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Started Promacta February 2017

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8 years 3 weeks ago #60593 by Margaret k
Replied by Margaret k on topic Started Promacta February 2017
The tablets are coated for a reason. Splitting them might have an adverse effect on the digestive system.
  • D.Mann
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8 years 3 weeks ago #60594 by D.Mann
Replied by D.Mann on topic Starting Promacta tonight.
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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8 years 3 weeks ago #60599 by Sandi
Replied by Sandi on topic Starting Promacta tonight.
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.
  • mrsb04
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8 years 1 week ago #60780 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
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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8 years 1 week ago #60782 by apantoj1
Replied by apantoj1 on topic Started Promacta February 2017
What is your platelet goal? Good luck on your current treatment

Allie2
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8 years 1 week ago #60785 by momto3boys
Replied by momto3boys on topic Started Promacta February 2017

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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8 years 1 week ago #60794 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
Thanks mom, I'm happy with 54, just hoping it doesn't shoot up too high post cold.
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8 years 5 days ago #60955 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
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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7 years 10 months ago #61901 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
A dip to the 20s with yet another cold but back up to 77 today.
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7 years 8 months ago - 7 years 8 months ago #62370 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
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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7 years 8 months ago #62375 by Sandi
Replied by Sandi on topic Started Promacta February 2017
Ignorant, rude people! I'm glad your count is back in a good range!
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7 years 6 months ago - 7 years 6 months ago #62840 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
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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7 years 6 months ago #62842 by apantoj1
Replied by apantoj1 on topic Started Promacta February 2017
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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7 years 6 months ago #62873 by Hal9000
Replied by Hal9000 on topic Started Promacta February 2017

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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7 years 6 months ago - 5 years 10 months ago #62875 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
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 a viral 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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7 years 6 months ago #62876 by momto3boys
Replied by momto3boys on topic Started Promacta February 2017
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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7 years 6 months ago #62910 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
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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7 years 6 months ago #62911 by Hal9000
Replied by Hal9000 on topic Started Promacta February 2017
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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7 years 6 months ago #62917 by Sandi
Replied by Sandi on topic Started Promacta February 2017
37.5 mg's has been used by splitting the pills. Emily did that.

Good news on the counts, MrsB!
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7 years 6 months ago #62926 by apantoj1
Replied by apantoj1 on topic Started Promacta February 2017
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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7 years 6 months ago #62955 by EmilyK
Replied by EmilyK on topic Started Promacta February 2017
Or you could take a 25mg and a 12.5 mg. They make both doses!
Emily
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7 years 6 months ago #62957 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
I think the chances of getting 12.5 mg tabs in the UK are very slim.
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7 years 6 months ago - 7 years 6 months ago #63086 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
Still on 50mg/50mg/25mg Eltrombopag and 3mg of Pred. Count 32 last week now 39. Retest next week.
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7 years 6 months ago #63093 by EmilyK
Replied by EmilyK on topic Started Promacta February 2017
Your count sounds perfect. Wish i could send you my 12.5! Hooe you are otherwise doing well.
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7 years 6 months ago #63094 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
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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7 years 5 months ago - 7 years 5 months ago #63132 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
Count is 85 today; drug doses still the same.
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7 years 5 months ago #63137 by momto3boys
Replied by momto3boys on topic Started Promacta February 2017
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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7 years 5 months ago - 7 years 5 months ago #63293 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
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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7 years 3 months ago - 7 years 3 months ago #63720 by mrsb04
Replied by mrsb04 on topic Started Promacta February 2017
Still on 50mg Eltrombopag a day. Count stable:- 41 on 30th April and 42 today. Pred taper resumes tomorrow
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7 years 3 months ago #63721 by Sandi
Replied by Sandi on topic Started Promacta February 2017
Do you think steroids may have lowered the CRP? My Rheumatologist wanted to stick me on Imuran to lower mine.