My Promacta Journey

Thanks Msb04. I was confused on the Prednisone weaning. I by mistake wrote that .5 every 5 days to the Mayo dr maybe subconscious. Anyway he agrees with you with weaning Pred. And with protocol on the take 50mg if Promacta. Good to have some confirmation from a reasonable and expert opinion.

My Note:
My Platelet count today was 236,000. (Down 50,000 a day). Do you think I should I go back up to 75mg Promacta or be on 50mg a day? I stopped promacta on 11/2 since my count was 582,000. I have only taken 2 doses of Promacta 50mg since then, on 11/6 and 11/8. I am down to 7.5 Prednisone a day starting today for 5 days then down .5 again, etc. Do you think that is a good weaning schedule?Any advice would be helpful on this. Also, if you have heard of an ITP specialist in Colorado, please let me know. Thanks so much!

Mayo Dr. response:
I would continue with 50 mg Promacta. stopping when PLT count above 400000. You can reinitiate therapy at held dose (25 mg) when PLT goes down to 200,000 (so you need twice weekly PLT monitoring at that time).
Prednisone weaning schedule is fine. stop when you reach 5 mg for 5 days.

OK support group...we have a plan!!!! Just trying to figure best days for lab, thoughts? and I will try to be OK with 6,000 PLT count for a few days if that happens. Hopefully it won't.

Thanks to all of you who help me through these questions and treatments. You make this ITP situation manageable!

11/15/17 plt 49,000
50mg Promacta daily

Well, there is the data pretty much as I predicted. Back on my usual daily promacta, and back in the 40s. No long term effects from the steroid spike, no fundamental change in the mechanism of my ITP. Back to my normal platelet destruction rate. I'm happy that I seem to be back in the target count zone, and didn't trigger any major instability/fluctuations from spiking things with the steroid. A successful rescue and recovery. I'll take it!

Oh darn. Back to the norm.
It was indeed a brilliant steroid rescue though. Well done. Great info for others.

Hi
First, yay you are stable at 40,000!!! Very good news!
Second, my GP agreed with you to stay on the 7.5 until Thanksgiving to get me through the holiday. My only problem is that I am getting crazy and things are getting me stressed out too easily. I am trying to calm down with deep breathing and exercise but it is not terribly effective. I am getting my platelets tested tomorrow and we'll see where they are and decide if we need any medication tweaks. I am back on the 75 of Promacta since 11/12.
Yay you, good thinking with the steroid pack.

11/27/17 plt 33,000
50mg Promacta daily

Lower count than I have had, but no symptoms so I'm going to keep cruising for the moment. Perhaps my immune
system is being a little overzealous since ramping up after my steroid burst. Hopefully I'll creep back up into the 40+
range after a bit more time to re-stabilize.

Hi momto3boys,
Sorry to hear the plt count is a little lower than usual. But glad they are still in a safe range. I bet you are right about the immune system imbalance after the steroid burst. Sending good thoughts for the next count to be back to 40+.
Cindy

Here's an update on my Promacta experience . During year 1 after restarting on 75 mg daily I went from 3 to about 65. During year 2 starting on 75 mg gradually reducing to 3x 75 mg and 4x 50mg I have been stable for the last 9 months between 100 and 150. As I was at 145 today I will be on 2x75mg and 5x50 mg for the next 8 weeks. I think not mucking about too much with the dosage and reducing very gradually has contributed to stability of platelet count . As of now ,starting year 3, I hope to become stable between 50 and 150 on a daily 50 mg dose. I thinking aiming for a max of 50 does not allow enough leeway for the inevitable variations in production/ destruction. Neither coffee nor wine seem to affect my count. The only thing I try to limit is my gin and tonic consumption!

1/17/18 plt 192,000
50mg Promacta daily

Whoa nellie. This is a high count, yuck yuck yuck. I went out of town for two weeks and was due for a count when I got back, but was a little bit sick and then figured I'd wait to feel better before doing blood work. Before my trip I had a count of 40 (my normal) that I think I forgot to record on my thread here.

