curcumin and ET Jak 2+

[milw532]

I have read many recent articles on curcumin (tumeric) saying that it has a positive effect on platelets and somewhat inhibits their proliferation. However, one article I read suggested that if the patient is on aspirin therapy, he/she should be cautious and consult a doctor. The combination of aspirin and tumeric might increase the chances of bruising and bleeding. I would like to know if any of us have tried curcumin and what the results have been. Has there been any decrease in platelet numbers and what side effects have you noticed?

[Hidden]

There was an interesting article on the BBC Health site a few days ago about alternative therapies and turmeric/curcumin was mentioned as one that might stop clotting.

bbc.co.uk/news/health-50409431

Although the article was reporting a conference on breast cancer the points made seemed to apply to all cancer treatments - basically it's the usual advice for us to speak to the specialist treating us before using any alternative therapies as they might interfere with drugs already being taken.

[Boss1]

My platelets have steadily dropped to near normal levels. 470 last app. I should be part of someone's research. I take a gram a day and although there are warnings with Aspirin, I see an experienced medical herbalist who knows all about contraindications...has medical training so that gave me confidence. Been on it 6 years

[Juliet46 in reply to Boss1]

Hello, I was wondering what brand of curcumin you take and where you get it? Is it from your medical herbalist ? - Thankyou

[Windy51 in reply to Boss1]

Hi are you on Hydrea and Asprin when taking Turmeric I want to try it l am getting good quality Australian Turmeric capsules I always have Turmeric in my food so I should be ok

[Hidden]

Curcumin works by inhibiting the ability of platelets to clump together and not by decreasing the number of platelets. As aspirin also restricts clotting it could add to the action of curcumin and cause bleeds.

[Anag in reply to Hidden]

I started a Turmeric/Curcumin mix in Feb. and for the first Time my thrombos have dropped. At the same time, I reduced my ginkgo and aspirin to make sure my blood is not too thin. If this trend continues to December, I’ll know that Ginkgo is working for me. There are studies that prove it. Same as there are studies that 200mg daily of CoQ10 work. But, this may not work for everyone. Some are sensitive to Turmeric and others may get the opposite effect.

[hunter5582]

I think the evidence for a positive benefit regarding platelet levels is largely anecdotal. There is some evidence of a positive benefit regarding apoptosis, but the evidence is limited. Having said that, I have been using a Turmeric-Curcumin blend for year now as an anti-inflammatory. One of the most bothersome aspects of having a JAK2+ PV I actually the systemic inflammation that accompanies the increase inflammatory cytokine load. Symptoms include: GERD, osteoarthritis, insomnia, eczema, and plantar fasciitis. While not a panacea, I have not needed to take a NSAID since I found a Turmeric supplement that works.

The blend I use (Spring Valley Turmeric-Curcumin 550mg) contains a proprietary formulation called CurcuWin. Since the active ingredient in turmeric (curcumin) is not readily bioavailable, there has to be a mechanism to make it available in order for it to be effective. Some supplements use piperine (black pepper extract) while others take a different approach. What matters is to find a reliable manufacturer that produces a quality supplement.

Hope that helps.

[Anag in reply to hunter5582]

Piperin is of course necessary, but turmeric/Curcumin should be taken with food or a bit of oil since it is fat soluble. If it’s being used to treat colon cancer, it should be taken on an empty stomach so that it works directly in the colon! 🙂

[hunter5582 in reply to Anag]

Good tips to bear in mind. I know the evidence for Curcumin is mixed, at least for some purposes, but for inflammation/osteoarthritis it has worked better than anything else I have ever taken The key is to find a blend that is bioavailable. Like with all supplements, there is junk on the market that is just useless. You are also right about being mindful of the impact supplements can have. If something is biologically active enough to help you, then it can also hurt you (and interact with other meds). Seems like all of the anti-inflammatory agents are to some degree blood thinning and potentiate aspirin (or other blood thinners). It is really important to find a doc who is familiar with the use of supplements and how they interact with medications. Many docs do not have this knowledge. That is why I see an Integrative Medicine doc to get that input into my care.

All the best to you.

[Anag in reply to hunter5582]

Exactly. I agree with all that you wrote. There is so much new research and no one do tor can keep up. For complicated illnesses, we need a team that cooperated and through Internet, we have The ability to be knowledgable, as long as we are checking our sources and practice we’ll thought our discernment. Cheers! Have a good weekend.

