My Promacta Journey

momto3boys

Thank you also. I am glad to see that your count is good.

I have been on promacta for 4 years everything is great. Before I started the promacta I was given Ivig first to bring platelet count up. Because promacta will not raise your platelets. I take 75 mg a day. I have had ITP for 25 years took steroids and Ivig to no avail promacta seems to be heaven sent. While on steroids I did get cataracts which did get worse while taking promacta. Had surgery everything is great now. I hope this info will help anyone who reads this. Oh yeah one other side effect which Dr says no way. I used to have curly hair now I dont

Promacta does raise platelet count

Yes, Promacta does raise counts by causing the bone marrow to produce more platelets.

It's possible that hormonal changes caused the change in hair texture.

hi Nancy- Good Promacta is working for you! And always interesting to hear from someone who has been on TPOs for a while. How are your counts?

My hair has been very straight my whole life. For the past 2 years it has become a bit of wavey- nice! I thought it was from prednisone. I lost a lot of hair while on pred and it seemed to grow back with a slight curl. I believe prednisone can change hormones? so maybe that. I've also been on Nplate for 2years and Promacta for a couple months here and there. Here is a non-scientific article talking about hair changes as we age.

www.agingbodies.com/2014/10/why-does-hair-curl-with-age/

Plt Count 3/30/2016 71,000 Current Promacta dosage 25mg

So my platelets are fabulous and seem to be creeping upwards on the drug. Perhaps a dosage decrease is in my future. My iron, however, seems to be worsening. My hematologist says that anemia can be a side effect of the Promacta (I haven't had a chance to research if this is true or not, there is of course a ton about aplastic anemia (one of the conditions treated with eltrombopag), but I haven't had a chance to hunt out information about anemia exacerbated by the drug.)

We discussed IV iron, which I'm not keen on because I believe it is something like 10 infusions from what she said. For the moment I'm just bumping up my OTC iron pills (Vitron C) to 3x daily. If the platelets continue to creep up at my next count in 2 weeks (I get to skip a week!) then we will decrease the promacta to 12.5mg and see if that helps any with the anemia.

Just a little blip on the way. I'd love to get it resolved for some energy though. Huffing and puffing after climbing up stairs isn't ideal But it sure beats bleeds and transfusions, so that's okay

We're going to get you ironed out yet! (Pun intended). You're getting there. I hope the oral iron works. Have you had your ferritin tested?

I have been on 75mg of promacta for 3months now but my platelets struggle to get to 10. Three years ago I got up to 150 on promacta but alas no longer. However, after being quite anaemic and neutropenic at Xmas time both my red and white cell counts are nearly normal again thanks to the eltrombopag. It has been found to stimulate bone marrow function in those with under productive bone marrow. I showed up with this on a recent biopsy so I am really glad that the promacta is at least supporting my bone marrow function and keeping me just the right side of safety with regard to bleeding.I don't therefore think that the eltrombopag is causing your anaemia, but who knows as we are all so different. Try eating more red meat and greens: they are just as good as iron pills and a lot gentler on the body. It seems that I have a really strong platelet destruction problem and Rituxan has had no effect.

Plt Count 4/13/2016 69,000 Promacta dosage 25mg
Plt Count 4/27/2016 80,000 Promacta dosage 25mg

So the counts are great, and I've been doing biweekly counts (it feels like FOREVER between counts when you are used to weekly, lol!). The iron is still not so hot and my iron studies showed up with results of a ferritin just below 8 one month ago, and right about at 8 two weeks ago. I have to go research what that even indicates, but I'm really becoming disenchanted with the Vitron C pills 3xdaily. Intestinal upheavals, ugh! I also try to eat plenty of red meat, spinach, etc. and even cook things in cast iron pans. Time to do my due diligence with regards to anemia treatments.

Certainly I'm happy with how things are going, and the iron issues are just a minor annoyance when compared with transfusions and horrific bleeds . I'm going to look into the iron infusions my doctor is throwing out as an option and see what those involve and how helpful they might be. It's apparently 10 IV infusions of iron to try to get things back at a better level. I've been so busy with medical issues (not mine for once! minor surgeries in the family) that I haven't had a chance to research anything about the iron stuff. But I figured I'd at least pop in and give my belated update. Onwards and upwards. I am just itching to drop the Promacta to 12.5mg, but I think I have to have counts higher more consistently to earn a dosage decrease. We'll see.

