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TOPIC: My Promacta Journey

My Promacta Journey 3 years 4 months ago #52932

  • momto3boys
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Howdy all,

It was a busy few weeks here digging out from our massive amounts of snow. (We got a little over 2 feet which is not usual for our area!)

I missed one of my lab appointments because of the road conditions but yesterday my counts were at 29K. Not too bad, but not good enough to control my monthly bleeds, so on to the Promacta I go. I had to jump through hoops and work with a specialty pharmacy, but they shipped it to me directly, so that was kinda cool.

I took my first pill in the middle of the night last night, and we'll see how this goes. Feeling a bit of nausea this evening, which I understand is normal in the beginning. I'm off to read old threads about nausea and Promacta and read what's been happening around here the last two or three weeks.

I'll have to keep this thread and update it as I go along with my treatment. I found it the most helpful to read the stories of others when researching my treatment, so I'll add some random data points of my own :)

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My Promacta Journey 3 years 4 months ago #52936

  • Sandi
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Good luck! Thanks for checking in and be sure to give us updates!
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My Promacta Journey 3 years 4 months ago #52941

  • TerriC14
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Good luck. When my daughter started on Promacta and was on the 50mg dose she had some nausea and decreased appetite (she was be hungry and want to eat but as soon as she saw the food it was a turn off). She also felt remarkably better in general (fatigue was one of her major issues with low counts) so in between the increased activity and decrease appetite she did lose weight initially. She is a chunky girl though and to be honest she looked great. The issues all subsided - her dose was decreased to 25mg in about 3 weeks so I am not sure if it was the decrease in the dose or just the time. She feels so much better now than she did before she started on Promacta!
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My Promacta Journey 3 years 4 months ago #52942

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Thanks for sharing her experience Terri. I still have the moon face from the prednisone and was trying to lose some weight before starting Promacta, so I will totally take the nausea over the constant hunger on steroids!

I'm so happy to hear that she had increased energy and was able to decrease her dosage over time. I'm excited to see how this goes for me, it really can't be worse than steroids :)

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My Promacta Journey 3 years 4 months ago #52963

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This week's count update.

I've been on Promacta 50mg for the last 6 days and today I was at 39K. Probably too early to have much of an effect from the new medication, but that is a slight bump up from last week (29K).

Nausea was really very slight initially and I only have very short periods of mild nausea infrequently. A few times I had a vague "feverish"/"sicky" feeling, but really not much else to report as far as side effects go.

Taking the medicine in the middle of the night is really easy. I usually wake up between 1 and 2 so I just take it then. I have an alarm set for 2:30AM in the event that I don't wake up before that, but haven't needed to have the alarm go off yet!

I will update again next week after those labs. I actually went one day early this week because we are expecting snow overnight and I didn't want to deal with any traffic issues.
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My Promacta Journey 3 years 3 months ago #53039

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Count for 2/16/16 is 21,000 (Taking 50mg for two weeks)

Well phooey. This is after a bit more than two full weeks on Promacta 50mg. No noticeable increases yet. We are going to try 75mg now to see if we can get a response of some sort, so I'll start that in two days or so when my specialty pharmacy gets the new 25mg pills to me. I'm going to combine a 50 with a 25 for now, and my doctor really hopes that I can go down from that dose if I can show some kind of a response.

I'm going to be patient a few weeks more, but if I continue on with low numbers I guess it's back to the drawing board. My monthly cycle is missing in action (that never happens, other than with my three kids of course), but I'm having negative pregnancy tests so it seems like my body is completely out of whack. My HGB is much better though, so I guess I'll look at this missed bleed as a plus for now until proven otherwise. Can't find any data about promacta interfering with menstruation, so probably unrelated. My hematologist did discuss a platelet transfusion as a measure to take if my counts drop further while we wait for some kind of a response to the Promacta.

I'm going on a one week trip on Friday, so my next check in will be almost two weeks from now. I'm hoping for some upward platelet action (but not too much :) between now and then.

