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TOPIC: my journey, crazy Emily

my journey, crazy Emily 4 years 3 months ago #50501

  • Ann
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Have you had the indium scan? A liver or mixed result there would make a contraindication to splenectomy.

If calcium or magnesium, including dairy, is taken within 4 hours of Promacta, either before or after, the Promacta binds to it and will not be used. No harm will be done but the drug won't work either.

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my journey, crazy Emily 4 years 3 months ago #50502

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Mrs. B,

Just a reminder of a fairly large study I previously posted on another thread. The study showed that it appears that Nplate carries less risk of thrombosis than does Promacta, with a ROR of 1.46, which I think means you are 46% more likely to suffer thrombosis with Promacta than with Nplate.

It is not definitive, but it is one thing to keep in mind.

www.bloodjournal.org/content/124/21/2170.abstract December 6, 2014; Blood: 124 (21)
Signal for a Different Risk of Thrombosis Between Eltrombopag and Romiplostim
Conclusions: This study suggests a signal for an increased risk of thrombosis with eltrombopag compared to romiplostim, that must be confirmed by population-based pharmacoepidemiological studies.
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my journey, crazy Emily 4 years 3 months ago #50507

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Promacta worked for me for 2years then seemed to become ineffective. I am however responding to Romiplostin now after going down to 10 on max dose Promacta. The no calcium / mag rules are important to follow . I agree you should have an indium scan. Mine showed as much destruction in liver as spleen. If you are the same it would help in the argument for Promacta rather than splenectomy. Fortunately here in Scotland Promacta is on offer if steroids and ivig are not effective and splenectomy is contra indicated.

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my journey, crazy Emily 4 years 3 months ago #50516

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Rob Thanks for the link. An interesting read.

Ann & Margaret I've had an indium scan which confirmed splenic destruction.

I do not want my spleen removed. It is perfectly healthy and doing its job properly.

There is no cast iron guarantee splenectomy will work.

There are too many risks associated with splenectomy for my liking.

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my journey, crazy Emily 4 years 3 months ago #50522

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Although my scan showed equal liver and splenic destruction I think my consultant would still have opted for Promacta for me as he said that removing spleens is becoming rare nowadays and he was not minded to try that, though the scottish medicines Consortium still states that it should be a second line treatment for already splenectomised patients who are not responding to splenectomy , steroids or ivig and it should only be available as a first line to those where surgery is not indicated. I know the English NICE guidelines are even tighter but I think you should hold out for Promacta as I agree that splenectomy brings its own dangers.

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my journey, crazy Emily 4 years 3 months ago #50524

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Margaret, the English guidelines are exactly the same as the Scottish ones as they both follow the marketing authorisation which is written by the European Medicines Agency. So it's then up to the individual paying authority whether they allow its use outside the guidelines or not.

Mrsb shame about the indium result. If your doctor is on your side, he/she might appeal to their good sense.

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my journey, crazy Emily 4 years 3 months ago #50526

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Ann

Shame indeed . I need to get my platelets up and stable to have surgery so fingers crossed my consultant will let me have TPOs but after reading the link Rob sent think I'll ask for Romiplostim

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my journey, crazy Emily 4 years 3 months ago #50533

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Platelets at 240,000. Dose lowered to 12.5 mg every other day and 25mg the other days. I like the ability to manipulate the dosage as needed!
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 3 months ago #50540

  • Sandi
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Changing the dose can work great if you don't change it too often to chase the counts. This seems like a good way to go though.

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my journey, crazy Emily 4 years 3 months ago #50695

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106,000 today. I know that is a fine number but it almost a 2/3 drop from last week. Maybe going to 12.5 on alternating days was not the right move. I keep thinking that one of these days I will end up with two weeks with somewhat consistent numbers, but no luck so far.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 3 months ago #50698

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I know that feeling well, 36, 9,116,37,20,49 have been my last 6 . Oh for consistent count.

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my journey, crazy Emily 4 years 3 months ago #50699

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It totally stinks! I thought the medication would help decrease the roller coaster. I guess no such luck so far.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 3 months ago #50700

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Emily,

You already know that 25 mg per day is too much. Now you are worried that alternating 25 - 12.5 - 25 may be too little, and that your counts might drop too low? You cannot be off by much at this point, in either direction, and you might have it exactly right. You won't know if you don't leave it alone for a while.

