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Nutrition and Platelets 10 months 2 weeks ago #73096

  • tonymarinello
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Hello All .  . . I am a ITP patient for 13 years. And I was recently (January) diagnosed with AML (Acute Myeloid Leukemia). I am on Vidaza and Venclexta treatment for the last three months and my bloodwork has gone down drastically. I get transfusions 2 times a week for platelets and once a month for hemoglobin. All of doctors and "experts" say you really cannot raise platelets (or any blood counts by eating differently)  by eating differently. Is this true. And , if so, what can I do to raise my platelets. They are constantly in the teens and 20's.. . .sometimes single digits.  My white blood count is .7 (That's point 7 not the whole number seven) and my hemoglobin is 8.6.
Anthony AML

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Nutrition and Platelets 10 months 2 weeks ago #73099

  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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I haven't found anything I ingest makes any difference in my platelet counts.  
Wishing you well in dealing with the recent diagnosis.  
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Nutrition and Platelets 10 months 2 weeks ago #73100

  • porqupine
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i havent found anything to raise my count either (23) good luck 

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Nutrition and Platelets 10 months 2 weeks ago #73101

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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tonymarinello
Sorry to hear about the diagnosis of AML.
There is no definitive proof of food raising platelet counts.
Have your medics considered TPORAs to try raising your platelet count, and iron infusion for your anaemia? 

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Nutrition and Platelets 9 months 2 weeks ago #73174

  • ImPatient
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Hi Tony,
Sorry about your diagnosis.
My last hematologist said that folate acid can help platelet counts a bit. I haven't seen a noteable change.
When I went from being vegan for 17 years to eating tuna and salmon I went from staying around 100000 with 25mg Revolade to not needing any ITP medication. Could be a coincidence that it happened at the same time. Or because of b12 and omega 3 acid... 
There was some leaf extract that was talked a lot about a while ago, I forgot what, but I had it and it didn't seem to do anything. I can't imagine anything natural helping raise platelets a lot.

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Nutrition and Platelets 9 months 2 weeks ago #73175

  • Margaret
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Was it papaya leaf extract? I read about this somewhere and bought some, but I couldn't decide when I should try it. It might just complicate things while my haematologist is trying out medications. Currently on a diminishing dose of prednisolone and a hefty dose of mycophenolate. I'm thinking I'll try the papaya leaf when I come off the steroid. I'll certainly post if it does anything

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Nutrition and Platelets 8 months 4 weeks ago #73194

  • ImPatient
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Margaret yes Papaya. Curious to read about your experience. I can't say for sure whether it worked for me or not, because I was taking it while on Prednisone and my platelets dropped so much I had to take Dexa + Nplate, later Revolade. So, it's possible my platelets would've dropped more quickly without Papaya, or it's possible it did nothing... for sure it didn't do enough.

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Nutrition and Platelets 5 months 2 weeks ago #73331