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My Promacta Journey 3 years 3 months ago #53040

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Everything I have read says that the effect of platelet transfusion is extremely brief in ITP patients: your immune system will destroy the foreign platelets even faster than it destroys your own. AND, transfusion can further sensitize your immune system, leaving you worse off than before the trasfusion. Transfusions should be reserved for dire emergencies.

www.merckmanuals.com/professional/hematology-and-oncology/thrombocytopenia-and-platelet-dysfunction/immune-thrombocytopenia-(itp)
"Platelet transfusion is given only for life-threatening bleeding."

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My Promacta Journey 3 years 3 months ago #53041

  • Melinda
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Mom there was a man in town here in our group of ITPers who met periodically (unfortunately we haven't done so in years) and his count never got much above 5k. Not saying this to depress you but to let you know he led a full life and with their children grown he/wife adopted a little girl.

Regarding a platelet transfusion I don't know if those platelets are destroyed any quicker than our own platelets but those platelets do get tagged by our bodies for destruction once they enter our system just as our own platelets do.

Enjoy your trip and my fingers are crossed your next CBC shows an increase in count!!

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My Promacta Journey 3 years 3 months ago #53042

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Thanks for the feedback folks!

Rob, I had also thought that platelet transfusions were more of a "rescue" type therapy but hadn't had a chance to look into it more. Ramping up my already crazy immune system is probably not a good idea. I feel like I've read that IVIg can also have that "kicking it up a notch" effect on the immune system to speed up the platelet eating.

Melinda, thanks for that story. If I were a man (or a postmenopausal woman for that matter) I'd be totally psyched with 21K as a happy hang out number. Sadly my body seems to need at least 40ish from what I'm seeing to stop a monthly bleed for me. Arrgghhh... and my cycle was missing for the last 20 days or so, but of course it's had to make an appearance this afternoon now that I have 21K platelets instead of last week's 39K. Isn't that always the way? lol. I'm just going to blithely go to Florida with the family and deal with an out of control bleed if it happens, and cross my fingers that promacta does at least something between now and too much blood loss!

I also want to read about promacta plus prednisone. I know I've read plenty of threads here with people using them together (right? gotta go reread in the older threads). I've always used the steroid (in small pulse type doses) to "pop" up my counts enough to get bleeding to stop when necessary. Anyone know if that's a terrible idea to try together with promacta? I wonder why my hematologist was talking about going down the platelet transfusion route instead of the good 'ol steroid route for a quick boost. Hmmm...

As always, thanks for all the input!

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My Promacta Journey 3 years 3 months ago #53044

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momto3boys, my wife Ellen developed very heavy periods several years ago while on estrogen. Her gynecologist had Ellen scheduled for a d&c, but instead Ellen dropped the estrogen and started natural progesterone cream, and all returned to normal. Then she got a new gynecologist! You might consider progesterone cream, or one of the progestin-only BCPs.

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My Promacta Journey 3 years 3 months ago #53045

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Thanks for the tip Rob. I don't have anything causing the bad bleeds other than the low counts, but I'm going to consider the progesterone for another management idea after my current promacta experiment. This may pan out for a longer term, but if it doesn't I'm going to add managing the cycle as something preferable to stuff like Danazol and Cyclosporin A etc. I may also be up for a go of Rituxin to buy some time (potentially), but for now I'm on the TPO train and will worry about those other choices if the need arises. :)

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My Promacta Journey 3 years 3 months ago #53111

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Hi momto3boys.... When I tapered off high doses of prednisone it threw my hormones completely off balance and I ended up skipping a cycle or two (and was so sick at the time I barely noticed). When it kicked into gear again (and my platelets were in single digits) I couldn't leave the house because it was so heavy. I ended up having to go on the pill to regulate it for a couple months until I recovered more from the prednisone taper.

