I haven't posted in a while as I've been working on my mindfullness and trying not to worry so much about my MPN.
Long story short: I've been thinking about how MPNs cause inflammation and seem to also be driven by inflammation. I have a form of arthritis in my hands called Erosive Inflammatory Arthritis. I had a big flare and had to resort to 300mg of Celebrex a day to get it under control. The flare is over and I can stop the Celebrex. While I was on the Celebrex, my bloodwork came back looking quite good. That could be down to a few factors. I started taking 800mg of Pomegranate extract, a known JAK 2 inhibitor. And I stopped eating red meat except for once per week. I already ate a nutritious diet and workout, but this change I made about six months ago seems to help with my main issue of fatigue. I'm much less tired these days even though I still need a nap more days than not.
Anyway, I got to thinking about other meds that are anti-inflammatory. For instance, the antibiotic Doxycycline, in low-doses, is an anti-inflammatory drug. Has anyone else tried other anti-inflammatory medicines to see if they had an effect on their numbers?
I have high platelets with basophilia and I'm teetering on high hematocrit. I was looking at having to start phlebotomies, but got a reprieve as my hematocrit fell to 41%. Whew!
I would be interested to hear of any alternative anti inflammatory treatment. I suffer from endometriosis and been DX with PV in June this year. Now taken off all forms of anti inflammatory which is hell as nothing else works. The fact PV has an inflammatory aspect to it, I wonder what we can safely take to reduce inflammation wherever it stems from.
Due to being on aspirin they tell me all anti inflammatory medications are too risky for bleeding, I think. I have an appointment soon with an MPN Specialist and will be asking about this.
The inflammation related to PV and the other MPNs comes from deregulation of the JAK-STAT pathway. This does more than cause the body to make too many blood cells. It also causes the body to make too many inflammatory cytokines, The inflammatory process is in overdrive too. This causes us a host of issues.
We each need to work to find our own solutions. Our friend Elizka posted a list below that is quite good. I have a similar list. See below.
Thanks Hunter. Good to get lists of what others are using. There is so much out there but nothing beats recommendations. I agree with you about medical fraternity not having an understanding of alternative options and it is important to explore all options with a focus on project managing all care providers.
Following my specialist appointment I plan to find a nutritionist/functional medicine specialist I can work with.
My hematologist, with whom I had a rocky start with, is turning out to be quite supportive of any kind of nutritional and/or supplements I want to try. She said she considers diet, exercise, and nutrition as medicine.
Hi Lena. My protocol includes practices and supplements.
I wear a CGRP monitor and try to make sure I don't eat thing that spikes my glucose. I exercise almost every day, and focus on keeping my weight in check. I also fast using Prolon two or three times a year. I put a big focus on gut health and eat a lot of greens.
I also take:
Cymbiotika Molecular Hydrogen
Metopure (Urolithin A) new research shows this helps with joint health as well:
originalText
Curcumin
NAC
Omega 3's
Pendulum Glucose Control
Protein power:
Ka'Chava
Green drink:
AC1 9 (formally Athletic Greens).
This is not an entire list of my supplements, just the ones I use to possibly help with inflammation.
Hello my friend. Just a quick note about language. We do not need the doctor's permission to do anything. The doctor needs our permission to prescribe something. Doctors consult and recommend. Patients decide,
Many Western trained doctors are unfamiliar with complimentary health interventions. They simply do not have the training to provide expert consultation on them. Understandably, they can be reluctant to recommend something with which they are not familiar. That is why consultation with a knowledgeable provider is so important. These doctors are often Integrative or Functional Medicine specialists. They can be a very valuable member of a care team.
The MPN Specialists with whom we consult are key members of our treatment team; however, we cannot expect them to know everything. We need a collaborative relationship with all of our providers that is marked by mutual respect and a willingness to learn.
I always let my entire care team know everything I am doing/taking. My list is quite long too. I also consult with a knowledgeable provider about everything I am doing. I do not ever ask for permission to do anything. It is my body - my choice. I value and respect the input from my care team, but I make all of the decisions.
Ok i understand what you mean. But sometimes, some supplements may do harm if taken together with drugs. Curcumin/ garlic supplements may cause bleeding together with anticoagulants. (Sorry for my English, sometimes it is to hard for me to compose the right sentence!!)
You are quite correct. Anything that is biologically active enough to help you can also hurt you. And interact with things. Many anti-inflammatory meds and supplements are also blood thinning to some degree. We do need to be careful about what we combine. That is why expert consultation is so important.
For what it's worth, I have both seen Doxycycline prescribed and, as a PA have prescribed it for its anti-inflammatory properties, especially as relates to skin diseases known to have a large inflammatory components like Rosacea, Acne, and Hidradenitis suppurativa. We most often start with a week or 10 days at 100 mg twice daily and then decrease it to once daily.
My most frequent concern about using it is GI problems, which are usually due to its antimicrobial action in the gut,
Thus I try to get my patients to drink kefir and/or kombucha, or at the very least yogurt with active cultures [and to eat pre and pro-biotic foods] to keep the microflora as intact as possible.
I don't recommend or prescribe probiotics otherwise, because the evidence doesn't support their efficacy.
I also take Curcumin, but not so much as an anti-inflammatory, but because of studies that showed it can trigger spontaneous apoptosis [definition: the death of cells which occurs as a normal and controlled part of an organism's growth or development] in JAK-2+ mutated cells preferentially- while not affecting normal hemopoietic stem cells [HSC].