Hope you all are well!

momto3boys, If you need to reduce the Promacta dosage the best way is very slowly. I would change to 12.5 mg on one dose per week, then if the next count is ok, change to 12.5 mg for two doses each week, then three doses, etc. On biweekly counts this would take three months to drop completely to 12.5 mg every day, but avoids wild swings in platelet counts. More likely, you might end up with something like alternating days of 25/12.5/25/12.5.... which you would reach in just 6 weeks, without overshooting.

Thanks for the suggestion Rob. I recall seeing Emily doing something with alternating days of certain dosages. That sounds like a much smarter plan for decrease than dropping immediately to 12.5 daily. 80K is creeping a little bit high, so maybe I can talk my doctor into doing one day a week of 12.5 the next time I go in. I like that idea, thanks!

Yes i dropped dosage really slowly. This week I drop to 12.5 once a week. The doctor was ready to just stop, but I opted for once a week. I was at 60,000 for the last two weeks. Good luck.

It's been a while since I updated here, mainly because I was playing hooky from getting my CBCs while I was doing my 10 IV iron infusions. I completed the iron treatment and will be getting the updated iron studies done later this week. Hopefully it will help with the anemia for the immediate future.

Plt Count 6/17/2016 25,000 Promacta dosage 25mg

I had a nifty (not!) subconjunctival hemorrhage that gave me the clue that my counts were not happy. I'd never had one of those before, so a unique new indicator of low counts for me. Maybe a random coincidence or maybe the promacta has changed how I manifest symptoms somewhat. Also having random quick forming purple-blue bruises that I get when my counts tank, so not surprised at the number.

Regardless, I've been fasting for Ramadan which means that I haven't been able to give my promacta it's usual "4 hours of no food on either side" buffer zone. I eat at 8:40 PM, then no food until around 12:00 AM when I take my pill, then no food until 3:30 AM when I eat my meal before the fast.

That's pretty extreme (usually I snack a lot more during this month at night) and obviously my body doesn't like these changes. Way fewer calories than normal, change in sleep schedule, etc. Got in some good weight loss though! :laugh:

I haven't talked to my doctor, but I'm assuming that we'll be going up to 50mg promacta. I increased my dose for the moment (hope to talk to the doctor on Monday and have another count scheduled for Thursday). I'll be skipping the next few fasts to try to give my promacta the full empty stomach experience and go forward from there.

Things were hanging out around 50,000 prior to this blip, so I'm hopeful that things will normalize when my schedule does.

Just a quick update since I've been MIA.

Thanks for checking in. Hope things turn back to better!

Well, 6 weeks without any promacta or other drugs and I am holding between 40-50000! Fingers crossed it continues.

Brilliant news Emily.

EmilyK wrote: Well, 6 weeks without any promacta or other drugs and I am holding between 40-50000! Fingers crossed it continues.

Oh bravo Emily! That is fabulous news! I hope I get to be you some day in the future :laugh:

And I should probably update my thread with my latest count. I've been such a slacker during the holidays!

Plt Count 6/30/2016 69,000 Promacta dosage 50mg

So I visited my doctor and things have improved since my little fasting blip downwards. Being back on 50mg is definitely causing it to bump right up again, thankfully. We are going to inch back down towards a dosage of 25mg a day by my doing an alternating mix of 50mg and 25mg doses. (Every 3rd day, then every 2nd day, etc.)

I'm back doing counts every other week for the duration and will do my best to update with my numbers here.

Good news from both of you, Emily and Mom!

Well, it's been an awfully long time since I've updated here! So much for keeping track of all of my counts on my thread, lol. My excuse is that my oldest just started 9th grade and we homeschool. So things have been crazy.

