Lowering platelets : Hi had anyone tried lowering... - MPN Voice

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Lowering platelets

faith949 profile image
19 Replies

Hi had anyone tried lowering platelets naturally? Like with certain foods or diets?

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faith949 profile image
faith949
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19 Replies
POOGY profile image
POOGY

Hi Faith 949. My husband was diagnosed 4 years ago with ET. Quite by accident. His plates count was 660 but was 69 yrs old so consultant put him on Hydroxy, the lowest dose. During the first 2 years he went to a naturopath who put him on various herbs etc. We’re not in love with drugs so wanted to help ourselves. After 18 months we decided to stop the chemo pills as his count was down in the 300s. When we saw consultant after blood tests, 4 months later, he thought my husband was still on the pills as the blood tests were so good. We did tell him we’d stop the hydroxy & he asked why??

After another 2 years, the platelets have crept up again but still only about 500, so now he’s back on hydroxy.

We do feel that if you can afford to see someone about naturally helping yourself, then it surely helps. It may not cure the condition but we’d much rather try natural things than drugs. Bear in mind my husband is ageing so that is another factor for doctors to consider. Unfortunately doctors never studied anything natural , only drugs , & we’ve been given all these herbs on earth for our healing . Hope you can find some help.

Bears23 profile image
Bears23 in reply to POOGY

I too do not like taking medication, and took along time coming to grips with this . However, I have seen numerous specialist within three MPN field and one thing they have in common is eventually I will me on meds, the cancer attacks the bone marrow/platelets. Depending on age, symptoms, etc. each doctor will make a decision based on each individuals case. We are all different and different symptoms (TIA’s, strokes, clots, etc) hit us all and different times, sometimes the platelet counts are low when these occur, too). Most experts consider it more high risk when you get to 60-65 years of age an weigh out the good from the bad and start you on the meds. I would suggest you find a MPN specialist, or two and follow their advice. There are some great experts in this field and have gathered so much information over the past several years. Be safe and best of luck to you and your husband.

in reply to Bears23

I absolutely agree Bears23, aside from levels in platelets; hematocrit; hemoglobin.... people forget about the blood viscosity in MPN’s. I wouldn’t chance trying to naturally treat these diseases... It can’t be easy to monitor properly and the risks would be too high. I’m not a fan of meds either but we’re fighting a serious disease so I would have to trust the specialists.

faith949 profile image
faith949 in reply to POOGY

I’m currently on hydroxyurea still hasn’t helped and I don’t want to up my dose again. I wish my doctor could figure out what’s going on . My platelets are in the 1400’s.

in reply to faith949

What is you dosage now?

Pte82 profile image
Pte82

Faith, while on Anagrelide, which was not lowering the platelets, my wife used 50 mg red palm oil tocotrienol twice a day. As the platelets lowered the oncologist reduced the frequency using the Anagrelide until the oncologist discontinued it.

socrates_8 profile image
socrates_8

Hey Faith... :-)

I am Post ET / MF w/ CALR+ Type2, and my Platelets are always a battle to keep under control. So far I have tried a great many things, and to date the only success I have had was using a 'Plant-based' diet, consistent exercise and some success by drinking 500ml of raw beetroot juice 90 mins before exercise. Success was limited, but there was a level of success...

All of us will likely find a mixed bag of results trying a range of possibilities, however, while our MPNs may be similar, each of us brings many new variables to each of our unique MPN equations, so I guess so too our results...

Best wishes, stay safe & well... :-)

Steve

faith949 profile image
faith949 in reply to socrates_8

I’ve tried the raw beet juice 🥤 did it help with symptoms or lowering platelets?

socrates_8 profile image
socrates_8 in reply to faith949

Hey again Faith... :-)

In my case I found that it helped by improving my energy and endurance reserves on those longer distance cycling rides, and in so doing also aided some of my muscle cramping problems. Don't believe it really aided any of my other more common symptoms, however, I did seem to enjoy a slight lowering of my Platelets at that time...

As my Platelets are always a tad on the higher side700-900s, anything that helps to reduce them is most welcome...

But that only seemed to be the case when I kept drinking the Beetroot on a more regular basis...

Hunter offers some greater logic below that I tend to agree with. A program of better diets, some 'Intermittent Fasting, regular exercise coupled w/ some supplements, all provide me w/ reduced 'Inflammation' and as Hunter mentions that is the real key to maintaining a better Quality of Life. Our health needs all the help we can muster when we have an MPN, in my view ...

Anyways, best wishes... 8-)

Steve

hunter5582 profile image
hunter5582

There is little evidence for "natural" remedies to significantly lower platelet levels. You will hear some anecdotal evidence from people who have tried various things that may have worked for some people, but not all.

