I know there's been quite a lot of discussion on here recently regarding Curcumin and I'm considering taking it myself. I was just wondering if those taking it have Seen any of the benefits yet i.e. reduced blood counts and how best to take it?
I'm looking at 500mg capsules (is that a large enough dose?) from Holland and Barrett but reading up about the effectiveness of curcumin, for it to be effectively absorbed into the blood stream, it requires something like piperine (black pepper) to be taken in addition?
Thanks in advance for any advice.
Pete
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PT99
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I ordered my circumin from Amazon, it's curcumin with pipeline from Avva labs. I've only been on it for around two weeks, so early days. I'm not expecting it to decrease my platelet count as such - as that is within range due to being on Hydrea, although if it did I suppose it's proof of something. I'm hoping it's going to help my ET in a long term way that doesn't necessarily show up in blood counts - but then how do I judge that, as I don't consider myself that symptomatic apart from the odd bout of fatigue?
I'm also hoping it's going to help with the wear and tear joint pains that I encounter. We'll see, watch and wait for now.
Hi, I took the capsules plus also made a drink each morning from organic turmeric and black pepper. I followed this regime for 9 months. It made no difference whatsoever which is exactly what my consultant predicted! He said it cannot affect what happens in the bone marrow. I stopped for summer but will probably go back to it now just in the hope it's good for general health. Good luck with it, we're all different! Best wishes, Francesb
Hi Pete, I've been taking the same curcumin as Mary from Amazon. I had absolutely no expectations so when I had my last check up I had had no growth in my spleen and my bloods were all fine - that was a first for me for many months!!! I always craved an afternoon shut eye but for weeks now haven't needed one. I take 4 capsules a day and honestly feel I have more energy. I've changed nothing in my life other than the curcumin so I will be carrying on taking it. I'm MF 8 years with a big fat spleen but coping really well. We are all very different and what is good for one may be no good for another but it's worth a try you just never know. Good luck.
I've been taking capsules from Amazon for a couple of months. It does seriously to have helped slightly with my joint pain. I don't go back for my blood tests for another couple of weeks, my platelets had gone up last time from 375 to 490, but she said that could have been caused by my horrendous arthritis in my knees. So hoping they've come down a bit.
I'm hoping to have knee replacement surgery, which I've been putting off because of the ET. Also I have a phobia about general anaesthetic as well as being very wary about blood clots! 😳 But I really can't put up with the pain any longer, it is really limiting my life, I can't go anywhere as I can only walk a few yards, so if the platelets are down again I'll probably be able to get it done.
Hi Lizzie, I thank you for your comments on Curcumin. Please do not be afraid about having a knee replacement if it is needed and your doctor recommends it. I have had MF for 7.5 years and also had a knee replacement. Yes there will be a little pain and discomfort, but you will be pain free walking within a week and no crutches well within a month
Hi lizziep, I just wanted to let you know when you have ET, as I do as well, involve your hematologist in the planning of any surgery. Thursday the 28th of September I am having a small uterine polyp removed. There will be certain guidelines to follow as I was allowed to continue my dose of 2 baby aspirin till today, the 26th, and going to see him for a prescription of Lovenox, an anti-coagulant which is injected once a day for 7 days post procedure. I wouldn't hold off if it's giving you pain. My ob, hematologist, and internist communicate very well with each other, as they should, if any procedure that's needed. Good luck in getting your knees replaced. Be well! ♡
Thank you, I had a uterine polyp removed a couple of years ago, and an intestine polyp a few weeks ago, I didn't have to stop any medication. Fortunately they were both benign. However the knee surgery is, obviously, a bit more invasive, my haematologist has given the go ahead as long as my platelets are under control.
Glad to hear it's working for some of you, my only comment would be make sure you buy from a reputable company - ( Lambert's are very good) and be careful with dose as it can cause side effects if you gobble too much in your enthusiasm.....
If any of you haven't heard this already (think you can only get this in the UK), PLEASE listen to this. It is quite extraordinary and ground breaking and I have no idea why we aren't all talking about this!
Particularly from 17 mins onwards. Someone with MF is practically in remission. All other meds failed. There is significant research available. I have been on Curcumin (a gram a day!) and of course, I can't prove my counts are low because of it (as there isn't a clone of me not taking it!), but I am thinking of doubling it. (I have PV). I am under the supervision of a Medical Herbalist who is trained in watching out for contraindications which is why I have the confidence to do this. My haematologist 'knows about' Curcumin but they are not allowed to recommend it because the 'proof' isn't there. The drug companies are hardly going to fund the research are they?
Hi Boss 1, I've just listened to the BBC 4 program. There was a posting about this lady on this site a while ago which started our initial circumin posts. The interesting item I picked up in the interview was that the powder had been more effective than capsules when a study had been done. I take the capsules from Amazon but has now got me thinking that maybe the powder may be more effective. Am thinking now to get the powder to put in soups, stews or even make a drink with it and maybe use the capsules in a lesser dose than I'm taking now. I definitely feel I have more energy now than I did before taking circumin even though it's still early days. I started circumin mid Aug. I'm in the position that my rux is not doing a lot for me now it never shrank my spleen so I'm prepared to experiment and take some control - hopefully!!!!!!! The drug companies definitely wouldn't be interested in funding the research you're quite right.
I'm not expecting any miracles and therefore have no expectations but would like to try as part of healthy lifestyle. After all, nothing to lose really so may as well give it a try - if it helps with the fatigue and itching I'll be elated!!
Hi Pete, I have been taking this with either black pepper, garlic or chilli for over 3 years along with a mix of other minerals and vitamins - I can truthfully say that it has kept my platelets down after lowering them substantially in the first year. My platelets are now in normal range at present - I have ET JAK2+
I take Clopodigrel 75mg ×1 per day (Clopidigrel because I am allergic to Asprin)
I also drink Ginger Tea & Green Tea to help.
The only things I would say is do not expect immediate results, nautral treatments do need time to work with your body AND please check with your Haemotologist first and he/she will check it against your meds. Most are ok with it. Curcumin is a blood thinner and if you are already on thinners taking the 2 could cause internal bleeding depending on what your medications are
Sounds like it's working for you, which is great. I've got PV and I'm JAK2+, just on aspirin and allupurinol but will run it passed my consultant when I next see them. Pretty much set on taking them though.
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