Anag

[hunter5582 in reply to Anag]

Definitely agree. Doctors are human beings, not gods. (Have known a few who thought they were - fired them! 😄) I am very lucky to have put together a really great team of docs. When we do this we just have to be very active in managing our own cases and reach out to the right resource with any issues we encounter. I am really glad to have added the Integrative Medicine doc to my team. She is quite knowledgeable about complimentary health approaches and the interface with traditional Western medicine.

You likewise have a great weekend!

[Anag in reply to hunter5582]

Hi, Hunter,

I always think, why do we have to become our own treatment managers? We are obviously, firstly educated, secondly, highly intuitive and curious and we probably have time, more than most to really research and learn. What about the others not in this situation? I used to be an opera singer and then I was in the middle of finishing my master in the Globalization of Education when I was diagnosed. I finished with almost perfect grades and was hoping to spend the last 12 years up to my pension, doing what I almost dreamed about, teaching. I had to drop all that and started a new career, “saving my health“.

[hunter5582 in reply to Anag]

Many people do struggle to receive optimal care precisely because they do not have the time, emotional energy, or ability to actively manage their own care. Some simply do not have the inclination. Some healthcare systems expect patients to be passive recipients of care. Some providers expect the same thing. Many people have been trained to just accept whatever is recommended without understanding what they are really deciding. I learned the hard way just how terrible the outcome of that approach can be. My motto is "Never Again!"

We have no choice. We must educate ourselves, ask questions, review options, and actively manage our own care. We can only do this if we actively assert ourselves in the care process. We also need to foster respectful, caring relationships with our providers. Trust is something that must be earned by the provider and is at the core a good doctor-patient relationship. Sadly, not all providers deserve this trust. Those providers should be dismissed from our cases. That is both our right and our responsibility. Deficient care can only continue when it it tolerated.

Like you, I am fortunate to have the time, energy and inclination to educate myself and assert myself in the care process. My own professional (Psychology) background gave me a foundation and training in how to do research. I see a real need for many people with MPNs to bring in a case manager to help them manage their own care. I wish this was more available to everyone who needs it. Thank goodness we have this forum where we can share experiences, knowledge, and support. It helps us all with managing our own cases.

All the best.

[Windy51 in reply to hunter5582]

Hi Hunter I have ET Jak2neg I’m buying good quality Turmeric capsules hoping they will help me feel better with pain I cook with Turmeric a lot so hoping it will be ok I am on Hydrea and Asprin

[hunter5582 in reply to Windy51]

The big deal with Turmeric capsules is that it needs to be a bioavailable formulation. There are several ways to accomplish this, but the curcumin needs to make it into your bloodstream. Turmeric as a spice is delicious! I love it. It will not pass into your bloodstream without help. Consuming an oil (e,g, olive oil) at the same time helps.

My own experience with Turmeric + Aspirin is that it is OK. Turmeric likely does potentiate the blood thinning aspect of aspirin, but not by much in my experience. It is actually fish oil that potentiates aspirin more. That is something to be careful about.

Hope your experience with Turmeric/Curcumin is as successful as mine has been. I actually started it to control arthritis pain. It worked better than: ibuprofen, meloxicam, and Lyrica. Have not needed nor taken an NSAID in 4 years.

[Windy51 in reply to hunter5582]

Thanks that’s good because I want it for Arthritis pain too how much do you take please I take Meloxicam when needed but I prefer to take something natural I have used Turmeric for a long time so olive oil at the same time will help that’s interesting thanks for your info

[hunter5582 in reply to Windy51]

Bear in mind that you cannot directly compare formulations as they are different, I use Spring Valley Brand Turmeric/Curcumin. The active ingredients are Turmeric Powder 50mg and CurcuWIN 500mg (bioavailable curcumin extract). I take this dose 2x/day.

I apply a few premises to meds/supplements. There must be evidence to support the use. If something can help you, then it can also hurt you. Med/supplements can and do interact. You have to be prudent is what you take. That is why I consult with the Integrative Med docs. Most docs do not have the required knowledge re. the interactions between supplements and medications.

FYI - on the advice of my Int-Med doc I also take SPM Active (an anti-inflammatory fish oil derivative) and L-Glutathione. The latter is actually based on some research by Dr. Angela Fleischman that demonstrated efficacy for N-Acetylcysteine. The Int-Med doc suggested using L-Glutathione instead since that is what NAC increases in the body. Theoretically takes out the middle step of metabolizing the NAC.

