I'm excited to share this collaboration with PharmaEssentia and MPN Advocacy & Education International, which allowed myself and three others living with Polycythemia Vera (PV) to tell our stories as part of a new educational #MPN series, PV&ME. It's our hope that this campaign will help others living with PV navigate their diagnosis, symptoms, and care.
Patti, Deb, Buzz, and I hope you find our presentations informative and helpful. The stories can be accessed at these two links.
Thank you Steven for being a wonderful representative for all of us with a MPN! You are so helpful and supportive to all of our great group of people with your very well researched advice!
Thank you so much for your very comprehensive views and outlooks on MPN’s. Absolutely loved the you tube pieces. You are always such a mine of information I always find your pieces of immense interest. Thanks for all you have done and are doing. Janice
Hi Hunter, It has been so uplifting to see your video (assume that you are Steve on there!) Seeing your face and learning more of your lifestyle along with those of Patti, Buzz and Debs fills my heart with love and compassion for us all on this journey - it does seem to be the disease (rather use the word 'condition') of people who have pushed pushed pushed themselves beyond limit - I can certainly include myself in that category, and embracing and accepting is so much a part of the journey - Happy MPN Day to us all and thank YOU for being such an amazing advocate and source of knowledge and encouragement to our group. Roxanne (Sarah) Ha ha must dash as I have work to do, dog to walk and a gym workout (all b4 lunch, I may be need to take some of Patti's medicine, at the mo I feel you can't keep a good girl down, I am of VIKING heritage I know that at some point I need more 'balance'.
Excellent Thank you Hunter for sharing these presentations with us. They are very meaningful and informative. I hope they inspire us to continue being proactive and confident in our approach to living with an MPN. I gained more confidence in speaking with my MPN specialist. But I'm also mindful to be careful in what I read so that I don't scare myself reading about other "stuff". PV is challenging. I am learning to be kinder to my self. But my work ethic is suffering. However my manager is very supportive. I work with children in a cancer hospital. They are warriors and I love my work. Xx keep up the great work you and others are doing.
Thank you Hunter 🤩 It was good to meet you through the video.
You are such a help in this forum and I found these 4 videos very interesting.
My fatigue and brain fog I had thought must be my Hashimotos or just being post menopausal, however it also seems to be a very common symptom of people with MPN’s.
As people have already said, a very big thank you to you Hunter for all you do for MPN Voice. You are such a fabulous role model and so many patients and their families appreciate your vast knowledge in this area and learn to be their own advocates. It was great to actually see you but better still that you seem to be there when we have a concern. You helped me out a while back when I couldn't contact my haematology team and was going into hospital and I'm hugely grateful. Thank you for everything you do.
Thank you Hunter. I am now at my one year anniversary of dealing with an mpn. Challenging, but thankfully, manageable. This site and the people I have met here are true treasures!
This is really cool! Thanks for being such an advocate, representative, and resource for all of us - and yourself. It’s a pleasure to follow you here and to see you in the video!
Just listened to the stories on utube . I feel very emotional and so grateful to u all for sharing your ongoing experience of living with MPN Thank you so much Hunter.
Immense thanks for your advocacy with the MPN community and for your great assistance in our forum here. With PV it can be difficult finding others with experiences I can relate to. Your video, and the others, have helped me to understand that I am not alone in the hurdles I have faced. Your advice regarding effective ways to communicate with healthcare providers is priceless.
Extremely grateful to you Hunter, great to actually get to meet you Steve and also Patti, Deb and Buzz. You can’t help but watch your brilliant videos without reflecting on your own MPN journey. I’m ET but your testimonies have resonated loudly and so helpfully I cannot thank you enough. I join the ranks of MPN’ers who are deeply grateful to you!!
Many thanks to all four of you for sharing your stories. We can feel quite alone sometimes with our symptoms, so it was so good to be able to hear from others experiencing the same things! And all four of you gave me things to think about. I am a bit like Patti, I do like to push myself and sometimes I just need to give myself permission to take a day off. Thank you.
