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Prophylaxis 3 years 9 months ago #59957

  • CindyL
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Good luck with the surgery, D.
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Prophylaxis 3 years 9 months ago #59960

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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This is a very brave step you are taking D. I hope it works for you.
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Prophylaxis 3 years 9 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 3 years 9 months ago #59975

  • delta809
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@D - All the best to you on the surgery.
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Prophylaxis 3 years 9 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 3 years 9 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 3 years 9 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 3 years 9 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 3 years 8 months ago #60565

  • anon
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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 3 years 8 months ago #60567

  • 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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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 2 years 5 months 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 2 years 5 months 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 2 years 5 months 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 2 years 5 months 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 2 years 5 months ago #65323

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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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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Prophylaxis 1 year 5 months ago #68122

  • delta809
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Hope everyone is having a good holiday season.

Checking in. Still on Promacta 25 mg and counts have still been in 50k-65k range.
Something interesting, I got the flu and counts went up over 400k. Per my dr, stopped Promacta for a week. Counts steadily dropped back down as I recovered from flu and got back on 25mg.

I’ve heard other folks get vertigo while on Promacta. I only get it when I lean my head forward for a while. Seems it does something to fluids in ear possibly.
Wasn’t sure what was causing it until vertigo went away when I stopped Promacta temporarily for a week. It returned after I started taking it again.

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Prophylaxis 1 year 5 months ago #68123

  • JJ
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My count goes up with flu too. For other viruses and bacterial infections it goes down. Odd.

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Prophylaxis 1 year 5 months ago #68147

  • Hal9000
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JJ, would you believe me if I said those here that have counts going way up with the Flu are the same people that eventually report partial/complete remissions from TPO-RA (Promacta or Nplate) treatments only?

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Prophylaxis 1 year 5 months ago #68151

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Are we talking about real influenza that restricts one to bed for a few days or a heavy cold.

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Prophylaxis 1 year 5 months ago #68155

  • JJ
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I was talking about flu. I've had it twice since I've had ITP. Once we were actually tested for it at work during an epidemic. I've had colds several times and my count goes down then.

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Prophylaxis 1 year 5 months ago #68167

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Thanks JJ
I'd choose low platelets over flu any day. Only had it once prior to developing ITP and never want it again.

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Prophylaxis 1 month 3 weeks ago #70860

  • delta809
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Checking in. Hope all is well with you and your families.

Still on Promacta 25mg and platelets around 50k. Going into my seventh year on Promacta.

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Prophylaxis 1 month 3 weeks ago #70862

  • momto3boys
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delta809 wrote: Checking in. Hope all is well with you and your families.

Still on Promacta 25mg and platelets around 50k. Going into my seventh year on Promacta.

Congratulations! That's a perfect count for Promacta. I'm very glad that it's working so well for you.
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Prophylaxis 1 month 2 weeks ago #70962

  • delta809
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Speaking with doctor about switching from Promacta to Doptelet. Benefits include no dietary/food intake timing restrictions and no liver toxicity.

I noticed some threads mention that it is more potent. Can someone point me to an article or research that mentions how much more potent Doptelet is compared to Promacta?

Doctor is telling me it’s the same and I cannot find anything to reference based on my googling.

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Prophylaxis 1 month 2 weeks ago #70963

  • mrsb04
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Delta 809
Try these..looks like about 3x more potent than Eltrombopag.
www.sciencedirect.com/topics/medicine-and-dentistry/thrombopoietin-receptor (article on the right hand side of page)
www.ncbi.nlm.nih.gov/pmc/articles/PMC6733339/ well referenced so you may glean more info
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Prophylaxis 1 month 2 weeks ago #70964

  • MelA
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You might want to start a new thread for your post & questions delta - it will be seen by more who may respond, maybe.
Isn't 50k the goal for Promacta - if so why would you change? (and I know not a thing about either treatment)
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Prophylaxis 1 month 2 weeks ago #70977

  • delta809
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Thanks MelA and good point about a new thread.
I’ve been on Promacta for over 6 years now. Concerned about the long term impact on liver. Didn’t realize that Doptelet was much more potent so may hold off until a lower dose is available.

Thanks again!
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Prophylaxis 1 month 2 weeks ago #70978

  • delta809
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Thanks MrsB for the articles!

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Prophylaxis 1 month 1 week ago #70986

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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You're welcome Delta

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