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Promacta question

  • 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.
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10 years 6 months ago #50109 by DJM
Promacta question was created by DJM
Has anyone been on Promacta and their counts all of sudden sky rocketed? My counts were 1K then 10K back on fourth on prednisone taper and increased promacta from 25mg to 50 mg. Then my counts tanked at 2K and had to have IV steriods, a platelet transfusion due to bleeding..after that my count was 19K this is all within the past 4 weeks.. Now my count is 799,000. I've already had one stroke when my spleen was taken out in 2005 due to a huge increase in platelets/clotting. Down to 20 mg of prednisone and my doctor said to skip my dose of promacta today..labs again tomorrow to see what the heck is going on...just at this point freaking out... I'm good with a lower count I know what to expect from my body.. Started a baby aspirin per my doctor...hopefully tomorrows lab will show a calm in my body..URGH...Feeling extremely stressed and exhausted at this point..

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  • 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 6 months ago #50110 by Sandi
Replied by Sandi on topic Promacta question
Wow DJ, that's unreal. It's happened like that before, not very often. You have to wonder why that happens. I can see why the spike would occur a week after doubling the dose, but weeks later is odd.

I hope your counts drop soon. Keep us posted.

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10 years 6 months ago #50111 by Rob16
Replied by Rob16 on topic Promacta question
If I read correctly, you doubled your dose of Promacta seven or eight days ago, from 25 mg to 50 mg, and now your counts have skyrocketed to 800,000. That is a normal delay between increasing Promacta and seeing a substantial change in platelets.

I would suggest you read EmilyK's current thread starting here:
pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/28574-my-journey-crazy-emily.html?start=150#49549
There was a lot of good discussion regarding how best to adjust dosage after a spike in platelets.
Emily's platelets spiked after a Promacta increase to 50 mg. She came off Promacta briefly, then went to 25 mg every other day, until dropping below 50,000, and will now take 25 mg daily until her counts stabilize at that dose before making further changes.

I hope that lightning will strike twice for you, and you will enjoy another long Promacta remission... knock on wood!
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  • 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 6 months ago #50113 by Sandi
Replied by Sandi on topic Promacta question
I thought it was 3 to 4 weeks since the increase. Yes, one week would make sense. That 50 mg dose seems to be a whopper.

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  • 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.
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10 years 6 months ago - 10 years 6 months ago #50119 by DJM
Replied by DJM on topic Promacta question
I just increased to 50 mg. on 7/15 from 25mg. That's why I'm like what the Heck! I've only been taking promacta a few weeks. Crazy isn't it...

I took Promacta years ago through the Promacta Cares program..took 8 doses and went into a couple years of remission. This is the hardest I've been hit in my 21 years of having ITP...I've never had the bleeds like I have had this time.

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  • 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.
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10 years 6 months ago #50120 by DJM
Replied by DJM on topic Promacta question
Thanks Rob I'll read the link.

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  • 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 6 months ago #50123 by Sandi
Replied by Sandi on topic Promacta question
DJ:

That is the best Promacta remission I've ever heard of. Maybe it will happen again.
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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 6 months ago #50158 by EmilyK
Replied by EmilyK on topic Promacta question
DJ,
I will say that I wouldn't stop the Promacta if the counts jumped for me in the future. I would go to the every other day dose. I am concerned about sudden drops in the platelets if there is a full stop for more than a day or two, but you need to do what your doctor thinks is best and you think is best. That is an amazing remission! Hope it goes as well for you the second time around.
Emily

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  • 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.
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10 years 6 months ago #50163 by DJM
Replied by DJM on topic Promacta question
Got my lab done today my count is 953000. I didn't have a dose of promacta yesterday and none today. I don't know how long it takes to get out of your system..but I'm praying the count comes down now...I go tomorrow for a ultrasound for a maybe clot in my arm.. I swear it's one extreme to the other. Still on prednisone just tapered 10mg down.

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  • 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 6 months ago #50165 by Sandi
Replied by Sandi on topic Promacta question
I'm sorry, DJ. I hope you don't have a clot. Please let us know.

Twice now the 50 mg dose has skyrocketed counts. I'm going to have to keep an eye on that with others.
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  • 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 6 months ago #50217 by Sandi
Replied by Sandi on topic Promacta question
DJ? How are you doing?

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  • 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.
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10 years 6 months ago #50218 by DJM
Replied by DJM on topic Promacta question
Count today is 1,250,000 and I'm freaking out...prednisone is tapered to 10mg and a adult aspirin a day. This is day three without promacta and the count is still going up.

I would rather have a low count at least I know what to expect then this super mega count. Going back Monday for another CBC.

