Post by MPN-MATE Admin » Wed Sep 25, 2019 10:29 am
Hey all my MPN colleagues & friends...
Thought that you might all enjoy a quick scan of this article on Curcumin, that seems to suggest that its powers might be just what the Pharmacist decided not to order... because it is possible much less expensive than its well publicised rivals: i.e.: HU, Interferon & Jakafi... to name a few...
While all of this article's testing is granted, a "small cohort of participants w/ the JAK2+ mutation"
It does hold promise based upon its early results.
Hopefully, we might see further testing and larger cohorts into the Not To Distant Future? "Watch this space!"
Best
Steve
Article:
Curcumin induces apoptosis in JAK2‐mutated cells by the inhibition of JAK2/STAT and mTORC1 pathways
Hi Socrates, my specialist who’s considered an expert on MPNS told me to avoid curcumin because it affects your clotting. If you do a little research you’ll find this out. So I encourage you to caution people about this potential effect. Katie
Thanks for that, as that could be a vitally important aspect of taking a curcumin for MPNs. However, there are many who seem to believe in its values as an anti-inflammatory catalyst.
I note there was nothing obvious concerning clotting mentioned in this article. Hence, I might try writing to the lead author/s and ask that question...
Hi. If you do a little research of your own, you should find countless reliable medical sources stating this. So if the authors of the article don’t recognize it, I would advise you do your own research. I live in the U.S. where there’s easy internet access to medical journals. Not sure if you have that too where you live. I had wanted to take it for its anti inflammatory properties but MPN specialist said not with my blood thinners. Don’t know status for those with MPN who are not on blood thinners. Keep up the good work. Katie
Thanks for posting this, Socrates. I was wondering if anyone on this forum had tried Curcumin. Obviously those with a clotting problem would not go this route, but those who don't might have experimented. I have PMF Jak2+ but as yet no symptoms so while I 'watch and wait', have been trying Vit C, selenium and curcumin. Currently take 4.4 gm of curcumin per day. New blood tests are due next week so I'll let everyone know whether this regime has brought about any improvements or not.
Yes, I also have a friend who is taking it at the present who is seemingly having a most positive result as well...
I note that this article is most relevant to those withe JAK2 mutation, specifically.
In my own case, I am CALR+ Type 2, and I have suffered from two (2) thrombotic events, (TIAs - minor brain strokes), and my platelets are stubbornly in the 900s over these past few months in particular. Hence, I am watching carefully as possible as I test my own theories by taking a few curcumin from time to time etc...
I have JAK2+PV. I have been taking curcumin for years to deal with the osteoarthritis. It is far more effective than ibuprofen, meloxicam or any other NSAID I ever took. It also has fewer adverse effects. Like any effective (biologically active agent) it does have potential interactions with other medications. Specifically, Turmeric/curcumin can potentiate the blood thinning effects of aspirin. However, this effect is far less pronounced than when you combine aspirin with another NSAID.
What the docs don't like is that they tend to know very little about the use of supplements. They are more comfortable dealing with the synthetic medications they are familiar with. To be fair, there is considerable variability in the quality and consistency of supplements. I sought out the services of an Integrative Medicine specialist specifically to get this sort of expertise on my treatment team.
I am one of those people with PV who tends more towards bleeding than clotting. It was an MPN-Specialist doc who sorted this out and had me discontinue the aspirin I had been on for many years. In the past, I had used other NSAIDs on top of the aspirin to deal with the pain/inflammation from the arthritis. This was not a good thing. When I switched to the curcumin blend, results were much better. The MPN Specialist who took me off aspirin is aware of the curcumin use and had no problem with it. From my experience, curcumin is one of the most effective and least problematic anti-inflammatories available.
It appears that there are far more positive outcomes thus far that have been stimulated by this discussion, and even a couple of Private Messages too...
It is most interesting. I have also recently discovered that I tested positively to either Type 1 or 2 Von Willebrands Syndrome (VWS). My bleeding events are usually more minor in nature so Not Type3, thankfully.
However, this raises the issue as to whether or not Curcumin on its own is enough to prevent me having any further TIAs ? (minor brain strokes - had two already)
On the one hand, I need to keep my circulation flowing, (as my platelets still remain stubbornly in the 900s & this is thought to promote thrombotic events), and on the other, I don't wish to bleed profusely either... A dilemma!
