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PROMACTA?

  • Kelirae24
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  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
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14 years 11 months ago #9004 by Kelirae24
PROMACTA? was created by Kelirae24
Has or is any one on promacta? I have been on it for 5 days and still around 4,000 can anyone tell me how long it takes to work or if it worked for them seems like a very expensive drug for a what if this works
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14 years 11 months ago #9019 by gr81
Replied by gr81 on topic Re:PROMACTA?
I've been on Promacta for almost 60 days. My platelets were 11K when I started. They are 93K now.

Good luck.
  • Kelirae24
  • Topic Author
  • Offline
  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
More
14 years 11 months ago #9021 by Kelirae24
Replied by Kelirae24 on topic Re:PROMACTA?
are you having any side effects?
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14 years 11 months ago #9028 by Ishani
Replied by Ishani on topic Re:PROMACTA?
I was on Promacta for 5 weeks, it didn't work for me. I had no side effects.

Now I'm on Nplate, and this seems to work. My counts climbed from less than 1000 to 6000 last thursday. :)
Look forward,
and the shadows
will fall behind you!
14 years 11 months ago #9033 by
Replied by on topic Re:PROMACTA?
I have been on Promacta for 9 months. Started taking it after immune suppressants quit working for me.
Relax, it can be slow to kick-in for some folks.....I am one. IMO, the benefits are worth the delay.
I started on 50mg/day dosage. Hovered in the 4k-8k range for the first week. I was then bumped to the maximum dosage of 75mg/day. My count started on a slow upward climb. By the second week, I'd made it to 14k.
Then it took a couple of months to get into the mid-30k's.
From month 4 through month 6, I hovered in the 40k-50k range.
My most recent check was on August 30th, it has made it to 77k !!!
I have not seen that high of a count in years.
Now we are hoping to be able to reduce the dosage back to 50mg/day in November.
Promacta works for me (right now), it just took time to kick-in.
14 years 11 months ago #9035 by
Replied by on topic Re:PROMACTA?

are you having any side effects?

I neglected to address that question. Yes, I have had many side-effects from Promacta. Overall though, Promacta is far easier for me to live on than steroids and/or various immune-system suppressants.

Basic side-effects for me are:
appetite loss
creepy-crawlies (tiny spiders dancing under my skin)
upset stomach
fatigue
HEAT sensitive (can't stand summer heat for more than an hour or so)

I take my dosage around 1:00am-3:00am so the effects are minimized during the day. But hey, with the appetite loss, I've managed to start shedding some of those old Prednisone-pounds finally!
  • Kelirae24
  • Topic Author
  • Offline
  • I'm 31 years old and a mom to two awesome little boys, I was diagnosed with itp when I was 17 years old. With no treatment my counts are 0-5 I am currently on nplate and I had a splenectomy in 2004
More
14 years 10 months ago #10015 by Kelirae24
Replied by Kelirae24 on topic Re:PROMACTA?
Promacta didnt work has nplate still been working?
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14 years 10 months ago #10017 by 28lorelei
Replied by 28lorelei on topic Re:PROMACTA?

Basic side effects for me are...HEAT sensitive (can't stand summer heat for more than an hour or so)

I have that even without Promacta! Guess that's because I'm from Finland, and am not that good at tolerating New England summer heat :)
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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.


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