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TOPIC: my journey, crazy Emily

my journey, crazy Emily 4 years 4 months ago #49601

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My rational brain says to let them drop to the 20,000s which I do not think will take very long, my emotional brain says, if 25 mg might be the right dose, start that now and they should fall in line so why let them drop and hope they rebound! I am committed to no promacta until my monday blood test.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 4 months ago #49603

  • Sandi
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Okay! Do you need a sponsor?

My rational brain says 75k to 100k is fair to both you and the goal. I wish Dr. Provan had been specific about that.

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my journey, crazy Emily 4 years 4 months ago #49606

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No one would ever want to be my sponsor! I would drive them back to drinking! I do like your plan better than mine however.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 4 months ago #49608

  • Sandi
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I will be your sponsor. Tomorrow you raise your right hand and take the pledge.

Do what you are comfortable with, but try not to jump the gun. You can do this!

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my journey, crazy Emily 4 years 4 months ago #49636

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Your generousity knows no bounds! I talked to the doctor. He said he knew the number was high. His plan was to try and not have my platelets drop really fast like usually happens. He wanted me to stay with the 37.5 for several weeks so we can find some point of stability. Once we see what that looks like, if it is still too high, then drop by another 12.5 mg and do it all over again. Makes sense to me. Any thoughts on that plan
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 4 months ago #49639

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I personally would go with what Dr Drew Provan said- stop taking Promacta until the numbers drop between 30,000 and 50,000 and then start again at 25mg.

I know that isn't exactly what he said but I think its what he meant. And THANKS for sharing his opinion- hes an amazing doctor and an ITP expert- I love hearing his views. I was surprised that he wanted you to stay 50,000 and under. My hemo likes 30,000 to 70,000 But when I dropped to 10K he didn't change the dose, nor did he adjust when I went to 83K. Mostly I've been in the 40,000s which I feel is a good place for me. And again, glad to hear Dr Provan agrees!

Good luck with whatever you do!

ps. you mentioned that you nearly started crying when you saw that your numbers had spiked so high on 37.5mg- Do you think that was your emotional brain saying it does not like those high numbers?? ;)

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my journey, crazy Emily 4 years 4 months ago #49641

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Emily, I'd go with Dr. Provan too. Your doctor's ideas do not seem to be working out for you. Dr. Provan is an expert. I think you like your doctor's suggestion because it doesn't involve free-falling (but it does possibly keep counts too high for too long). I assume you will monitor counts twice a week? That should work out fine.

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my journey, crazy Emily 4 years 4 months ago #49649

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Here's another vote for going with Dr Provan's recommendation. Emily, you KNOW you can survive low counts. The numbers in and of themselves are NOTHING to be afraid of. Dr Provan feels this is best for long term stabilization (i.e., getting on with your life) and that's what I'd go for, too, after hearing his opinion.

In the absence of a recommendation from Dr. Provan, my inclination would've been to drop to 12.5 and stick with that for several weeks, no matter what, to see what happens.

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my journey, crazy Emily 4 years 4 months ago #49651

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Sandi wrote: My rational brain says 75k to 100k is fair to both you and the goal.

I like this option the best. Stop the Promacta, and when your counts drop below 100k start taking 25 mg Promacta. Your counts are almost certain to continue to drop for at least one count, maybe two counts, after you restart the Promacta; so I think you should leave yourself a little room not to overshoot on the downside.

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my journey, crazy Emily 4 years 4 months ago #49655

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I'd go with Dr Provan's recommendation too. When I was using Nplate he said we should aim at a count of 30 to 50. I was far more scared of high counts than I was low counts. At least with a low count you can take something and get the count up quickly whereas a high count is more uncontrolled. You can't force it lower whatever you do so you have far less control.

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my journey, crazy Emily 4 years 4 months ago #49660

  • Sandi
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I count five for Dr. Provan.

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my journey, crazy Emily 4 years 4 months ago #49682

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Ok, my stubborn nature has given way to common sense. Was tested today after 7 days at 37.5 and am up to 600,000. I will stop all medications and get tested 2x a week until they drop closer to 100,000 and restart at 25mg. Thanks for supporting me even when I seem to dismiss the wisdom.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 4 months ago #49684

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That's not a good count, Emily. You know that. Did you take any this morning?

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my journey, crazy Emily 4 years 4 months ago #49685

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I realize that is not a good count. I had been on the 37.5 for 7 days and thought my count would go down by today. I take it at 3am, so yes, I already took some today. I will put it all away until I am closer to 100,000. For some reason my doctor doesn't think I am in danger until I hit 1 million, but that does not seem sane to me. Will power is not a problem.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 4 months ago #49689

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Your doctor is probably unaware of the thrombic complications that can go along with ITP. People without ITP or known clot risks can usually go to a million without a problem. The warnings that go along with using the TPO's exist for a reason and I don't know why some doctors ignore that.

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my journey, crazy Emily 4 years 4 months ago #49759

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Count was 514000 today after stopping the promacta completely. I will not take any over the weekend and will see what Monday brings. Thanks for the support.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 4 months ago #49763

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Emily, I think it would be more accurate to say that your count has dropped to 514,000 after dropping the Promacta dose from 50 mg to 37.5 mg 9 days ago. There is a long time delay between when you make a change and when your counts begin to be affected by that change. In the clinical trials they reported a 7 day delay between when treatment was begun and when platelets began to rise, and 2 weeks before platelets reached their maximum. That is why it is so easy to overshoot in either direction.

