I've come across a fair few articles in the main stream press about curcmin supplements - (Curcumin being the active ingredient in the spice turmeric).
There seems to have been quite a lot of serious research into its various properties including its positive impact (for some people) in stabilising multiple myeloma. This was discussed on BBC Radio 4's Food Programme a few weeks ago. A London based Consultant Haematologist discussed the remarkable effect it appeared to be having for one of his patients in particular. The case notes for this patient were published in the BMJ.
Does anyone know anything about curcumin or has anyone discussed curcumin's potential effects with MPNs?
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christiev
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I heard this on radio 4 and decided to try it. I have been taking it for around 6 weeks. I have ET Jak2 +. I am due for my next check up mid August so will see then if it has had any effect on my counts. I also have arthritis and curcumin is also supposed to be good for joint inflamation. The pain in my feet has been much improved over the last few weeks though it's possibly coincidence.
Yes it did. I still suffer pain but it became more bearable, especially in my feet. I take far fewer painkillers and previously I was having pain killing injections every 6 months but have had only two since.
I only know that a friend of mine who is a medical herbalist suggested I use turmeric and also ginger capsules to help with thinning the blood. I have a diagnosis of Essential Thrombocythemia and it has seemed to help. I know that research shows that taking turmeric capsules is not effective, it's only the fresh spice that helps.
Hi, I tried the capsules for quite a long time but they had no impact on my blood counts. I then read capsules are not effective so bought organic turmeric, cinnamon and ginger and made a drink every morning using these and almond milk. Unfortunately again, after months of drinking this religiously every day it made no difference. The lady who got amazing results with turmeric took very high doses under medical supervision according to the article I read. Sorry not to be able to add anything positive. My consultant is adamant nothing I take, eat or drink will affect what is happening in my bone marrow but I live in hope! Best wishes, Frances
I am so glad you have brought this up. Even before this programme, there has been medical evidence that curcumin will have an effect on some of our conditions:
I was diagnosed with PV and Jak2 positive in 2013 and have been taking first turmeric and then also curcumin supplements on the advice of a medical herbalist. I have mentioned this on this site a few times but I haven't had much response.
So far, I am doing well, on Aspirin and the occassional venesection. My counts go up and down slightly and have not needed other meds yet. The evidence I have read in scientific papers suggests taking Curcumin (most active part or Tumeric) as a supplement and the radio programme suggests also just plain ordinary (cheap!) tumeric in food and there is evidence that black pepper be taken with it makes it more potent and that it is taken in food as it needs a soluble fat to be effective. My herbalist advised me to take both, it won't do any harm so why not. They are anti inflammatory so I generally have an anti inflammatory diet as well. I am taking a gram a day of curcumin but thinking of increasing it since hearing the programme.
I was delighted to hear this programme.
The woman in question at the end of the programme has multiple myeloma is in a really bad way and as nothing else worked, the Dr was happy for her to take large quanities or curcumin (8 grammes daily) which she did and it turned her illness around. Her counts have gone right down and her quality of life has returned.
The doctor in question is also Sheila Dillon's doctor. She is the presenter and producer of the programme. She also has multiple myeloma.
The reason there has not been research into this, like so many other natural elements is that it makes no money for the drug companies. Sorry to say that but it is so true.
I would urge anyone on this site to listen to this:
Hello Boss1, I know your post was two years ago, but very interesting to read. I have PV jak2+ Diagnosed about 3 years ago, and last 4 months have been suffering with terrible mouth sores, weekly. Nothing seems to keep them away. So saw my oncologist last week, she thinks it is side effect to the hydroxycarbomide and has taken me off them for 2 weeks to see if they go away.the one that I had finally cleared to be replace with another, which is clearing quicker.
Before I was diagnosed I started taking turmeric curcumin, for my arthritis and sciatica, and they were working well, but then I had to go on hydroxycarbomide and they clashed, so I was asked to stop the turmeric. What I am wondering, maybe the turmeric would do the job of the hydroxycarbomide ......and not the side effects. 🤔
It may well do but no doctor would dare endorse this. There was a doctor at Barts in London who did with a dutch lady (on BBC food programme) on whom all drugs didn't work so it was a last resort so he had nothing to lose and it worked.
I was interested in these posts. Leaving aside the issue of the efficacy of turmeric - and the quantities required to make an impact - I just wondered about the wisdom of embarking on a regimen of potential blood thinning substances. I was under the impression that seeking to reduce the risk of clotting but also limit the risk of bleeding was a delicate balance. I was reduced to 75mg of aspirin every other day and told that while there was evidence to suggest too much aspirin might have a negative effect there was no evidence to indicate the same with the reduced dose.
I too started taking a daily teaspoon of turmeric as my husband heard the BBC program. I made a diary note, I started taking it on 29th May daily- I have pv and et Jak 2 positive- can I just say I have never been as well since diagnosis and I take Hu 1000 mg daily. I am hoping at my next appointment I see an improvement- however if not just the fact I feel so well and no fatigue will do me. X
The best curcumin/turmeric is one that notes on the label that it has a minimum of 95% curcuminoids or percentages of specific parts as noted in the link below. Black pepper (piperine) aids in the best absorption rate by 2000%, and another good one is Meriva (a fat - phosphatidylcholine).
The two above are the most commonly purchased products. There was some concern with absorbing too much piperine, but if worried I would take meriva in addition to piperine if taking over 15mg of it. Piperine can enhance the affect of medications and vitamins/antioxidants.
I personally buy Doctors best or Go Healthy products in New Zealand but Life Extension are always another reputable company even though slightly pricey.
My platelets were slowly decreasing for 2 years without any adjustments to HU when taking 1000mg curcumin (BioPerine) and unsure if there is any relevance but when I decreased to 500mg my platelets have steadily increased and that is with an increase in HU and they now want me to increase dosage further.
Be sure to let us know how you get on. It may take a couple of months for it to start working. 😎
I have recently been diagnosed with PV and have just started a series of intensive Phlebotomies which seem to be bringing my Hemocrit levels down to acceptable levels, but I also read about the positive effect that Circumin could have on PV so I did some searching about on the internet where I found this research report that seems to support the potential benefits of taking Curcumin tablets, see academic.oup.com/carcin/art...
From what I have read talking Turmeric will not give you enough of the active compound so I have started taking a daily Circumin softgel tablet with 40mg of Circumin. The tablets are quite expensive, and I don't know if it will help, but I thought it was low risk so I decided to give it a try.
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No curcumin while on hydroxy?
Curcumin
Curcumin
Hoping to find out others experiences to see if I have anything to be concerned about please 
Achy fingers any one?
