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TOPIC: Need Advice Please :(

Need Advice Please :( 2 weeks 3 days ago #66650

  • Carcamoc10
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Hal: yep, I got the go ahead from my hematologists for the 150mg starting tomorrow! I was informed it will be the highest dose we will be trying and I am ok with that. I’m starting to think if it was going to work for me, it would have already, but I was willing to give it a shot! I’m not very hopeful the 150mg will work, but I’ll make the last ditch effort just in case. More than likely will be getting more labs drawn tomorrow after my appointment (lucky me and my small, deep hard to find veins -_-)

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Need Advice Please :( 2 weeks 3 days ago #66652

  • Hal9000
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Lab test after the appointment?
I guess if counts are higher that would suggest the possibility of cyclic ITP at play.

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Need Advice Please :( 2 weeks 3 days ago #66655

  • Carcamoc10
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Hal: yes, I was doing once a week labs and the 15K level was Tuesday. Whenever I dip down under 20K, my hematologist has me do twice a week labs, so I am fully expecting him to send me straight to the lab after our appointment! As far as the cyclic ITP, how long do people typically last in their lowest levels? Would a couple of days be too soon to see a rise if it is a case of cyclic ITP?

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Need Advice Please :( 2 weeks 2 days ago #66658

  • Hal9000
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Don't know carcamoc. Cyclic is pretty rare. Haven't read of many instances. I read an Internet posted report of someone with cyclic that would mark her calendar when she expected symptoms. Apparently it was very regular and predictable.

Around here, 'midwest6708' is the only person that I know of that appears to have cyclic ITP. She uses steroids for rescue. As I recall, Rituxan seemed to make the cycles more difficult to manage afterwards with Nplate. She needed less during good days but still needed a big dose on crashes. She also had a bad reaction to Rituxan. Most recent post first:
pdsa.org/discussion-group/search.html?searchuser=midwest6708&exactname=1&searchdate=all&order=dec&childforums=1

Regardless, mrsb04 may have hit the nail on the head and a bit of Flu is the cause. Time will tell.
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Need Advice Please :( 2 weeks 1 day ago #66671

  • mrsb04
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Carcamoc (and anyone else who wants to read it)
I came across this whilst searching for something else. A very interesting read you might wish to discuss with you haemo if you stay on high dose Promacta for any length of time.
Eltrombopag interference in routine chemistry testing accessed via link at journals.sagepub.com/doi/pdf/10.1177/0004563215609372

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Need Advice Please :( 1 week 6 days ago #66680

  • Carcamoc10
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Mrsb04: thank you so much, I will share this with my hematologist and get his thoughts on it!

And as far as labs, hemo actually told me to skip them on Thursday since I was going on vacation and he didn’t want me to worry if my platelets were under 10K! I’m super thankful for that and I am trying to enjoy my beach vacation but I have noticed a good amount of petechiae popping up and a few blood blisters in my mouth. I’m taking 150mg Promacta every morning and am not planning on going to the hospital here to get checked out unless I start having bleeding symptoms! Let’s hope I don’t, but it’s back to the real world on Tuesday when I have to go back for labs and see where I’m at!

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Need Advice Please :( 1 week 6 days ago #66681

  • mrsb04
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Good on your haemo. I hope you enjoy your holiday.
When you say you take Promacta in the morning what sort of time?
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Need Advice Please :( 1 week 6 days ago #66682

  • Carcamoc10
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Mrsb04 I usually take it around 8 in the morning and wait a full 2 hours to eat, but since I’m on holiday, I set an alarm to take it at 4:30am just so I’m in the clear when I wake up later!

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Need Advice Please :( 1 week 6 days ago #66683

  • Lman
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Caracamoc
You mentioned 10k as a safe area . Same here :)
Just imagine how beautiful world would be if we eventually reach +10k off any treatments , for a life time !

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Need Advice Please :( 1 week 6 days ago #66684

  • Carcamoc10
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Lman: off medicines, definitely would be amazing although it still makes me nervous to be under 20K :( especially being on such a high dose of Promacta!!

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Need Advice Please :( 1 week 6 days ago #66689

  • mrsb04
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Carcamoc
I rarely eat post 7pm so take it very last thing at night as I get into bed.

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Need Advice Please :( 1 week 5 days ago #66690

  • Carcamoc10
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Mrsb04 I need to be like you, but I’m a late night snacker...usually I’m not hungry when I first wake up so it hasn’t been too hard to take it around 8 and wait!

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Need Advice Please :( 1 week 4 days ago #66697

  • mrsb04
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Carcamoc.
No way can I wait more than about 30 minutes after rising before I have my breakfast.
I prefer a couple of cups of tea and either cereals with milk/yogurt or toast for breakfast. All too high in calcium to have if taking tablets first thing .
I used to be an evening snacker but that meant taking Promacta at around 2am. I soon got fed up with that so gave up snacking.

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Need Advice Please :( 1 week 2 days ago #66724

  • Carcamoc10
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Mrsb04: I’m going to try switching it up to taking at bedtime! I have been wanting to start healthier eating habits anyway!

So I’m back from vacation and platelets are up to 36K. And guess what? T. Bili is slightly elevated! Just after you sent me the link to that article you came across mrsb04, what are the chances?! But I will speak to my hematologist on Thursday and get his thoughts. I am less and less convinced high dose Promacta is the solution for me. It has failed to stop my crashes and has granted me zero stability. I’m going to see what other options we have and see if maybe it would be best to move on from Promacta...wish me luck!!
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Need Advice Please :( 1 week 2 days ago #66728

  • Hal9000
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Good luck Carcamoc.
What did you think of Florida? I've been wanting to take a vacation there for awhile but haven't been able to. LOL, its not exactly on the way to anything.