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my journey, crazy Emily 4 years 3 months ago #50702

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Emily, considering my target count on the trial is 50 (over here in my part of the UK we don't bother with the zeros) yours is brilliant. In fact if my count should ever go above 250 the dose has to be dropped and anything above 150 count means I have to have counts done every 72 hours. So actually I agree with Rob leave dose as it is and see what happens.

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my journey, crazy Emily 4 years 3 months ago #50718

  • DJM
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Emily


Our day is coming, this dosage roller coaster is mind numbing at best. I have you in my thoughts and prayers. let's hope you level out soon :)

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my journey, crazy Emily 4 years 3 months ago #50724

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I was thinking that maybe what I need is 25 two days in a row and then 12.5...it is a never ending mind game for me. I agree that I can't know what will happen if I don't leave it alone and certainly if I can get by with less drug that would be great. I have this sore on the roof of my mouth that just won't heal which suggests to me that the platelets have dropped, but who the heck knows. I'm also just feeling 'down' which I attribute to lower platelets, but again, who the heck knows. I know that I don't want to be back on Prednisone and so I don't want to have to be rescued because they are too low. Do you get the picture of my hamster head!?
Cheers.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 3 months ago #50725

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Hello! Your doctor should be doing the dosing here. How long have you done the 12.5/25 alternating dose?

You're doing just fine!

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my journey, crazy Emily 4 years 2 months ago #50729

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The dosing was done by the doctor. It started last monday.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 2 months ago #50735

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Good. Em, I think you should leave it for a while. I know it's testing the waters, but you sort of have to go with it and maintain before you see what it will do. You already know that a higher dose of Promacta will get counts up fast so IF you should drop, it would be very short-lived.

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my journey, crazy Emily 4 years 2 months ago #50790

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Woo Hoo 92,000!! So glad I listened to you all and the doctor.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 2 months ago #50792

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Brilliant xx
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my journey, crazy Emily 4 years 2 months ago #50795

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So happy for you Emily.
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my journey, crazy Emily 4 years 2 months ago #50796

  • Sandi
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That's great, Emily!

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my journey, crazy Emily 4 years 2 months ago #50797

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Huge relief and such joy to have consistency even though it is only two readings.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 2 months ago #50898

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110,000. I'm still on the 25/12.5 routine. I see the doctor next Monday to see if I can maybe miss a day. It would be really nice to be able to sleep through the night! Thanks for the support through the last 8 months of this fun. Went to Boston for the weekend to see family and friends. I think they thought I might have grown an extra head or something, so it was good to see everyone and let them see that I look totally like me.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 2 months ago #50899

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Still climbing well done x

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my journey, crazy Emily 4 years 2 months ago #50900

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Sounds good, Emily! Finally! :)
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my journey, crazy Emily 4 years 2 months ago #50925

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Hi Emily,

I am very pleased that you have found a dosage that is holding your counts steady at a safe level. I don't see any problem with trying to get your counts slightly lower by making very gradual changes. Dropping a 12.5 mg dose once a week would certainly be a small change, and small is good!
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my journey, crazy Emily 4 years 2 months ago #50943

  • DJM
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Hey Emily,

Just checking in to see how you are doing? I'm at 25mg count is 398,000 just finished the taper off of prednisone again so the count is coming down some...thinking I'm going to go down to 12.5 on the Promacta...maybe do the alternating days like you have done. I would love to come off it all and just see if my body can hold a decent count. Never sure what to do...

I'm glad to see you have leveled out some! I'm praying you are still doing great!:)

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my journey, crazy Emily 4 years 2 months ago #50945

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DJM and all,
Things are good (never thought I would be able to say that!). Count today was 204,000. He reduced me to 25mg Wed and Sun and 12.5 all other days. We will watch it for the next few weeks and I also hope to taper off completely, but if not, happy to take Promacta for the rest of my life if it keeps my ITP at bay!
Phew....wish they just did the Promacta from the beginning and avoided all those steriods.

DJM,
Glad to hear your numbers are going down along with the Prednisone. Keep me posted.
Emly
Diagnosed Jan 2015 at age 50 with 13,000.
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