Because the various drugs on offer have had rather dire effects on me, following a friend's suggestion after reading a newspaper article about the benefits of Turmeric, I decided to give up Anagrelide and try the Turmeric instead. My haematologist is very supportive always. Says she will monitor me (very regular blood tests, usually every 3 weeks) but would be concerned if they rose from present level (hovering around 820) to a thousand. If anyone wants to try Turmeric, instead of the drugs on offer, it is essential to do so, only with the knowledge and consent of your haematologist. So far, I am feeling fine, though still get night sweats and occasional headaches. But feel very different from being on the chemo. Lost count of comments from people on my normal colour! (and definitely losing far less hair.) No one has advised how much Turmeric to take, daily, but have been highly recommended re 600 mg ones, which include black pepper. Tinkerbell13
Turmeric ok!: Because the various drugs on offer... - MPN Voice
Turmeric ok!
I like you would like to avoid going on to drugs such as hydroxy and have been taking a dash of cinnamon and turmeric in green tea perhaps 2-3 times a day along with a host of other ingredients which are supposed to help. My count is around 600 the highest it's been however this was taken 2 days after venesection and have been told platelets rise naturally after vene. I have bloods in 10 days time and hope that with taking all the various 'natural ingredients' every day, my counts will stabilise or you never know come down!!! I take up to 10 things everyday which sounds a lot but are all enjoyable and are part of my routine, in fact I feel a ton better. So fingers crossed. I hope that you have success, my tip would be to read up as much as you can on all the things you can take (consult with doc though) and see if it works for you. Best of luck😃
Many thanks, Eoin, sounds as if you are doing really well. I also take Vit C, Vit D, Silica. Forgot to mention I have ET jak+. Would guess you have pv (like my mother had, so am used to the idea of all the venesections). Also omitted to say, do very regular walking every day and try to swim as often as possible. Really wish you well and hope you will keep in touch and let us all know how you are doing. Tinkerbell
Yes PV I'll let you know after bloods if I can find you. Keep well
Eoin
Thanks again, Tinkerbell13 (that should find me!)
Hi, we exchanged posts couple of months back re my intake regime and how it's going. As you know I have PV and have just finished last of 6 venesections, my Hmb is now down to normal and other counts within normal range however my plts had reached a high of 637 when my venesections started (which I believe happens when you have venesections) however surprisingly since I started my daily routine my plts are starting to fall and are now at 545 which is not a lot I think but considering all the blood letting I am pretty Pleased they are coming down and not going up! The only meds I take are aspirin daily. Going to clinic at the end of this week so it will be interesting to hear what they say. Hope you are keeping well, all the best
Eoin
Hi, you sound v positive and doing well, with platelets down and just the daily aspirin. Mine hovering around the 850s for quite a while, just still on 600mg of Turmeric each day. Hope a successful visit to the clinic for you and please let us know how you get on. Very best wishes, Tinkerbell13
I have PV and take Hydroxy, one per day and 2 on Sunday. I started taking turmeric capsules on 4th August after lots of discussion on this site and Prof Claire Harrison saying that she didn't object to any of her patients taking it. It was stated that it could help lower platelets and it is also an anti inflammatory which I hoped would help with my rhumatoid arthritis.
I had my normal 12 week hospital appointment yesterday. My platelets increased from 304 twelve weeks ago to 354 yesterday, although I do have a cold so that would have increased them anyway. The heam I saw yesterday is a lovely Indian lady and I discussed the turmeric with her. She said it is good for the immune system and is an anti inflammatory. She did not feel it would make much difference to platelet levels and said that in Indian it is used extensively in cooking and they still have these MPN's.
On a separate question has anyone noticed weight loss with it? I joined slimming world in May this year as I wanted to lose about a stone. I lost 1st 2lbs, approx 1lb per week, which I was happy with. I stopped following the diet about the same time as I started the turmeric and find I am still losing weight! 1lb or half pound per week. I still eat healthily but have cake, biscuits, chocolate whenever I feel like it. When I googled it, it said that turmeric can aid fat burning. I'm not complaining but I don't want to lose much more. I'm wondering if I should just take one capsule per day instead of two? Two capsules contain 1400 mg. Any suggestions welcome.
Judy
Wow, such an informative post. Don't yet share the weight loss with you, though! Really interesting re the Indian lady's comments, as had wondered if MPNs didn't exist in places where turmeric is used so frequently. Obviously not so. I am happy if it just keeps the platelets the same, even if rather high, as long as they don't suddenly go up into the millions. Find it really good that Dr Harrison and other haematologists are not averse to patients trying 'natural remedies'. Hope that everyone doing so will keep in touch on this splendid forum. I take 600 mg morning and 400 mg evening - just trying it out for now, as wondered if 2x600 was a bit much....? but noting that your 1400 is even more. Kindest regards, Tinkerbell
Hello
See previous posts on cur cumin.
The BMJ case notes of a woman with multiple myeloma (not an MPN) who used curcumin to stabilise it, say that she has a whopping daily dose of 8g of curcumin C3 with biopeperin
I take turmeric as well as HU. However I make my own paste using turmeric, coconut oil and black pepper. Look at TUG (turmeric user group) on Facebook or google Dr Doug English. He's an Australian vet who has been using turmeric for years to treat various animals.
