I was diagnosed with ET cal/R last February when I had a TIA episode, otherwise very healthy. Was wondering if any one has tried turmeric or other supplements or anti inflammatory diets with any success in reducing platelets. Currently on HU 500mg q day and ASA. Thank you all!
Any success with turmeric? Or anti inflammatory ... - MPN Voice
Any success with turmeric? Or anti inflammatory diet?
Hey Teresa...
Yes, I am currently utilising an Anti-Inflammatory diet, simply because anything that helps to reduce inflammation, (I theorise), must be helping me to manage my MPN condition.
My name is Steve, & am also Post ET/MF, w/ CALR Type2. There is little doubt in my mind, that what we put in our mouths and stomachs affects the way we operate... "You are what you eat..." etc...
Here is a really interesting TED TALK:
mpn-mate.com/forum/viewtopi...
Following that are a whole heap of Posts on Anti-inflammatory Diets:
mpn-mate.com/forum/viewtopi...
Please feel free to sign up to MATEs FORUM too...
Best wishes & hope this helps...
Steve
I completely agree Steve about our diets. I’ve been a nurse for many years and have seen many people change the course of a disease with diet alone. Thank you for the links, I’ll keep everyone updated on my progress
I agree completely with Steve. The AIP Paleo has changed my life in many ways! I can only recommend it. Mine is adjusted to me, because we are all different. I also fixed my leaky gut and take digestive enzymes, Zinc, magnesium Vit D (40,000 IU weekly) any less than that and I drop below 55. I’ve reduced my Hashimoto hormones T4 (now bioidentical hormone from pig) by half after 20 years in just 14 months.
Hi Teresa, I tried taking very good grade turmeric powder in various ways but couldn't consume enough because it's foul and grainy so gave up! So sorry I can't help you. I have ET calr which was diagnosed after eight months or more of tests following years of worsening health ,culminating in two separate incidences that couldn't be explained. What were yours and was it identified and diagnosed straight away?🤗
Hi Birdie
For 2 years I had unexplained silent migraines, extreme erythromalagia in both my feet, hot flashes off and on and no one could explain anything. Then this past February I had a TIA episode that lasted less than 10 min. I was admitted to the hospital and they ran every test imaginable finding nothing but elevated platelets. They referred me to a hemotologist who was very familiar with all my symptoms, so he did all the testing to confirm my diagnosis. I’ve been a nurse for many years and In excellent health otherwise so I fought the idea of going on HU. I’ve done so much research on antinflamatory diets and turmeric and I’m looking forward to see how my diet will affect my platelets.
Try Curcumin tablets... they are the constituent of Tumeric that is supposed to be the most beneficial ...
Steve
I have been on anti-inflammatory diet, it helps overall especially for our condition I believe. Also my Haem us happy with my diet.
I had to stop turmeric on the advise of my consultant. I came out in huge bruises but not sure if it was a coincidence or not.
I’m going to ask if I can restart it. Apparently it’s clinically proven to help the liver.
Curcumin thins the blood as well. A balance has to be found. As with all natural products, each person reacts differently (with chemicals too) and one must start low and adjust. I take 50mg aspiring a few times a week but also Ginkgo 3x 60mg daily to keep my blood thin. If I see bruising, I reduce 1 Ginkgo, if I feel my blood getting thicker I go up to daily 50mg aspirin. I will be starting curcumin in about a month.
Important! Curcumin and turmeric are antioxidants. Don’t take it close to your med. as I take Anagrelid, I do any anti oxidant at least 3 hours later as not to wipe it out.
I started on a more focused anti inflammatory diet -including cucumin- about 7 months ago, and my platelets have dropped in 2 subsequent blood tests, allowing a slight reduction in hydroxy. Next blood tests in amonth, so fingers crossed.
Fabulous bluetop.
I’ve been eating strictly antiinflammatory for almost 2 years. Excellent.
Please let us know how much you are taking, at which Time in comparison to your Hydroxyurea, how many times a day. Capsules! Powder? Which company? Am planning to start curcumin in October.
Cheers Anag
While Turmeric is a mild blood thinner, it does not affect platelet levels per se. What it does do is to reduce inflammation. I am JAK2+PV and have many inflammation related conditions, including osteoarthritis, plantar fasciitis, GERD, insomnia, eczema, and several other likely suspects. I have not taken or needed an NSAID for over three years for any of the joint issues since I got on a decent Turmeric/Curcumin blend. Turmeric does not readily enter the bloodstream so you do have to pick a supplement that is formulated to enhance bioavailability. If you find something the works and is readily available, stick with it. Supplements are poorly regulated so reliability can be an issue.
I use turmeric/curcumin with piperine (black pepper which is important for absorption). I buy it from Aava Labs via Amazon, and take the maximum dose. Since starting it around 2 years ago I have halved my hydroxy dose and my platelets are just within normal range. I have also found an amazing difference with the arthritis in my feet.
Karen
I'm use curcumin with piperine, every day in the morning, at night coated aspirin . I'm was on Pegasis 7 ,5 month only and I'm now on watch and wait ready 4 month, becouse my cbc is for 4 month ok. , but with PV never know what hapand tomorrow .
HI there, I take Thorne Meriva SF Curcumin to lower inflammation, but I haven't seen a drop in my platelets. I did find this research paper: Curcumin induces apoptosis in JAK2-mutated cells by the inhibition of JAK2/STAT and mTORC1 pathways.