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TOPIC: my journey, crazy Emily

my journey, crazy Emily 4 years 5 months ago #48724

  • Sandi
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Emily - Promacta works for most but it can take time. You're on the right track. This is the reason why I now think skipping Rituxan and going to straight to TPO's is a good idea. I am seeing too many failed Rituxan attempts. Keep the faith...you'll get there yet!
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my journey, crazy Emily 4 years 5 months ago #48801

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Still on 10mg of Prednisone. In the meantime, I have had a tremor in my body for some time (of course only since I started ITP treament) that seems to be getting worse. Is this a typical side effect of Prednisone or of tapering off Prednisone? Also, my teeth are so sensitive that even a breeze across them is very uncomfortable and anything directly from the Fridge is unbearable. I started using Sensodyne toothpaste, but it does not appear to be having any positive effect and I prefer my Tom's. Again, is this a typical side effect of Prednisone or maybe the Rituxan, even though that was some time ago? Or do I now need to worry that I have contracted something else?
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #48803

  • Sandi
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Prednisone can cause tooth sensitivity. I'm going through that myself with steroids. I'm using Sensodyne too but as I recall, it can take a few weeks to work. I think they have a mouth wash also.

As far as tremors, where? My hands shook a lot while on Prednisone and I had a horrible eye twitch and twitches in my legs. It can cause things like that but how extreme is it? Leg cramps are also common due to potassium depletion. You can try some bananas, Gatorade and magnesium which are all known to help that IF it is caused by the steroids.

By the way, Emily. I know what you did. :) Thank you....that was a very sweet, generous gesture.

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my journey, crazy Emily 4 years 5 months ago #48804

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thank you and you deserve much more. the Tremors are in my hands, but my whole body feels like it is sort of vibrating. No leg or other cramps. I have a banana with almond butter for breakfast almost every day so I think my potassium is ok. I will hope the tremors will go away once I am off the Prednisone for some time. Thanks for the reassurance. Hugs.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #48808

  • mrsb04
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Hi Emily...the worst I have ever felt was whilst on prednisolone . I'm down to 5mg a day and have been so for a while now. I feel absolutely fine on this dose x

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my journey, crazy Emily 4 years 5 months ago #48814

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I am now on 7.5mg for the next week as we watch my numbers. Today I was up to 190,000. I know that isn't the goal on Promacta, but it is not like I can control the little buggers! They go up when they should stay lower and go lower when all I want is for a higher number. We will keep an eye on them so I don't get dangerously high and risk a clotting issue. Its never easy is it?!?
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #48816

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190,000 crikey I'd be well chuffed at that..my last count was 20,000 xx

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my journey, crazy Emily 4 years 5 months ago #48817

  • Sandi
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Wow, that sure worked fast! Are you on a low dose?

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my journey, crazy Emily 4 years 5 months ago #48827

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I am on 50 mg of promacta. Numbers have been so all over the place I am far from feeling like all is well.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #48828

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I agree. I was just wondering if the dose could be lowered if your counts keep going up.

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my journey, crazy Emily 4 years 5 months ago #48829

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Yes, I can decrease the promacta and I still am on prednisone. His taper schedule if all goes well is
7.5 for a week
Alternate 7.5 and 5 for a week
Alternate 5 and 2.5 for a week and then
Alternate 2.5 and 0.

Maybe in a month, if all goes well i can start to recover from the pred.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #48831

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That sounds like a good taper. By the end of it most of your side effects should have already gone, except maybe the tremor. Don't be surprised if that hangs around for a while, mine did.

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my journey, crazy Emily 4 years 5 months ago #48832

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Thanks for the insight!
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #48866

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Now I am up to almost 400,000 so they dropped my Promacta to 25mg starting tomorrow. The dosing directions on the Promacta website say to try that for 2 weeks and see what happens.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #48869

  • Sandi
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Wow, woman! From one extreme to the next!

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my journey, crazy Emily 4 years 5 months ago #48874

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Gosh! At least it's working, good for you.

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my journey, crazy Emily 4 years 5 months ago #48885

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I feel like my body is just out of control! I seem to be always at one extreme or the other! Those pesky little buggers just can't make up their minds about how many I might need at any one time. I am, however, thrilled to be getting a quick result from the Promacta, now it just needs to be regulated and remain sustained. Thanks for all the support.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #48890

  • Sandi
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You'll get there!
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my journey, crazy Emily 4 years 5 months ago #48953

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Down to 5mg and 7.5 on alternate days, reduced Promacta to 25mg and the little buggers can't stop producing. up to over 500,000 today! I would certainly say that I am responding to the drug. the doctor ordered the 12.5 mg dose for me. While I know higher isn't better, it sure is nice to have a positive response so quickly and so intensely.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #48959

  • Sandi
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Yikes. I'm glad you responded too but it's time to get those buggers down a bit. I hope the lower dose does it! That was really a quick response, Emily. I think it's the fastest I've seen yet.

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my journey, crazy Emily 4 years 5 months ago #48961

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I never do anything half way!!
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #48965

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:laugh:

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my journey, crazy Emily 4 years 5 months ago #49009

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still hovering around 500,000 at 12.5mg of Promacta, so I get to take a break for a few days and see how my platelets do! I am also down to 5mg of Prednisone and the tremor in my hands is almost totally gone. Maybe there is light in the ITP tunnel after all.
Diagnosed Jan 2015 at age 50 with 13,000.
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my journey, crazy Emily 4 years 5 months ago #49010

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Excellent news Emily xx

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my journey, crazy Emily 4 years 4 months ago #49128

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As seems to be my way, platelets are at 54,000 (from 333,000 4 days ago). 54,000 is a great number, it is, again, just the incredible drop from just a few days ago that causes some concern. of course, I have also continued by Pred taper. I am down to 5mg and 2.5mg on alternate days. I feel much better on the lower dose of pred and no side effects from the Promacta at all. Given the big dip in platelets, I will go from 12.5mg of promacta to 25mg and get tested again on Thursday. What a roller coaster. Just hoping that the Promacta will, eventually, get me some stability!!
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 4 months ago #49130

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Fingers crossed for you Emily

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my journey, crazy Emily 4 years 4 months ago #49131

  • Sandi
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While watching the video of last year's conference, one of the doctors said that a common mistake with the TPO's is to keep changing the dose every week. He said that many doctors 'chase' the counts and the patient cannot stabilize with different doses all the time. It makes sense. He said to try to stay on the lowest possible dose for a while and edge up slowly if need be. It can become risky if you have counts sky rocketing and crashing every week.

See what the 25 mg's does and go from there. At this point, Prednisone probably isn't doing much so don't base decisions on that.

I think you're on the right track though!

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my journey, crazy Emily 4 years 4 months ago #49136

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It is so hard to know what is really happening. I have been on the 12.5 for 10 days so I figure that must not be enough, hence I planned to increase to 25 and unless the platelets crash, stay on that for another 10 days and hope they start to stablize a bit. I just hope the initial spike in platelets was not just a short lived effect. The roller coaster continues.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 4 months ago #49144

  • Sandi
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No, the 54k is exactly where counts should be on that med. I know you don't like the drop, but the count was spot on. Increasing to 25 mg's will probably spike the count too high again and then you'll have to drop the dose and so on.....That sort of up and down will make you nuts and that is where the risks of bleeding and clots come in. You have to get the counts stable, that's the point and sticking with a certain dose for a while will help you to do that and get rid of that roller coaster.

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my journey, crazy Emily 4 years 4 months ago #49146

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Maybe you've found the perfect dose for you as Promacta is designed to keep counts at 50. It may not go down any more, if it were me I'd give it time.

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