My Promacta story so far

Hi everyone,
Just thought I'd relay my Promacta story, as it is so far, for whatever it's worth...

I've been on Promacta for about 5 months now. Started at 50mg, saw my count rise from 16 to 52. The biggest side effect I noticed was mild itching and dry skin. Mostly with my scalp. I suppose the itching could've been due to the dry skin. I suppose it's also possible they had nothing to do with Promacta, but the timing was very coincidental and I've never had dry, itching scalp before.

Unfortunately my count slowly declined over the next 6 weeks to 28. Also, the itching and dry scalp disappeared. We bumped me to 75mg. Wait another 6 weeks, count was 27. Bumped me to 100mg, wait another 6 weeks. Then things got a little interesting. The mild itch started up again. mostly on single spots here and there on my stomach. Nothing crazy. Maybe 2 spots 1 day, nothing the next, then again the day after. If I scratch them briefly once or twice, it's gone.

Anyway, after 6 weeks at 100mg, my count was 123! I haven't been that high since this all started last April. Oddly I had a single bruise on my calf and a small nose bleed that I was able to stop in just a few minutes. Perhaps from the dry weather, that was during a really cold spell here in New England.

My hema wanted me to come back in 2 months (early March). He's pretty conservative. I'm probably going to get a count in a couple of weeks just to see where I'm at, because if I start pushing 200, I'm going to drop down the dosage on my own.

A rather large part of me is hoping the sudden and inexplicable reverse in platelet count is more to do with a possible remission than the drug, but there's only one way to find out. So hopefully I'll start reducing my dosage sometime over the next month or so.

-Jay

Jay- Thanks for your story. I've been on Promacta 4 different times and have seen it do unusual things. Possible that when you eventually lower your dose the 75mg or 50mg will work to keep counts up. But of course, hopefully its a remission like you said!

For me, once 25mg did nothing. So we went to 50mg which kept my platelets around 50K. But after 6mos my numbers started creeping up to over 100. My dose was then lowered to 25mg and that kept my counts up to around 40-50. I quit after a while due to side effects. But started again the next year with 25mg and I responded right away to that lower dose.

So my point is: just because a lower dose did not work in the past, doesn't mean it could never work. I've also seen other people not respond to a dose, then after raising the dose, the counts go up and they can slowly drop back down to a lower dose. I haven't heard of the itchy scalp being a side effect, but really just about anything could be- I had some weird side effects- peeling skin, pale skin, memory issues, brain fog. Anyway, good luck!

Good to know about the lower dose! Barring remission, I'll obviously take a lower dose! I'm hopeful on that front as well, since I did initially respond to 50mg.

Hey Jay! I am just now going from 50 mg to 75 mg. I started the Promacta after over a year on prednisone (which worked at first then ceased to help,) and then unsuccessful Rituxan treatments. I also have an incredible rash/dry skin issue. Two dermatologists couldn't help. Then my primary care took a biopsy at 2 different times and still nothing. So I'm attributing it to the Promacta as well. I get CBC's weekly. When I was on the 50 mg I dropped from a high count of 193 to 169 to 136 to 90 to 69 to 53 to 35 to 19. They jumped me to 75 mg this week and I test again on Tuesday. I don't seem to have any additional side effects from the increase. Still have the occasional headache, but the finger pad pain and heel pain I had experienced earlier seem to have gone away for now. (I sometimes wonder if the side effects are from actually having platelets in my blood, since that's when I had those issues!) Except the skin stuff. That continues.

Keep us updated!

I have been on Promacta since July. My count has gone from 16, 35, 42,71,52,60, then yesterday after having the awful Flu B for 7 long awful days, my count was up to 226!!!!!!
I was like I am cured!!!!! the dr. said could be since I was so sick my body went into overdrive and got the message do not destroy platelets. She said I could split the 25 mg in half and go back in 2 weeks. I am so praying I am done with this mess, I have so much more energy today than I have since July.
It is possible to be better!!!!!

