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TOPIC: Starting Promacta tonight.

Started Promacta February 2017 1 year 7 months ago #60593

  • Margaret k
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The tablets are coated for a reason. Splitting them might have an adverse effect on the digestive system.

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Starting Promacta tonight. 1 year 7 months ago #60594

  • D.Mann
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When I first started Promcta I was splitting the 50mg tablets. My hemo gave me enough to go almost a month out of samples. He told me to split them. I had no adverse reaction to them. I did get a pill splitter to make it easier and more uniform.

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Starting Promacta tonight. 1 year 7 months ago #60599

  • Sandi
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Some pills are time release drugs which is why splitting is not a good idea. You get too much of the drug at once and its affects are not spread out like they are intended. I don't know if Promacta is a time released medication.
Margaret is right too....some are coated for digestion reasons.

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Started Promacta February 2017 1 year 7 months ago #60780

  • mrsb04
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Still doing as I'm told. Count of 54 on Monday. Normally it would be higher alternating 25mg/50mg but I've got a cold again so no idea if this is a 'true' reading. Next count due a week today.

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Started Promacta February 2017 1 year 7 months ago #60782

  • apantoj1
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What is your platelet goal? Good luck on your current treatment
Allie2

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Started Promacta February 2017 1 year 7 months ago #60785

  • momto3boys
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mrsb04 wrote: Still doing as I'm told. Count of 54 on Monday. Normally it would be higher alternating 25mg/50mg but I've got a cold again so no idea if this is a 'true' reading. Next count due a week today.


Don't you just hate it when colds muck up our data? :lol:

54 sounds pretty good taking the cold into account. Hopefully you will be feeling better soon and back in your expected ranges for the dosage by the next count.

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Started Promacta February 2017 1 year 7 months ago #60794

  • mrsb04
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Thanks mom, I'm happy with 54, just hoping it doesn't shoot up too high post cold.

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Started Promacta February 2017 1 year 6 months ago #60955

  • mrsb04
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Count of 49 this week. So it's not gone too high post cold. However I had my 'flu jab last weekend so that may have had an effect but hasn't in the past.

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Started Promacta February 2017 1 year 4 months ago #61901

  • mrsb04
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A dip to the 20s with yet another cold but back up to 77 today.

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Started Promacta February 2017 1 year 2 months ago #62370

  • mrsb04
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Just an update.
I set off to Australia , with youngest son, 2 days before Christmas on normal regime of 25mg/50mg Eltrombopag & 3mg Prednisolone with a count of 79. A week of burning the candle at both ends culminating in a flight from Melbourne to Sydney on New Years Eve.

The standard bunch of impatient people jostling whilst waiting for suitcases post flight, whacked by one as a chap yanked his off off the baggage carousel turned round an crashed it into me.

Booked into hotel 2 hours later with a haematoma the size of a tennis ball on left knee. Next morning son says ' mum the back of your legs are black and blue' which didn't surprise me because at the time I was cleaning my teeth and spitting fresh blood. !!
Quick 3 day bolus of Pred just to be on the safe side then back to normal dosing.

2 weeks later back to work and sent bloods straight to the lab. Count came back at 21.
Held my nerve carried on with normal regime count 79 on 26th Jan.

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Started Promacta February 2017 1 year 2 months ago #62375

  • Sandi
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Ignorant, rude people! I'm glad your count is back in a good range!
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Started Promacta February 2017 1 year 1 month ago #62840

  • mrsb04
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Not a happy bunny.

Routine pre appointment bloods on Friday ready for this morning's appointment with haemo.
Frantic phone call from on call haemo reg at 9:15 pm count was 6 with no signs of clumping as she'd seen the blood film herself, would I go in.

No I would not I have absolutely no symptoms, the hospital is 17miles away, I've had too much wine to drive and there are no trains or buses until the morning.

Next idea; take 20 mg of Pred stat. No thank you I'll be climbing the walls by midnight. Against my better judgement I agreed take 10mg for the next 2 mornings only, get my bloods done at work on Sunday evening then tip up in clinic as planned.

Have just got back. All other tests are normal my CRP is less than 5 so no obvious signs of an impending infection/virus, my count has gone up to 34.

My worry is I'm losing response to Eltrombopag like I did Romiplostim.
Upshot is continue on 3mg Pred daily increase Eltrombopag from 25/50 to 25/50/50 and retest next Monday.
Watch this space.

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Started Promacta February 2017 1 year 1 month ago #62842

  • apantoj1
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Hopefully your platelet will stabilized soon. I understand the feeling of frustration. Don’t lost hope, keep on going. One day at a time.
Allie2
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Started Promacta February 2017 1 year 1 month ago #62873

  • Hal9000
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mrsb04 wrote: Not a happy bunny. ...

Yea, but you handled it so well Anne. Calm under pressure?

Curious. What were they going to do if you had come in? Given you platelets, IVIG, steroids, or some combination? From a 6 count to 34 count a few hours later, what more could one ask for?

Did you take the second 10mg of Pred after the nice 34 count? Were you expecting that quick of a response?

