Platelet Disorder Support Association

Join Us:

Become a Member

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!

Started Promacta February 2017

  • mrsb04
  • Topic Author
  • Away
  • 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.
More
6 years 4 months ago - 6 years 4 months ago #66519 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
Still taking Eltrombopag 50mg & Pred 2mg on a daily basis. Count is was 59 at last check 3 weeks ago now it is 30. No change to meds recheck count next Monday
  • mrsb04
  • Topic Author
  • Away
  • 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.
More
6 years 4 months ago - 6 years 4 months ago #66589 by mrsb04
Replied by mrsb04 on topic Started promacta February 2017
Platelet count is 50
  • Lman
  • Offline
  • We cannot change the cards we are dealt, just how we play the hand.
More
6 years 4 months ago #66591 by Lman
Replied by Lman on topic Starting Promacta tonight.
Good luck :)
The following user(s) said Thank You: mrsb04
  • mrsb04
  • Topic Author
  • Away
  • 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.
More
6 years 4 months ago #66698 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
Count was 68 yesterday. Haemo suggests I recommence Pred taper by dropping to 1mg/2mg on alt days, retesting platelet count in a month.
I've started at 1mg/2mg/2mg this morning for a couple of weeks.
More
6 years 4 months ago #66699 by MelA
Replied by MelA on topic Started Promacta February 2017
That's good new - hope the taper goes smoothly!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: mrsb04
More
6 years 2 months ago #67178 by Margaret k
Replied by Margaret k on topic Started Promacta February 2017
I haven't posted for a while as I have been lucky to be stable around 100 on 6x 25 mg and 1x 50 mg eltrombopag since April 2019. Need to work on my haema to drop the last 50 to a 25 when I see him later this month. I feel really happy with this as 3.5 years ago I was a seemingly hopeless case;pancytopenic with platelets at 1 ,white cells at rock bottom, anaemic and suffering from a necrotising gum infection. All that gradually changed thanks to returning to eltrombopag 75 mg daily. To be stable on just 25 mg daily would be a great achievement. What a mystery this illness is , but my experience shows that we should never be pessimistic about the possibility of improvement, even when things seem at their worst.
More
6 years 2 months ago #67184 by Margaret k
Replied by Margaret k on topic Started Promacta February 2017
I just worked out that it has taken 13 separate reductions of 25 mg per week each time for me to have come down gradually from 75 mg daily to almost 25 mg daily, over 3.5 years. In that time after having built up to a count of 150 in the first 6 months, I have never been below 90 and only above 150 briefly, always coming down with the small dose reduction.It was just as well I stayed at about 100 , given that I had to have two major operations last year. fortunately nothing seems to lower my count, not illness or stress , ( and I had a lot of stress last year) alcohol or foods. Fingers crossed things continue this way.
  • mrsb04
  • Topic Author
  • Away
  • 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.
More
6 years 2 months ago #67186 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
I hope so Margaret. I'm still on 50 mg a day.
  • Lman
  • Offline
  • We cannot change the cards we are dealt, just how we play the hand.
More
6 years 1 month ago #67189 by Lman
Replied by Lman on topic Started Promacta February 2017
Ann-
after almost 5 years of having itp, have you observed any improvement in your platelet counts or reduction of your symptoms? or everything is same (or even worse) as the first day?
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
6 years 1 month ago - 6 years 1 month ago #67192 by Hal9000
Replied by Hal9000 on topic Started Promacta February 2017
75mg to 25mg is quite a journey Margaret. Thanks for the good news. Before Promacta and Nplate, ITP must have been a much bigger challenge then it is today. I know I can get by with just Danazol. But what about folks that just respond to Promacta/Nplate only? ITP must have been hell on earth if one has bleeding symptoms.
ITP Types and Treatments by HAL
  • mrsb04
  • Topic Author
  • Away
  • 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.
More
6 years 1 month ago - 6 years 1 month ago #67201 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
Lman
About a year ago I wrote "Asymptomatic apart from accidental bruises around 30. Once count below 30 start to feel cold. Below 20 tired with unexplained bruises, below 10 blood blisters in mouth. "
This had always been the case. However in February I had a slight nosebleed, asymptomatic with count of 32. Never had a nose bleed before.
In April I had a major nosebleed & discovered count was 8. I was completely asymptomatic at that time & had no idea my count was in single figures.
Now my count is 40 and am covered in bruises from gardening bumps and scrapes.
Anne
The following user(s) said Thank You: Lman
More
6 years 1 month ago #67221 by Margaret k
Replied by Margaret k on topic Started Promacta February 2017
I hope you soon become more stable Mrs B. After an initially good response to eltrombopag 50mg in 2012 I had a period in 2014/15 when my response deteriorated to about 10 on 50mg resulting in ineffective changes to Nplate and Rituximab when I fell right down to 1.It was very stressful as I too had nosebleeds and many bruises. It was a mystery why my count dropped and then another mystery why it slowly increased again in response to being put back on eltrombopag at 75 mg.
The following user(s) said Thank You: mrsb04
More
6 years 1 month ago - 6 years 1 month ago #67371 by Margaret k
Replied by Margaret k on topic Started Promacta February 2017
As my count today was 158 I have to celebrate now being on only 25 mg 7 days a week. Next check in 6 weeks. Fortunately Hal my itp arrived as Eltrombopag was becoming more readily prescribed in Scotland. As I had no response to steroids or ivig and sequestered platelets in my liver Eltrombopag was given to me about 6 weeks after diagnosis. I had a dip in responsiveness in 2015 and was also unresponsive to Nplate and Rituximab then. Returning to Eltrombopag at 75 mg daily worked gradually and the dose was gradually reduced in line with my increasing counts till I reached this point. If my count goes above 150 I expect to reduce further .
  • mrsb04
  • Topic Author
  • Away
  • 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.
More
6 years 1 month ago #67373 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
Great news Margaret. I'm holding between 40 and 50 on 50mg. I'm happy with that. I'm down to 1.5mg a day of Pred so light at the end of the steroid taper tunnel.
Platelet Disorder Support Association

Donate

About

Stay Informed

Follow Us

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.


Platelet Disorder Support Association
8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141
Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003
E-mail: pdsa@pdsa.org


© Copyright 1997 - 2025, Platelet Disorder Support Association. All rights reserved.
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.


Privacy Policy and Terms of Use