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Promacta stopped working

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5 years 10 months ago #68045 by cedrap
Promacta stopped working was created by cedrap
I'm really disappointed. I've been on Promacta for about 3 months and it's suddenly stopped working. Have other people experienced this?

Once Promacta started working I had great counts: 293, 162, 160, 135. Then on Monday my count was at 24. We're going to re-check on Friday but my Dr wants to move me toward starting Tavalisse.
  • mrsb04
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  • 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.
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5 years 10 months ago #68046 by mrsb04
Replied by mrsb04 on topic Promacta stopped working
What dose are you on? Have you got a virus?
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5 years 10 months ago #68047 by cedrap
Replied by cedrap on topic Promacta stopped working
I've been on 75mg the whole time. Yes, I've been sick a lot lately, but I got some of those higher counts previously mentioned while I was sick. (I had pneumonia in September, a cold in October, and I'm getting over a cold right now. Gotta love the effects of being on steroids and rituximab.)
  • mrsb04
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  • 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.
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5 years 10 months ago #68048 by mrsb04
Replied by mrsb04 on topic Promacta stopped working
My count hits the floor when I have a cold. Last week it was 7. I don't change my eltrombopag dose I just have a quick sharp shock of steroids then it rights itself.
The following user(s) said Thank You: cedrap
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5 years 10 months ago #68049 by cedrap
Replied by cedrap on topic Promacta stopped working
Interesting. I'll ask my Dr about that. Still seems odd that it didn't drop when I was sick with pneumonia or the first cold.

Thank you for your insight!
  • mrsb04
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  • 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.
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5 years 10 months ago #68050 by mrsb04
Replied by mrsb04 on topic Promacta stopped working
Maybe they were bacterial and this is viral. Bacterial infections don't appear to affect my count where as viruses wipe it out.
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5 years 10 months ago #68054 by poseymint
Replied by poseymint on topic Promacta stopped working
I wouldn't give up on Promacta after just one lower count. Counts fluctuate, sometimes theres no apparent reason. I've had counts of 3 on Nplate, then they bounce back up. My policy is to not adjust the dose- just stay with the same dose and watch the counts over a period of 4-8wks. Then you'll have a better idea of what Promacta is doing.
The following user(s) said Thank You: cedrap
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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5 years 10 months ago - 5 years 10 months ago #68072 by Hal9000
Replied by Hal9000 on topic Promacta stopped working

cedrap wrote: I'm really disappointed. I've been on Promacta for about 3 months and it's suddenly stopped working. Have other people experienced this?

Once Promacta started working I had great counts: 293, 162, 160, 135. Then on Monday my count was at 24. We're going to re-check on Friday but my Dr wants to move me toward starting Tavalisse.

cedrap, is it safe to say that counts started at 293 and then eventually fell to 135 over a period of (2x4=) 8 weeks or so? I assume your doctor doesn't think bone fibrosis/scarring is the issue here. When you had pneumonia did they give you a bunch of antibiotics?

IMHO, I'd be looking to a higher Promacta dose if counts fall further. For insurance approval, I've heard the term 'medically necessary' to get more than a 75mg dose approval. Also. If you start Tavalisse instead, I would lobby your doctor to continue Promacta at 75mg so that your odds of responding to Tavalisse are better. Then taper Promacta if/as needed on response to Tavalisse.
ITP Types and Treatments by HAL
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5 years 10 months ago #68073 by cedrap
Replied by cedrap on topic Promacta stopped working
Thankfully, my most recent count was 92 so it I'll stay on Promacta for now. My Dr said she's not sure what happened but it could have been from a virus.

Yes, they put me on a round of antibiotics when I got pneumonia. However, my count actually went up when I was on the antibiotic.

My numbers peaked at 293 around a week after finishing antibiotics, then slowly fell over the next 7 weeks until I hit 24.

I'm already on the highest dose (75mg) of Promacta. You're saying you can get a higher dose if needed?

Thank you for the input.
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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5 years 10 months ago - 5 years 10 months ago #68075 by Hal9000
Replied by Hal9000 on topic Promacta stopped working
Ah ok, 92 is good. Interesting. Do you happen to remember the name of the antibiotic that raised your counts?

I first heard about Promacta doses higher than 75mg from Carcamoc10 earlier this year. She knows more. As I recall, with no response to 75mg, she ended up seeing a Hema that knew a lot about treating difficult ITP. Later, I met someone at the PDSA conference this summer that was on 110 to 120mg dose. He mentioned 'medically necessary' to me for insurance approval. So it is a recent thing that appears to be becoming more popular. Thank goodness. Promacta non responders are now becoming responders - albeit at a higher dose.
ITP Types and Treatments by HAL
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5 years 10 months ago #68076 by cedrap
Replied by cedrap on topic Promacta stopped working
I ended up in the ER for the pneumonia and they gave me cefTRIAXone (ROCEPHIN) in the hospital and prescribed a course of azithromycin (ZITHROMAX) for home.
The following user(s) said Thank You: Hal9000
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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5 years 10 months ago #68080 by Hal9000
Replied by Hal9000 on topic Promacta stopped working
Thanks for that cedrap.
Looks like Azithromycin/Zithromax has an established reputation of raising counts. Who knew? See comment by user 'sharonb'.
pdsa.org/discussion-group/6-general-itp-discussion/27981-no-symptoms-at-3.html#40258

Wiki says the antibiotic is unusual in that the drug has an affinity to concentrate in phagocytes. Interesting.
en.wikipedia.org/wiki/Azithromycin#Pharmacokinetics

Recall that phagocytes are where platelets meet their demise in ITP. So it is blocking platelet destruction some how. In some other reading, it looks like the antibiotic only raises counts when one has an infection too. Taking the antibiotic alone doesn't raise counts.
ITP Types and Treatments by HAL
  • mrsb04
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  • 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.
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5 years 10 months ago #68082 by mrsb04
Replied by mrsb04 on topic Promacta stopped working
Ceftriaxone a commomn side effect is "Abnormalities with your white blood cells (such as a decrease of leucocytes and an increase of eosinophils) and platelets (decrease of thrombocytes)" From the UK PIL
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