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my journey, crazy Emily 4 years 4 months ago #49772

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That is also why it terrifies me to have taken no medication for many days. I am scared that once the body realizes that there is nothing in the system, the numbers will crash and take another 7-10 days to start to recover.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 4 months ago #49777

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Emily - if you are getting counts twice a week, chances are you'll catch it before they get too low. If not, you know that you can get them back up pretty quickly.

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my journey, crazy Emily 4 years 4 months ago #49781

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Emily, are you really terrified?
If so, it would not hurt to use the same strategy, but with 12.5 mg Promacta instead of none. Your platelets will still drop, but you are guaranteed a "soft landing". You could still switch to 25 mg when platelets reach the 75-100k range, and then stay at 25 mg for several weeks until they stabilize.

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my journey, crazy Emily 4 years 4 months ago #49791

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I'd go with what Dr Provan said, he's the expert.
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my journey, crazy Emily 4 years 4 months ago #49804

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I wish things were more straightforward but they are not. Apparently, ask three doctors and get three opinions. I adore Dr Provan and my hematologist. Today, however i talkied to one of the pdsa medical advisors who 'discovered' the TPO treatments. He strongly advised me against stopping promacta. He said he prefers not to change dosage when counts get too high but rather have the patient take the drug every other day for a few weeks and see what happens and maybe every third day and watch for a few weeks. He strongly suggested i start taking promacta again at least every other day at either 37.5 or 25 mg. he did not see much difference in those doses. So, ask three doctors and get three opinions. The only thing i feel sure about is that there is no right answer! Thanks for all the input and support on my behalf.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 4 months ago #49806

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Well, good luck with whatever you decide! I hope it all works out.

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my journey, crazy Emily 4 years 4 months ago #49831

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I did not take any promacta for four days this week. I think taking 25 every other day and seeing what happens is my current plan. My dad died of a heart attack at the age of 57. I am 51 and hope to make it longer in this life.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 4 months ago #49832

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It seems to me you have found a rational middle ground.
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my journey, crazy Emily 4 years 4 months ago #49836

  • Sandi
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You'll make it, Emily. My Dad died at 49. I've already passed him up. I've had more problems than he ever did.

Both of my husband's brothers died a few years ago, both at the age of 50, one year apart. My husband thought he was going to die at 50 too. He's almost four years past that.

It never entered my mind that I would die from low counts. I had treatments that worked. Low counts didn't scare me because I knew I could get them back up. You know that you can too.

It's too bad that there is no true protocol for your situation. This has completely gotten out of control, well, it was not controlled well from the start. I cannot understand why this drug is not started at the lowest dose for a few weeks and then raised as necessary. That seems more logical to me. The goal is to achieve safe counts, not shoot the counts through the roof. Sometimes I can't believe the situations I see here. I am NOT an expert, but it's not all that hard to see what you want the end result to be. Slow and steady wins the race.

I'm glad you decided on the 25 mg's. I think 37.5 might have been too much based on your responses. Hopefully your counts will be way down by Monday. I'll be ready for the drum roll.

A similar thing happened to my daughter after she was diagnosed with Graves. Her TSH was very low, about .06. Normal is .3 to 3.0. Her Endo started her on thyroid meds that would raise the TSH. The dose was too high and within a week, her TSH was 40. That should never happen. She became extremely hypothyroid and it took weeks for that level to drop to normal. I was so angry that we quit that doctor.

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my journey, crazy Emily 4 years 3 months ago #49840

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something to be aware of-- High counts from Promacta increases your risk for heart attacks as well as stroke.

I believe at least 2 people on the forum have had strokes from TPOs. One was a young healthy woman 26 yrs whose count was at 200,000. Dr mistakenly gave her more drug, counts went over 500,000 and she had a stroke.

The manufacturer and Dr Provan recommend counts at 50,000 because it is safe. I read in a scientific study (can't find it now) that 80% of clotting events (deep vein, lung, stroke) on TPOs happen when counts are over 100,000. Higher the counts, higher the risk.

This is the warning from the drug manufacturer Promacta website-

High platelet counts and higher risk for blood clots

Your risk of getting a blood clot is increased if your platelet count is too high during treatment with PROMACTA.. You may have severe problems or die from some forms of blood clots, such as clots that travel to the lungs or that cause heart attacks or strokes. Your healthcare provider will check your blood platelet counts, and change your dose or stop PROMACTA if your platelet counts get too high. Tell your healthcare provider right away if you have signs and symptoms of a blood clot in the leg, such as swelling, pain, or tenderness in your leg.

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my journey, crazy Emily 4 years 3 months ago #49845

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I totally get the risk of clots and stroke! Each time I wake up, I think, good made it through another night! It all scares me. I will let you know what monday results are.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 3 months ago #49879

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Count today was 250,000. Sadly, I have an infected spider bite that is incredibly painful. The doctor prescribed Keflex (sp?) as it is infected. Anyone know if I need to be concerned about that antibiotic from a platelet perspective?
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 3 months ago #49881

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Emily:

Much better! Hopefully you can get those counts down some more and stabilized from this point. When is the next count? Are you still sticking to the every other day dose?

Sorry about the spider bite. I was bitten by a brown recluse once, it dissolved the skin down to the muscle. Nasty. As far as the antibiotic, everyone reacts differently. Keflex was always one that I could take during ITP flares though and never bothered my counts. Honestly, I wouldn't worry about it at all since you are using treatment. I'm sure that Promacta will override any problems that Keflex could possibly cause.

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