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Crashed with Promacta

amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

11 years 7 months ago #41914 by amberyard

Replied by amberyard on topic Crashed with Promacta

Thisnweek counts 41k and no change of medications. Re check next week and hoping for taper of pred. I will take 41k!!

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Winnifred
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11 years 7 months ago #41939 by Winnifred

Replied by Winnifred on topic Crashed with Promacta

Oh yippies! 41 is a good number to have! here's hoping they stay!

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DeeDee Marie
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11 years 7 months ago #41951 by DeeDee Marie

Replied by DeeDee Marie on topic Crashed with Promacta

Amber, I agree with Winnifred! 41 is a good number!! Hope you are doing well today.

Dee Dee

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

11 years 7 months ago #41997 by amberyard

Replied by amberyard on topic Crashed with Promacta

This week 49k, dropped Pred too 40mg and adding Lasix (for the water retention). The only change in the last two weeks was I changed the time I take my stomach medication. I now take it at 6pm after all other medications but 6 hours before Promacta.

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Winnifred
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11 years 7 months ago #42010 by Winnifred

Replied by Winnifred on topic Crashed with Promacta

49 I'm liking the numbers! Sounds like things may just be settling for a bit! Here's hoping to continued success!

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

11 years 7 months ago #42118 by amberyard

Replied by amberyard on topic Crashed with Promacta

55k this week and I Ak dealny with an URI..... GO PLATELETS!!!!

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luca
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11 years 7 months ago #42132 by luca

Replied by luca on topic Crashed with Promacta

Hi gang; haven't been online in months but just read this thread. Slammed, I seem to follow your patterns as my 50 mg of Promacta seems to be losing efficacy; I've gone from 75K in December to 21K now, with a steady downward count each month. I'm back on weekly checks, and will probably be looking at a dose increase if I drop back into the teens. Amberyard, you are such a trooper! You seem to roll with the punches and always manage to get back to a good number, but the journey has been rough!What impresses me about this thread is that so many people are taking Prednisone WITH Promacta and are getting increased counts, even though I haven't seen anything in the literature discussing this as a typical treatment option (maybe because of all of the "headaches" with Prednisone??)Anyway, I never had any luck with Prednisone helping my numbers, which is why I opted for Promacta in the first place.Just wanted to thank you all for this thread, and for helping each other deal with the crazy ups and downs that seem to be the hallmark of this disease!!!

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Vdeutsch85
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11 years 7 months ago #42133 by Vdeutsch85

Replied by Vdeutsch85 on topic Crashed with Promacta

Luca,

My doc at Cleveland clinic did some research and found some small studies on a TPO paired with an immunosupressant. I do not respond to prednisone either. He tried me on cyclosporine and Nplate. We found that I respond to high dose Nplate without cyclosporine. Sorry for jabbering. But basically research or have your doc look up TPO paired with immunosupressants. My doc said if I stop responding to Promacta he would try another immunosupressant with it. I know Dbean on here has had success with cyclosporine a and Promacta together.

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Slammed
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11 years 7 months ago #42140 by Slammed

Replied by Slammed on topic Crashed with Promacta

Since my crashed with 12.5mg...I was put on prednisone (60mg), tried 25mg Promacta, counts went up, but went down again when trying to taper off prednisone, so I was put on 50mg Promacta...with 50mg Promacta, no prednisone, my counts went to 442k. I went on vacation, my dr told me to keep it at 50mg Promacta. After I got back, I took 25mg and 50mg of Promacta every other day, last time I got labs, my counts is at 237mg, so now I'm at 25mg Promacta everyday and see what happens.

Hang in there everyone...I've been on Promacta for over a year and still trying to find stability...there's still many ups and downs, and labs is still nerve wrecking like many years ago.

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

11 years 7 months ago #42156 by amberyard

Replied by amberyard on topic Crashed with Promacta

I try to be a trooper, it is really hard sometimes!! I'm on Pred 35mg at the moment and I feel like a whale still, doc put me on Lasix 20mg in the morning. I've gain 50+ pounds since all this started 2012. I can't even look in the mirror anymore and refuse to get new clothes. I've been wearing my husbands stuff and sticking to my work scrubs. This is more mental straining than anything and trying to stay positive is very hard.

