Curcumin

[eire]

Hi everyone. I know someone posted about curcumin not sure if they are taking it. There was an article in the Daily Mail which I hope I can attach for you all to read. It may/may not help who knows but it was recognised in the British Medical Journal. I'm going to give it a try but need to find the best one. Nothing to lose and it certainly helped the lady in the article.

Pat

[mhos61]

Hi Eire,

I'd be cautious. This is the article that originally attracted my attention.....until some posters noted some contraindications.

I asked Maz could she get some clarification on this. She asked Claire Harrison who said although she supports 'curcumin' she would be cautious of its use in the MPN patient community. You can view the post under 'Curcumin.'

Karen has asked for further clarification, as have others regarding the wording of the response - but because the post is old I don't think it has been picked up.

Mary x

[eire in reply to mhos61]

Thanks for replying Mary. Funny enough I've just found your previous post and am reading all of the links!!! My meds are no longer working and with spleen getting bigger all of the time I kind of feel I really do have nothing to lose. It's a pure minefield that's for sure but I really don't want to just sit back and do nothing. Nothing indicates it would assist with spleen reduction but a huge success for that lady in London who has Myeloma maybe it would be no good for MF - who knows??. I'm going to see what my haem says on my next visit end of august. I also didn't fully understand the comments from Prof Harrison. I'll hold off buying any of the products for now!!!

Pat

[mhos61 in reply to eire]

Hi Pat,

I fully understand where you're coming from, and would be in a similar frame of mind in your circumstances.

I was 'already to go' bit disappointing really 😩

I think what you said about speaking with your haematologist is wise.

Keep us updated.

Mary x

[JediReject]

Hi Pat , , might be teaching gran to suck eggs but the search facility is pretty good if you need to find references to previous posts. . Be interesting to know in simple terms what if any risk there is taking curcumin with mpn or is it the potential drug interaction. . . I know Prof Harrison wasn't in favour and really that ought to be good enough reason not to take it. See how you get on when you see your Hem. .

Regards Chris

[eire in reply to JediReject]

I totally agree - once I saw the comment that the prof didn't approve it made me very wary!!!! I think we all hold Prof Harrison in high esteem whether we've met her or not due to this forum. My haem contacted her to see if she had any advice on my condition as we've hit a brick wall at the moment. She had nothing further to suggest and nothing suitable turned up at the Ash convention last October. I'll still ask my haem every time I see her I have something I've found on the internet to ask her so she'd be v surprised if I had nothing to suggest!!!!! If I could reduce the spleen size that would be so amazing. They can put a man in space but they can't reduce a spleen!!!!!!! Got to laugh. Hope you're feeling loads better now Chris and have the confidence to go away for short breaks the wedding was a huge success for you.

I'll let you know what my haem says end of Aug.

Pat

[JediReject in reply to eire]

Well all I can say is tis a good job wedding wasn't this weekend, as the GVHD isn't giving in without a fight either and feel it's had me in its grip last few days affecting my head and leaving me very tired and lethargic. Also dampens my appetite and I need to keep the calories going in. Most frustrating as we have lots of jobs to do and I want to help out. Got clinic Thursday so see what comes of that.

Occurs to me that sometimes might be hard to get an answer of some Docs as they don't believe in alternative therapies. One of my consultants didn't. Not that I'm suggesting that applies to P.H.

Take care Pat

[Nickthedevil in reply to JediReject]

Really sorry to hear you are not feeling well again Chris. Hope you pick up again soon. Karen x

[JediReject in reply to Nickthedevil]

Thanks Karen, , and for all the support you given me. Dunno if fighting something off , just out of sorts . It's a funny old game bit like having an MPN, , one day you're up flying high the next you've crash landed. Trouble is I usually land in a field of cow pats. 😉. . Sure I'll pick up in a day or two.

Chris x

[Nickthedevil in reply to JediReject]

Let's hope you come back up smelling of roses soon 🌹🌹x 😀

[Tinkerbell13 in reply to JediReject]

Ooooh, you do have a time, but always ready to be thinking of others. So hope you feel much more your 'old self', very soon. Thankful you were able to enjoy that very special family wedding. Interested what you say re 'alternative' - trying lots of extra Vit C and Turmeric, myself, so have vested interest. V best wishes to you and your very lovely wife. Tinkerbell13 and may that important appetite of yours return pronto....

[Nickthedevil]

After Dr Harrison's comments (even thoug i am not sure I completely understood it), I stopped taking Curcumin. It's only been a few days but I got up this morning to the pain in my feet from arthritis. Back to hobbling around for me! I am thinking I will speak to my haematologist first but would like to start taking it agin. Karen x

[eire in reply to Nickthedevil]

Sound as though it was doing you some good Karen. I would give your haem a call and explain how much better you felt taking the curcumin after all we are all so very different even if we have the same illness. Maybe it depends on the drugs you take you don't want to do anything that would make you deteriorate. Nothing worse than being in pain I'm just uncomfortable but still can feel v sorry for myself!!!!!!! Quick phone call and you would have a specialist response. Good luck.

Pat

[Nickthedevil]

Thanks Pat. I am going to call them later. I will let you know what they say.

[piggie50 in reply to Nickthedevil]

Hi Karen,

Have you seen the updated response from Prof Harrision on the other thread? Could I ask what brand and dose of Curcumin you take.

Many thanks

Judy

[Nickthedevil in reply to piggie50]

Hi Judy

Yes I have just seen it, thank you. I am really pleased. I am taking Curcumin with piperine by aava labs. I take two a day which is 1400mg.

Karen x

[piggie50 in reply to Nickthedevil]

Thanks Karen, I'm very tempted to give it a go, more to see if it helps my Rhumatoid Arthritis rather than the PV.

[Nickthedevil in reply to piggie50]

Good luck Judy, I really hope they help x

[JediReject]

Cheers Judy for pointing that out. . I copied it as follows::::

UPDATE REPLY FROM PROF HARRISON : Like many of the community I have been watching the story of Curcumin with interest. Of course it is not of proven benefit in patient with MPN. Personally I am not averse to our patients at Guy's trying this kind of remedy alongside conventional therapies and will be watching carefully to assess if there is further benefit.

[eire]

Can see us all taking it now the Prof has approved!! It would be amazing down the line if we all got a really good response we could then be in the British Medical Journal - away to go!!!!! With caution of course.

Pat

[mhos61 in reply to eire]

That sounds like the 'go ahead' then. Might try the brand Karen's using.

Mary

[eire]

I thought the same Mary saw them on Amazon. It's all so confusing when you read up about them I'm happy to go along with the brand Karen is using.

Pat

[Mazcd Partner MPNVoice]

Hi everyone, as you can see from the other post, I have updated the reply from Prof Harrison and deleted the first reply, which was confusing due to a typo. Sorry about that, Maz