Anyway, a vague summary, I had gone up to 50mg when I last updated I believe, but over several months I wasn't getting the "slow rise" that I had seen initially. At some point my count ended up in the 20s for a few consecutive checks and my doctor wanted me to go back up to 75mg daily as I had done in the beginning to get a response. I bumped up the dose and then got a count of 100k. A nice response to the 75mg initially. We ended up doing 75mg interspersed with 2-3 days a week with 50mg after that higher count.

So, today
11/2/2016 plt 34,000 dosage 75mg 4 days a week and 50mg 3 days a week

I haven't felt ill, but who knows why it's back down at the low end today. Nothing unsafe, but it's annoying that I'm at these relatively high doses and not getting the response that I had previously. Phooey. I'm pretty sure we're going to work our way back up to 75mg if we get another low count. Low 30s just isn't enough to manage the monthly bleed in a sustainable fashion. Iron levels have been somewhat better since my infusion and my extreme diligence in taking my iron supplements correctly (No eggs, coffee, calcium, etc. etc. 2 hours before and 2 hours after taking the iron).

I guess it's a good thing I got some dental work done back when I was having that blip of high counts

I have tons of old posts to catch up on, hope you are all well!

I went in for labs today, so here is an update:

11/23/16 plt 61,000
dosage 75mg Promacta (daily)

I had been dealing with a virus last week, so I was quite pleasantly surprised that my count didn't tank!
I will continue at 75mg daily and check the numbers again in 2 weeks. If they rise significantly, I'll go back to 75mg all days except 1 day on 50mg.

Too bad you need such a high dose to get your target. I'm glad it's working though.

LOL, how about a crazy idea. It seems that folks that don't need a lot of Promacta on here are active runners/joggers. Have to wonder if this stimulates the bone / bone marrow and thus megakaryocytes and platelet production.

Perhaps regular walking might help similarly?

No crazier than some of my ideas!

Hal9000 wrote: LOL, how about a crazy idea. It seems that folks that don't need a lot of Promacta on here are active runners/joggers. Have to wonder if this stimulates the bone / bone marrow and thus megakaryocytes and platelet production.

Perhaps regular walking might help similarly?

Lol, it's very funny that you mention this. I had begun a running program (couch to 5k) about 6 months ago along with eating more whole/clean foods.

Time will tell if I'm able to decrease the dosage more, but I'm definitely all in with the exercise and healthy eating. I'm even cutting back on gluten and refined carbohydrates for good measure. I'm not quite ready to eat the "autoimmune paleo" diet yet, but I'm definitely doing better in the nutrition department. It surely can't hurt. I'll update you guys after I run my first half-marathon (hahah, not near that yet, but we'll see!)

Oh, wow. Six months is a good amount of time. Certainly hope you can get back to 50 mg !

Got another count update. Things are creeping up over here, woot! Looks like I'm going to inch down slowly from my 75mg daily to 75mg 6 days and 50mg 1 day.

12/7/16 plt 84,000
dosage 75mg Promacta daily

I'm happy that I can finally start inching my way downward with the dosage! Promacta still working for me

Nice. Still holding same running/exercise level?

A 75 count would be half way between 50 and 100 count. Sounds like 3 days at 75 and 4 at 50 at this particular point...

Lol, Hal, if only counts behaved in such a way that math would apply! As many people on these forums on various medications can attest, making larger changes can lead to sudden drops. I'm not really in the danger zone, so dropping down one day is the least invasive way to start the titration. If my numbers are still good at my next count, then I'll drop down another day, and so on. I don't want to trigger a crash down

And, yes, I'm hanging about the same on the fitness and eating front. Go me!

Ok. Well if the count is 100 next week, I told you so :laugh:


...as if 100 was that bad

Count update!
12/20/16 plt 94,000
dosage 75mg Promacta 6xweek 50mg 1xweek

Count is still getting a bit too high so I'm going to decrease the dosage to 75mg Promacta 4xweek and 50mg Promacta 3xweek

If it keeps going up at next check (in 2 weeks) I'll do more days at 50mg. Hopefully can get all the way down to 50 from 75. Despite the high counts, I had a horrible cycle this month (Promacta has bizarre effects on my clotting and the nature of my bleeds, as an interesting aside) so I'm running a bit anemic again. But overall good news