Hi
Happy New Year to everyone here 🥂.
Iam Et / prifabrotic Mf. On peginterferon 45 every other week.
I had my 3 months check up last week. My doc noticed that my red blood cells are smaller than normal and my iron levels are low.
He thinks I have got anemia.
He suggested to check my gut and bowel to exclude any problems there.
Anyone experience something similar Not looking forward to it at all.
I have a JAK2+ PV. I was on hydroxyurea + aspirin + phlebotomy. The docs "over-phlebotomized" me and I ended up so iron-deficient that they could not even measure my ferritin levels. Went on iron supplements for a while, but that was worse than the anemia (stops you up like a big giant cork!). The MPN specialist I consulted with said to only take the iron supplements if I want to have more phlebotomies. I decided to just eat an iron-rich diet and let my body recover on its own. Not the right choice for everyone, but the right choice for me.
Do follow up with a GI doc. If you are JAK2 positive you may be more prone to inflammatory conditions like GERD. Significant GI inflammation can also push you into reactive thrombocytosis (happened to me), so these conditions can snowball. Make sure the specialists collaborate. The docs have a tendency to do their own thing and not really consider how your body works as a whole.
All the best
Hi Hunter, I am jac2 positive and have issues with gerd. Where did you find out they are related? thanks, David.
It is more of a theory than established fact. The JAK2 mutation does more than drive hematopoiesis. It also is related to an increase in the body's production of inflammatory cytokines. The cytokine overload is thought to be the cause of a host of inflammation-related secondary symptoms people with the JAK2 mutation experience. This is emerging research and not a common part of clinical practice.
That JAK-STAT pathway is one of the body's kinase systems. It governs many processes (e.g. tumorigenesis, apoptosis, blood cell production, cytokine production). The disruption caused by the JAK2 mutation is what causes the problems those of us with MPNs driven by the JAK2 mutation. There are a variety of inflammation related conditions that this can impact. It is not well understood at this point. Another issue related to this is that injuries, inflammation and bleeding can trigger reactive thrombocytosis. I had a bout with significant gastritis (due to upper GI obstruction) several years ago that triggered a big reaction in my platelet levels. Went from low 500s to close to 1 million. Very unpleasant!
What I have learned is to view our bodies as integrated systems. One thing can effect another in ways that are not always obvious or well understood. Sometimes there are feedback loops where our body's get into a self-destructive cycle that needs to be broken. it is a bit of a chicken-egg dilemma sometimes. Does the JAK2-ET make the GERD worse or does the GERD make the ET worse? Is it both? Does it matter?? - My conclusion is that no matter what - you have to deal with both issues -especially when there is some kind of feedback loop where one problem can exacerbate another.
I deal with the inflammation with a Turmeric-Curcumin blend and another anti-inflammatory agent derived from fish oil. I deal with the GERD with Nexium. I have changed my diet to avoid things I know triggers my GERD and make a point to loosely follow an anti-inflammatory diet. Stress has a negative impact on both GERD and MPNs. Stress management is also critical. One of the most effective stress management strategies I have found is the practice of Qigong.
Hope that helps to answer your question.
Thanks so much hunter, excellent info. I too find stress is huge, to the point where I am going to retire a year early. I also have had wonderful results with curcumin, I feel it has really improved my haemaglobin counts, when used in conjunction with the eprex.
The curcumin has really helped with my osteoarthritis. I have not needed nor taken an NSAID in over three years since finding a formula that works. I really do find that stress management is a key part of my overall strategy for health maintenance. I have been guilty in the past of just stuffing my stress rather than dealing with it. VERY bad idea. Along with the Qigong (which really helps in lots of ways), I have developed a support network with family-friends-faith community and this forum that enables me to work through the tough times. I also have a favorite morale patch that says "Embrace the Suck" - which is a good philosophy.
All the best to you.
Thank you for your insights. You mentioned osteoarthritis and for that I suggest boron at least 18 mg a day after you do a search relating boron with osteoarthritis. . Also for gerd check out thiamine and what causes loss of thiamine by doing a yourtube search on thiamine deficiency.. Thiamine is dependent on magnesium to supply it's activation. Stress causes loss of magnesium. Magnesium protects you from stress. Magnesium glycinate is well absorbed and more is absorbed and retained with boron. Delta tocotrienol from annatto is not only a JAK2 inhibitor it is beneficial for the GI system too. Curcumin is also a JAX2 inhibitor and a liposomal form may offer improved absorption as does liposomal vitamin C, another JAX2 inhibitor and collagen builder.
Thanks. I am currently seriously Vit B6&12/Folate deficient and moderately magnesium deficient. Thiamine levels were borderline. Integrative medicine doc started me on a Methyl B - Folate and a Magnesium supplement to address this. I will look into the boron.
All the best
Thank you for all info
Hi Elab, I have mf and small red blood cells are one of the indicators of the disease. I also suffered from low B12, which is tied into iron. Are your B12 levels normal?
David
Low iron levels 
High red and white blood cells
Low iron levels.
Iron Levels
Iron levels. 
