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TOPIC: Prophylaxis

Prophylaxis 1 year 7 months ago #59957

  • CindyL
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Good luck with the surgery, D.
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Prophylaxis 1 year 7 months ago #59960

  • mrsb04
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This is a very brave step you are taking D. I hope it works for you.
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Prophylaxis 1 year 7 months ago #59974

  • delta809
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@Hal - To clarify, Liver enzymes spike was about 2 years ago. It's been normal ever since. I brought it up because it was the one side effect I experienced with Promacta.

IVIG lasted about a month.

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Prophylaxis 1 year 7 months ago #59975

  • delta809
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@D - All the best to you on the surgery.
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Prophylaxis 1 year 7 months ago #59990

  • Hal9000
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Thanks for the response info delta. Trying to establish correlations from user recounts. The immuno-suppressant data is pretty thin.

More than two weeks with IVIG is extraordinary. 25mg of Promacta is too. You're doing very well. And you figured out gluten helped a bunch. Anything special that lead to cutting it out of your diet? Or, just seemed like something to try?

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Prophylaxis 1 year 7 months ago #60177

  • delta809
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I was intrigued after reading the book "The Autoimmune Solution" by Amy Myers. I avoid not just gluten, but also dairy, eggs, and sugar. Dairy is by far the biggest culprit for me as reflected by results of IgG4 test. I think gluten was third place.
From this ITP journey, I just learned more about myself overall and what makes me feel better. In general, I have adopted a more healthier lifestyle. Avoiding junk food, grease, and eating a diet largely consisting of vegetables especially green leafy vegetables. Going outside and getting exercise daily. Minimizing stress. Learning how to relax. Focusing on family, friends and pets. Being thankful for the blessings I have.

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Prophylaxis 1 year 7 months ago #60179

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Sounds like you're basically doing the Paleo diet. We've all been brought up believing that dairy is good for us and sugar is harmless, but they are not conducive to good health. Sugar is horrible and feeds cancer cells. Diet is key to optimal health and well-being.

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Prophylaxis 1 year 7 months ago #60181

  • Hal9000
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Ok thanks. I guess this is the first I've heard of a 'IgG4' test. On search, the name "Allergix® IgG4 Food Antibodies 90 - Serum" is returned. Neither Quest labs or LabCorp seem to offer an equivalent test. So I guess insurance does not cover it. Here it is offered for $318.
www.gdx.net/product/allergix-igg4-food-antibodies-90-food-sensitivity-test-serum

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Prophylaxis 1 year 6 months ago #60565

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Sugar doesn't feed cancer cells. That's a myth as the Mayo Clinic tells..

"Fact: Sugar doesn't make cancer grow faster. All cells, including cancer cells, depend on blood sugar (glucose) for energy. But giving more sugar to cancer cells doesn't speed their growth. Likewise, depriving cancer cells of sugar doesn't slow their growth."

www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-causes/art-20044714?pg=2

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Prophylaxis 1 year 6 months ago #60567

  • Sandi
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Based on my research, I disagree. There is a big difference between natural sugar and refined sugar. Sugar also contributes to the growth of yeast.

www.cancercenter.com/discussions/blog/natural-vs-refined-sugars-whats-the-difference/

www.sciencedaily.com/releases/2009/08/090817184539.htm

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Prophylaxis 3 months 3 weeks ago #65273

  • delta809
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Hope everyone is enjoying the holiday season.

Checking in. Still on Promacta 25 mg and counts have been in 50k-65k range.
Still trying to eat healthy, exercise. Overall, have been feeling good.

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Prophylaxis 3 months 3 weeks ago #65280

  • Sandi
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That's great news! I'm glad you have been able to manage your counts so well!
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Prophylaxis 3 months 3 weeks ago #65301

  • Hal9000
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Oh, what a coincidence delta.
I was recently looking through old posts and was trying to figure out what you respond to. Question. Have you ever tried to see if your counts would hold to 40 or above when lowering the dose or discontinuing Promacta? Could be nothing. Just thought I'd ask.

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Prophylaxis 3 months 3 weeks ago #65322

  • delta809
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I’ve tried skipping doses to every other day. Counts were reduced to half as expected.
I would attest to not play that game.

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Prophylaxis 3 months 3 weeks ago #65323

  • mrsb04
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I'm not a fan of alternate day dosing/skipping a tablet. I know Eltrombopag has a long half life but I also know my counts swing about more on an alternating regime as opposed to a constant daily dose, hence my current experiment of taking 37.5 mg a day rather than 25/50.
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