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my journey, crazy Emily

Ann
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10 years 2 months ago #50501 by Ann

Replied by Ann on topic my journey, crazy Emily

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.

Rob16
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10 years 2 months ago #50502 by Rob16

Replied by Rob16 on topic my journey, crazy Emily

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.

The following user(s) said Thank You: mrsb04

Margaret k
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10 years 2 months ago #50507 by Margaret k

Replied by Margaret k on topic my journey, crazy Emily

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.

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.

10 years 2 months ago #50516 by mrsb04

Replied by mrsb04 on topic my journey, crazy Emily

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.

Margaret k
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10 years 2 months ago #50522 by Margaret k

Replied by Margaret k on topic my journey, crazy Emily

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.

Ann
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10 years 2 months ago #50524 by Ann

Replied by Ann on topic my journey, crazy Emily

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.

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.

10 years 2 months ago #50526 by mrsb04

Replied by mrsb04 on topic my journey, crazy Emily

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

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #50533 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

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!

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

10 years 2 months ago #50540 by Sandi

Replied by Sandi on topic my journey, crazy Emily

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.

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #50695 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

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.

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.

10 years 2 months ago #50698 by mrsb04

Replied by mrsb04 on topic my journey, crazy Emily

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

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #50699 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

It totally stinks! I thought the medication would help decrease the roller coaster. I guess no such luck so far.

Rob16
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10 years 2 months ago #50700 by Rob16

Replied by Rob16 on topic my journey, crazy Emily

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.

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.

10 years 2 months ago #50702 by mrsb04

Replied by mrsb04 on topic my journey, crazy Emily

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.

DJM
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I have had ITP for over 21 years. Had many treatments some put me into a remission. Had my spleen out in 2005 and had a stroke 3 months afterwards. Just fighting the fight searching for answers and hopes to live my life drug free.

10 years 2 months ago #50718 by DJM

Replied by DJM on topic my journey, crazy Emily

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

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #50724 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

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.

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

10 years 2 months ago #50725 by Sandi

Replied by Sandi on topic my journey, crazy Emily

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!

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 2 months ago #50729 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

The dosing was done by the doctor. It started last monday.

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

10 years 2 months ago #50735 by Sandi

Replied by Sandi on topic my journey, crazy Emily

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.

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 1 month ago #50790 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

Woo Hoo 92,000!! So glad I listened to you all and the doctor.

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.

10 years 1 month ago #50792 by mrsb04

Replied by mrsb04 on topic my journey, crazy Emily

Brilliant xx

The following user(s) said Thank You: EmilyK

mac
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10 years 1 month ago #50795 by mac

Replied by mac on topic my journey, crazy Emily

So happy for you Emily.

The following user(s) said Thank You: EmilyK

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

10 years 1 month ago #50796 by Sandi

Replied by Sandi on topic my journey, crazy Emily

That's great, Emily!

EmilyK
Topic Author
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 1 month ago #50797 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

Huge relief and such joy to have consistency even though it is only two readings.

EmilyK
Topic Author
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 1 month ago #50898 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

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.

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.

10 years 1 month ago #50899 by mrsb04

Replied by mrsb04 on topic my journey, crazy Emily

Still climbing well done x

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

10 years 1 month ago #50900 by Sandi

Replied by Sandi on topic my journey, crazy Emily

Sounds good, Emily! Finally!

The following user(s) said Thank You: EmilyK

Rob16
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10 years 1 month ago #50925 by Rob16

Replied by Rob16 on topic my journey, crazy Emily

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!

The following user(s) said Thank You: EmilyK

DJM
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I have had ITP for over 21 years. Had many treatments some put me into a remission. Had my spleen out in 2005 and had a stroke 3 months afterwards. Just fighting the fight searching for answers and hopes to live my life drug free.

10 years 1 month ago #50943 by DJM

Replied by DJM on topic my journey, crazy Emily

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!

EmilyK
Topic Author
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 1 month ago #50945 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

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

The following user(s) said Thank You: DJM

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