I'm assuming that this is an outlier for me and will not change anything for the next two weeks (So hard for me to not react, but I will restrain myself and not chase a single count!). At that point if I still am too high, I'll start mucking with the Promacta dosage.

I'll be getting back on my every two weeks lab schedule again, so will be updating with more regular data.

Whoa Nellie is right. Is there any chance that being out of town caused a better observance of the 2/4 hour before and after Promacta dietary rules?

Nope, I don't think it's a better observance of the no-eat window. I've actually been home from vacation for two weeks now, so whatever anomaly it might have been should have normalized. I'm usually pretty obsessive about maintaining my promacta dosing regimen. I usually end up with 4 hours before and 7-8 hours after, so I give it a nice long empty stomach absorption party.

Who knows what the variable is. We spent a lot of time hiking in New Mexico and it was very sunny, so maybe natural vitamin D, maybe high altitude exertion, maybe ... it could be any one or a combination of a hundred things. Or just a random outlier Too many variables to really know unless I see some other pattern over time. I'm so curious to see what my next count will be.

I can definitely tell you that I am in promacta headache hell. Ugh! I feel the pain for all of you that suffer from this regularly. I guess it's kind of nice that my body has an indicator that lets me know my count is too high, but this headache is rough. I am not prone to headaches in any way, so maybe I'm more of a baby about having one, but no fun.

I'm going to skip my Lysteda dosing during this cycle (just started) because that messes with clotting behavior, and I'm already terrified with my high count. Hopefully next month my counts will be back closer to the target range and I can continue that experiment. The first month taking it definitely improved the nature of my monthly blood loss, so worth pursuing.

Thanks for your input on potential causes. Maybe I'll just finally get to titrate the dosage down from 50mg if I'm really lucky!

2/6/18 plt 45,000
25mg Promacta daily

I just could not hack the horrible headaches and sense of impending doom that I felt after that last high count (192), so I made an executive decision to cut my promacta dosage to 25mg. I was all over the map in the past when I tried doing the x number of days at one dose and y number of days at another dose. I really believe that my body likes the consistency of exactly the same thing every day. Medication taken at the same time, with exactly the same dose. That is what was working so well with me staying at 50mg for months.

It's been almost 3 weeks since I decreased my medication, so this may be a stable count. Or, I may be sending myself into lower counts in the future, but that was a risk that I was willing to take. I'm in a watchful waiting period to see what happens. No symptoms of any kind or crashes yet, but we'll see what the future holds. I will say this beats those horrible headaches and the higher potential for clots and strokes. I have to do what I can live with, and ending up with a target count is a pleasant surprise

Sounds good to me Mom.

I would have done the same thing. Keep us posted!

momto3boys wrote: ... 25mg Promacta daily

Uh, oh. Ok, wait for it... Yes, here it is: This is because you took that Pred a few weeks back. :lol:

Good news that you lowered your dose Mom and have fewer side effects! Yes I agree that the steady dose of TPOs works best for me too. I have been on the same dose of Nplate for one year now and have done some calculations for my doctor. My average count in that time is 44.3. My low count was 15 and high count 95. Low count was due to missed doses, most of the time counts were above 30.

The year before, everyone was changing my dose- nurses, pharmacist, doc and myself. In 8 weeks my dose was changed 4 times (from 495mcg to 453, back and forth) and my counts crashed twice, down to 3K and 5K. Thats when I asked to lower the dose (412mcg) and keep it the exact same no matter what the count and no matter what I weighed (Nplate is adjusted according to weight of patient). My doctor wasn't thrilled about the idea but went along with it. Since keeping the dose the same, counts have been much more stable and higher overall numbers even with the lower dose. So I'm happy, and feel lucky that my doc will go along with me.