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DeeDee Marie
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11 years 7 months ago #42158 by DeeDee Marie

Replied by DeeDee Marie on topic Crashed with Promacta

Sometimes we just have to take it one day at a time. Amber, I think once you can get your platelets stable, you'll be able to get some of the weight off. It's hard to do everything at once. Just try to hang in there!

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

11 years 6 months ago #42219 by amberyard

Replied by amberyard on topic Crashed with Promacta

107k YES! I am doing the big butt dance (pred weight). Going down from 35mg to 30mg re count next week. Also going to split my Lasix in half for am then noon to help more through the day. Still dealing with a little cold so still on OTC meds for that. Feeling good and may have a big girl drink tomorrow but the last time I smelled one I gagged (so maybe not).

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DeeDee Marie
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11 years 6 months ago #42221 by DeeDee Marie

Replied by DeeDee Marie on topic Crashed with Promacta

Amber,

That is wonderful!! Finally, making some progress!! I'll keep saying some prayers that those platelets stay up!

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

11 years 6 months ago #42366 by amberyard

Replied by amberyard on topic Crashed with Promacta

73k this week not changing dose of pred so another week of 30mg. The only thing that was different was margarita's on the 4th.

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DeeDee Marie
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11 years 6 months ago #42416 by DeeDee Marie

Replied by DeeDee Marie on topic Crashed with Promacta

Hi Amber,

I've been away at the PDSA conference the last couple of days. It's interesting meeting a lot of people with ITP and listening to the doctor's presentations. A lot of us have the same problems or similar (I live about one-hour drive from their hotel).

It seems like you are starting to settle down with your ITP!! Your platelets are staying up higher--which is a good thing! And one margarita on the 4th shouldn't really hurt you. At the conference during their dinner, all the people at my table were drinking wine!! (except for me).

Good luck with those platelets!
Dee Dee

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luca
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11 years 6 months ago #42424 by luca

Replied by luca on topic Crashed with Promacta

Way to go Amber! Wish we knew more about why the counts fluctuate so much!? After 3 weeks in the 20's, my count unexpectedly jumped to 47K on the same dose of Promacta (50mg)! I'm now wondering if my diet or eating behavior is making a big difference; I take my pills late at night 2-4 hours after eating (depending if I had dairy or not) but maybe that still isn't enough, especially with the cheese warnings?' I don't see any other modifiers in the literature, but then there are a lot of variables affecting platelet longevity in this disease. Anyone have similar experience and/or insight into when to take the pills?

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

11 years 6 months ago #42534 by amberyard

Replied by amberyard on topic Crashed with Promacta

Well did a little experiment over 4th. Wednesday before hand 107k, had a couple of margarita's when grilling. Then on Sunday hand a couple of beers chilling and watching movies. That Wednesday after the 4th went and got CBC 73k. Well this week no alcohol, no change in medication (was the same as before) came back 86k. I know it takes 7 (?) days to make a platelet, so I didn't have time to make them all back. So looks like no alcohol which I fine, don't need the empty calories anyways.

pred 30mg, promacta 75mg, birth control, iron, vitamin C, B-12, Lasix, ranitidine 300mg and Zyrtec. i thi k thats is it, all pills and i start at 6:30am and end at midnight (good thing i have an alarm on my phone. lol).

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Ann
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11 years 6 months ago #42546 by Ann

Replied by Ann on topic Crashed with Promacta

It doesn't take 7 days to make a platelet. They are constantly being made. It won't be the drinks affecting the count. You are looking for causes that aren't there.

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weirdjack

11 years 6 months ago #42588 by weirdjack

Replied by weirdjack on topic Crashed with Promacta

In 12 years of ITP I have never had a change in counts due to alcohol. It just doesn't affect them.
Never been told not to drink....and I've asked several times to make sure.