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Need Advice Please :( 1 week 1 day ago #66736

  • Carcamoc10
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Hal, thanks :) and I love Florida, been there several times but admittedly never past the panhandle as we drive from Houston there with a little girl so the less we drive for beautiful beaches the better!! Destin and the surrounding areas are so gorgeous and teeming with wildlife (which is a pro or a con depending on how you feel about sea creatures lol)

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Need Advice Please :( 4 days 23 hours ago #66765

  • vrushalin
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Hi I'm newly dignosed as ITP with platelet at 5 k and gum bleeding..bloody blister..bruises..petechie on 2nd May 2019..though even after starting steroid solumedrol my count did not increase fir few day..bleeding stopped immediately and my haematologist explained that I'm producing large platelets..and even 1000 large platlets are equivalent to 5000 small platlets..so they work efficiently..I was still at below 10 automatically but haematologist counted manually at 12 k..he said large platlet may get counted as other cells hence giving incorrect reading..then slowly with 40 mg prednisolone (i would like to believe papaya leaf extract fresh juice also) counts were in normal range since 17 may.just started tapering..let's see how my count stays

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Need Advice Please :( 3 days 11 hours ago #66774

  • Carcamoc10
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Vrushalin: Hi, thanks for sharing your story! And what you explained about the platelets makes a lot of sense since not all of us have the same symptoms at low counts! I hope your platelets stay put on your taper, good luck to you!

And a quick (surprising) update from me: platelets this week are at 225K!!! Still on the 150mg Promacta and I suspect I will remain on it for now due to the counts being much much higher than they have been...especially lately. I have kind of noticed I get 2 weeks of good counts and then experience a crash on that third week, but here’s to hoping that does not happen this time!! Hope everyone is doing well :)
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Need Advice Please :( 3 days 9 hours ago #66775

  • Hal9000
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Carcamoc10 wrote: ... And a quick (surprising) update from me: platelets this week are at 225K!!! Still on the 150mg Promacta and I suspect I will remain on it for now due to the counts being much much higher than they have been...especially lately. I have kind of noticed I get 2 weeks of good counts and then experience a crash on that third week, but here’s to hoping that does not happen this time!! Hope everyone is doing well :)

Oh my gosh, I can't believe it.
Have we got two folks with 'patterns' to their counts now?
Half of 225 is over 100, shouldn't you at least be thinking about 75mg?

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Need Advice Please :( 3 days 5 hours ago #66778

  • Carcamoc10
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Hal: that sounds ideal, huh? Unfortunately, I’m known to bottom out whenever reducing the Promacta dosage...we’ve tried a couple of times to cut it back and it has been pretty bad. My hematologist has basically said we’re not really looking to do that anymore...if a dosage works for me, he will keep me on it. Unless I get dangerously high counts, in which case I’m not sure what would happen because I have never come close to having that issue. But I could ask just to see what the plan would be in case platelets keep shooting up this rapidly!!

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Need Advice Please :( 3 days 3 hours ago #66779

  • poseymint
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Just my experience with the TPO drugs Promacta and Nplate, if you reduce the dose by half that does not mean the counts will reduce by half. Its not that logical. As your doctor knows, It could mean counts would crash- that has happened to me also. My counts have crashed when my Nplate dose was much higher than it is now. I am at 408 Nplate and counts are around 30-50K. I've been on the same dose for nearly 2 years. But when my dose was between 458 and 495mcg Nplate, my counts crashed to 3K. The nurses/doctor kept changing my dose and thats what made my counts crash. I believe keeping the dose stable is the secret to having good counts on the TPOs.

That said, you are on a very high dose, and blood clots happen more frequently when counts are over 100. (I read that somewhere) So just to be aware of that.
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Need Advice Please :( 3 days 1 hour ago #66780

  • Hal9000
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After thinking about it for awhile, I think I figured out what happened.

If one needs more platelets, they can be found at the aura of Florida beaches.

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Need Advice Please :( 2 days 8 hours ago #66790

  • mrsb04
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Carcamoc
I would be terrified of a count that high to be honest. As your counts tend to plummet I feel Hal's suggestion of reducing your Promacta dose by 50% is too drastic. A gentle taper would be more appropriate.

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Need Advice Please :( 2 days 5 hours ago #66791

  • Carcamoc10
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Mrsb04 yeah, I think the only reason I’m not freaking out about it is I just don’t believe I will stay there. Everything that has happened since I have been monitoring my counts suggest I will go back down, my only concern is I hope not by too much! I was told today if I go up considerably again in next week’s labs, we will reassess the situation with the hemo who suggested the 150mg dosage! In that case, they may try a gentle taper as you say!
By the way, I’ve never mentioned anything but I love your profile picture!! If that’s your cat, it is adorable!! :)

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Need Advice Please :( 2 days 5 hours ago #66792

  • karenr
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I thought "normal" was between 140 and 400K--so wouldn't 225K be safe?

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Need Advice Please :( 1 day 22 hours ago #66795

  • mrsb04
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Carcamoc
Yes he's mine. He's a very old boy now just had his 17th birthday.
Karen
The point of TPOs is to raise counts to a safe, not normal, level. Over here in the UK if count goes above 150 dose is lowered.
Newly produced platelets are big and sticky increasing the risk of clots.
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