I will never take HU again, although ithas reduced my platelet count in the past, however, in my view... The side effects of unwanted skin cancers, ulcers and the mental fugue are just too much to contend with...
I will be discussing the values of trying a low dose Methotrexate in combination w/ Jakafi to see if it might have some reductive effect on my platelets (?)
If that is positive, then I might follow your lead and dispense w/ the low dose aspirin, in favour of the curcumin.
I am on phlebotomy-only for my variant of JAK2+PV. So far-so good with that approach. Unfortunately, they over-phlebotomized me so not I am so iron deficient that they can't even measure the ferritin level. So for now - we are just waiting for the erythrocyte levels and iron counts to come back up before any more phlebotomies. Took an iron supplement for a while, but it made me so constipated that it stopped taking it. I would rather be anemic! I suspect that the compromise to my intestinal endothelium from the HU (also stopped me up) may not have completely resolved even 5 moths after stopping the HU. It is all a balancing act. Sometimes hard to figure out what the best course is. hate it when the 'cures" are worse than the disease.
Hi Socrates curcumin is of course the active ingredient in turmeric. I use turmeric for its anti inflammatory properties and have read that it contains salisylic acid as in aspirin. I have low platelets anyway and as far as I’m aware aspirin does not lower platelet numbers but just makes then less likely to clump together thus affecting clotting. With so few options to treat MF at present it is hard to weigh the plus and minus side of drugs. I agreed with my haematologist that I should discontinue aspirin and take turmeric as it does not cause the same stomach irritation that aspirin can cause. Maybe if my platelets get even lower I will stop turmeric too. It does seem to help my joint pain so at the moment I will continue with it.
Quite fascinating is it not the range of responses we might all eventually provide. Proving once more that there are always more variables at work in every individual than we might first otherwise suspect etc...
Yes, I am Post ET/MF, CALR+ Type 2 & I have already had possibly two suspected TIAs, (also on low dose Enteric-coated aspirin).
Recently, I learned that I am also either Type 1 or 2 Von Willebrands Syndrome (VWS), which in turn means that I am without the usual amount of clotting factor protein in my bloods. Hence, apparently that should also mean that I should not be taking aspirin, clopidigrel or anything like that... as it could promote bleeding episodes (?)
Interesting, hopefully, my specialist who I will see shortly will shed some much-needed illumination(?)
I have post ET MF with the jak2 mutation. I have had TIAs in the past but also internal bleeding (possibly caused by clopidogrel). We seem to have to walk a tightrope all the time to stay out of trouble both ways
Hi I’ve been taking Curcumin for about 6 weeks now. It was recommended by a friend for joint and bone pain. I only started taking after my last appointment so don’t know if it’s had any effect on my platelets but my bones and joints are definitely less painful.
Like you I have ET- CALR Type 2 since 2015 and have been taking tumeric for my arthritis in place of difene for about 5 years. I also take coated aspirin for cholesterol for many, many years without any side effects. I'm on 2/3 Hydrea 500 capsules daily (18 weekly).I am also type 2 diabetic on metformin to complete the medical challenge of survival!!
I find that I now have very little/manageable joint pain and can walk pretty freely which I could not do in the past. I play golf and usually walk the course 2/3 times a week!! Being able to do that at 74 gives me great joy!! I take 1 capsule daily of turmeric which I buy in a local health shop - it is made up of 1200mg of root extract curcummin 95% mixed with black pepper. Life is great and for me the tumeric deserves most of the credit!!
Thanks for your thoughts on this. Curcumin has come up for a while on this forum. In the article from this link you’ve posted it describes how leucocytes from JAK2 V617 F + patients were isolated and treated in the laboratory with various concentrations of curcumin solution. There was no oral administration of curcumin to patients. So I think the article needs to be read in its fullness and care taken with any assumptions. There’s quite a bit on the web about issues with bioavailability of curcumin through human consumption eg en.wikipedia.org/wiki/Curcumin says “Curcumin has no confirmed medical use in spite of efforts to find one via both laboratory and clinical research. It is difficult to study because it is both unstable and poorly bioavailable. It is unlikely to produce useful leads for drug development. (3) (2017).” This article also provides links to other research. And it also has a note about research fraud on this topic: “Bharat Aggarwal was a cancer researcher at the University of Texas MD Anderson Cancer Center, who as of April 2018 had 19 papers retracted for research fraud. Aggarwal's research had focused on potential anti-cancer properties of herbs and spices, particularly curcumin…”
While I too hope that something positive and of benefit to MPN patients can come out of research into curcumin, there is currently no evidence of its effectiveness. The Wikipedia link also says “The US government has supported US$150 million in research into curcumin through the National Center for Complementary and Integrative Health, and no support has been found for curcumin as a medical treatment.” False hope can lead people to spend a lot of money and risk their health by unsuitable experimentation. So while I don’t want to discourage sharing of articles, a word of caution that this article isn’t about human consumption trials, and people ought to speak with their medical providers before taking curcumin. We are all desperate for relief from the dilemma of our diagnosis.