Nicky
Really helpful, many thanks - realise have been having your 'paste', but separately! Very interesting re the vet, by the way. Thanks for responding....feel it is important all of us who are taking turmeric keep in touch to work out what is most beneficial. Tinkerbell
Hi Judy,
I've been taking circumin for just over a month now.
I haven't noted any significant benefits yet, but it's very early days. I've always had a bit of fluctuating joint aches in knees/shoulders, and of late, right wrist. However, it's not something I would bother a dr with yet.
Because of this fluctuating nature, I suppose it will be hard to gage the effects of circumin. However, what I will say is that my wrist was particularly bothersome to the point that I considered going to see the dr. That has improved dramatically in the last month?
Weight loss would be good, as I need to loose about about half a stone. As I have cut down on the 'naughties' it's hard to tell. I'm not back to clinic until January. As I've said before, I'm not expecting miracles in regard to platelet counts (just a cure would be nice), but more an improvement that doesn't necessarily show in blood counts, if that makes sense?
I think it's good that we, who have commenced with circumin give updates from time to time too.
Mary x
I agree with you Mary, I'm going to carry in taking it for the moment in the same dose. If I continue to lose weight I will reduce the dose. I've read lots on the Internet and of course not all of it will be true but one site I was reading said it helps to make the platelets less sticky. Another said not to use with clopidogrel or Lansoprazole, both of which I take! I think it thins the blood so probably not good to take if I was about to have an operation. I really feel we have to do what feels right for us and at the moment I don't have any detrimental effects so will carry on for a while. I'm not expecting miracles either and as my daughter said if it lowered platelets we would all be taking it instead of Hydroxy. I have RA particularly in my wrist and that has felt a little better of late but it doesn't take much to set it off again. Pushing the pram with my granddaughter in can really aggravate it.
Yes, it's good to have everyone's input occasionally.
Best wishes
Judy x
It seems as though we have similar expectations.
You have my sympathy with the RA. My husband was diagnosed with this around 26 years ago. It sure has taken its toll over time.
Take Care
Mary x
I have been taking 400mg of Turmeric twice per day for over 2 years. I also take 1000mg Vit C, Vit B Complex plys B12, Magnesium + Zinc and Vitamin D.
I also drink ginger tea (and other herbal teas) to help. The curcumin in Turmeric can be "boosted" by ginger, chilli, black pepper or garlic.
My main advice would be to stay well hydrated as well.
Clinically, I am solely on Clopidigrel once per day and have been for 9 years.
I have ET JAK2+ and was diagnosed 9 1/2 years ago.
When I started taking Turmeric my platelets ranged from the mid 600s up to 800s. It took over a year to notice a difference to my platelets, they started to decrease very slowly and gradually.
2 1/2 years on my platelets are the high end of normal - whether I have just found the right combination for me or it is sheer fluke I don't know.
My Haem has told me to just keep doing what I am doing x
Karen c
Great to hear from you and extremely helpful, all you have written, especially with regard to the other vitamins you are taking - also encouraging your haematologist is happy for you to carry on. Really grateful to have your input and so hope you will go on sending in more info - you sound a very wise lady! Sure you're right re keeping well hydrated....I am a bit of a 'water-holic' and had drunk hot water (instead of teas and coffees), for about 12 years before being diagnosed with ET jak 2+ in 2014.....and still continue. Very best wishes, Tinkerbell
I have been researching complimentary therapies & vitamins etc for over 20 years - just as a hobby (sad but true lol) and decided to put what I had learned to the test - I think every individual has their own ideal combination of natural therapies, vitamins and minerals, its just finding the right one.
I look forward to reading how you get on with your Turmeric.
I do have a tip though, try not to take it on an empty stomach as it can be pretty harsh
Karen x
Really helpful re not taking on empty stomach...thank you for that. Really impressed with your research all these many years....what a vital work to have undertaken....will go on keeping up-to-date re turmeric on the Forum. Do wonder, too, if actual turmeric does vary, as one combined with black pepper does seem more effective. Best regards and thank you. Tinkerbell
People need to be aware of pepper (piperine) formula's when taking other medications. It stops the elimination of toxins and these can build up in your body. Interesting article below and an easy read.This also explains the benefits of different curcumin formulations. It appears the meriva (phospholipid - fats) formula is good for fighting inflammation and also detoxes the liver.
1stopwellbeing.com/suppleme...
Wow many thanks for that information. I'm on hydroxicarbomide and clopidogrel. I've just ordered supply of turmeric and pepper capsules. I won't take them now until I've spoken to my haematologist.
Maybe I should be worried but I'm not. I'm going to continue taking it in the short term at least.
MRy
Me too! Tinkerbell
Me three. X
Haha, yeah I've been taking it for 3 odd years but just recently been taken off HU for a months holiday because of debilitating muscle pain/fatigue, it made me wonder whether it could be a build up of toxins. I'll be switching back to meriva after my "holiday".
Hi Fee, do let us know how you get on....best regards, Tinkerbell.
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