Hi Jay, Hi everyone,I
I was diagnosed in August, 2017 Promacta is my fourth attempted treatement. I have been treated with Prednisone, to which I reacted badly, Rituximab, which didn't help; NPlate, which was working but for some reason was given the choice of changing it for Promacta. I had no prior experience with being seriously ill, the learning curve has been vast and intense. NPlate took my count from 36 to 75k; Promacta to 172k by last week's count. I asked my Hematologist what was the likelihood of reaching a plateau such that I could discontinue meds. altogether someday. His response was: 1.- my count is up only because I am taking the med. The moment I discontinue, I will crash again. 2. That I would be taking it for life, and that was the end of the conversation. I cringe at the thought of depending for life on a med that is so expensive. I am currently unemployed and unemployable: Prednisone fried my brain and I am still not fully recovered. My husband's insurance -mercifully - is covering most of the medical bills, Novartis ( the maker of Promacta) has me in their financial aid program. I feel the balance is precarious, though, and worry about it all crashing. What I know from life experience is that here is where one learns the meaning of faith and prayer. I also know that breaking the isolation is often the first step away from despair, so I am thankful to have this forum available to connect to others who will understand.
Good day to everyone reading,
Marina in Houston

Marina, a lot of folks assume medical technology will stand still - as worst case scenario. If one is not in tune to what is going on, it does look that way. To answer your question, IHMO, when looking for remission the path of least risk is to wait until medical advances solve the mysteries of ITP. On the other hand, you can look at my ITP treatments table to get an idea of what immuno-suppressants have worked for others in the past.

Thank you Hal! I hear: patience and education while we wait for the next discovery.
Blessings, M

Waterbug - I hate to be the Debbie Downer but sometimes counts go way up when someone is sick, but do drop back down again. Don't make any sudden changes, just adjust things slowly. Time will tell how your counts respond. I wish you luck and am happy that your Flu is over.

Marina:
I agree that your doctor is right about your counts being up because you are taking the drug. That part is true. As far as being on it for the rest of your life....many people are eventually able to taper off of Promacta. It has caused remissions, and some people do remit on their own. He has a very pessimistic point of view. There is a chance that you could someday get off of Promacta. Just be aware that counts of 172k are way above the manufacturer's guidelines. Counts should be between 50k and 75k, ideally. If they are higher than that, the dose could be reduced.

As for working, you should be back to yourself soon. I've never heard of Prednisone causing permanent brain damage. It is a horrible drug, agreed! I had steroid-induced depression once and cried for four days straight. I also had the mood swings but unlike you, I was aware of what the drug was doing and was able to control it for the most part. You'll be okay!

A 172 is an impressive count for 25mg Marina. Was that count after 2 or more weeks on that dose? Mine was 143 at that dose. From your comments it sounds like you do not respond to steroids. That is, platelet counts didn't rise materially and wasn't of clinical use. Yes? Have you ever had IVIG? I did not respond to steroids but responded strongly to IVIG.

A count of 172 is too high and the protocol quite clearly states that you should reduce your dose.
Platelet count :Dose adjustment or response
< 50,000/µl following at least 2 weeks of therapy: -Increase daily dose by 25 mg to a maximum of 75 mg/day*.
≥ 50,000/µl to ≤ 150,000/µl:- Use lowest dose of eltrombopag and/or concomitant ITP treatment to maintain platelet counts that avoid or reduce bleeding.
> 150,000/µl to ≤ 250,000/µl:'- Decrease the daily dose by 25 mg. Wait 2 weeks to assess the effects of this and any subsequent dose adjustments
> 250,000/µl:- Stop eltrombopag; increase the frequency of platelet monitoring to twice weekly.
Once the platelet count is ≤ 100,000/µl, reinitiate therapy at a daily dose reduced by 25 mg.
* - For patients taking 25 mg eltrombopag once every other day, increase dose to 25 mg once daily.
- For patients taking 25 mg eltrombopag once daily, consideration should be given to dosing at 12.5 mg once daily or alternatively a dose of 25 mg once every other day.
Health professionals that do not follow protocols irritate me greatly. Protocols are the patient's safety net.
I'd be looking for a new Haemo if it were me.

Sandi, MrsB and Hal,
Your insights gives me pause. The 'good' hema that saw me while I was in the hospital has a super-busy practice, so he sent me back to my original doc. I guess I could call and ask for a referral. I just don't think my current doc has enough - maybe not any experience with ITP per se and seems to me evasive when I ask specific questions, i.e., 'how good has been the response of other ITP patients you've seen...' Thanks again, y'all, I will come back and report if that's ok.
Blessings, M

We would love for you to come back and report! Please do. All hematologists do not have experience with ITP and it's usually easy to tell which ones don't.

