Another promacta recruit

Hello again!

I was diagnosed with ITP in 2007 with a count of 7k after receiving a cocktail of travel vaccines. (To this day, I believe those were the culprit)

Refractory to first-line treatments, I refused to let go of my spleen. Along came N-plate and I responded beautifully. I was on very low doses for about a year. I can not sing the praises of the medication itself enough....BUT I was growing weary of storing and preparing the weekly injection. I considered switching to promacta and was slowly tapering off when I pleasantly discovered that I was in remission! Hooray!!

So after a glorious 3-year vacation ITP has reared it's confounding head...argh. I drive myself crazy thinking about the trigger, but here is my steady decline:

23/02/17 46k
02/03/17 19k
14/03/17 32k
21/03/17 22k
27/03/17 9k
30/03/17 <10k (hospital stops counting under 10??)

So in the special brand of desperation that ITP can bring on, I started taking a handful of supplements vit. D, magnesium, probiotics, enzymes, tumeric, alpha lipoic acid, ester-C and...possibly a no no.... quercetine.(sorry this is part confessional) I suffer from a lot of airborne allergies and sometimes wonder if those play havoc with my immune system...

Basically rode out the month of March in a state of denial mixed with hope that this would resolve itself. I should know better. Ended up going for IVIg treatment this week due to persistent nosebleeds and blood blisters in my mouth. I was fast-tracked for approval of promacta.

When I picked up the promacta, the pharmacist, who admitted to not being familiar with the drug, still managed to give me a bit of a scare about side-effects: hepatotoxicity and myelofibrosis.

I am second-guessing my decision to go with the convenience of promacta over tried and true N-plate. Regardless, i will give it a go and revisit with my hema in May. I took my first 50 mg dose last night. (I take an iron supplement in the AM and did not want to interfere with that). Will keep you posted on my response and any reactions.

I have so appreciated all those who have generously shared their journeys!! I look to you in my dark hours.

Any tips and tricks would be greatly appreciated!!

Caro:
I also replied in the thread that you hijacked, but didn't address the liver toxicity. Patients are monitored for that and I have yet to see anyone get into real trouble. If LFT's start to rise, the dose is adjusted or the patient is taken off of Promacta. LFT's usually return to normal.

I find the people who are the LEAST informed have the most fear-- and will love to tell you all about it!

I have been on Promacta 4 times, each time was for several months to a year. I liked that it was a slight appetite depressant- I had gained 30 lbs from prednisone so it was nice to not care about food. It was easy and cheaper than Nplate- I got it free from a drug program.
I have heard of a couple people who had the issues of bone marrow reticulin and liver counts raised, but it was caught early in the bloodwork, CBC and CMP. Their problems reversed when they quit Promacta. I got my blood drawn monthly for that reason. My hematologist assured me that these issues can be seen by the lab, so I felt fairly comfortable there.
I had some mild side effects that went away after the first few days. But for me, with Promacta there was a lingering mild brain fog- that is uncommon, only have heard of one other person with that side effect. So eventually I switched to Nplate which I like much better, I just feel overall better on it.

Great you had a remission with Nplate! I have heard of people having remissions with both Nplate and Promacta. so maybe it will happen again- good luck!

I am greatly relieved -thank you. It is so reassuring to hear from seasoned pros who have actually taken these medications.

Poseymint, I am glad you are doing well on N-plate. I really felt a lot of benefits from it with little to no adverse effects.

Hello:

Hope everyone is well! I have been on promacta (revolade here in Canada) for two weeks. Early days, but here are my counts:

21/03/17 22k
30/03/17 <10k (IVIG treatment)
31/03/17 (Started Promacta 50 mg)
04/04/17 40k
06/04/17 65k (had to go back for liver tests)
11/04/17 71k

So I know these #s are skewed by IVIG treatment, but my response to that was never above 40ish and not sustained for long. ( I wish I had been more diligent about keeping a log way back when)

I wanted to report that I feel much better!! Fatigue that plagues me at low counts is greatly reduced. However, I must say that compared N-plate, I definitely feel that I am on "something" with Promacta. Minor stomach issues first couple of days. Brief periods where I feel feverish....very brief so negligable. First time I went for a run, I felt horrible!! Laboured breathing, congestion, blocked ears, numbness in my toes?! I hadn't been out in a few weeks, but this felt different than other times I had taken a break. This week has been better.