You do make some valid points, and just to continue to do so...
The article I have posted is bona fide, and I have checked its sources for the same, and there are no conflicts of interest. While bioavailability might be an issue worth mentioning, these results are still most noteworthy, in my view...
As to some of the sources that you have mentioned: Wikipedia for one, anyone can contribute to that source, and therefore I would not hold its claims out to be valid and tested, at this juncture.
Many big companies also have many minions always at work to protect their vested interests, and as you say, we do indeed need to be most mindful of any false or fraudulent claims.
I have been reading posts on this site for quite sometime now and have never felt compelled to reply/comment until now. I was diagnosed with Myeloma in June 2018. Very long story short, Hematologist said nothing to do but "Watch and Wait" Anybody who knows me, well lets just say, that did not work for me. I began reading everything I could get my hands on to improve my chances of not having to have a SCT or Chemotherapy, something less toxic. I had found numerous articles on Curcumin. Most positive, some a bit scary. It took me two months to finally purchase the Curcumin and another month before I started taking it. Suffice it to say I am on 6g Curcumin with Bioperine Daily. It has been over a year now since being on Curcumin and I am happy to report that all of my blood counts are Better than at diagnosis. I realize we are all different and we respond differently to all meds and non-Meds and we all most be careful and speak with our doctors before taking anything. I just wanted to post my own personal experience with Curcumin.
Well, I for one am extremely glad to hear from you and from your reports of stable bloods. Fantastic, really excellent news!
Yes, we are all just a tad different that is very true, and that simply means that our body's chemistry might react differently from one person to the next... depending on the drug/s applied etc.
However, learning about your excellent news is most uplifting, and I am really so glad that you decided to share it with us too...
Thank you MCG2002...
And long may your condition remain under control...
May I ask a few questions too please...?
You were diagnosed in 2018, but do you have any of the 'Driver' mutations like JAK2+?
Or any of the others...? How old are you? And are you taking anything else other than the "Curcumin with Bioperine Daily"?
Hi Steve I was not tested for JAK2 however I have severe Fibrosis via BMB with del (13q) Platelets 212 R(150-400l, WBC 5.7 R(4-10), Hgb 13.2 R(10-15) However my IgA was exceedingly high at 2039mg/dL R(30-436), Kappa High Lambda Normal K/L Ratio 2.3 slightly over normal however. Was much higher. My FISH and Cytogetics are considered Very Bad with High Risk Progression. I am thankful I am currently considered Stable. My new favorite word. My name is Donna and I just turned 59 years old.from NY. I have been reading your posts for awhile now Steve. Thanks for reaching out.
My pleasure... That's why are all here is it not, to express our empathy & to learn from each other too...
Although I confess to knowing very little at all concerning Myeloma... Nothing actually!
The main reason I asked about the JAK2 was because the article I provided via my own website: MPN-MATE.COM & MATES Forum; really refers to the trials done w/ Curcumin:
Hi Steve, thanks for this. I have systematically been including tumeric (with black pepper) in my diet now for 9 months. I have blood tests done every 3 months and at each of these last 3 my blood has been such that I have been able to reduce my hydroxy by 1 tablet.. I now take 9/week, instead of 12. Besides taking curcumin I have focused on an anti inflammatory diet.
As you have pointed out before, the amount of research into diet is very limited, but the idea of dietary control is much more appealing to me than by chemotherapy.
I have heard that curcumin could affect clotting and also of it interfering with the action of hydroxy, but not seen articles, I will certainly search further.
Hi... I believe that all of us should first run it past our medical teams because each of us have a slightly unique illness, and one answer does not work in all cases...
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