Hello, my name is Kelly and I fear that this site is going to be a regular place for me to visit, so I’m eternally grateful to you all for any support you can give me. My poor husband has been diagnosed with MF, he has started on Ruxolitinib and on track for a Stem Cell Transplant. Can I ask what pain relief people take, for bone pain, I am not sure if it’s ok for him to take ibroprofen. He can barely walk this morning.
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Hello Kelly sorry for the diagnosis your husband has had re MF and for how that is for you both - does your husband has a clinical nurse specialist in his department or a telephone contact for his consultants secretary - either can be good for a quick bit of advice re pain control - I have another Myeloproliferative neoplasms (MPN) - Essential thrombocythemia (ET) - I know ibuprofen is not good for me with my treatment but as all these things it’s individual to the patient and their meds so it’s handy to speak to the CNS - I always use paracetamol for pain control myself - others with actual MF may have more assistance for you on here but hope you can get hold of the dept for a quick chat - keep us posted
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Hello @Kelx47. I am really sorry to hear how your husband is suffering. I too have myelofibrosis and bone pain has been a problem for a long time. Personally I find paracetamol with codeine helps. It comes in tablet form called cocodamol. Obviously you would need to check that it was safe for him to take. I do get side effects of feeling drowsy with it but my body has got used to it. I would rather feel a bit sleepy but have less pain. Incidentally I have found Ruxolitinib has helped to ease the bone pain. It took a while to find the correct dose of Ruxolitinib to help with the pain. I wish you both well. Willow X
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Hi @Kelx47 yes, please do keep reading and posting on here.
@Jilly20 and @Willow have given you brilliant responses and you will find on medical advice your husband will be referred to ask his medical team as they know him well, his treatment plan and medical history etc.
However do ask him to stress the severity of his symptoms and effect on his lifestyle.
As your husband has been recently diagnosed how are you both keeping coping with the shock and all those feelings, thoughts and practicalities?
My husband goes around with his head in the sand and won’t talk about my diagnosis which is another reason that I find our forum so supportive, everyone is different.
If either of you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Really look after and be very kind to yourselves and please do keep posting.
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Hello Kelly
I just joined here yesterday. I have had MF for 11 years and just starting Ruxolitinib next week due to being anaemic which I’m a bit apprehensive about.
I have been told in the past not to take Ibruprofen.
As an alternative if I had bone pain which thankfully I don’t yet I would agree with Willow and take paracetamol with codeine.
Wishing your husband all the best and hope things settle down soon. 
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Thank you everyone for your helpful comments, it’s been a long day, poor hubby in a lot of pain, he’s gone from being my Superman to almost un recognisable. I’ll speak to the Clinical Nurse and definitely get some Codine. Kx
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Good Morning @Kelx47,
I hope you are doing okay this morning?
I am so sorry to hear of your husbands diagnosis. We know how much of a difficult time this can be to navigate, particularly when starting new treatments. Can i ask if your husband managed to have a restful night without too much pain? Please don’t hesitate to seek advice from your local pharmacist over the weekend.
I wanted to let you know that should you have any concerns or wish to talk things through, our helpline is very much here for you both- Blood cancer information and support by phone and email | Blood Cancer UK.
Best Wishes, Lauran
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Thank you for asking, he was in terrible pain last night, but I found some Naproxen, did the trick! He only took one, so will make sure going forward he takes what is recommend. The Ruxolitinib is really kicking in now, he’s got very upset tummy and feeling nauseous. I am hoping that he will get used to this drug over a few weeks and things will settle down. Kx
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Hi @Kelx47,
Thank you so much for taking time to update us. I’m pleased he has found some relief and was able to get some rest. I hope you are ding okay too?
Please do make sure you follow up next week with his CNS so you can have a supply of appropriate pain relief in the house. It sounds like the treatment is taking it’s toll a little so don’t hesitate to talk this through with his haem team also. Side effects can settle after a spell of adapting but sometimes other medications are needed alongside to help resolve the nausea etc so be sure to raise this also if you are worried.
Again know our helpline is always here for you both.
Take Care, Lauran
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Hiya
I was diagnosed with MF in April 2022. It’s been a difficult and challenging time. In January 2023 I had a transplant. The bone pain can be severe but positivity is required… I take paracetamol and found Volterol helps at night.
Stay strong it gets easier and he’ll get stronger. Healthy eating and gentle exercise is also important. The nausea and tummy isssues do settle down.
Please feel free to contact me if I can be of any help.
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Really great to hear from you @Howard again.
What a challenging time you have had this year.
Slow and steady (on that bumpy road) wins the race.
Be kind to yourself and please keep posting