Hal9000 wrote:

momto3boys wrote: ... 25mg Promacta daily

Uh, oh. Ok, wait for it... Yes, here it is: This is because you took that Pred a few weeks back. :lol:

:lol: My steroid burst was over 3 months ago, but hey, anything's possible! I'll take whatever works. I only have one count done since hanging out at 25mg, so I won't claim any kind of victory until this "target counts at lower dosage" streak lasts longer!

poseymint wrote: Good news that you lowered your dose Mom and have fewer side effects! Yes I agree that the steady dose of TPOs works best for me too. I have been on the same dose of Nplate for one year now and have done some calculations for my doctor. My average count in that time is 44.3. My low count was 15 and high count 95. Low count was due to missed doses, most of the time counts were above 30.

The year before, everyone was changing my dose- nurses, pharmacist, doc and myself. In 8 weeks my dose was changed 4 times (from 495mcg to 453, back and forth) and my counts crashed twice, down to 3K and 5K. Thats when I asked to lower the dose (412mcg) and keep it the exact same no matter what the count and no matter what I weighed (Nplate is adjusted according to weight of patient). My doctor wasn't thrilled about the idea but went along with it. Since keeping the dose the same, counts have been much more stable and higher overall numbers even with the lower dose. So I'm happy, and feel lucky that my doc will go along with me.

I think you were the one who originally put in my mind the benefits of really keeping a consistent dose and letting the counts bop around some before seeing if they settled. For my body, that is a really good thing it would seem. Fingers crossed for my subsequent counts!

It's great that you do so well without the changes and spikes too. It is awesome to find a good doctor to work with, and yay for stability!

2/22/18 plt 40,000
25mg Promacta daily

Well, there is my official second count after my precipitous dose lowering and it would seem that I've gotten away with it! Still in the happy safe range, and no adverse effects. Part of me wonders how much this promacta is really doing for me if I can just chop the dose like that and still be getting 40s. I won't do anything hasty yet, of course. I'll hang out at 25 for the foreseeable future, but part of me really wants to see exactly what my default counts would be like now. If I could have 40s with no treatment I would do that in a heartbeat. I'm scheduled to see my hematologist next week, and I'll float that by him as my 6 month plan :lol:

We'll see what he says. Anyway, happy for another safe count on half the medication.

So jealous, but so pleased for you. Still a way to go for me. 25mg/50mg on alt days and 3mg of Pred a day but hanging around a count of about 70.
Bloods in a fortnight. If count still stable will be dropping Pred a tad.

Hi,
That is great news. I am very happy for you!!!!
Cindy

Anne, I have to say that your slow and steady method is surely the smart way of doing things. You will get there eventually

Dropping the dose like I did is surely not recommended! I managed to get away with it, but I really think I've figured out that my body hates different doses on different days. I think for most people (and it could still happen to me!) that such a move would precipitate a crash.

We are still waiting to throw you a virtual party when you finally get off that Pred! Slow and steady wins the race

4/17/18 plt 39,000
25mg Promacta daily

I've been skipping out on lab work because I caught a virus somewhere in the middle there and didn't
want to see the low count. Ended up with baby blood blisters in my mouth as well as some petechiae,
but the mouth blisters went away after a few days, so I knew that it was on the way back up. Despite having
a count lower than usual, I managed to get through a monthly cycle and didn't have runaway bleeding.
Yahoo, that was exciting! It's only runaway bleeding that precipitates my need for other rescue measures,
so I think the tranexamic acid is helping just enough to get me through.

Finally got my liver panel done (we had gotten off schedule with my new doctor and I made sure to
get the order at my last appointment) and thankfully everything is still good on that front. So far so
good on the no hepatoxicity front.

TSH and T4 values also got checked (I did all my bloodwork in one fail swoop) and those are looking
better with my daily synthroid, too. Even my hgb and hct are looking fine, so in terms of bloodwork I
can't complain about anything. I've been completely lacking in energy though, so maybe I can relate to
running with lower counts zapping energy. Fingers crossed that I'll start creeping up above 40k again
eventually on this dose of Promacta. I still can't believe that I got away with halving my dose like that,
but more data points over time will let me know for sure. Every day I manage to stay at 25mg is
less medication overall!

Nice count! And all the other related stuff doing good as well.
I've been concerned that counts would slowly fade on you. But hoping another steroid rescue, and trip up to 100 for a little while, would keep you on 25mg.