Very broadly speaking, anything that reduces inflammation will help to control thrombocytosis. Diet, supplements, lifestyle choices all can help the condition, but will not cure it. Socrates_8 made some suggestions of things that may help. I would add a supplement of Curcumin to that list. There is no question that Curcumin helps with inflammation. there is some evidence that curcumin can also have some positive impact on the JAK-STAT pathway, possibly inducing apoptosis.

I would suggest thinking about the natural remedies in a different way. When we have a MPN it becomes far more important to take good overall care of our bodies. MPNs do more than just drive up hematopoiesis. MPNs cause systemic inflammation that drives many of the secondary conditions we experience. We are also more prone to other neoplasms/secondary cancers. Some of us can experience issues like hypertension and other issues as well. Paying attention to nutrition, healthy diet, exercise, weight control, nd the other basics of good health is not optional for us. It is critical. There are complimentary health interventions that can really help as well. Some supplements do work. Other interventions can really support a higher quality of life (e.g. massage therapy, Qi Gong, yoga, acupuncture). A holistic approach to managing MPNs really is better.

Hope that helps.

faith949 profile image
faith949 in reply to hunter5582

Thank you I agree ☝️ was just wanting to get some ideas besides googling it. Does curcumin help with only inflammation or can it possibly lower some peoples platelets? Also heard garlic helps too 🤷🏻‍♀️

hunter5582 profile image
hunter5582 in reply to faith949

A few people have reported curcumin helping with platelet levels, but it is not the norm. There is excellent support for curcumin helping with inflammation. I started on it to treat osteoarthritis. It works better than any NSAID I ever took. It is a critical part of controlling the inflammation symptoms I experience. If you are interested in curcumin, be aware that it is not readily bioavailable. Some formulations work better than others. There are several approaches to helping curcumin pass into your bloodstream so it is bioavailable. Including piperine (black pepper extract) is one approach. I use a formulation called CurcuWin, which is in various brand name formulations. The brand I use is Spring Valley turmeric Curcumin Complex with CurcuWin. You can actually find it at Walmart. (look for the red 46x Greater Absorption label).

Hope that helps.

Pte82 profile image
Pte82 in reply to hunter5582

hunter, CurcuWin is a remarkable product. I found an article by pureprescriptions that of course shows theirs as best but I'm including it because it offered insights about curcumin I have not encountered before but have not researched further yet.

nutraingredients-usa.com/Ar...

pureprescriptions.com/scien...

hunter5582 profile image
hunter5582 in reply to Pte82

It is what my Integrative Medicine doc recommends. She was very surprised when i showed her I was already using it and was able to get it at Walmart. It is much less expensive there than the fancier brands and actually has more CurcuWin in it. I can say from my own experience that it works great for inflammation. It mas made a huge difference in dealing with osteoarthritis. It works much better then prescription strength ibuprofen or meloxicam. It is also quite a bit safer for long-term use.

For those of us who choose to use it, just be aware that it does have some blood thinning effects. My MPN Specialist if OK with it, but warned me to watch for bruising.

Island-Lady profile image
Island-Lady

I do not like to take medication and I was diagnosed with ET nine years ago and I am 69 years old. I have tried many natural things and continue to take them. However, even though I have remained asymptomatic, when my platelets reached one million last year I started a very low-dose of hydroxyurea. I take 500 mg once every three days. I think that getting as much exercise as you are able to and eating a healthy diet and trying time restricted eating are things that are helpful. In my research on natural treatments the one thing that I came upon that was the most impressive was a study on taking salvia. For some reason I am unable to attach the link to the article but if you Google salvia and ET you will find an article on it. The article is at metabolic healing.com. They list several other herbs as well. I personally have been taking Salvia and ligustcum at the suggestion of my naturopath. It is hard to say whether or not this is the reason that I feel healthy and energized but I do feel good about taking it. You might also research pycnogenol.

I wish you the very best.

Pte82 profile image
Pte82 in reply to Island-Lady

Octopedes, have you tried red palm tocotrienol?

Island-Lady profile image
Island-Lady

I have not tried it. I will look into it.

Pte82 profile image
Pte82 in reply to Island-Lady

Octopedes, here is an overview article on tocotrienol and one on it's history. Platelet lowering is found under toxicity and dosage. As I brought to faith's attention, my wife used red palm tocotrienol while on Anagrelide to lower her platelets from 900+K with her oncologist adjusting the meds dosage as the count returned to the normal range. Delta tocotrienol from annatto has a significant number of benefits that is worth your time to check out. Since tocotrienol and tocopherol compete for absorption they should be taken separately by several hours.

nutritionandmetabolism.biom...

wholefoodsmagazine.com/colu...

Island-Lady profile image
Island-Lady

Thank you so much!

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