That is interesting that you're using CRP to gauge immune response. Is there some medical theory to go along with that?

mrsb04 wrote: ... My worry is I'm losing response to Eltrombopag like I did Romiplostim.

Color me 'skeptical' on that one.

mrsb04 wrote: ... Upshot is continue on 3mg Pred daily increase Eltrombopag from 25/50 to 25/50/50 and retest next Monday

That is only an avg increase from 37.5mg to 41.7mg (11 percent more). But I think we both know that consecutive day 50 dose is going to push counts much higher.

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Started Promacta February 2017 1 year 1 month ago #62875

  • mrsb04
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Hal

No idea what they would have done other than fill me up with steroids.

Over here in the UK best practice is stat doses of IVIg & Platelet transfusions are only given if one is actively bleeding or requires emergency surgery with a low count. I completely agree with this & would have refused either as completely asymptomatic. They both produce a transient response and to give them to someone who doesn't require them is a complete waste of a gift. Donating over here is voluntary. I used to be a blood donor until I became an ITP patient and would have been horrified if my donation was used unnecessarily.

I took the 2 doses of 10mg Pred before the re test that produced the count of 34. I'm back on my 3mg a day thankfully.

Can't find any evidence to prove that high CRP correlates to platelet drop but know that every time I get an infection both happen. I was hoping that would be the case this time but it wasn't unfortunately.

I have a long history of stress related anorexia which I generally manage to control well. I don't intentionally stop eating it just happens. The only thing I can think of is that my diet wasn't as good as it should have been for a couple of weeks prior to the count of 6. Although I don't feel stressed at all it is coming up to the anniversary of my husband's death and what would have been my 40th wedding anniversary so maybe this accounts for my dietary lapse.

Last time I was on 50/50/25 Eltrombopag my count shot up but I was on 6mg Pred a day then. Will get retest on Monday morning before I leave work.

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Started Promacta February 2017 1 year 1 month ago #62876

  • momto3boys
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Phooey about the low count Anne! No symptoms is good news though. I'm hoping for you that it is a random outlier from stress or the eating issue and hopefully things will right themselves by the next count!

Don't give up hope on the promacta until there is some sort of a trend over time. Stay positive and keep us posted!
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Started Promacta February 2017 1 year 1 month ago #62910

  • mrsb04
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Count has gone up to 82 today, which is spot on in my opinion. Haemo wants me to stay on current regime with another test next week as doesn't want to over correct. Suits me as I'll become 'neurotic' if count goes too high.

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Started Promacta February 2017 1 year 1 month ago #62911

  • Hal9000
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Well done and well played.

25mg not enough, 50mg too much. If only 37.5 dose existed. Should I start a new thread on how I cut Promacta tablets in half? Or, would that be frowned upon?

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Started Promacta February 2017 1 year 1 month ago #62917

  • Sandi
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37.5 mg's has been used by splitting the pills. Emily did that.

Good news on the counts, MrsB!
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Started Promacta February 2017 1 year 1 month ago #62926

  • apantoj1
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Me too I used promacta last year and was instructed by my hema to split the pill to get the amount I need.
Allie2

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Started Promacta February 2017 1 year 1 month ago #62955

  • EmilyK
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Or you could take a 25mg and a 12.5 mg. They make both doses!
Emily
Diagnosed Jan 2015 at age 50 with 13,000.

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Started Promacta February 2017 1 year 1 month ago #62957

  • mrsb04
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I think the chances of getting 12.5 mg tabs in the UK are very slim.

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Started Promacta February 2017 1 year 2 weeks ago #63086

  • mrsb04
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Still on 50mg/50mg/25mg Eltrombopag and 3mg of Pred. Count 32 last week now 39. Retest next week.

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Started Promacta February 2017 1 year 2 weeks ago #63093

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Your count sounds perfect. Wish i could send you my 12.5! Hooe you are otherwise doing well.
Diagnosed Jan 2015 at age 50 with 13,000.
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Started Promacta February 2017 1 year 2 weeks ago #63094

  • mrsb04
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I'm happy with count Emily just disappointed I've had to increase dose to get to it. Hopefully only a blip and can reduce it in a while. I'm feeling fine thank you.

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Started Promacta February 2017 1 year 2 weeks ago #63132

  • mrsb04
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Count is 85 today; drug doses still the same.

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Started Promacta February 2017 1 year 2 weeks ago #63137

  • momto3boys
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Nice Anne, popping back up a bit. Looks like maybe you can dial down the eltrombopag again if this keeps up!
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Started Promacta February 2017 11 months 4 weeks ago #63293

  • mrsb04
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Bother bother bother, count down to 24, not surprised as becoming symptomatic. CRP is normal so no obvious infection to blame.
Just seen haemo who suggested going up 50mg a day. I'm going to do so as it's a better option than increasing Pred which remains at 3mg a day.

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Started Promacta February 2017 10 months 5 days ago #63720

  • mrsb04
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Still on 50mg Eltrombopag a day. Count stable:- 41 on 30th April and 42 today. Pred taper resumes tomorrow

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Started Promacta February 2017 10 months 5 days ago #63721

  • Sandi
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Do you think steroids may have lowered the CRP? My Rheumatologist wanted to stick me on Imuran to lower mine.

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