MPN Voice
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Interesting research into new treatment for MPNs

Sounds like this could be promising - hope they get a trial organised soon!

hcplive.com/medical-news/ar...

Hope this link works OK...

Andy

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Hi AndyT,

This is a very interesting article. I am going to print it and take it to my next appointment. I have had PV for 10 years. I also have rhumatoid arthritis. My RA was In remission for about 7 years, but I had a flair up 3 years ago in my wrist. My rheumatologist wanted to start me on methotrexate but I had just started Hyroxy and my hematologist said both drugs would be too toxic. But, reading this I am wondering if I could take the methotrexate instead of the hydroxy? Worth a discussion I think?

Thanks for posting.

Judy

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Hi Judy - I guess it's too early to know if this will work as a treatment for MPNs in humans but given your situation with both PV and RA it's definitely worth a discussion. Good luck, Andy

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Hi Maz,

Is it possible to get Prof Claire Harrison's view/comments on this article? I would be interested to know if the doses for a mpn would be a lot higher than that for RA?

Thanks

Judy X

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I had read about this previously, i had read that it is a jak inhibitor just like Ruxolitinib.

Will be interesting to see if anything develops and how it compares against traditonal therapies and of course ruxolitinib.

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Yes that's interesting Andy, more for the saving to the NHS than any improvement in side effects from chemotherapy as the article states. Any new discoveries in research into MPNs are always exciting though.

Incidentally I was reading in one of the science mags of a newly discovered phenomenon of extra (red) blood cells being manufactured within the spleen! I would imagine this to be quite a revelation for MPN sufferers. Has anyone else read this and Maz would you have any comment to make regarding Dr Harrison' views on this? X

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I will ask Prof Harrison if she has any comments. Maz

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I would certainly be willing to take part in any trail that was started. I have problems with my hips which will have to be replaced at some time but not yet. The pain did lessen when ET was diagnosed and treated with HU but after 7 years it is apparent that the arthritis is progressing.

Sally

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I also read about this a couple I'd says ago and have printed off an article to take at my next check up. It sounds vey promising x

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My daughter in law has this by injection for severe excema not only has it nearly cleared her skin but more interestingly it has practically stopped the itch !

She said the only side effect is a bit of tiredness . She is 25 .

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Prof Harrison has said: Indeed it's fascinating. We are certainly thinking of pursuing this in a clinical trial.

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Hi Maz,

Thanks for that. I will definitely mention it at my next heam appointment Xma Eve! How lucky am I!?

Judy xx

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That's great Judy, everything crossed for you.xx Aime 😺

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Sounds good Andy, fingers crossed Aime xx😺

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I am really happy to find your post Andy. I was recently diagnosed with ET/JAK2 positive 3 months ago, and I'm not taking it well at the moment. I started getting muscle and joints pain which makes me so uncomfortable. Trying frantically to find an alternative to the Hydroxycarbamide treatment, as I know the long term side effect of this medication is for the patient to get some form of Leukaemia, or any type of cancer.

May be change of diet and life style will help? not sure. I think I still have a lot of homework to do in terms of reading. I wonder if the rheumatoid arthritis drug methotrexate would have an impact on the Platelets count. May be joining their trials be a good idea.

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