Platelet Disorder Support Association

Join Us:

Membership Matters

Support Us:

Make a Donation
    Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Promacta ups and downs

More
15 years 11 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.

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
15 years 11 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.

Please Log in or Create an account to join the conversation.

More
15 years 11 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.

Please Log in or Create an account to join the conversation.

More
15 years 11 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.

Please Log in or Create an account to join the conversation.

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
15 years 11 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?

Please Log in or Create an account to join the conversation.

More
15 years 11 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

Please Log in or Create an account to join the conversation.

More
15 years 11 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!!!

Please Log in or Create an account to join the conversation.

More
15 years 11 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!!!

Please Log in or Create an account to join the conversation.

More
15 years 11 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!!!

Please Log in or Create an account to join the conversation.

More
15 years 10 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!

This image is hidden for guests.
Please log in or register to see it.



Iheartguts.com

Please Log in or Create an account to join the conversation.

More
15 years 10 months ago #1262 by lili
Replied by lili on topic Re:Promacta ups and downs
Very cute.

Please Log in or Create an account to join the conversation.

More
15 years 10 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.

Please Log in or Create an account to join the conversation.

More
15 years 10 months ago #1468 by dmblank
Replied by dmblank on topic Re:Promacta ups and downs
Wish you the best....it's a big decision.

Please Log in or Create an account to join the conversation.

More
15 years 10 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

Please Log in or Create an account to join the conversation.

More
15 years 10 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!!!

Please Log in or Create an account to join the conversation.

More
15 years 10 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.

Please Log in or Create an account to join the conversation.

More
15 years 10 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!!

Please Log in or Create an account to join the conversation.

More
15 years 10 months ago #1629 by ddunn
Replied by ddunn on topic Re:Promacta ups and downs
good luck, and keep us posted!!!!!!!!!!

Please Log in or Create an account to join the conversation.

More
15 years 10 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

Please Log in or Create an account to join the conversation.

More
15 years 10 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

Please Log in or Create an account to join the conversation.

More
15 years 10 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.

Please Log in or Create an account to join the conversation.

More
15 years 10 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.

Please Log in or Create an account to join the conversation.

You’re not alone. We have answers! Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or PDSA@PDSA.org.

Platelet Disorder Support Association

Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003  |  pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.

© Copyright 1997 - 2026, Platelet Disorder Support Association. All rights reserved.

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.