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my journey, crazy Emily

  • 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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10 years 4 months ago #48724 by Sandi
Replied by Sandi on topic my journey, crazy Emily
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!
The following user(s) said Thank You: EmilyK
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 4 months ago #48801 by EmilyK
Replied by EmilyK on topic my journey, crazy Emily
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?
  • 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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10 years 4 months ago - 10 years 4 months ago #48803 by Sandi
Replied by Sandi on topic my journey, crazy Emily
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.
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 4 months ago #48804 by EmilyK
Replied by EmilyK on topic my journey, crazy Emily
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.
  • mrsb04
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  • ITP since 2014. Retired nurse. 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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10 years 4 months ago #48808 by mrsb04
Replied by mrsb04 on topic my journey, crazy Emily
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
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 4 months ago #48814 by EmilyK
Replied by EmilyK on topic my journey, crazy Emily
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?!?
  • mrsb04
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  • ITP since 2014. Retired nurse. 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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10 years 4 months ago #48816 by mrsb04
Replied by mrsb04 on topic my journey, crazy Emily
190,000 crikey I'd be well chuffed at that..my last count was 20,000 xx
  • 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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10 years 4 months ago #48817 by Sandi
Replied by Sandi on topic my journey, crazy Emily
Wow, that sure worked fast! Are you on a low dose?
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 4 months ago #48827 by EmilyK
Replied by EmilyK on topic my journey, crazy Emily
I am on 50 mg of promacta. Numbers have been so all over the place I am far from feeling like all is well.
  • 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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10 years 4 months ago #48828 by Sandi
Replied by Sandi on topic my journey, crazy Emily
I agree. I was just wondering if the dose could be lowered if your counts keep going up.
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 4 months ago #48829 by EmilyK
Replied by EmilyK on topic my journey, crazy Emily
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.
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10 years 4 months ago #48831 by Ann
Replied by Ann on topic my journey, crazy Emily
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.
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 4 months ago #48832 by EmilyK
Replied by EmilyK on topic my journey, crazy Emily
Thanks for the insight!
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 4 months ago #48866 by EmilyK
Replied by EmilyK on topic my journey, crazy Emily
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.
  • 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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10 years 4 months ago #48869 by Sandi
Replied by Sandi on topic my journey, crazy Emily
Wow, woman! From one extreme to the next!
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10 years 4 months ago #48874 by Ann
Replied by Ann on topic my journey, crazy Emily
Gosh! At least it's working, good for you.
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 4 months ago #48885 by EmilyK
Replied by EmilyK on topic my journey, crazy Emily
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.
  • 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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10 years 4 months ago #48890 by Sandi
Replied by Sandi on topic my journey, crazy Emily
You'll get there!
The following user(s) said Thank You: EmilyK
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 4 months ago #48953 by EmilyK
Replied by EmilyK on topic my journey, crazy Emily
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.
  • 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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10 years 4 months ago #48959 by Sandi
Replied by Sandi on topic my journey, crazy Emily
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.
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 4 months ago #48961 by EmilyK
Replied by EmilyK on topic my journey, crazy Emily
I never do anything half way!!
  • 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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10 years 4 months ago #48965 by Sandi
Replied by Sandi on topic my journey, crazy Emily
:laugh:
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 4 months ago #49009 by EmilyK
Replied by EmilyK on topic my journey, crazy Emily
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.
The following user(s) said Thank You: mrsb04
  • mrsb04
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  • ITP since 2014. Retired nurse. 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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10 years 4 months ago #49010 by mrsb04
Replied by mrsb04 on topic my journey, crazy Emily
Excellent news Emily xx
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 3 months ago #49128 by EmilyK
Replied by EmilyK on topic my journey, crazy Emily
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!!
  • mrsb04
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  • ITP since 2014. Retired nurse. 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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10 years 3 months ago #49130 by mrsb04
Replied by mrsb04 on topic my journey, crazy Emily
Fingers crossed for you Emily
  • 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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10 years 3 months ago #49131 by Sandi
Replied by Sandi on topic my journey, crazy Emily
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!
  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 3 months ago #49136 by EmilyK
Replied by EmilyK on topic my journey, crazy Emily
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.
  • 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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10 years 3 months ago #49144 by Sandi
Replied by Sandi on topic my journey, crazy Emily
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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10 years 3 months ago - 10 years 3 months ago #49146 by Ann
Replied by Ann on topic my journey, crazy Emily
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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