seemed to drop like a stone after my covid and flu jabs.
Is this ‘normal’ with MF? I’ve just emailed Guys to bring them up to date so they know what’s happening if they haven’t managed to get my records yet.
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lizzziep
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Wow Lizzie, how much blood are you getting, when you have a transfusion? My wife was low a couple of weeks ago at Hgb of 86, and had 3 units of packed RBC and a bag of ferinject (iron) , she has an IV of hydrocortisone beforehand due to feeling so ill afterwards, even so she is quite ill for a few days. A week later she's flying up our hill😁. Each bag of red blood cells adds about 10 to your Hgb if that helps, if you were at 69 our hematologist would prescribe five bags! Though probably not all at once. All the best .
I was only given one bag, last week and yesterday! I’ve got a blood test booked for Wednesday so l’ll see what it is then. They said my minimum target was 80.
Oh, that's a low target! If I remember correctly even the NHS mentions somewhere that once below 80 one should be 'topped' up to the minimum low, which for a female is 115, not kept at 80. My wife's hematologist consultant tends to listen to her symptoms, which means, when she's around 90 to 95 she loses power, and feels weak, which we tell him, and RBC are prescribed, or iron, which doesn't always work so well, but is welcomed. After massive bleeds her Hgb has been as low as 50 which during hospital stays is topped up to around 120+. Hope you find this information useful. All the best.
Targets are really low nowdays, for the general population, even while an inpatient, in hospital (nurse, here). Of course, and particularily with Haematology patients, everyone's targets could be different.I remember my nurse asking for me to be transfused at 84, as I couldnt lift my pill containers. I had haemrrohaged in surgery the day before, but drs thought a 44 yr old should recover spontaneously.
I have 1 bag blood regularly approximately every 10 days when my HB is in the 80's. If below it's 2 bags .I have been transfusion dependant for some time. I am on hydroxicarbimide at the moment.Ruxolitinib was not for me....too many infections as I also have Bronchiectasis.
Hi Lizzie, sorry to hear your Hb has dropped so quickly. I'm transfusion dependent, have been for over a year now since diagnosis, currently 3 units every 2 weeks. I never know how high my Hb goes after transfusion but recently it's been around 80 pre transfusion, earlier in the year when only getting 2 units it dropped to around 65 pre transfusion. I have also heard the Dr's talking of a target of 80 as being the safe lower limit but my opinion is that should be your pre transfusion level, not your target after transfusion. I'm on the FEDORA clinical trial, 400mg Fedratinib daily and 250mcg Interferon Alpha 2b (Besremi) every two weeks. I'm also now on iron reducing tablets as side effect of too much RBC is also too much iron which can damage other organs. The consultant wants it lower before I start my SCT journey. Good that you have access to Guys and hope they can support you well.
Are you on a fairly low dose of EPO? When my dose was doubled, I didn't need any more transfusions and my Hb stayed in the nineties which was fine for me.
80 seems like a low target - I certainly needed to be above 90 for a decent quality of life.
As for what is "normal" I learned that there is no "normal" for MF I'm afraid.
I’m on 30k EPO twice a week, was on once a week, just been increased. I also think I need an increase in the transfusion, I’ve just been upstairs and I could feel myself getting slightly breathless already. I have a fitbit that shows my bpm by the time I got upstairs it had gone up to 89, however before the transfusion it was going up over 100. I’ll phone them on Monday - nobody there at weekends!
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