But the weirdest side effect of all are these ocular migraines:

www.allaboutvision.com/conditions/ocular-migraine.htm

"Painless ocular migraines can appear suddenly, creating the sensation of looking through a cracked window. The accompanying visual distortion spreads across the field of vision and usually disappears within 30 minutes."

I am only familiar with these because I first experienced them when I was on N-plate. It only happened every few months for the year that I was on N-plate. In the past two weeks, I've had three full episodes and times of intermitente visual distortion. So weird. If anyone has had these I would love to hear from you.

In my ITP life all my CBC counts have been perfect except for bloody platelets. Now, particularly with the liver tests, I have other numbers that are being flagged as low: RBC 3.98, alkaline phosphatase 34...

Does anyone know what low alkaline phospatase means? Is this something to be concerned about?? (My hemo's office is not great about following up and unfortunately my family dr. is no longer CC'd on results.)

As always, appreciate your good counsel.

CS

Gosh Caro, hope you can stick with it. Counts look good. As you mention, the effect of IVIG is confounding right now. Do you remember how much IG they gave you, maybe a single dose of 30 grams?
I dunno, maybe 90 next week if IVIG had an affect and 120 if it didn't. Something like that?

Hello. Your counts look great! Perfect.
My son has had ocular migraines for years. He would go totally blind in one eye for about 20 minutes, then the vision would return. It can be scary when that happens. In the past few weeks, I've had them about 3 times around bedtime. I just get very wavy vision in one eye. It's gone when I wake up.

Thank you, counts feel great!! I didn't take note of the IVIG dose. I normally receive 2 large bottles and one half-sized if that means anything...

Going through a reluctant ITP refresher... was reading that IVIG half-life is 21-25 days. If so next couple of weeks will be telling.

Sandi, sorry your son has those migraines. Really disruptive, I wouldn't want to be driving during an episode, but thankfully they don't last long. Interesting that you experienced them at night. I was starting to think they may be triggered by bright light.

Oh well, not the worst side-effect to have, but definitely the weirdest.:woohoo: :woohoo:

My son's ocular migraines seem to be triggered by either stress or being over-heated. He was a teen when they started and panicked the first few times, but learned to calm down over the years. Mine do seem to be triggered by light though if I look at a lamp or light at night. I get a weird, moving wavy pattern.

Hi everyone:

Just rounding out week three of promacta. Count this week was 23k. Feeling deflated. I guess my IVIG ride is over...good while it lasted.

To recap:
30/03/17 <10k (IVIG treatment) 31/03/17 (Started Promacta 50 mg)
06/04/17 65k
11/04/17 71k
20/04/17 23k

Argh. I want off this ITP roller coaster. I want all of us off this roller coaster en masse!!

You know how this goes. Next week might be better! Chin up!

I've been looking for the escape hatch to the roller coaster Caro. Haven't found it, but I'm sure it does exist.

That 23 seems odd after going up from 65 to 71. Really odd. How have you decided to take the tablets, at bed time, or ? Have you accidentally skipped any days?

I suppose two bottles of IVIG might suggest one of 20 grams and one of 10 grams.

Hi Hal,

I am confounded by this condition. So frustrating! I decided to take promacta pills at bedtime to avoid interaction with iron supplements and morning kale super smoothies.

Is it better to take to it in the morning?? I think I recall reading someone taking it in the middle night... I would take it at the crack of dawn while doing a headstand, if that would work. I have yet to miss a dose....
Onwards and hopefully upwards!!

I dunno Caro. Just off hand, seems like taking supplements 12 hours before/after Promacta would be the best one could do in that department. Or maybe skip them for a couple of weeks and see if that makes a difference?

I take mine at 2am then it doesn't interfere with my eating or twice daily calcium supplements, it's only a pain when I'm on nights but my colleagues are getting used to me moaning about being hungry and having to reduce my tea intake !!

I'm sorry to hear that your last count was a bit low. I have had lots of "everything seems to be going fine then... boom! low count" moments so far with my promacta experiences. It seems to me that if my immune system decides to do just about anything (like maybe fighting off a bug successfully and I don't end up sick) my numbers do weird drops. Or maybe they are dropping for other reasons, there are just too many variables! Regardless of the drops, I'm glad that I've adopted more of a "don't change the dosage based on 1 or 2 count numbers" philosophy.

I think not making changes until after maybe 2 or 3 counts that might be showing a trend is good advice. I mostly get panicky when my counts get too high, and that hasn't happened lately, so I'm just sticking to my 50mg for the time being. I hope you pop back up after this most recent blip.

