I've been bad and it feels good. Curcumin.

[h2ogal]

My Dr. told me to stop taking curcumin because of interactions with hydroxy and being the semi-obedient patient I did stop for awhile. It's been 2 months since I started back again and I have had 5 really good days in a row. In the year that I have been taking hydroxy, I've maybe had 15 days in total that I felt OK. Got to go roll around on the floor with the dog now.

[Osteomyelio]

Well, I’m off hydroxy now. What type and how much curcumin makes you feel better. Thank you

[hunter5582 in reply to Osteomyelio]

Turmeric/curcumin blends do not pass readily into the bloodstream. Bioavailability is a big deal with this supplement. Finding a blend with increased bioavailability is really important. Some blends use black pepper to enhance availability. I found a blend that includes CurcuWIN (a proprietary bioavailable formula) . This is what the Integrative Medicine specialist I see recommends. I use the Spring Valley brand 550mg Turmeric/Curcumin capsules - 3 caps per day - 2 in the AM 1 in the PM. Cn get it at my local WalMart and it is affordable. Works great. Better than any NSAID I have ever taken.

[DJW1 in reply to hunter5582]

I am using Sisu Full Spectrum 40mg. The company claims it is a new one that absorbs well. It does say you have to consult a Dr if you are taking anti-platelet medication, or blood thinners.

[h2ogal in reply to Osteomyelio]

the one I am using has in one serving (3pills)

825 mg turmeric rhizome standardized to 95% curcuminoids

525 mg organic turmeric rhizome

9 mg Bioperine which is the black pepper fruit extract standardized to 95% piperine

[Yvette49]

Hope you had fun rolling around with your dog. I do my floor exercises when we puppy sit our Grandpuppy, mini dachshund, we have such a laugh 😁 I was taking Curcumin too for back pain, but like you had to stop as it interfered with my Hydroxycarbomide. Can I ask you what you are taking Curcumin for?

Thanks,

Yvette

[h2ogal in reply to Yvette49]

For a good time? Sorry. My naturopath suggested it along with ginseng (not Siberian) to lower my platelets before I started the hydroxyurea. Haematologist said not to take it. Gave all the information I gleaned from here and gave it to naturopath and she said, "Looks like Curcumin helps the hydroxy to work better and you may be able to take less of the hydroxy."

[Val_P]

I’m on hydroxy and curcumin too. I didn’t start taking the curcumin until I’d checked with my MPN specialist team at Guys Hospital, as the information states that it could have an effect on platelets. The team said I was fine to take it. I’ve been taking the curcumin for a couple of months now and it has definitely helped with my bone and joint pain. I don’t know if it’s had any effect on my platelets yet as my next appointment is early November. So watch this space

[Val_P]

You also need to read this article

mpn-mate.com/forum/viewtopi...

[Hidden]

That is very interesting. In what way has Curcumin interacted with hydroxy? And how much Curcumin did you take to achieve that ? What did your doctor think when you said you actually felt better on it?

[h2ogal in reply to Hidden]

Have not told my Dr. and I won't. I take the recommended daily dose on the bottle. Not sure how it has interacted with the hydroxy, but I feel better than I have in years.

[Wyebird]

It’s good to know you are on the up. May I ask what mpn you have. I’m curious as how many good days you’ve had. All my bloods are good at moment. So why don’t I feel good!

[h2ogal in reply to Wyebird]

ET, Jax2+. I take eight 500 mg hydroxyurea per week and have been taking it for 1 year. Today is the sixth day in a row of feeling good. I had not felt well since before 2015, was diagnosed in 2016 and finally gave in to taking the hydroxy in 2018.

Months ago I lowered my expectations as to what I "need" to do.

I go to the YMCA and move in the water for a hour, feed myself "good" food (mostly), take my medications, drink water until I pop (I aim for 2 liters per day) & meditate. My

meditation is just me sitting comfortably with my feet up listening to the waves or my dogs snoring, Pure heaven.

Don't give up hope for feeling better, I was totally surprised by this.

[Wyebird in reply to h2ogal]

I’m on 16 hydroxi and 10 anagrelide a week

[hunter5582]

Curcumin may potentiate aspirin, but not by much. Never heard of an interaction with HU. Many docs no little to nothing about supplements like curcumin so they prefer to only deal with the synthetic meds they know. There is no question that curcumin helps me with the inflammation and joint pain. HU does nothing for that.

I suspect you know better than this doc what you need. it is your body - your choice.

[Boss1 in reply to hunter5582]

researchgate.net/publicatio...

[DJW1]

With regard to curcumin. I was diagnosed with jac2 positive mf in the spring of 2018. At that time my hemoglobin was running in the 110-115 range. Over the summer and fall of last year, it began to drop quickly - about 5pts a week. I bottomed out (literally) at around 80 in late Sept/early October, so a year ago. At that time I started 2 things - eprex injections weekly (Erythropoietin, the drug the bike racers allegedly abused) and also I had 2 transfusions as well. As it turned out, the eprex did wonders for me - my hemoglobin counts slowly started going up, and were in the 120 range by mid winter. I started slowing the injection frequency down, and got down to 1 a month for several months. I now haven't had one for 2 months (almost) and my count is around 130. However, what I did do 3 months ago was to start taking curcumin (Sisu full spectrum 40mg) once a day in the morning. I started this because of the article mentioned on this site a few months ago - (onlinelibrary.wiley.com/doi... I have no idea for sure if it is the cause, but I think it is entirely possible that the curcumin is the reason I went from once a month to where I am now, and I feel like I am continuing to improve. It's not just my hemoglobin that is improving either - most of the measurables that get tested have improved as well. My platelet count is still in the low 400's, but by this point before it would have been somewhat higher. Red blood cell counts, range variation, etc have all improved. As I said, I don't know for sure if its the curcumin that is doing it, or if it is a result of the long term use of the eprex (the hematologists don't think so) but as long as I am seeming to do better and improve I am going to keep using it.