Post by MPN-MATE Admin » Sat Apr 04, 2020 11:17 am
Hey everyone...
Hoping that you are all staying safe & well in these difficult times...
Naturally, being 'Homebound' so to speak gives us all new opportunities to turn ourselves to other tasks we do not always have time for...
With that thought in mind, I have returned to a subject that I believe affects and should concern us all where MPNs are concerned.
INFLAMMATION
Cytokines, (which are basically small proteins), are largely responsible for causing what some refer to as a 'Cytokine Storm', which in turn causes scarring to the bone marrow and in turn we refer to as 'Fibrosis'. An increase in Fibrosis is often an indicator of progression...
Hence, anything that we can do to reduce the inflammation in ourselves stands to reason could possibly assist us in encouraging greater longevity, in my view...
The following is an extract from an article that draws similar conclusions:
Hi Steve good word! We are trying to eat right and exercise. Swimming is out as gyms are closed so we are walking, several times a day. I do some steep cardio hills to keep the heart pumping. Also got my bike ready to start pedaling like you 😊
We also try to stay away from sugar and processed foods, so committed someone dropped off amazing home made bake goods as a treat for us. I had a few bites and said to my wife this stuff is going to our grandkids tomorrow 😊👍
I continue supplements esp Tumeric which is really great to fight inflammation.
Hi Kdavie, great to hear from you. I take Garden Of Life extra strength turmeric inflammatory response 553 mg twice a day , Nordic Naturals Ultimate Omega 2 gels, Vit D3 5,000 iu’s, Zinc 50 mg, , Vit C ascorbate crystals 1/2 teaspoon a day mixed in water, pure unsweetened cranberry juice, and a turmeric shot each morning , baby aspirin, and lots of daily prayer.
Hi Kdavie; I was diagnosed in May 2019 with ET. My platelets by God’s Grace have been lower and stable since diagnosis. I’m a vigorous swimmer buy waking now because the pools are closed because of the virus. Exercise is very helpful for stress and cardio.
I truly give Glory to God as He sustains us as we look to Him for our daily health and wisdom as to treatment protocol. I have Doctors who are also dependent upon the Lord for helping their patients. I’m a pastor so I’ve seen God do miracles in many lives. Stress and inflammation are critical things that must be minimized and prayer is essential even for people who are healthy especially in this time of worldwide pandemic. God’s Grace & Peace
Hi Clarke, your words are comforting, thank you. I was diagnosed with ET about 27 years ago and it morphed into PV for which I now take Pegasys. I have a lot to be grateful for, the amazing doctors, the medication, the lovely people I come across, all these and more are miracles God has provided for me.
Thank you! I need to adjust how I live and my diet, having been diagnosed 8 weeks ago, so the information you provide, and the time you put in is appreciated.
The exercise bit isn't so possible for me, as my hip replacement was delayed til treatment brought my platelets down, and now is obviously not going to happen til the corona crisis is over. But diet i can tackle! Cutting sugar out has been easy, I have little appetite since being on hydroxy, especially for sweet things ...😊
Sounds to me like you are all geared up to do the very best that you are able to do... And that is just perfect!
A bad Hip is no fun at all... and as you say would make exercising per se... most difficult...
However... you can do loads of 'Deep Rhythmic' Breathing exercises...
With all of us MPNers, our circulatory systems are also impaired, and often that is simply due to a lack of oxygen in our Red blood cells... Consistently practising good breathing exercises really does help me Minu...
And I am sure it can help you too...
Very best wishes, and welcome to our rather exclusive little MPN Club...
I've been doing mindfulness, really helps in managing the pain, will look up your suggested breathing technique.
