Hello… newbie here , awaiting for Bone marrow biopsy result . My gp said its dry tap, i have splenomegaly and hepatomegaly…anyone here have the same situation ? Thank you
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Id did a research also that ruxolitinib and mome are quit expensive… how much does this cost in your country?
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Hi @Ela
A bone marrow biopsy was the only conclusive test that gave me my Myelofibrosis diagnosis 12 years ago. My spleen was also very slightly enlarged. Obviously over time it increased in size but since starting on Ruxolitinib last September it has decreased to near normal size. That’s the good part of Rux but it does cause anaemia in many people. Think the cost is around about £2800 a month which is very expensive. Don’t know the cost of momolitinib but imagine it will be similar.
Good luck with your test results
Best wishes
Nicki
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Hi @Ela a great big welcome and take it from your post that you are not in the UK.
So perhaps be aware that diagnosis, treatment plans, treatment protocols and drugs available might be different from your country.
I found it very difficult coping with the waiting and not knowing.
Really look after yourself and please do let us know how you get on
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Thank you @Nicki535 gosh medicine itself is so pricey, everyday im more worried about this , i am worried that maybe i cant afford this medicine. For me it is very very expensive . Does anyone know how to join fo clinical trials? I am from Philippines
P.s you are still lucky cause you have the resources to buy the medicine.
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Good morning @Ela
Yes it is extremely expensive. We are very lucky to have our National Health Service in the UK supplying us our medicines.
I hope you can get sorted out okay and that even if your diagnosis is Myelofibrosis it doesn’t mean you necessarily have to take Ruxolitinib medication or the new Momolitinib straight away. I was on what was called watch and wait for 11 years so didn’t take it during that time despite my spleen being enlarged.
All the best
Nicki
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Hi @Nicki535 thanks for the info, really? You didn’t strt ruxo or any myelofibrosis meds yet before? For what reason do you think your gp dont give u medication right away? Im just worried cause my spleen size is 15-17cm, how about you?
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Hi @Nicki535 how young are you now? Do u still consider bone marrow transplant?
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Hi @Ela
Mine was 21cm and still didn’t take anything.
The reason was my haemoglobin level, my red blood cells count was around 95 and stable. Once it dropped to 82 and it was like that for 2-3 months I went on Ruxolitinib.
But think my chances of developing something else like acute myeloid Leukaemia had increased so that’s also the reason why.
Best wishes Nicki
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@Nicki535 so hows your spleen size now? Does clopidogril helped lessen the size ?
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Hi @Ela
My spleen size is about 3-4cm now so the Ruxolitinib has worked so far.
No clopidogrel doesn’t help with the spleen size. Clopidogrel reduces your platelet count from a high platelet count and lowers it to normal. It makes the blood less “sticky”
Nicki
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Hi @Nicki535 thanks for the answer. How long do u take ruxo before your spleen go back to normal?
Hows ruxo so far?
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Mine went back within 3-4 months.
No side effects from Rux other than more anaemia which means at the moment I’m having blood transfusions every 4-5 weeks to sort that out
Best wishes
Nicki
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Hi Alison
Just wondering how your treatment is going. Have they started the stem cell transplant ?
Hope you are feeling okay.
I’ve just changed my medication to momolitonib this week to reduce the need for transfusions. To be honest I was only having one every 5 weeks as it had improved so hoping this works as well.
Regards
Nicki
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Hi @Nicki535
Please do let us know how your change in medication goes.
Look after yourself
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Oh no ! My GP said i have to take ruxo 5mg twice a day 
… i am so worried maybe my hgb goes down and i need blood transfusions if i will take ruxo… please enlighten me here
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Hi Ela
I started off with Rux 20mg twice a day for 3 months and then it got dropped to 10mg twice a day. Indeed it does drop your HB which means intermittent transfusions. I started off. With 2 units every 3 weeks. As my mg dropped and I got used to Rux it became 1 unit every 4 -5 weeks but I was also using epo injections once a week which I think helped to reduce the need for as many transfusions.
However 2 weeks ago I have swapped to Momolitinib without injections also and my HB level has increased up to 82 from mid seventies 2 weeks ago so hoping it continues to improve. The transfusions are okay but initially daunting and more of a nuisance than anything as you have to plan around them. But then if it keeps us going it’s better than nothing. Unfortunately it’s a vicious circle you take one tablet and it causes problems. Have you asked about Monolitinib ?
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Hi @Ela as you see everyone is individual and so many aspects are taken into account so medication regimes are individual too.
Perhaps ask your GP
Please let us know what your GP says.
Look after yourself.
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Hi nicki, i didnt ask yet about momelotinib and im not yet sure if its available in Philippines, i will ask my gp next consultation… thank you
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Hi @Ela you highlight so clearly that treatments regimes and drug availability can vary within areas and countries.
It is always worth asking though
Look after yourself
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