Note: It doesn't take 7 days to make a platelet. Something like '10 to the 11th power' (a whole hell of a lot!) of platelets are produced daily in the average adult. That number may vary depending upon the article one reads.
Now, the average 'lifespan' of a circulating platelet is around 8-12 days (again; depending upon which article one is looking at).
Perhaps that is what you are thinking of?

.

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DeeDee Marie
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11 years 6 months ago #42616 by DeeDee Marie

Replied by DeeDee Marie on topic Crashed with Promacta

Amber,

Remember, everyone is different and what affects one person may not affect you. When I attended the conference, they did mention alcohol should be in moderation (I think that would be only one drink?). I don't drink at all, so I wouldn't know. It sure won't hurt you to cut back a little. It sounds like you were drinking a lot during that one day trial.

Also, when it came to dinner, I was the only person who did not have a glass of wine!

Good luck to you and your platelets!

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alisonp
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11 years 6 months ago #42620 by alisonp

Replied by alisonp on topic Crashed with Promacta

I asked Dougie's dr about alcohol (he's getting to that sort of age

). He said that he wouldn't recommend it only because drunk people tend to have more accidents which wasn't a great idea for someone with ITP. He said that alcohol didn't actually affect counts.

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

11 years 6 months ago #42677 by amberyard

Replied by amberyard on topic Crashed with Promacta

Well I like to drink when I did drink and think for me it would just be better to stay away for it. But once in awhile as long as numbers are up a will enjoy it then. I do feel a lot better since I have not had any.

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DeeDee Marie
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11 years 6 months ago #42688 by DeeDee Marie

Replied by DeeDee Marie on topic Crashed with Promacta

Amber,
That sounds like a very healthy attitude!! I agree with you all the way!

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

11 years 6 months ago #42700 by amberyard

Replied by amberyard on topic Crashed with Promacta

Counts came back 61k down from 86k

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DeeDee Marie
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11 years 6 months ago #42704 by DeeDee Marie

Replied by DeeDee Marie on topic Crashed with Promacta

Amber, that's still a good count. And, are you still on Promacta?

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amberyard
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Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC

11 years 6 months ago #42705 by amberyard

Replied by amberyard on topic Crashed with Promacta

Promacta 75mg and pred 30mg

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weirdjack

11 years 6 months ago #42707 by weirdjack

Replied by weirdjack on topic Crashed with Promacta

He said that he wouldn't recommend it only because drunk people tend to have more accidents which wasn't a great idea for someone with ITP.

We all do realize that people can have a drink or two without becoming 'drunk people', right?

.

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DeeDee Marie
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11 years 6 months ago #42721 by DeeDee Marie

Replied by DeeDee Marie on topic Crashed with Promacta

Jack,
When I was at the Conference a couple of weeks ago, most everyone was having a glass of wine or two. It was free and served at every table. The doctors said that a social drink once in a while was okay. I've just never been a person to drink as it actually doesn't do anything for me.

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luca
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11 years 6 months ago #42740 by luca

Replied by luca on topic Crashed with Promacta

Back on topic; my count was 12K this week, the worse count ever since I was diagnosed with ITP! AS I am on 50 mg Promacta, it amazes me that this drug does wonders sometimes, then appears to "crash" at other times. My doc has upped me to 75 mg so we'll see what happens. One of the docs tells me that this pattern is not unusual with Promacta...I'm not sure that helps any!!

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Slammed
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11 years 6 months ago #42741 by Slammed

Replied by Slammed on topic Crashed with Promacta

Luca,

It will be ok. You know I went through this crash and I went from 12.5mg to 25mg (with steroids) to 50mg...then my count jumped, went off steriods, and then did 50mg, 25mg every other day. Since early June, I've been on 25mg with counts in the 200's.

It will just take time to rebound back..maybe you night have to even increase to 100mg, and slowly go back to 50mg. I know it's makes us panic wondering if Promacta stopped working or why our counts just dropped...in my case, we believe it's related to my iron level. After I got my weekly IV iron, things took a turn.

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Crashed with Promacta

You’re not alone. We have answers! Contact PDSA to connect with life altering information, resources and referrals. 440.746.9003 (877.528.3538 toll-free) or PDSA@PDSA.org.