Feeling strangely pleased about your 'exclusive club' comment.....making the diagnosis one of being in a privileged position rather than a negative situation 😁😁
This information is so helpful....I have et and have recently been diagnosed with rheumatoid arthritis.... I took the medication as I was in so much pain ... Sulfasalazine... this medication gave me my early symptoms of et back , spinning sensation and generally unwell... felt near to having a stroke... so stopped ... , I was ok with hydroxycarbomide... but When the inflammation began it was pain hell ... I’ve stopped the Sulfasalazine and am feeling so much better , inflammation is present but bearable .... my problem is gp or /and main mpn advisors don’t seem to be aware of mpn and inflammation ..just keep telling me I have rheumatoid arthritis ...I’m taking this information with me next appointment with hospital ... whenever that will be ...
Current climate .... can you sign post me to a site or anything as to what I need to do or take to reduce inflammation..... thanking you so much ... stay safe ... love to you and all x
Firstly, you must remember that I am not medically trained, and therefore the research I undertake I do so for myself, and I like to share those findings in the hope that it might assist other MPNer brothers & sisters etc...
However Lainie, I am just like you another, MPN Patient, seeking ways to improve my own quality of life through research and understanding...
In my view, I have little cause for doubt as I have already benefitted via adopting an 'Anti-inflammatory' diet, intermittent fasting and a consistent exercise regime...
Having a suppressed immune system means that I suffer a great deal at times from anaemia, which is simply a shortage of oxygen in my red bloods cells. That oxygen is what is responsible for my energy levels... Hence, I must improve upon my MPN by utilising methods that can assist my energy reserves... Almost everyone that has an MPN also has a blood circulatory issue too...
Lainie, where are you located? In Australia we possibly have just two (2) recognised MPN specialists, however, it is my understanding that the UK has quite a few to choose from...
If your current MPN doctor does not help you by being a bigger part of your MPN journey, then find another who will... I believe that the well-being of every MPNer begins by having an understanding and empathetic medical team who truly want to see you improve your Quality of Life... It is therefore essential for us all to self-advocate and find the medical attention we both want & need to live our lives as best we may...
Below, I have added a few links for you to have a read through...
I have osteoarthritis and plantar fasciitis along with GERD, eczema, and insomnia. All inflammation-related symptoms I believe are associated with JAK2+ PV. I am working with an Integrative Medicine specialist to deal with the systemic inflammation. So far, we have identified one objective marker that is elevated - TF Growth Factor Beta. C-reactive protein was WNL. We will be monitoring some other inflammatory cytokines, including TNF-alpha (which is one of the main culprits in the literature).
I am doing the following: 1. Lost 50 pounds 2. Exercising more 3. Practicing Qigong 4. Healthy diet - loosely anti-inflammatory/Mediterranean. 5. Taking the following anti-inflammatory supplements - Turmeric-Curcumin, SPM Active, L-Glutathione.
Got started down this path when my rheumatologist suggested trying Turmeric. When I found a good turmeric curcumin blend, it worked better than any NSAID or other synthetic drug (Lyrica) that I ever tried. I have not needed nor used a NSAID in over 3 years. It is important to know that turmeric-curcumin is not readily bioavailable. It needs help to pass into the bloodstream, so the formula matters. I use one with a proprietary curcumin formula called CurcuWin.
Can't say whether this will help in your case. We each react differently. If you do pursue any of these supplements, do be aware that the formulation matters. Also know that most anti-inflammatory tend to potentiate aspirin or other blood thinners. Many docs are not familiar with these complimentary health approaches. They can and do interact with the other meds you take. Finding a doc who understands both Western Medicine and these alternative approaches is important.
Thanks for adding your voice as another who has witnessed the benefits of trying to suppress 'Inflammation' through what really is a 'common-sense' approach, in my view...
Best wishes my friend, and please stay healthy & well in these difficult times...
Glad you are tracking and posting information about the role of inflammation with MPNs. There is a lot of really good and promising research underway on this topic. I was in touch with Dr. Angela Fleishman regarding the Familial MPN study. Her group is also looking at the role of inflammation. They have found TNF-alpha to be one of the more useful cytokine markers of inflammation. They have had some success with N-Acetylcysteine in reducing inflammation. When I gave this information to the Integrative Medicine doc, she suggested trying L-Glutathione instead. She explained that NAC is the precursor to L-Glutathione, which is what actually reduces the inflammation. There is a newer version of the L-Glutathione that is in a capsule and easier to take. I am giving it a try. We will see if it helps.
