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So far, so good

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12 years 4 months ago #33294 by RHofm50129
So far, so good was created by RHofm50129
Last week's blood draw showed a drop from 305,000 to 233,000 with the caveat that it might be higher due to clotting. So this week it was 305,000 again. Probably never did drop. I am alternating 20/10 this week and next week.

All of you who told me to ask about slowing down the tapering til I got back from Disney, Doc #1 today said to go on just 10's next wednesday if I were above 250,000 which I hope I am. and then just stay put on ten's until I get back from Disney.

So far, so good. I hope I don't drop next week!
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12 years 4 months ago #33296 by Vdeutsch85
Replied by Vdeutsch85 on topic So far, so good
Roberta,

That is good news!
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12 years 4 months ago #33301 by RHofm50129
Replied by RHofm50129 on topic So far, so good
I am starting to think that I will make it to Disney. Now yesterday morning, not so much. Friday I got a mammogram and they did not read it til Tuesday morning due to the holiday. Called me to come in. So I was freaking out because the reason was listed as "mass on right breast." Did I really need more anxiety? So it turned out to be a cyst that will have to be removed, but better than the worst we all expect when we are called back!
  • 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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12 years 4 months ago #33302 by Sandi
Replied by Sandi on topic So far, so good
All is well and good then! Seems like your doing well with the taper. Again, this is one really good response that I don't see that often.
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12 years 4 months ago #33303 by Vdeutsch85
Replied by Vdeutsch85 on topic So far, so good
Go have fun with your family in Disney! You need a vacation! :) You will be fine! You will be in a big city with doctors and hospitals if heaven for bid were to happen. Now, if you were going camping in the woods I may be a little concerned. Go try to enjoy yourself!
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12 years 4 months ago #33320 by RHofm50129
Replied by RHofm50129 on topic So far, so good
Actually, we'll be two days driving to Disney, 3 days at Disney World, 4 days on the Disney Dream, and 3 days coming back. There will be four days I won't have access to doctors unless I want to go into a hospital at Nassau (no). But I figure if I have not dropped at 10mg for month, I should be ok for those days. They will give me extra predisone to take for emergencies which I hope do not happen.

The nurse called today from Doc #2. She said in an amazed tone, "Do you know your platelets are at 306,000??" I don't think I ever dropped after the one drop from 342,000 to 304,000. I think the clumping just hid that fact. So I've been around 305,000 for the past 3 weeks. This week at alternting 10 and 20.
  • 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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12 years 4 months ago #33323 by Sandi
Replied by Sandi on topic So far, so good
Maybe you will be one of the lucky ones with acute ITP. I can't guarantee it, but not dropping with the taper can be a good sign of that. Hopefully you get a nice remission at least!
  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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12 years 4 months ago #33328 by dru
Replied by dru on topic So far, so good
Roberta,

What great news! :) Now you can start looking forward to your trip!
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12 years 4 months ago #33329 by Vdeutsch85
Replied by Vdeutsch85 on topic So far, so good
Roberta,

That sounds like a great trip! Have fun! You will be fine!
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12 years 4 months ago #33388 by RHofm50129
Replied by RHofm50129 on topic So far, so good
I will feel more confident if I don't drop when I am taking 10 every day. Doc #1 suggested staying at 10 till I get home from Florida. Must be worried I will drop if I start alternating five and ten. I am well aware I could tank at any moment, but I am feeling a little more relaxed about things. Fool's paradise, maybe. I assure you if they drop Wed I won't be feeling relaxed.

Even if someone has acute ITP, I would imagine it is always floating around in her head that it could pop up again any minute. What is that about Intermittent reinforcement being stronger than constant reinforcement?
  • 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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12 years 4 months ago #33393 by Sandi
Replied by Sandi on topic So far, so good
I'm glad you are feeling more relaxed. Good for you! I hope it goes well tomorrow.

I've had chronic ITP and honestly don't worry about it coming back. If it happens it happens and I'll deal with it like I've done before. No point worrying about something that may never happen. Daily life gives me enough to worry about on its own. :)
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