Lets talk about clinical trials. I am getting su... - MPN Voice

MPN Voice

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Lets talk about clinical trials. I am getting such good results now I'm taking ruxolitinib on the Majic trial ,but it takes dedication ....

Twinkly profile image
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As the side effects appear we have to learn to deal with them ,

So,,bloating ,food intolerance ,weight gain, swollen joints, breathlessness ,

Are some I have now come to deal with,,my healthy fresh food diet with very limited dairy ,helps me control the digestion problems.natural food like honey feeds me while I recover my energy levels,I have had no coughs or colds ,garlic every day keeps germs away,steaming vegetables keeps so much more goodness in your intake and is so easy to do,drinking healthy juice and water keeps the system clean... Majic.. ( twinkly) xxx

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Twinkly
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maestromaverick profile image
maestromaverick

Hiya Twinkly so glad you are doing so well on Rux . As you know I'm also on it but not doing so well . Also I can't follow the kind of regime your on and I suspect neither can others . I have to have a high fat diet to maintain weight never mind putting it on . The point I'm trying to make is everyone is different and although we are fighting our battles together what works for you may not be beneficial or right for others . Long may you do well but please give respect to those who are struggling so hard and can't be you .

Twinkly profile image
Twinkly

I'm sorry if you are struggling ,please don't think I'm not .i try very hard to share the good suggestions and print positive encouragement,I have rheumatoid arthritis and of course my walking is limited ,but I try not to allow the pain to cloud my days.i hope some do get encouragement as we try to share and support each other,on this really wonderful helpful site,I know it helps me ,,enjoy your crisps darling I miss them most !!!

Twinkly profile image
Twinkly

Sorry I forgot to say this is a reply to maestromaverick,,it did take a while to get my system used to ruxolitinib ,,and the wine at night makes really good headaches in the mornings ,,.always here to help ...xx

StuEP profile image
StuEP

Hi, I found your recent post really useful. I am considering asking to go onto the drug myself and it is good to see how different people are reacting. I am on HC at present and have, like you, made changes to my diet to combat weight gain. I am noticing both a slow weight loss and a reduction in my symptoms. But like you say it is not easy. So go for you and I wish you all the best.

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