All the best to y'all down under. Stay well and safe.
Thank you Steve, I was just about to look up the information on MPN's and cytokines again as a doctor on UK television when talking about the Virus, mentioned a cytokine storm occurring when the virus was in the bad stage. This article is very helpful. I'm making sure I have at least 15 mins quick walking round and round the garden each day while in lock down. Best wishes to you and your wife, keep safe and well. Fran
Exercise & diet and the best things to maintain in order to improve our fitness & longevity, in my view...
Best wishes Fran, stay healthy & well...
Steve
PS. Ummm... Fran, I have no wife/partner these days... And all my work means that I would most likely not be well suited... I fully intend to continue to Fundraise using our new Australian 'Not For Profit' to raise funds for research into MPNs here in Australia, where presently.... so little is done for people with MPNs... S ox
Hi Steve, that’s really interesting, but if exercise causes inflammation and pain, is this causing the very increased bone marrow activity that we’re trying to reduce?
Cytokine activity I thought was what caused the flulike symptoms and muscle pain. If exercise causes the inflammation how do we stay healthy without kicking off increased bone marrow activity?
I find myself with a desire to keep fit, but also wanting to avoid the pain afterwards and not wanting to increase blood activity. Seems a bit catch 22.
You'll find that the more exercise you do, of the correct type, the less pain you will be suffering. Walking alone uses many muscles and releases them each morning, for me. Pain goes as a result. Yoga is another excellent remedy.
I'm actually worried that having an MPN does indeed but us at greater risk due to our elevated number of cytokines. I posted about this before. I also read that rux is being tested as a treatment for COVID-19. targetedonc.com/news/phase-...
My own understanding is that those of us w/ MF are at higher risk, because our treatment is basically one of immunosuppression, which simply means a more compromised immune system than others and therefore at more risk of infection etc... In most cases...
I am MF, & my way of dealing with being at higher risk is to keep myself as fit & active as I possibly can through an anti-inflammatory diet, intermittent fasting & a consistent exercise regime... all of which helps me to manage my energy levels better & increases my ability to retain my muscle mass, as I continue to age... (60yo)
As we age, we tend to become more sedentary, and might eventually become sarcopenic.
"Sarcopenia is a condition characterised by loss of skeletal muscle mass and function. Although it is primarily a disease of the elderly, its development may be associated with conditions that are not exclusively seen in older persons. Sarcopenia is a syndrome characterised by progressive and generalised loss of skeletal muscle mass and strength and it is strictly correlated with physical disability, poor quality of life and death. Risk factors for sarcopenia include age, gender and level of physical activity. In conditions such as malignancy, rheumatoid arthritis and aging, lean body mass is lost while fat mass may be preserved or even increased. The loss in muscle mass may be associated with increased body fat so that despite normal weight there is marked weakness, this is a condition called sarcopenic obesity. There is an important correlation between inactivity and losses of muscle mass and strength, this suggests that physical activity should be a protective factor for the prevention but also the management of sarcopenia. Furthermore one of the first step to be taken for a person with sarcopenia or clinical frailty is to ensure that the sarcopenic patient is receiving correct and sufficient nutrition. Sarcopenia has a greater effect on survival. It should be important to prevent or postpone as much as possible the onset of this condition, to enhance survival and to reduce the demand for long-term care. Interventions for sarcopenia need to be developed with most attention on exercise and nutritional interventions"
Hope this helps a little...
Best wishes
Steve
REFERENCE
Valter Santilli, Andrea Bernetti, Massimiliano Mangone, and Marco Paoloni. "Clinical definition of sarcopenia" Clin Cases Miner Bone Metab. 2014 Sep-Dec; 11(3): pp. 177–180.
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