Thank you Erica
I am certainly looking forward to it and hopefully the change does me good x
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Hi Nicki
My first post Rux transfusion only lasted 2 weeks until the next one.I think they transfuse when HB falls under 80 so at 79 yesterday my HB was only just under.I think that you get used to having a lower HB eventually and you don’t get so breathless etc.People walk around with HB of 40 .My consultant is keen on stem cell transplant and I have my first appointment to find more about that on Monday.I don’t think it will work for me as I’ve no young relatives who may be matching donors but I’m still researching.
Alison
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Only 2 weeks oh dear but as you say you do get used to a lower HB count. I expect I will be having a lot more going forward then.
Good to get more info on stem cell transplants I too have no young close relations. My younger sister has vasculitis so she can’t be a donor. She had one son who is 10 so that’s no good and we have no other family. My consultant did the test for it to find a match 18 months ago and so far nothing is close enough to be successful. But they may keep looking. Be interested to hear what they say after your appointment Monday though x
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@Alison1964
Hi Alison how did you get on with your appointment re stem cell transplant ?
Hope it was useful. I had my first blood transfusion on Friday 2 bags of it. A bit battered and bruised as couldn’t get a vein for ages 
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Hi Nicki, The appointment for stem cell transplant was informative.They have already searched the donor register and found some possible matches and they took more blood to do some more detailed matching tests.I got told that I am intermediate risk 2 stage of myelofibrosis which is better than I thought.They had done an analysis of whether I had any mutations that put me at high risk of getting acute myeloid leukaemia and I don’t .We talked about the procedure and they said it was 6 weeks in hospital then at least 6 months of being unwell and needing frequent outpatient treatment.That was relevant to me as I’m thinking of moving nearer friends and family so I have more support.The consultant definitely felt transplant is the best option if you are under 65 and they can find a donor who is a good match.I have another appointment in a month to be told if they have a matching donor.
I hope you got away on your holiday ok
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That’s very encouraging. My consultant was slightly against it at this stage unless all meds stopped working and because I felt so well. Also couldn’t seem to find a good enough match at this stage. My hospital I attend doesn’t do stem cell transplants I would need to go 45 miles away to Plymouth so my consultant wouldn’t have any experience of stem cell transplants as such which is probably a negative for me. If I pushed it he would refer me but he is hoping meds will work for me as an alternative.
I did get away to Spain and the weather is lovely although I’m slapping on factor 50 sun cream as a precaution. Don’t want any other problems !
Do you need another transfusion any time soon or is the Ruxolitinib settling down ?
Regards Nicola
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Hi Nicki, next blood test is 27th Nov so 3 weeks from previous transfusion. I’ve just tested positive for Covid so i’m awaiting a callback from the Haematology dept as to whether I panic or not. I don’t feel particularly unwell and i’ve had all the boosters so should be ok but i’ll at least have to isolate for 5 days so i dont spread it.
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Oh bless you Alison. What a nuisance. I’m sure it will be fine if you feel okay and as you say you have had the boosters. But yes as a precaution good to get the drugs available to you as a high risk person. I caught Covid a year last September and was absolutely fine but of course I wasn’t on Ruxolitunib then. X
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Oh @Alison1964 I am so sorry to hear that you have tested positive for Covid and don’t panic you have made the call and await a callback.
Perhaps keep drinking plenty of fluids and be very kind to yourself and please do keep posting how you are.
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Hi Alison
How are you after your Covid. Hope you have fully recovered. Did it affect your bloods and have you had to have another transfusion ?
I’ve got my appointment tomorrow after blood tests on Monday. I would imagine I’ll need another transfusion as it’s 3.5 weeks since the last one due to my holiday.
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Hi @Nicki535 please do let us know how your appointment goes tomorrow.
Look after yourself
I will do Erica although I already know my blood result as the consultant phoned this afternoon. I have to have another blood transfusion tomorrow as my HB level is at 67
I’ve been on Ruxolitinib for about 10 weeks now and it’s obviously not settling down as it’s making me more anaemic than I was before I started.
Would have hoped it would have settled down by now.
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Hi Nicki
I’m fine after my Covid although it took a full two weeks before I tested negative.I was at the blood clinic yesterday and didn’t need a transfusion my next check up is in 2 weeks.I feel pretty healthy and now haven’t had a transfusion since first of Nov.I think someone said there is an initial drop in blood counts with Jakavi then things stabilise and also your body gets used to operating with lower Hb.
Alison
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That’s brilliant news Alison
I’m at the blood clinic now having a transfusion but the consultant has reduced my Ruxolitinib dose from 20mg twice a day to 15mg twice a day to hopefully balance things out better. I will have another appt in 3 weeks time with the consultant. Glad you got over Covid pretty well
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Hi Nicki
I’m on 10 mg rux twice a day so there must be a range of dosages they can try.
Hope today’s transfusion leaves you full of beans and raring to go.
Alison
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Ah that’s good maybe hence why you have settled down. Were you on a higher dose to begin with ? My spleen was pretty big at 11cm protrusion now it’s down to 5cm so the Rux has certainly improved that
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Oh @Nicki535 I am so pleased that your spleen has gone down to 5cm.
Please do keep posting and really look after yourself
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Thank you Erica. I was very pleased. Just hope the meds settle soon and in need less transfusions going forward
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