Inflammation?

[clevemic]

Does anyone else struggle with inflammation? I am 51 years old, and was diagnosed with PV two years ago. I began taking Peg-Interferon 3 months ago, and at about that same time, began noticing inflammation. My fingers are swollen to the point that it is difficult to wear my wedding ring. I have not gained any weight, am drinking plenty of water, and eat a healthy diet. Wondering if anyone else has experienced this, or if you think it could be related to PV and/or Pegasys. Thanks!

[MPort]

Hi you have asked a question that there is no general consensus on. Some top haematologists believe that inflammation is the driver in MPNs. There is ongoing investigation on this. But another school of thought dismisses it.

Recently I was in a lot of lower back and hip pain and like you rings tight. GP recommended Ibuprofen as anti inflammatory. It worked very well. I became dependant on it. I asked haematology nurse if there was a problem taking it as you can't take aspirin at the same time and if anti inflammatory tablets would help my PV. She had no knowledge of inflammation/PV. It took determination to come off it but I now don't take ibuprofen and am stiff and ring finger/all fingers swollen. And I don't know how to change this apart from glucosamine, cider vinegar, no red meat or red wine. Soaking hands in hot water good too. Fun! But I am giving it a go.

Let me know if you find out new information.

Mairead

[clevemic in reply to MPort]

Thanks so much for the information. I will pursue this with my oncologist, and let you know what I find out.

[Paul123456]

You might want to ask your Hem about this Majic trial comparing Ruxo versus HU. From Forum comments, it appears to be going well and might have concluded by now.

birmingham.ac.uk/research/a...

I believe Ruxo is anti inflammatory and has been combined in combo trials with PV to reduce inflammation. From recent Patient Power webcasts, it appears combo treatment are now the next step.

I doubt you will be offered combo, think this is more for MF, but if the Majic Trial has been successful, they might start rolling it out to PV patients struggling with Peg.

[Paul123456 in reply to Paul123456]

This is Prof Harrison on ET/Ruxo Trial dated mid 2017. No better than current ‘second line’ treatment. I assume that’s Interferon.

bloodjournal.org/content/ea...

But this is not the Majic PV Trial (for those who can’t tolerate HU)

I thought results from that Trial were likely early 2018 and the ‘vibes’ appeared promising? Anyone got a more informed view?

[Bluetop]

Yes, I have PV and am on hydroxy. From time to time I do suffer from inflammation. This was pre hydroxy, but I suspect it is related to the PV. My fingers took about 3 months to go back to normal last time and I've just had to take my rings off again. The reason my PV was picked up was through inflammation in my hips.