Anti inflammatory diet and PV

[Emser]

I read a post about an anti inflammatory diet prolonging your life if you have MF. Is the same true for PV? Why has my MD not said anything?

[Paul123456]

See

youtu.be/FzyoPAGTu-U(Not working as expected?)

[Emser in reply to Paul123456]

Thank you Paul123456!

[mbr8076 in reply to Paul123456]

I just watched this yesterday; very informative. My husband retires this June and 4 of our six children transplanted to Southern California. We are set to move there in about 8 months and was looking for an MPN specialist and came upon Dr. Fleischman and this clip She will be my choice of hematologist

[Cja1956 in reply to Paul123456]

This is really great information, Paul. When I got my diagnosis of MF last year in September, I started researching on how to eat better. I’ve had fibromyalgia since my 30s and got diagnosed with arthritis in my 40s and ET when I was 52 in 2008. This Mediterranean diet keeps coming up in my research. Thanks a lot for sharing this video.

[buddin11 in reply to Paul123456]

Thank you for sharing this. I actually had a stem cell transplant over a year and a half ago, but continue to struggle with low red blood counts so am still very weak. I just purchased a new book on anti inflammatory diet where you eat only certain foods and then add back in other foods one at a time, to determine which is causing your symptoms. I have an appointment with my specialist next week and will definitely discuss this with him.

[Paul123456]

And!

ashpublications.org/blood/a...

[Osteomyelio in reply to Paul123456]

Thank you for posting this

[hunter5582]

The evidence that an anti-inflammatory diet helps directly with the MPN is largely anecdotal, but there is good reason to think that it could be helpful. If nothing else, it can certainly help with the secondary inflammation-related symptoms many of us experience. For those with the JAK2 mutation, the disruption of the JAK-STAT pathway can cause an overload of inflammatory cytokines. The JAK-STAT pathway is one of the body's kinase systems and is quite complex and has significant impact on a number of things in your body, including tumorigenesis and apoptosis.

FYI - for managing the inflammation issues, I have had success with a Turmeric-Curcumin supplement that is readily bioavailable. Have not needed nor taken a NSAID in over three years.

All the best to you.

[Paul123456 in reply to hunter5582]

I’ve been trying to determine best way to measure MPN induced inflammation. Does CRP cover it? We know that LHD measures progression and therefore inflammation.

We also know that inflammation from smoking blocks the pathways used by INFs. And inflammation from additional mutations such as TET2 can inhibit Pegasys efficacy.

Aside from reducing INF effectiveness, does inflammation exacerbate any INF side effects. ie patients with high levels of inflammation suffer worse INF side effects.

Finally, some hems prescribe Ruxo/Pegasys combo for those intolerant to Peg. The Ruxo is an anti inflammatory.

As you say, the $m question is does an anti inflammatory diet work on these MPN pathways? IMO it’s a no lose choice! A healthy diet is clearly sensible regardless, if it transpires that it can help reduce symptom burden/delay progression, bingo!

When I started Pegasys 18 months ago my AB was 80% and rising. I also had the TET2 mutation. All bloods to high. LHD 220.

Today all my bloods are too low, my JAK2 AB now 13%, LHD 110 and I’ve slashed Peg dosage to 45mcg every two weeks.

Why have I had such a good response despite TET2?

Possibly my anti inflammatory diet..........! My CRP < 0.3.

[hunter5582 in reply to Paul123456]

Finding valid markers to measure the impact of interventions on inflammation is a real challenge. Systemic inflammation has such broad and disparate effects that it is difficult to assess. I experience osteoarthritis, planters fasciitis, eczema, insomnia, and GERD amongst other things. All are likely related to the increased cytokine load stemming from the JAK2 mutation. Unfortunately, directly measuring cytokine levels is not a common clinical practice as these labs are seen as more a research tool. Perhaps C-Reactive Protein would be a logical choice, though I expect it is an indirect measure.

I am still looking to find some valid markers to assess whether intervention are doing any good, particularly when using complimentary health approaches. I am using more than one thing, so impact of any one is not likely to be clear. The most noticeable and easiest to subjectively quantify is the level of osteoarthritis in my hands. I am going to discuss this issue with the Integrative Medicine Specialist the next time I see her as she is the one doc who really does focus on this issue.

Meanwhile - on to the a healthy diet. It makes sense no matter what - eat good to feel good. I do currently need to eat a bit more lean red meat (and other heme-iron sources) than usual as the docs over-phlebotomized me and I am severely iron deficient. Can't stand to take the iron pills so I am addressing it though diet only. It is a good thing that I actually enjoy the healthier eating and something close to a Mediterranean Diet is what I would eat anyway.

Stay well.

[Lena70]

I had to pause at 3:49 as she just said MPN patients are more likely to have a preceding autoimmune disease.

I have Celiac Disease. It is very well-controlled. My last follow-up biopsy showed no signs of villi blunting or inflammatory cells. But I was misdiagnosed from the time I was a child until I was 38. I walked around with an uncontrolled autoimmune disease thinking I was prone to food poisoning and the stomach flu for decades. And for the past five years, from what my old labs show, I've been walking around with PV.

I have a lot of research to do and a lot to think about.

I already eat an anti-inflammatory diet. Sigh...

[Moina-vdh in reply to Lena70]

Hi Lena,

I too have coeliac disease, my PV and coeliac disease were diagnosed at the same time, symptoms didn’t make much sense, as there were two separate causes. My GP kept sending me home, as they had no idea what was wrong. Luckily I managed to see a private doctor and they took my symptoms seriously. It would be interesting to know whether our two illnesses are linked. My coeliac disease is well under control by appropriate diet, however, I’m very sensitive nowadays, and will react to smallest amounts of gluten. Both of my illnesses were diagnosed in 2015, so I while ago now.

[tracey13]

My husband is calorie counting now trying to lose the 1.5st he's gained since starting ruxolitanib!

He's also doing dry January not that he was a big drinker he's just wanting to compare blood test see if some of his levels come down as his WBC was 15 million and it says a bad diet can cause white cells to rise.

His liver function results are high too. So we hoping dry January brings his levels down if not it's definitely his medication causing these levels to rise .

Tracey