Inflammation

Hello l take hydroxy and warfrin and have awful painful inflammation in my back and legs, all support and information greatly welcomed.

[Mazcd Partner MPNVoice]

hi Adiewon2, really sorry to hear that you have this awful pain. It might be worth speaking with your GP about this for advice on how to manage it, or have a word with your specialist haematology nurse. Best wishes, Maz

[Hidden in reply to Mazcd]

High Mazcd

Fortunate to speak with my telephone consultant this afternoon about inflammation. I was a little more informed before the call afte watching MPN video about inflammation this wee. We decided l should come of hydroxy and instead take desolfan? Unsure about the spelling would love more info on this drug.

Thank you

Adiewon.

[Mazcd Partner MPNVoice in reply to Hidden]

hi Adiewon2, that's good, hopefully the change of medication will help. Do you mean Busulfan?

mpnvoice.org.uk/wp-content/...

[Hidden in reply to Mazcd]

Hi Mazcd

Not sure yet but l think I probably do,will say more once l have the meds.

👍

[hunter5582]

If the video you watched on inflammation was the one by Dr. Angela Fleischman, that is a great source of information. I have been in touch with her through participation in the Familial MPN Study. She did tell me a bit more about their experience with N-Acetylcysteine, which they have had some success with. As an alternative, I am taking L-Glutathione, which is the downstream anti-inflammatory agent produced naturally in your body. I also take Curcumin, which has done a world of good in controlling inflammation. Note: any supplement that can help you can also hurt you and interact with your meds. Always be sure to consult with your care team regarding supplements. I always consult with my Integrative Medicine doc regarding supplement-med interactions as she is more knowledgeable in this area than most other physicians. I always let my entire care team know everything I am taking as well.

Weight loss and exercise have also helped with the inflammation. One very good form of exercise to include is Qigong (e.g. Tai Chi).

Hope you get relief soon,

[Lndcr4evr in reply to hunter5582]

Any chance you have a link to that video? I would like to watch it as well! Thanks!!

[Hidden in reply to Lndcr4evr]

Paul123456

its the first time l have been asked for a link l hope l have helped.

[hunter5582 in reply to Lndcr4evr]

youtube.com/watch?v=FzyoPAG...(Not working as expected?)

[Hidden in reply to hunter5582]

👍

[Lndcr4evr in reply to hunter5582]

Thank you!!

[Buggerbear in reply to hunter5582]

Great and informative video Hunter. Thanks for sharing!! Would love to be involved in Study or Nutrition Counseling on Mediterrian Diet.

[hunter5582 in reply to Buggerbear]

You might want to see what the status of this study is.

wearempn.org/interestedinen...

[Wyebird]

You e had good advice so nothing to add just hope you get sorted xx

[Hidden in reply to Wyebird]

Yes thank you Wyebird

Stay safe.

😀