Hello all.My mum was diagnosed with MF 3 years ago and she’s been on rux since than.Her HB dropped to 56 today and she is not feeling wll,she has been admitted to hematology ward today.Last week doctor told her to stop using rux.I am so affraid,could anyone tell me if you have experience this?
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Hello @Sara88 I am sorry to hear about your mother and I can understand your concern. I have had myelofibrosis for many years and was on Ruxolitinib for about five years. Although it helped with some of my symptoms such as enlarged spleen and bone pain I did find that my haemoglobin (Hb) level dropped and I required transfusions of red blood cells from time to time. I can quite understand with an Hb of 56 your mother is going to feel weak and unwell. About six months ago I was switched from Ruxolitinib to a newer drug Momelotinib. One of the advantages of the Momelotinib is that it doesn’t cause the Hb level to drop. Interestingly I haven’t needed a transfusion of red blood cells since starting the Momelotinib. I hope this is helpful and that your mother soon feels stronger. Thinking of you. Warm wishes Willow x
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Hey @Willow thank you,I really apprecciate your reply. Unfortunately, Momelotinib is still not available in our country (Serbia-not even in EU).While on ruxolitinib, her spleen didn’t reduce in size but also it didn’t additionally enlarge,there were no more night sweatings,everything was pretty stable and she was feeling really well.Her HB was usually around 101.But around 3 weeks ago she started feeling tired and her vitamine D was very,very low.So we thought tiredness was due to vit D deficiency.Then she ran blood tests and saw HB 83.That was last monday.Since last tuesday she’s been off rux and this happens…This morning HB is 56.There are no internal bleedings,everything seems the same except for blood count.Sorry if I am being repetative,I am beyond concerned
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Oh, @Sara88 What a very caring daughter you are and I think it is natural to be beyond concerned.
I would say that you are definitely not being negative.
As you say you are in Serbia it might mean different ways of working and treating and as you say available drugs.
However what you might consider doing is writing down all your fears, thoughts, questions and practicalities to ask your mum’s medical team.
I have learnt to be pleasantly assertive and ask for responses to be in clear language.
Be very kind to yourself and look after yourself as well as you do your mum.
@Erica thank you very much for your kind words.My mom’s cousin is a haematologist,professor of hematology and director of the ward.However,he is full of himself nad kind of unapproachable as a person.I called my mum half an hour ago,she is feeling better than yesterday and says thah doctors are optimitistic.My only concern is that they took her off rux and there is no other medicine available.Seems that her spleen enlarged a bit more
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Hi @Sara88 please do keep us posted how you are both doing and really look after yourselves
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How are things today @Sara88?
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Slightly better than few days ago.Transfusions every day
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Is there a chance that a patient be again on rux after a break of some time?
Yes they can start up again on Rux again after a break if it’s classed as beneficial for the patient
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Thank you @Nicki535 ! I pray that doctors put my mom back on it as she was responding really well to rux
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