Thanks for checking on me. :)

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  • 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.
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10 years 6 months ago #50219 by DJM
Replied by DJM on topic Promacta question
The ultra sound came back no clot..just a deep tissue bleed that is healing. Thank god for that:)

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10 years 6 months ago #50221 by Rob16
Replied by Rob16 on topic Promacta question
Amen to that!
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  • 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 6 months ago #50222 by Sandi
Replied by Sandi on topic Promacta question
Wow. Count are bound to drop soon. Keep the faith. Good news on the blood clot, DJ. Hang in there.
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  • 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.
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10 years 6 months ago #50310 by DJM
Replied by DJM on topic Promacta question
Today's labs my counts are 1,399,000 still climbing..off all drugs now. Aspirin a day. I go back on Thursday for another lab. I'm feeling extremely uncomfortable with a count that high... :S

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  • 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 6 months ago #50315 by Sandi
Replied by Sandi on topic Promacta question
All I can say is wow again. Unbelievable. Maybe once counts settle down, you'll have a remission from this. You deserve it with all this stress! Thanks for the update. I was thinking about you today.

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  • 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.
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10 years 6 months ago #50336 by DJM
Replied by DJM on topic Promacta question
Thanks Sandi I really hope so. I would like to get back to my old self again. :) I go back Thursday for a count..hopefully they will taper down. I'm just so tired right now..not like myself at all.

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  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 2008
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10 years 6 months ago - 10 years 6 months ago #50340 by midwest6708
Replied by midwest6708 on topic Promacta question
I have nothing to offer you except moral support. If it helps you to know that most of us would be freaked out to have a count like that... I'm stating it here and now.

Question to the experts... Maybe a dumb one, but I'll ask anyway.
Might it help in this situation to draw out blood (and its platelet content) the way it's done for hemochromatosis and some other blood disorders?

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10 years 6 months ago #50342 by Rob16
Replied by Rob16 on topic Promacta question
Janet - That's a good question. I am no expert, but at the Red Cross one option is to donate just platelets instead of whole blood - they put everything else back into your body - so anemia should not be a deterrent, and the technology is certainly available.

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  • 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 6 months ago #50348 by Sandi
Replied by Sandi on topic Promacta question
I don't think that would help. It's usually not a treatment for Thrombocytosis. Aspirin is.

Good luck with the next count, DJ!

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10 years 6 months ago #50354 by Robert1959
Replied by Robert1959 on topic Promacta question
DJM
Those high numbers come as bit of a shock don't they. I once had 2 weeks at 1,036,000 and 1,084,000 while on NPlate, took an aspirin a day for a week and then lost 700,000 the following week back down to a safe level.
Luckily I didn't have any problems with that high count and I did not feel any different than when I was at the lowest levels.
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  • 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.
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10 years 6 months ago #50403 by DJM
Replied by DJM on topic Promacta question
Robert

That's actually comforting to me..that you experienced the same thing. How are your counts now? I go tomorrow to see what mine are doing..but I'm totally exhausted..never have I experienced exhaustion like this before..I'm always on the go and moving..but now I have to take a nap..really?!

Best wishes to you and thank you for sharing your experience..it helps!:)

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  • 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.
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10 years 6 months ago - 10 years 6 months ago #50404 by DJM
Replied by DJM on topic Promacta question
Midwest

That's what my sister was asking she wanted to me see if they could dilute my blood to lower the count..I have no idea :(

thanks for your support...freaking out is a calm word for what I'm doing at this point..LOL! :)

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  • 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 6 months ago #50407 by Sandi
Replied by Sandi on topic Promacta question
DJ:

Oddly, the symptoms of high platelet counts can be similar to those of low platelet counts. Bruising and bleeding can occur.

I hope the count is better tomorrow!

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10 years 6 months ago #50410 by Robert1959
Replied by Robert1959 on topic Promacta question
DJM
After my count dropped back down I moved around in the 150-600 zone for another 8 weeks and then my ITP just suddenly stopped and I have been at 200+ since late Oct 2014 without any medication. Fortunately I didn't experience any fatigue, bruising or bleeding at the high count and I hope that you have the same outcome.

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  • 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.
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10 years 6 months ago #50438 by DJM
Replied by DJM on topic Promacta question
Count today is 1,252,000. so they came down a little..thank god! Now to keep coming down until I'm back in my comfort zone. Seems weird to pray for a lower count..LOL!

I hope everyone is well :)

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  • 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 6 months ago #50439 by Sandi
Replied by Sandi on topic Promacta question
It's not weird! Once someone has experienced a clotting episode, they tend to want to err on the side of low platelets. I feel that way and I've never even had a clot.

Glad they went down some....hopefully that will continue.

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  • 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.
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10 years 5 months ago #50556 by DJM
Replied by DJM on topic Promacta question
Monday's count was 659,000.00 so coming down pretty quickly now. Joint aches like crazy..steriod withdrawal I'm sure..but my energy level is back up :)

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  • 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 5 months ago #50557 by Sandi
Replied by Sandi on topic Promacta question
Better! I'm glad to hear it!
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