As a side note, I tried Rituxan too and it had no impact. I've been on Promacta for the past 5 months and while it took a while to get the dosage to the right place -- I've had counts in the 50's pretty steady for the past two months. After almost a year of trying other treatments that I didn't respond to... It is amazing to resume some normalcy. Wishing you the best!
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My Promacta Journey 3 years 3 months ago #53208

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Hi Essemess,

Thanks for your input. Looks like it was most likely a delayed effect from my little Prednisone adventure a while back. Hadn't taken that much steroid in forever, so it definitely seems to have thrown things out of whack. I'm pretty excited that my monthly bleed was shockingly short this time around (like 7 days versus 10+ haha, it's all relative), and I had just been bumped up to 75mg promacta, so here's hoping! My next counts will be next week when I get back home from Florida and it's looking like I've got to be having some effect from this. I'm so glad to hear that it's working well for you, all this nice anecdotal evidence gives me more hope :)

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My Promacta Journey 3 years 3 months ago #53234

  • Sandi
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Well that's good news! Have a good vacation!

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My Promacta Journey 3 years 3 months ago #53312

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Plt Count 3/1/2016 163,000 after 2 weeks on 75mg Promacta

Yowza, it's working! it's working! I have no spleen and it still seems to be working! I was ready for dismal numbers and the doom and gloom of having to opt for other treatment, but it seems that I had a response a little slower than the often quoted "2 weeks." Of course that count is way too high and I'm ready to backpedal down to 50mg and see what we get next week, but any sign of this working for me after my last dismal labs is good news :) Now I just have to convince myself that every twinge is not some menacing clot in my system out to harm me :lol: I certainly can't recall the last time I had too many platelets!

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My Promacta Journey 3 years 3 months ago #53318

  • Sandi
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I know the feeling. I have a clotting risk and my counts are always in the mid 300's. I'd love to go much lower if I could. I do take daily aspirin, but have to stop it now for a surgery and I don't like it one bit.

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My Promacta Journey 3 years 3 months ago #53443

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Plt Count 3/9/2016 181,000 after decreasing to 50mg from 75mg Promacta last week.

So, still too high, though it's hard to know how long last week's dosage modification will take to show an effect on the count results (probably a few weeks and I'm still just seeing the effects of my weeks on 75mg). My hematologist was fine staying at 50mg for another week, but I asked to go down to 25mg for now. I want to see a downturn in the numbers and am worried about clots (no spleen, clots are terrifying!). I would much rather overcompensate and go too low then slowly bump up than just hang out above 150,000 waiting for a drop. Less medicine is always better!

It's strange to have these counts after Promacta took almost 4 weeks to kick in at the beginning! Back with an update next week. Good luck everyone.

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My Promacta Journey 3 years 3 months ago #53444

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The best thing to do is go up or down gradually, if possible. Spikes or fast drops can be the biggest problems. Good luck!

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My Promacta Journey 3 years 2 months ago #53567

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Plt Count 3/16/2016 49,000 Current dosage 25mg Promacta for the last week.

Yahoo! I'm so happy that I'm at the sweet spot count for Promacta. Not too high, not too low, but just right. I'm going to stay at 25mg for the foreseeable future and hope that it stabilizes there for a while. I came down rather quickly (probably too quickly) from the higher doses, but having more than 150,000 platelets was scary!

We'll see what next week holds, but I'm pretty excited about this week's numbers. Even if things overcorrect and go a bit low for a few weeks I'm going to hang out at 25mg to see if I can get some kind of a stasis vaguely near 50,000.

Side effects: after having been on Promacta for a few months, pretty much nothing. Sometimes (maybe every fourth or fifth day) I get a very mild bit of nausea in the evenings, but that's it! Will update after labs next week.

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My Promacta Journey 3 years 2 months ago #53569

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Great counts! Perfect, but yes, it will take a while to see if you are stable on that dose. I'm glad that you have no side effects. How is your bleeding at those counts?