Thank you so much for sharing these videos - they're all so relatable, and it's nice to put a face to some of these names we see.
You mentioned hand pain in your video. Is this something you're willing to share a little more about? It sounds like you've had some improvement and have been able to increase your activity level again, which is fabulous news. Was it determined to be part of your PV? Was there something in particular that seemed to help?
My hands have gotten worse and worse over the past 6 or so years. I've seen 2 diff hand specialists and 2 diff rheumatologists, who are all stumped and nobody has been able to offer any valuable info. For 10 years I had a small business making wedding cakes and novelty cakes, but I've had to stop doing that because I have so much inflammation and pain in my hands. My right index finger is so swollen I can barely hold a pen and take notes or sign my name anymore. I also have a large lump on the back of each of my hands that restricts my range of motion and causes pain when I clench or unclench my fist (I think maybe they're pushing on a nerve? I don't know.) I can't do pushups because of the decreased ROM and my grip strength is so terrible I can't lift weights the way I used to love to do.
If you have any insight or suggestions of what kind of Dr I can see, tests I could have done or supplements that may help I'd be ever so grateful!
The pain in my hands is primarily due to osteoarthritis and tendonitis. The pain was so bad at times, particularly in the thumbs, that I could not even carry a bag of groceries. My Integrative Medicine doctor is in agreement that systemic inflammation from the JAK2 mutation is part of the problem. I have a number of other inflammatory conditions as well.
I had previously tried high-dose ibuprofen, meloxicam and Lyrica to manage the pain in my hands. I had similar pain in the feet from plantar fascitis and tendonitis. My rheumatologist suggested that I try curcumin to see if that would help. Curcumin works better than any NSAID I ever took. It returned me to being functional.
When the Integrative Medicine doc reviewed my case, she added two other anti-inflammatory agents to the mix. One of these is SPM Active, which is a proresolving mediator. it is a concentrated fish oil extract. The other anti-inflammatory agent is L-Glutathione. I had asked about N-acetylcysteine (for which there is some evidence in MPNs). The IM doc suggested L-Glut rather than NAC since L-Glut is what NAC produces in the body that reduces inflammation. In addition, I (mostly) follow an anti-inflammatory Mediterranean diet. I also practice Qigong, which helps with flexibility, balance and movement.
This combination approach has really helped. I also believe, but cannot prove, that reducing the JAK2 allele burden should decrease the overproduction of inflammatory cytokines. That is a contention I will likely never be able to prove. Still a lower allele burden is much better than a stick in the eye.
If you are interested in complementary health interventions, i suggest consulting with an Integrative or Functional Medicine doctor. Anything that is biologically active enough to help you can also hurt you and interact with things. Most doctors are not familiar with complementary health interventions and are understandably reluctant to make recommendations. It is also important to use reliable sources when using supplements. Much of what is on the market is worthless. Expert consultation is essential.
I love baking amongst my other physical activities. I would hate having to give up something I love doing due the the pain in my hands. I am thankful to have found an approach that works for me.
I’m pretty sure tendonitis is the issue with my finger (I had tendonitis/trigger finger in my left index finger and a cortisone shot helped tons. The dr is hesitant to do it in the right finger because it isn’t locking yet, but I feel like it would help the inflammation and perhaps give me some more range of motion.) I see the hand specialist again next week, so maybe I can talk him into it.
I think a functional/integrative medicine Dr might be the best route for me. I’ll see who I can find in my area and what kind of coverage I may have for same. Sounds like that’s been an invaluable part of your care and would likely benefit me as well.
Thank you again. I feel like I’m going to have to start paying you for your time; you’ve been so kind and helpful!
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I know that at some point I need more 'balance'. 
New User Name (EPguy) and MPN as a Continuum
MPN Voice Christmas message 2022