Regarding taking the pill, I also manage iron (and kale juice) in the mornings. I take my promacta usually between 12 and 2 AM (whenever I happen to get up to go to the bathroom). If I happen to eat an early dinner and manage to go 4 hours without snacking on something before bed, then I occasionally will take my pill right before sleeping. But for the most part, the middle of the night thing works well, and I like feeling like I'm avoiding introducing more variables by potentially altering the absorption with food/supplement interference. This medicine is really susceptible to absorption decreases from certain food combinations, so I like not having to think about it.

Good luck with your next count and keep us posted We've got a nice selection of promacta anecdotal evidence threads going here!

Hello everyone!

Thank you all so much for your input and advice. It is much appreciated. Funny, I opted for promacta over n-plate this time around for "convenience" without realizing it would be such a fussy little pill!

I've tweaked my schedule a bit to take it an hour later, ensure it is sufficiently spaced from dinner to avoid possible interactions. I laid off the supplements for this week. Will resume those once I am at a more stable count.

And this week's count was....40k! I'll take it!! (don't really think changes to my routine are reflected in this just yet)

30/03/17 <10k (IVIG treatment) 31/03/17 (Started Promacta 50 mg)
06/04/17 65k
11/04/17 71k
20/04/17 23k
25/04/17 40k

Ocular migraines have subsided, but still definitely feel like I am on something compared to n-plate.

Will see what the next few weeks bring. In the meantime, I follow your updates with the same hope and anticipation.

CS

Hey CS. Ran across this old post on Promacta and Iron supplements. Thought you would be interested.
pdsa.org/discussion-group/7-treatment-general/27604-counts-with-promacta.html?start=60#37103

The whole thread has a lot of discussion pertinent to Promacta. Another post in the thread by 'slammed' also suggests some folks may have a problem with counts crashing if they start skipping days to titrate the dose. That may not be applicable in your case.

Hello Caro,

I dont understand why you will take a drug which is working for you and replace it with something else and go through all these hassles.

You might have been already in remission if you have taken nplate.

pdsa.org/discussion-group/7-treatment-general/29543-study-on-why-nplate-works-on-some-and-promacta-on-others.html

The above is a thread discusses NPLate vs Promacta differences.

The results clearly indicate like myself you have antibodies which will only respond to NPlate.

Here is quick chart from the thread above-
www.haematologica.org/content/haematol/100/5/623/F5.large.jpg?width=800&height=600&carousel=1

Hi everyone:

I haven't posted in a couple of weeks, but my response to Promacta has kicked in.... latest counts 103k and, this week, a dizzying 169k!

30/03/17 <10k (IVIG treatment) 31/03/17 (Started Promacta 50 mg)
06/04/17 65k
11/04/17 71k
20/04/17 23k
25/04/17 40k
01/05/17 103k
08/05/17 169k

Still on 50 mg. Take it the second before I go to sleep. Stopped taking all supplements except for a multi vit 12hrs after medication. Ocular migraines are still occurring, but I feel great. However, I know I am above the target range and many of you are just as nervous about high counts.

I see my hemo on May 23. Should I be prompting for a dosage change before then??

Many thanks!!
CS

Hi Caro

"After initiating eltrombopag, the dose must be adjusted to achieve and maintain a platelet count
≥ 50,000/μl as necessary to reduce the risk for bleeding." www.ema.europa.eu/docs/en_GB/document_library/EPAR_-_Product_Information/human/001110/WC500089964.pdf
I am more worried by a high count than a low count.
The idea of too many larger, stickier platelets circulating around my system terrifies me.
I am aiming for a count between 50k-100k(max).
Also the lower the dose one is on the lower the risk of any side effects.
Anne

You are showing a great overall response Caro, that is good news.

I'm with Anne about being more paranoid about high counts than low ones. One time with a high count might just be a random blip, but if I had another count in a row like your last one, I'd probably be pushing to go down in dosage, personally. I don't have a spleen though, so I think I'm more paranoid about clots than the average bear, :lol:

In general though, the medication should be adjusted to be taken at the lowest possible dose to achieve 50k. If you are still having ocular migraines, that's more motivation to see if you can gradually decrease the dose but still remain around 50k in general. Lower dosage should help reduce side effects. Good luck!

I get ocular migraines and it is when I'm dehydrated. I know that is the cause for certain.