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Promacta ups and downs

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15 years 7 months ago #674 by FranL
Promacta ups and downs was created by FranL
Counts done every two weeks. Pre treatment with Promacta 20,000
then 98,000
then 72,000
then 68,000
then 82,000
now 40,000

So I'm not sure what to think. I am feeling absolutely fabulous. No side effects at all and great energy and sleeping fine and good attitude. Just anxious to see where this drug goes...up and down....settling...failing... will see I guess.
  • 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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15 years 7 months ago #675 by Sandi
Replied by Sandi on topic Re:Promacta ups and downs
Fran:

You seem to have come a long way from a few weeks ago. That is saying something! I'd consider this a success.
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15 years 7 months ago #1043 by FranL
Replied by FranL on topic Re:Promacta ups and downs
Bummed. Platelets dropped some more to 30,000. Got my shots / vaccines in case I need to get my splenectomy in the near future. It was good while it lasted. First treatment that had no side effects. i'm grateful for that.
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15 years 7 months ago #1044 by FranL
Replied by FranL on topic Re:Promacta ups and downs
Bummed. Platelets dropped some more to 30,000. Got my shots / vaccines in case I need to get my splenectomy in the near future. It was good while it lasted. First treatment that had no side effects. i'm grateful for that.
  • 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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15 years 7 months ago #1047 by Sandi
Replied by Sandi on topic Re:Promacta ups and downs
Fran:

I wouldn't consider Promacta a failure. It is a maintenance drug that is supposed to provide safe counts, not normal counts. Staying above 30 is a reasonable goal.

I'd consider it a failure if you never got above 10-30. Are you at the highest dose?
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15 years 7 months ago #1066 by lili
Replied by lili on topic Re:Promacta ups and downs
30's not a bad count. And you never know, they might level off or go back up. Anyhow, best wished for lots of platelets.

Lily
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15 years 7 months ago #1072 by FranL
Replied by FranL on topic Re:Promacta ups and downs
I'm taking the maximum dose of 50mg according to my doctor. I feel good at 30,000 too but they tend to be trending downward so we'll see. I go back on March 18th to decide for sure on the splenectomy. I am grateful the Promacta gave me a few months of no side effects and safe counts. Thanks for all the well wishes folks. Love, light , and high platelets to you all!!!
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15 years 7 months ago #1073 by FranL
Replied by FranL on topic Re:Promacta ups and downs
I'm taking the maximum dose of 50mg according to my doctor. I feel good at 30,000 too but they tend to be trending downward so we'll see. I go back on March 18th to decide for sure on the splenectomy. I am grateful the Promacta gave me a few months of no side effects and safe counts. Thanks for all the well wishes folks. Love, light , and high platelets to you all!!!
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15 years 7 months ago #1074 by FranL
Replied by FranL on topic Re:Promacta ups and downs
I'm taking the maximum dose of 50mg according to my doctor. I feel good at 30,000 too but they tend to be trending downward so we'll see. I go back on March 18th to decide for sure on the splenectomy. I am grateful the Promacta gave me a few months of no side effects and safe counts. Thanks for all the well wishes folks. Love, light , and high platelets to you all!!!
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15 years 7 months ago #1248 by FranL
Replied by FranL on topic Re:Promacta ups and downs
Dropping fast. Down to 19,000. Doctor is having me boost my Promacta up to 75mg a day and will schedule a splenectomy very soon. Got the most awesome gift today though..."Smells like Spleen Spirit" gift set. T-shirt, stickers, button and cute spleen plush toy. Made my day!

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15 years 6 months ago #1262 by lili
Replied by lili on topic Re:Promacta ups and downs
Very cute.
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15 years 6 months ago #1429 by FranL
Replied by FranL on topic Re:Promacta ups and downs
Platelets jumped up to 75,000 after a week on 75 mg of Promacta. AWESOME but having some slight fatigue and yucky feelings. I'll take it though. Discussing splenectomy with doctor next Thursday.
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15 years 6 months ago #1468 by dmblank
Replied by dmblank on topic Re:Promacta ups and downs
Wish you the best....it's a big decision.
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15 years 6 months ago #1470 by tortie
Replied by tortie on topic Re:Promacta ups and downs
I sure hope this works for you. I never tried this one but keep hoping that promacta will give great results for ITPers. Anyway I'm having my splenectomy in a few weeks. I hope you feel better.

Michelle
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15 years 6 months ago #1502 by FranL
Replied by FranL on topic Re:Promacta ups and downs
Got an appointment with a surgeon finally. Going to chat with him on Monday to plan and prep for splenectomy. Hoping to get it done around March 24th. I'll keep you posted...thanks for all the encouragement and well wishes!!!
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15 years 6 months ago #1504 by ddunn
Replied by ddunn on topic Re:Promacta ups and downs
i have just been diagnosed with ITP, as of 3 wks ago.....so am reading so i know what to expect.......thanks for sharing your story, I will be pulling and praying for ya, and hope all goes well. Please keep us posted here. I have learned so much reading here.
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15 years 6 months ago #1621 by FranL
Replied by FranL on topic Re:Promacta ups and downs
Surgery date set. March 23rd. Bye bye spleen! Hello high platelets!!
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15 years 6 months ago #1629 by ddunn
Replied by ddunn on topic Re:Promacta ups and downs
good luck, and keep us posted!!!!!!!!!!
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15 years 6 months ago #1653 by tortie
Replied by tortie on topic Re:Promacta ups and downs
I'll be hoping it is successful!!!! Are they giving you heparin after the surgery?
My surgeon told me that's what he does and also does a follow-up CT scan about a week later.

Keep us posted, mine is several more weeks away. Good luck.

Michelle
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15 years 6 months ago #1654 by FranL
Replied by FranL on topic Re:Promacta ups and downs
Ct Scan yesterday. All looks normal. No assessor y spleen, typical vessels, etc. Monday I get the chest ex-ray, ekg, and discuss things with both a nurse and then the anesthesiologist. Check in Tuesday morning at 8:15. Probably won't post for a couple of days...but will give you an update as soon as I can.

Hepren? Not sure...will ask though.

Best of luck to everyone and thanks for the kindness!

Fran
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15 years 6 months ago #1769 by FranL
Replied by FranL on topic Re:Promacta ups and downs
Even at 75mg of Promacta a day my platelets have dropped again. 31,000. My hemotologist has two patients on Promacta. I'm not doing well and the other lady is doing great. So it does work for some. Spleen coming out next Tuesday (March 23). Good timing.
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15 years 6 months ago #2015 by FranL
Replied by FranL on topic Re:Promacta ups and downs
Did all my pre-op stuff today then my surgeon decides that my platelets are too low for surgery. 41,000! Very frustrated. Scheduled for IVIG treatment on Thursday to boost my platelets and then everything will happen next week instead of tomorrow. New surgery date is March 30th.
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