Ruxilitinib and members experience of it

Going through treatment
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21

Hi @CarolCull I am glad that you have a diagnosis at last.
I hope somebody will be be able to help you.
Really look after yourself.

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22

Hi @Willow ā€¦ what is the dose of your ruxotinib when your hemoglobin goes very low? And whats the dose now?

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23

Hi @Jstubbings what is your dose of ruxotinib?

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24

Hello @Ela. Apologies for the delay in replying to you. I have been in hospital and not on this forum as regularly as I was. I have recently been switched from Ruxolitinib to Momelotinib but when I was on Ruxolitinib the dose was 10 mg in the morning and 15 mg at night. My Hb dropped at times and I suffered a lot of symptoms when this happened. Consequently I have had numerous blood transfusions over the past six or seven years. This has resulted in very high iron levels which causes other problems. It is called iron overload. That is why I am trying Momelotinib in the hope I wonā€™t need so frequent blood transfusions. Hope that makes sense. I wish you well, Willow

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25

Hi @Willow, it sounds as if you have been through a rough time.
We have missed you on our forum.
Be ever so kind to yourself and sending you hugs xx

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26

Aw dear @Willow, sorry to read of that hospital stay. Hope youā€™re doing well now, but of course donā€™t feel obliged to share. Like @Erica says, you were missed and personally I hoped you were simply busy doing marvellous artsy things with your time!

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27

Thank you @Duncan and @Erica for your kind words. In January I fractured my knee cap and needed two operations. I was in hospital for almost 8 weeks. Whilst in hospital my dear mother died and a month ago I fractured 5 ribs and was in hospital with a chest infection. Still donā€™t feel great. Around the same time I started Momelotinib and I think part of how I am feeling are possible side effects of the medication. My medical team are aware and we hope the side effects will settle down. Thanks for thinking of me. Warm wishes, Willow x

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28

Oh @Willow such warm wishes back to you, you really have been through the mill again.
Take it very steady and hugs xxxx

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29

Wow @Willow, I am lost for words at what youā€™ve been going through. Iā€™m so sorry you lost your mum, thatā€™s horribly sad. I well remember you welcoming me with your familyā€™s shared experiences of these dratted illnesses that we carry around. It was comforting for me to know there were others out there living well despite our illnesses.

So much bad timing for so many massive health situations all at once, I really feel for you. Thank you for sharing, I hope it helps even a little. Sounds like thereā€™s been a shift for you since starting the momelotinib so Iā€™m glad youā€™re talking about it with your doctors. Always good to bear in mind our mental as well as physical health, as you know, oh wise one. I trust you have loved ones who you can talk about it all with, maybe even a therapist.

You must be so strong and resilient to be tolerating all this, my goodness. Whatā€™s your trick?! I hope those bones recover well and swiftly. Please keep us posted about how you heal, dear @Willow.

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Thank you again @Duncan and @Erica for your support, encouragement and understanding. I do have an excellent Therapist who I have been working with for some time plus my twin sister who is very supportive. I have had the usual well-meant comments from some people about how well I look! I have borrowed an answer that a lymphoma patient once used - ā€œLooking well and feeling well are two different things!ā€ Warm wishes, Willow x

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Thanks @Willow I shall remember that one, I usually just silently growl through gritted teeth, looking like Garfield the cat. xx

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32

Ha Iā€™m going to have to borrow this phrase @Willowā€¦ while gritting my teeth like @Erica :grimacing:

Glad your sister is there for you (and you for her, Iā€™m sure) plus your therapist. Donā€™t know what Iā€™d do without my therapy, itā€™s definitely a sharp lesson in learning to tolerate many unknowns at once!

Keep us posted about your recovery please :mending_heart:

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33

What a terrible experience you are going through Willow. I have now been on ruxolitinib for over a month and in general all is well. My HB has dropped so I am getting weekly EPO injections as well.
Carol

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