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My Promacta Journey 3 years 2 months ago #53588

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We'll find out next month. I managed to sneak in a monthly cycle (as if I have any control, lol) while my counts were above 150,000 so I'm good for the moment. My hemoglobin is still not so hot from previous bleeds (hovering around 10-10.5), so I'm supplementing with more iron for the moment.

Hope your plastic bag shower acrobatics have decreased and that you are feeling a little better! Thanks for continuing to hang out with us while you recover :)

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My Promacta Journey 3 years 2 months ago #53593

  • Sandi
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Ha, what else would I do?

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My Promacta Journey 3 years 2 months ago #53658

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Nice to read that promacta is working for you. As for myself this is my second time on it, the first time starting at 75 mgs my count went up to 533 after o month and it was stopped that was around November of last year. Now I have been back on it for three weeks now the doc wanted me to start at 75 again and I declined and told him I would start at 50 mgs he agreed cause my count ad went back down to 3 so far it has went to 45 last week and 40 today. He wants me to try the rutixan.
Diagnosed in Sept. 2014 with a 2 count and again in Oct. 2015 with a 2 count.

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My Promacta Journey 3 years 2 months ago #53662

  • Sandi
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Jbaze:

Your doctor isn't prescribing it properly. You shouldn't quit as soon as counts go up. If Promacta is working to keep counts between 30k to 70k, you don't need to try Rituxan.

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My Promacta Journey 3 years 2 months ago #53663

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Sandi

That's what I've been telling him. I've been on the 50 mgs for two weeks with the 100 mgs of predisone let's give it a month and then reduce my dosage. But he just keeps on insisting that I need the rutaxin.
Diagnosed in Sept. 2014 with a 2 count and again in Oct. 2015 with a 2 count.

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My Promacta Journey 3 years 2 months ago #53676

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I answered you in another thread before I saw this. You need a new doctor. You shouldn't need 100 mg's of Prednisone on top of Promacta, especially if you just started it. It can take time to work. Blood clots can be a side effect of Promacta and if your counts shoot up, you're at risk. Your counts are fine right now.

Seriously, I'd look for another doctor. You really don't need all of those treatments and all the side effects that come with it.

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My Promacta Journey 3 years 2 months ago #53689

  • mrsb04
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I totally agree with Sandi here..100mgs Pred is way too much

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My Promacta Journey 3 years 2 months ago #53714

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100mg of Prednisone! Allow me to join the chorus encouraging you to find a new hematologist. Combining that with trying Promacta sounds like he doesn't know how on earth to treat ITP or use Promacta. Good luck to you finding another doctor!

And to update my Promacta/eltrombopag stats:
Plt Count 3/23/2016 64,000 Current dosage 25mg Promacta for the last few weeks.

I'm very pleased that I didn't fall off the cliff or rocket upwards. My platelets are behaving for the moment and I'm still in the Promacta happy zone. I'm going to continue on 25mg this week and maybe they will slowly creep upwards and I can decrease the dosage more. But I'm very happy to be where I am and I'm having good ITP times nowadays. The only thing kinda bizarre is that my hormones are really wacky. Much larger gaps between monthly cycles than I've ever had before and a complete disappearance of the hormonal acne that has appeared around my mouth for the last soooo many years.

I'm really not taking anything else so I'm quite surprised (but pleased! fewer bleeds + no acne = win!) at these hormonal fluctuations. I'll have to keep watching it because I've seen nothing about any such effects of Promacta, so maybe it's totally random and unrelated. But I'm suspicious :)

Have a great week everyone!

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My Promacta Journey 3 years 2 months ago #53716

  • Sandi
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Wow! A lot of good news from you, which I am very happy to hear! :woohoo:

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My Promacta Journey 3 years 2 months ago #53718

  • jbazemore05
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Sandi

I want to thank you for that advice. So now my search begins. I will keep you posted.
Diagnosed in Sept. 2014 with a 2 count and again in Oct. 2015 with a 2 count.

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