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Promacta Response to Increased Dose

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12 years 7 months ago #33991 by DRoberts264
Promacta Response to Increased Dose was created by DRoberts264
:) I was wondering if anyone might have had a simular reponse to Promacta? I have been on a 50mg dose for 4 weeks without any response and dose was increased to 75mg three days ago, was just wondering if the increased dose should start to get a response right a way or not? Have had ITP since Feb 2013 and have not had any great luck with any treatment so far. Thanks!!

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 7 months ago #33997 by amberyard
Replied by amberyard on topic Promacta Response to Increased Dose
I am in the same boat. 50mg is not working had to take 4 days of dex at 40mg to up my count it was at 26k then with dex 116k. Next cbc on Monday to see if he wants to up the dose. I am sure he will up it to 75mg. They said it can take a month before stable numbers but everything I have read said 10 days.
The following user(s) said Thank You: DRoberts264

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  • weirdjack
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12 years 7 months ago #33999 by weirdjack
Replied by weirdjack on topic Promacta Response to Increased Dose
Everyone is different and we all respond differently. Many of us took time to respond to Promacta.
I began Promacta treatment with a 4k count and a 50mg dosage. After 6 weeks, I had zoomed to 14k.
Upped the dosage to 75mg and got to 32k in a couple more weeks, then 52k one week later.
After 10 months at 75mg, we dropped the dosage back to 50mg. 50mg kept me in the 50k range nicely for 2 years after.
Remember that a 50k range count is the goal of Promacta (and Nplate), not a 'normal' count.

Yep, one can always use Dex as a boost, if there are symptom concerns.
.

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  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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12 years 7 months ago #34163 by karenr
Replied by karenr on topic Promacta Response to Increased Dose
DRob, what were your counts when you started the Promacta, and what are they now?
WeirdJ, were (are) you on prednisone with the Promacta?

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  • weirdjack
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12 years 7 months ago - 12 years 7 months ago #34177 by weirdjack
Replied by weirdjack on topic Promacta Response to Increased Dose

WeirdJ, were (are) you on prednisone with the Promacta?

No, I did not take Prednisone while on Promacta.
Haven't touched Prednisone since the beginning of this adventure nearly 11 years ago. After a couple months of 'aaarrrgghhh' and 30 pounds gained, I stopped using Prednisone. I can handle a Dex pulse, but I cannot stand Prednisone for days/weeks/months on end. It's bad enough for my wife to put up with me in a normal state, without me being uber-Pred-cranky.
While I did use a 4-day Dex pulse to boost the count when I started Promacta, it didn't last long. I do not normally use more than one treatment at a time for ITP. I'm just not much of a cocktail person.
Now if they made beer-flavored Prednisone....I might view things differently. :)
.

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 6 months ago #34838 by amberyard
Replied by amberyard on topic Promacta Response to Increased Dose
WeirdJ,

I have been on Promacta over a month and 12 days ago upped to 75mg. Count this week was 52k and the doctor wants me to take Dex on Sunday and wants to change me to N-plate?? I thought 50k was the goal on either medications. I am so lost, people have told me once again to look for a new doctor. I am not going to take the Dex and getting counts checked next week to see where Promacta puts me. If I take the Dex it will mess up the numbers and will not know if it was the Promacta or the Dex.

Any input would be great, since you have been on Promacta for awhile.

Thanks

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  • weirdjack
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12 years 6 months ago #34896 by weirdjack
Replied by weirdjack on topic Promacta Response to Increased Dose
52k? Wonderful!
At this point, I would continue on 75mg of Promacta and keep an eye on the platelet level and liver numbers for the next couple of months. You have achieved Promacta perfection (and Nplate as well).
Why in the world would your doctor want to change anything? Has he read the Promacta warnings?

When I steadied out in the high-60k range (67k as I recall) on 75mg of Promacta, my hematologist reduced the dosage to 50mg so that I would DROP into the 50k range instead. As so many here have said before, there are serious dangers with TPOs and having higher counts than what their manufacturers' recommend. They are not used the same as Prednisone, or other treatments. The goal is not to get 400k, the goal is to be stable at around 50k.
Personally, I'd much rather have a '50k low count' than a stroke.

Dex is a great booster. But once 50k is reached and stable on Promacta, there is no need to add Dex.
Just my opinion and personal experience.
.

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 6 months ago #34900 by amberyard
Replied by amberyard on topic Promacta Response to Increased Dose
thanks weirdjack!

that is what I was thinking and didn't take the dex yesterday and getting a re count on wednesday. thanks again for the help!

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