Count today was 112. Down 11 from last time, which I'm thinking is fairly insignificant. Certainly not the first time my count has gone down on Promacta. My lowest point was 27, but really, I haven't had much in the way of symptoms since I started them. A few spots of purpura here and there, and one bruise on my calf, over 5 months now. And that's true for any dosage. Sometimes I think the medical community gets too hung up on chasing a number. Maybe I'm lucky that I physically have been feeling fine since I was originally diagnosed, but that should count for something to a doctor.

Anyway, I'm still taking 100mg daily, though I did not take them the night of the superbowl. I figured no point if I'm going to be eating late into the evening, since I take it before bedtime, not in the middle of the night.

I don't see my hema until 3/8. Ultimately trying to decide if I should drop the dose for a bit. Maybe try 75mg for the 4 weeks until my next appointment and see what that does.

Opinions/suggestions welcome!

I'd be tempted to drop dose slightly and see what happens

Hey, y'all!
News:
* My platelets went down from 172 to 159 in a three week period of time. Hema said, keep taking at 25 mg x day and check again in a month. I am still tolerating Promacta pretty well and remain asymptomatic.
*I brought up the protocol issue with the Nurse Practicioner, who relayed it to the doctor. He says he will consider reducing the dose if my platelet count goes above 200K. For the first time I got to feel a part in a conversation and that I have an informed opinion to express. I also felt very clear that I am the one in charge of making decisions about my own health, what risks I am willing to take and which I am not.
* I attended the first ever Houston area PDSA meeting two weeks ago. There were 7 other ITP'ers and their families, it was awesome to hear the different stories and perspectives. It was so refreshing to be listened to without having to give explanations.
* I think what I gained the most was perspective. The wisdom generously shared by those of you with longer experience than mine, as well as the live interaction at the meeting made it clear to me that my story is not, by far, unique; that in the life-long struggle of a chronic disease, ups and downs are the norm, rather than the exception;and that so far, my ITP has been reasonably manageable. I understand now that attitude that may be the most important aspect of this experience that is 100% under my control. Thank you for helping me keep mine up!

That's two counts in a row that were so close to almost be the same number miluz. It's a nice count - and stable. If you went down to 12.5mg, as I did, that would probably work for you as well too. Give it some time and you might start to notice small side effects to Promacta.

I likely would have gone to both the Houston and Dallas PDSA meetings but I had a conflicting schedule this year. Last year, at Dallas, was my first meeting. ITP was very new for me then. I think I asked one question after another for about an hour and a half. It helped A LOT !

Those are very stable counts, you have a great response to promacta from what it looks like.
I wouldn't look at going from 172 to 159 as a drop, they really are basically the same count once you factor in variables in the blood samples. If you stay so high for your next labwork, I would definitely be pushing my hematologist to decrease the dosage because those numbers are a little bit on the high side for what you want to have while on promacta.

It's nice that you were able to meet with person and get some support. The more you learn the easier it becomes to manage your condition!

Well, I did end up dropping my dose about 6 or 7 weeks ago to 75. That lasted all of 2 weeks when I saw my hema again and the count was down to 36. To be fair, I had a couple of counts 2-3 weeks before I dropped to 75 that showed a trending decline. So I've been at 100mg again for the past 5 weeks. I get another count next week. I also started taking it in the middle of the night. At this point, I don't eat for about 6-8 hours before or after taking it.

I'm not convinced that Promacta is doing a whole lot for me. It's just been all over the place. It's kind of a double edged sword. On the one hand I'd love to believe Promacta was doing nothing at all, and this is some sort of natural rollercoaster. On the other hand, the rollercoaster isn't all that fun and it would be nice if I got some consistency out of Promacta.

It's frustrating, to say the least.

Oh vey Promacta! After limited success with 50 mg, I got bumped to 75. Worked immediately, (which is great.). But now I’ve got to figure out a dosage. 75 mg every day has me at 224, 234, 268, 286. Dropped to 75/38/75/38....still too high....which kinda doesn’t make sense since 50 every day wasn’t enough. Now trying 75/38/38/75. Problem is that with the high count comes debilitating side effects....horrible head aches, finger pain, bone pain. Ugh! Not going to complain as long as it continues to work. But the headaches are unbearable!!!

(Just needed to vent.)