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New article new diagnosed one month

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8 years 1 month ago #60654 by waterbug
Replied by waterbug on topic New article new diagnosed one month
They were 53 last friday
  • Cindy1
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  • For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
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8 years 1 month ago #60655 by Cindy1
Replied by Cindy1 on topic New article new diagnosed one month
53 on Promacta right? You know, they say that is perfect. Hopefully they hold after the prednisone is out of system. I am eating carrot juice, pomegrantin, kale, oj, eggs which are all supposed to help platelet count too. Who knows but thought I'd share.
Were you in a third world country recently like me?
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8 years 1 month ago #60659 by waterbug
Replied by waterbug on topic New article new diagnosed one month
No i am in greenville sc.
i am a vegitarin
Exercise regularly
And try to limit the wine.

I am positive i will be able to get better and be in remisson. :)
  • Cindy1
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  • For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
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8 years 1 month ago #60660 by Cindy1
Replied by Cindy1 on topic New article new diagnosed one month
You and me both are gonna kick this ITP! And I hope everyone else!!!
Have you gone camping, horse back riding, gotten bit by misquitos, lyme disease, might you have parisites from farm animals? Just things worth throwing out there.
I don't touch wine. Mayo said none, dr here says whatever. Im feeling better safe than sorry but I do miss it!
Be Well!
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8 years 1 month ago #60849 by waterbug
Replied by waterbug on topic New article new diagnosed one month
I have been on promacta for almost 4 weeks. Last count 2 1/2 weeks ago was 53.
For almost 4 weeks on being on this med, I have had horrible aches and back pains shoulders, swollen hands and feet, no sleep, tired during the day, I cannot roll over at night for all the back leg pain. I asked dr he said side effect from promata.
I don't feel like exercising and having greater aches and pains. My gut says I would be fine off this med. how do they wen you off of the stuff?
I painted a room in my house yesterday and although I had fan and window open. It hurts when I breath in. I read somewhere you should not use chemical stuff. Now I am worried. Room looks good anyway!
  • 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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8 years 1 month ago - 8 years 1 month ago #60852 by Sandi
Replied by Sandi on topic New article new diagnosed one month
They don't taper you off of Promacta as long as it is keeping your count up. If you stop the drug, counts will drop again. If the side effects don't start to lessen in the next month or so, you might ask to try another treatment. All of them have a risk of side effects though.
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8 years 1 month ago #60857 by waterbug
Replied by waterbug on topic New article new diagnosed one month
How would they know if you are in remission? Would they not take you off to see if your body can get right
  • 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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8 years 1 month ago #60861 by Sandi
Replied by Sandi on topic New article new diagnosed one month
They would know you might be in remission if your counts go into the normal range while you are on the same dose that you are now. Right now it's keeping you around 50k. If your counts would go to say 300k in the next few months, they should drop the dose and see if your counts stay up. If not, you're not in remission. If so, they should drop the dose again and see what happens. If your counts would continue to stay up with every taper and even after you are off of the drug, that would be remission.

If you can't maintain counts of 50k on your own, you're not in remission and you need Promacta. If you stop the drug, chances are counts will drop low again. If your counts are around 50k while taking Promacta, it's obvious that the drug is keeping them up or they would be higher.
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8 years 1 month ago #60865 by waterbug
Replied by waterbug on topic New article new diagnosed one month
Okay that is what I was thinking. I have only been on promacta less than 4 weeks , I go again on 10/3 I have no bleeding or bruises. However I personally do not think drs want you off the meds for fear if something happens you may sue them.
If I made the choice myself to take half doze what could happen without any bleeding or bruises?
  • 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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8 years 1 month ago #60869 by Sandi
Replied by Sandi on topic New article new diagnosed one month
Some people choose not to treat and just live with low counts. It all depends on how low your counts get and the symptoms that you have at those counts. The worst case scenario is internal bleeding.

Some doctors will fire patients for not treating when they advise treatment. You're right, they do not want to be liable if something happens.
  • Cindy1
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  • For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
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8 years 1 month ago #60875 by Cindy1
Replied by Cindy1 on topic New article new diagnosed one month
Hi Sandi,

Thanks for that excellent explanation about Promacta. It is so helpful! I just upped my dose to 75mg. Hopefully it will kick in soon! Cindy
  • Cindy1
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  • For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.
More
8 years 1 month ago #60876 by Cindy1
Replied by Cindy1 on topic New article new diagnosed one month
Hi Waterbug.
I totally understand where you are coming from. You and I are very similar! I waited and extra week at 50mg Promacta before I upped to 75 mg a few days ago. That being said I am glad that your numbers are holding in the 50,000's!
Best,
Cindy
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