My osteoarthritis is reasonably well-managed by taking Nabumetone a nontraditional NSAID [when taken, it is in the form of a pro-drug- which is non-acidic, and is not biologically active until it is metabolized by the liver into an active and somewhat selective metabolite], because it is the only NSAID I can take without horrible heartburn and stomach pain.
Unfortunately, since I have been taking Hydroxyurea [HU ], I have been getting ever worsening heartburn anyway- despite my Prilosec Rx.
I am trying to find a reliable source for L-Glutathione or Acetyl-Glutathione, but I don't have very much faith in claims made by supplement companies, so I haven't found one so far.
I eat fresh raw garlic (2 pieces of it) a day. I smash it, wait 5-10' and swallow it with a glass of water 💦 like a pill. Once in a while i take Curcumin supplement with piperine and some good probiotics.
Glad you decided to post on this issue. MPNs are at the core inflammatory disorders. Controlling inflammation is a key part of our treatment.
FYI - my MPN profile is similar - thrombocytosis, basophilia, arthritis/tendonitis in the hands (an other places too). The only difference is that my erythrocytosis did progress and I now have PV rather than ET.
I have used a strategy of controlling inflammation through several different approaches. I consult with an Integrative/Functional Medicine doc who is an important member of my treatment team.
Here is what has helped/not helped me.
What worked/helps.
Curcumin (in bioavailable form) - the single most helpful intervention.
L-Glutathione (an alternative to N-Acetylcysteine which also helps)
SPM Active - a pro-resolving mediator (fish oil derivative)
Mediterranean Diet (mostly)
Qigong (Tai Chi is one form) (used for promoting health/healing/mindfulness)
What did not help
NSAIDS (ibuprofen, Meloxicam)
Lyrica
Sedentary lifestyle
Hope you find an approach that works for you. It is important to let your care team know about any complimentary health approaches you decide to try. However, be aware that many Western-trained doctors are not familiar with these interventions as it is not part of their training, That is why it is so helpful to consult with a provider who has this training.
I agree w/ the need to try to keep a handle on our bodily 'Inflammation', & that each of us has a somewhat diverse body chemistry that may act differently from that of another...
In my own case, I try to keep it as simple as possible by maintaining a largely "Anti-Inflammatory" diet... Which is simply 'Plant-Based' & try to consume as little as possible 'Processed' food items... (One just cannot really ever be completely certain of what might be in a can or packaged food etc?) Irrespective of what it might state on a label, so, just avoid where possible...
Raw Beetroot seems to aid my endurance levels by opening my vascular system, it also lowers the levels of my overall BP, when involved in intense exercise...
As Steve mentions above, staying active can really assist negating against the build up of bodily inflammation...
I didn't know if the actual beets have enough of the phytonutrients to have much effect, and the article were somewhat contradictory. But the consensus was that raw beets are much higher in them, and I figure that whatever you consume them, they can't but help.
My familiarity is more with beet juice, which as Socrates intimated about the roots, has been well-proven to lower blood pressure and vascular resistance, which effects have been carefully evaluated and are attributed to the aforementioned phytonutrients.
Also, I forgot to mention that SWMBO and I are taking a cranberry supplement which contained [IIRC] 500 mg of whatever Phytonutrients they contain concentrated into 2 gummies:
Quercetin. The most abundant antioxidant polyphenol in cranberries. In fact, cranberries are among the main fruit sources of quercetin.
Myricetin. A major antioxidant polyphenol in cranberries, myricetin may have a number of beneficial health effects.
Peonidin. Alongside cyanidin, peonidin is responsible for the rich red color of cranberries and some of their health effects. Cranberries are among the richest dietary sources of peonidin.
Ursolic acid. Concentrated in the skin, ursolic acid is a triterpene compound. It’s an ingredient in many traditional herbal medicines and has strong anti-inflammatory effects.
A-type proanthocyanidins. Also called condensed tannins, these polyphenols are believed to be effective against UTIs.
..and no, neither of us have issues with UTI's [just in case you were curious].
Hi Lena. Here are three articles and some of the things I've seen discussed on inflammation and their references:1. IFN and ruxolitinib: Hasselbach article-MPN trmt and inflammation-2015.pdf
2. Mediterranean diet: Diet as an approach to reduce inflammation in patients with MPNs | VJHemOnc
3. Statins, NAC, colchicine: New Perspectives of Interferon-alpha2 and Inflammation in Treating Philadelphia-negative Chronic Myeloproliferative Neoplasms - PMC (nih.gov) Hasslebach & Silver Dec 2021. Quote: ‘Based upon the highly encouraging results from combination therapy of stem cell-targeted therapy with rIFNα and the potent anti-inflammatory drug, ruxolitinib, we also place in perspective studies of combinations with older, inexpensive agents (eg, statins, N-acetylcysteine, and colchicine), which have well-established anti-inflammatory and antithrombotic capabilities.’
Conclusion: The concept of chronic inflammation as a major driver of disease progression in MPNs opens the avenue for clinical trials in which the two most promising agents within MPNs— IFN and ruxolitinib—are combined and instituted in the early disease stage according to the early intervention concept. The proof of concept and the rationales for this combination therapy have most recently been published [147] and a Danish study on combination therapy with low-dose pegylated IFN and ruxolitinib is ongoing with very promising preliminary results. The ability of IFN to induce deep molecular responses with normalisation of the bone marrow, even years after cessation of IFN, and the role of inflammation in the initiation and progression of MPNs make the combination of IFN and ruxolitinib one of the most promising new treatment strategies for patients with MPNs .
The second one is by Dr Angela Fleischman, Uni California Irvine, who's conducting research on Mediterranean diet and MPNs.
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