I can't say for sure about the two additions, but the Turmeric/Curcumin has made a huge difference in my quality of life.

All the best to you

[Windy51 in reply to hunter5582]

Thank you

[Anag]

Hi Milw,

I take Ginkgo instead of the normal 100mg baby aspirin. But I take 3x 50mg aspirin in the week. Just like Ginkgo, there are other natural supplements that may thin blood. In that case, you can do what I did, go slow and have your blöd checked for viscosity. As with all natural supplements, you must carefully see how your body reacts to them. Rule of thumb, start slowly on Turmeric.

By the way, I take up to 4g of Turmeric powder for a headache or toothache. While flossing my teeth, I sometimes do a hurt my gums test and I see how long the bleeding needs to stop. I then know how thin my blood is. It was fine with the Turmeric, but it may be different after 2 weeks of taking it. Another possibility is a blood test.

A natural doctor should be able to best help you in this matter. All the best. Anag

[Wyebird]

I’m afraid it happened to me. Enormous bruises. The heamotologist suggested I stopped.

[Pte82 in reply to Wyebird]

Wyebird, my wife used 15 ml of liposomal vitamin C three times a day for bruises, gum bleeds , itching and night sweats. It builds collagen and is a JAK2 inhibitor. Liposomal curcumin may offer a better transport system. Magnesium prevents platelets from sticking together and is a co-factor for enzymes needed in the body and necessary to activate B1 . Delta tocotrienol from annatto is a clot preventer, a JAK2-STAT3 inhibitor and more. My wife used red palm tocotrienol to lower her platelets while on Anagrelide.

[Wyebird in reply to Pte82]

Just research red palm oil definitely worth asking heamo about it . Once again thanks

[Wyebird]

Thank you very much. I take a high dose of vitamins for my eyes. I also take magnesium tablets and 90% coca chocolate ( dipped in coffee)

Desperate to raise my poor haemoglobin levels. So in all I have to consult with doctor before taking anything else. I’m going to google the red palm tocotrienol now

[Pte82 in reply to Wyebird]

Look into fat soluble thiamine such as benfotiamine that offer unique benefits to the eyes and how it compares with water soluble thiamine which needs magnesium to work. Be careful if you take AREDS , my wife had to stop. Check it out. Also investigate Chloroxygen for your blood. If you buy the product get the capsules not the drops, if you spill the liquid stains. Put krispin in your search engine followed by magnesium. She has good info on the subject. Also investigate boron as it increases magnesium absorption. Search on "nothing boring about boron." Yes, always consult your doctor before supplementing.

[Wyebird]

Lol thank you plenty of research for me to do.

I wish you and your wife good health

[Bigcheat]

My massage therapist noticed me bruising. It really was quite bad. I am on daily Aspirin 100mg, and have been taking both Curcumin (1000 mg) and N-Acetylcysteine (600 mg) on alternating days on the side. Obviously that is too much. Called the hospital because I am going to have BMB after two weeks. Actually stopped taking supplements already couple of days ago, but they said I could also lower aspirin to 50mg a day and stop altogether few days before BMB. By the way, what is recommendation in the UK - is Aspirin stopped before BMB and for how long?

Cheers,

Bigcheat

[Hidden in reply to Bigcheat]

When l had my BMB the haematologist said no need to stop taking aspirin. I love Indian /Persian food both use Turmeric and l was raised in a multi ethnic family so have eaten food regularly seasoned with turmeric. In the last six months l have tried various curcumin supplements with piperine and curcumin tea but to date no effects yet on platelets. Probably like most meds or foods individual biology plays a part

[Anag]

hi Milw,

I’ve been taking 1,000mg of Turmeric with 400mg of Curcumin daily since feb. my platelets have definitely gotten lower. I will have by first blood test since June, tomorrow. We’ll see if the trend is continuing. If this continues till December, I could safely say, that turmeric is doing something.

Yes, it thins the blood but not a lot.

I was taking 50mg of aspirin daily and 3x 60mg ginkgo (at +/- 750 thrombos). Since the turmeric I reduced to 50mg aspirin and just 2x ginkgo daily. My blood viscosity is very good.

My motto is add what’s really good for you and reduce that which Is not. At 50mg aspirin, I’m keeping the chemicals low. I also take 3x 0,5mg Anagrelide daily.

Hope to have helped.

Anag