Hi momto3boys!
That is all good news and I am glad you are down to 25mg Promacta!
You inspired me to post which I will do soon. My news is cautiously optimistic as well.
Sending you good thoughts!
Cindy

Am happy to say that after 6 weeks on 6x 50mg and 1x 25 mg per week I am still at 139 which is just about where I was when I was on 75mg daily a year ago. I am hopeful that I may be in partial remission and will soon be able to drop yet another 25 mg but at present because I am due to have a hysteroscopy and maybe a D&C I will just stick with the current dose . It is now almost 2.5 years since I went back on eltrombopag at 75mg with a count of 3 and it has been a journey of gradual improvement along with very gradual dose reductions of 25 mg at a time over quite long periods. For me not chopping and changing the dosage has worked well.

Awesome Margaret!! I am so happy to hear such a good update from you. Nice job on the slow and steady reductions over time. I hope things keep going well and keep us updated!

Looking good Margaret. Convinced I'd posted this already but obviously failed. Senility rapidly approaching !!!

5/22/18 plt 19,000
25mg Promacta daily

Well, I knew that my counts have been running lower lately, so this isn't much of a surprise. I have been messing with my
diet again (ketogenic diet this time combined with IF) and losing weight at a pretty good pace (after trying lots of different things paleo/IF/etc.
over the last year or more with not much success). I'm about one month into my dietary changes, and am not surprised
to see a count drop. Any time I've messed with my diet in the past or lost any weight I seem to get a drop. This time, however, the tranexamic
acid helped me get through a monthly bleed without excessive loss at this count, so I'm not going to change my promacta
dosage now. As long as I'm not having mouth blisters, I'm going to stay the course because I think, based on my past experiences,
that my body will be unhappy with the dietary stressors/weight changes for a while no matter what I do. Finally having figured out
my weight loss problems after trying so many things is too good to give up on without a bigger platelet drop!

Other than count issues (these lower counts are affecting fatigue/energy), this diet seems to really work for my body now.
Cravings have completely evaporated and I have a lot more mental clarity than I did before. Here's hoping that as it becomes
more routine my counts will work their way up over time. Just another installment on my "debug the body" journey. Stay tuned!

6/6/18 plt 11,000
25mg Promacta daily

So this lab work was performed as a part of my annual physical and thus from a different lab than usual. I am having no bad bruising or blood blisters in my mouth, so I'm going to stay the course with what I am doing right now until I become symptomatic with mouth blood blisters. There really isn't much of a difference between 11 and 19, so I'm assuming that it's about the same range. Lower than I had been running before, but manageable because of lack of symptoms.

Still doing the ketogenic diet and still losing weight (more gradually now that the initial water weight/electrolyte changes have settled). This has surely thrown my system out of whack because weight loss is a stressor and the body loves homeostasis, but worth it in the long run!

The on-call doctor for my GP called me in a panic upon seeing my results of course, so I got to talk him off the ledge with promises to follow up with my hematologist. It's always fun to calm down the doctors who don't know your situation and want you to run to the nearest ER (no thanks!). Luckily I was able to appease him enough that he could leave me to manage.

Overall, things are good. Numbers are looking crazy low on paper, and I never had a tendency to run that low before, but the lack of symptoms and monthly tranexamic acid means I will stay the course until blood blisters show up!

momto3boys wrote: ... I am having no bad bruising or blood blisters in my mouth, so I'm going to stay the course with what I am doing right now until I become symptomatic with mouth blood blisters.

I suspect I lived about 8 to 10 years with a count of 12. No 'ledge' here. Still, have you got some ideas about how to treat (because of blood blisters) while dieting? Or, after you've achieved your diet goals?

... Lower than I had been running before, but manageable because of lack of symptoms.

Yes, 'wacky' highly-reactive platelets at work. Do you think there is a possibility that Promacta will keep blood blisters away - for the foreseeable future?

Oh, BTW. I've been meaning to ask you. That was a great insight on the possibility that Danazol might help me long term - ref my thread on Danazol. Have you had ITP friends in the past that were treated with it?