  • Sydney
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Hello All, 
I’m new to this forum but have been perusing the PDSA website since my ITP diagnosis in September of 2020. This is my first post. 
When I learned I had ITP, my platelets were 30. My hematologist said if I get below 20, he would want me to start treatment, namely Rituxan infusion. I read up on that and the side effects greatly concern me as I already have other autoimmune diseases. I switched my diet to mostly vegetarian, eating a lot of sprouted pumpkin seeds, walnuts, peanuts, and kale. Aside from the benefit of losing weight, my platelets rose into the 50s. Then, in my research into foods that raise platelets, I discovered pomegranate juice. I drank 8 ounces daily for about 8 months and my platelets rose to 75. Very encouraging, and my hematologist said he doesn’t know how the juice works, but to keep drinking it because it obviously raised my platelets. Unfortunately, I developed high blood pressure (not from the pomegranate juice) and was put on Amlodipine. Through my own research reading scholarly articles and abstracts (which I can’t remember, sorry), I learned that pomegranates adversely affect most blood pressure meds (and antibiotics) the same way grapefruit juice/products do, so I had to stop drinking the juice. My hematologist never once mentioned this interaction. I stopped the juice and my platelets gradually fell down to 23 over the course if a year. Again, I adjusted my diet to drastically reduce my sodium intake to the point I no longer need to be on blood pressure medication. So, in August of 2023, I started back on the juice (I drink one 8.4 oz. bottle of POMONA 100% pomegranate juice a day on empty stomach) and my platelets are going up again (to 27 as of two weeks ago). If they continue to rise, I can confirm the pomegranate juice is highly effective. If my numbers go down again, my doctor will insist on putting me on Promacta. I took to heart the diet changes suggested by the PDSA website as well as from other well being sites related to ITP, and they’ve all made a positive impact not only in raising my platelets, but also slow yet significant weight loss the past 3 years. I’ll post here again with more news in a week or two with an update after a blood draw this Friday and another next week along with a consult with my hematologist.
From the beginning, he has really pushed for me to begin Rituxan and now Promacta if my platelets fall to 20. I’ve resisted. My doctor is relatively young and has never discussed dietary changes to increase my platelets. I feel if there’s a drug-free way to raise my platelets, that’s what I’m going to try. As patients, sometimes we must be the researchers; we must be our own advocate. At least for me, I’ve learned that my hematologist isn’t interested in diet changes. He has never even suggested it. He’s all about the expensive infusions and pills. Please understand I realize many people need infusions and drugs to control their ITP. I may be in that number one day, but until that day comes, if dietary changes can raise my platelets, I’ll continue my ITP journey with pomegranate juice, a low sodium vegetarian diet, and continued personal research. 

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Nutrition and Platelets 5 months 2 weeks ago #73334

  • MelA
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Just a quick reply, will read this thoroughly later.
Wanted to say that Rituxan is not usually the 1st line of treatment - I'd question that too.  

Is your hematologist letting you help make the decisions on treatments?
I remember when a tetanus booster dropped my count to the gutter and my hematologist took out her pad to write a prescription for prednisone, which I had taken before - told her I would not take it because my son was getting married in a few weeks and my bruises matched the color of my dress.   She then had her people call my insurance to see if they would cover Win-Rho, they did and I had one IV and haven't had to treat since.   
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Nutrition and Platelets 5 months 2 weeks ago #73335

  • Sydney
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Hello Mel,
Thank you for your reply. When I was first diagnosed, my hematologist put me through the usual tests including bone marrow biopsy (hip), spleen ultrasound (normal size), and 4 or 5 days of high dose of oral dexamethasone. The steroids did nothing for my platelets, so he told me if my platelets go under 30, he would discuss Rituxan treatment. I was very much against it because of the side effects and possible brain infection. My hematologist allowed me to make the decision to hold off on Promacta for two weeks to see if the pomegranate juice works. However, 2 weeks ago while going over my medication history with my new gynecologist, M.B., she asked me how long have I been taking Promacta? I said what? I’m not taking that! Not yet at least. She said it just came up on her computer screen that I was. Oh boy, was I not happy! M.B. remarked “Hmm…that’s a “cluster”!” So, you see, my hematologist is very gung-ho on me being on some kind of medication or treatment whereas I am NOT. He didn’t even wait the 2 weeks he said he’d give me to see if the pomegranate juice works! I’m not feeling very confident with him at this point, but all the other hematologists in my city are in the same health system so I’m doubtful a new doctor would be any different. They all push for these obscenely expensive drugs and treatments without discussing diet changes. My diet changes have worked so far.

i’m sorry your platelets went down after your tetanus shot. I learned that happens to most people after a vaccine of any kind, even in people who don’t have ITP. Good thing you put your foot down against Predisone! I’m very happy for you that Win Rho has worked for you! My doctor has never discussed Win Rho with me. Maybe my other autoimmune conditions exclude me from benefiting from it and that’s why he’s not mentioned it? I don’t know. Ugh. It’s all been so overwhelming…these past 3 years. 

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