Experience with Promacta

Would like to learn more about others experiences with Promacta.
I am not having success and dr is reluctant to take me off. All
input appreciated.

It would help if you told us something about your own case. What daily dosage of Promacta are you on; 25mg, 50mg, or 75mg? How long have you been on it? What is your platelet count? etc.

Been treated for ITP for 8 years. I have used Promacta for a year and a half. Initially it did not do much at 50mg/day. That dosage only got me from 4k to around 13k. After about 3 weeks of this, my hematologist increased the dosage to the maximum of 75mg/day. That boosted my count into the 50k range over a month's time.
After a year, I was able to drop back to the 50k dosage and my count remains around 40k-50k.

Everyone is different, but it works for me.

.

Jack's right more info would help! I've been on Promacta for almost 6 months now. I started it right after a round of ivig. My counts were real high in the beginning, it think it was a mix of the ivig and Promacta. By real high I mean 200+. I've been josteling 25 and 50mg a day for a couple of months. Just found out today that after a month of 25mg a day my count is 46. Doc wants me to up it to 50mg a day, but I'm not sure I'm going to do that. Though I don't have any daily side effects, I don't like the possibilty of the long term side effects. Even though they don't know the full extent of those either!

I have my count at 38 , they are telling me once I drop below 30 than they will treat me. I had IVIG in 09, have been in remission since till 3 weeks ago. I have dropped 15 since last week.

They really want to push NPlate on me and I am worried, my bone marrow is screwed up now why would I screw it up even more. I saw Promacta but my doc is for NPlate

Don't knwo what to do

I took Papaya Leaf Extract to no avail, I have changed up my diet eating whole foods, no help....

Help

Ready to ask for Predisone the old timers way....I am 65

norma,
What's wrong with your bone marrow?
Erica

Have you tried another IVIG since 2009? If not, I'd be tempted to push for that again since you had such a good streak.

I was diagnosed after a slight fall on the stairs and developed a huge hematoma
on my backside. I have ITP for 16 or 17 years. Never had any other bleeding episode. Initially I was treated with Prednisone.
Over time I developed too many problems with steriod use. My doctor took me off it when I had trouble walking in a straight line.
When my platelets hit 3,000 my doctor put me on Rituxin which put me in remission
for 1 yr. After they fell to 20,000 I was put on Rituxin again. About a week
after the second treatment I developed a lung problem due to Rituxin. Ended up
on oxygen 24/7 for 4 - 5 months. I did stay in remission again for about 14mths.
I am now 70 year old grandmother with ITP.
16mths ago my doctor put me on 50 mg Promacta. My initial count on this drug
was 50 - 60,000 but within a month I was down to 30,000. My dosage was increased
to 75mg. and during the past 16mths my plateletes have averaged 35,000.
about 2 - 3 weeks ago they dropped to 23,000. After learning that I tried to
be gauarded about everything I ate and exercised everyday. After one week my
plateletes were 52,000, the highest in over a year on Promacta. Dr. said it had nothing to do with what I ate - they were probably clumped and not counted correctly.
I have asked my dr if I could come off Promacta (before they hit 23,000 and he
said I can't come off) when they hit 23,000 he was talking N-Plate.

If I knew I couldn't come off Promacta I would have thought twice about going
on it. My side effects: Hoarseness - no late night eating and longing for
my glass of wine!

Why can't you have a glass of wine? Alcohol is not contraindicated with Promacta. You might want to try Nplate as there are no food restrictions to worry about. It's an easy treatment.

Are there diet restrictions with Promacta I like my glass of wine...

norma6020 wrote: Are there diet restrictions with Promacta I like my glass of wine...

You can't take the Promacta tablets 4 hours before or 4 hours after anything with calcium in it.. so any dairy and some other foods fortified with calcium. I asked the guy from GlaxoSmithKline at a conference why and he said that calcium binds to the drug and stops it from working.

Promacta works in a similar way to Nplate as in it forces the body to make more platelets, so problems with the bone marrow can arise with either. But they do check the blood film regularly and if they see any odd looking cells they will know that something is wrong. When the drug is stopped any effects appear to completely reverse.

Why can't you stop taking Promacta?

You CAN stop taking Promacta. No taper, no muss mo fuss.
Promacta is a maintenance drug. That means it will maintain things while you take it, and stop maintaining things when you stop taking it. At which point you will simply need to start on another treatment.
As always with ITP; everyone is different, but Promacta is a maintenance drug, not a cure.

What is all the foo-fu-rah over a glass of wine?
I've been drinking my usual amount of fine beer and/or wine, same as always this whole time. No issues. My hematologist doesn't have a problem with it, I don't have a problem with it, and Promacta is doing it's thing regardless.
The average person is in bed 7-8 hours every night, right? So just take your dosage in the middle of the night. I take mine around 1am-3am (whenever I happen to awaken) and go back to sleep. After awhile, your internal clock wakes you up about the same time every night....it's easy.
Same for calcium....just don't take your dosage with a big glass of 'extra-calcium-fortified milk' at 3am. It really isn't difficult.
Taking it in the middle of the night also helps with some of the minor side effects I get...I sleep through them.
Actually.....the only really visible thing Promacta has done to me over nearly two years is that it enabled me to shed 30 pounds of old 'Prednisone weight'.

Promacta is not some uber-scary drug which we have to tiptoe around holding our breath, using an 11-foot-pole to touch the bottle, and holding a spreadsheet in one hand of what we can and cannot do while taking the stuff. It's been around a few years now, gone through the trials, been approved (at least in the USA) and released for general consumption, etc.
And it's the easiest treatment that I have used over the years.

I want to thank all for all your support. Giving me info on Promacta and NPlate , I truly do not know what they will want to treat me with but thankyou again for answering all my questions.

I am seeing new doctors today. After my last week's fiasco with my preset doctors, and after reading a wonderful supportive statement by one of the patients here on this PDSA , that if you a s a patient feel they are not communicating with you, than dump them. I did.

I am seeing new doctors 5 min from my home at the Sharp Cancer Center. I placed a call, after finding out they were in my network, as I have a PPO and can go anywhere in CA, the office manager, called me, this was last Thurs and set up an appt for today Mon ...I was impressed.

Sometimes I don't know what is consistent or believeable.
About a year ago, I started 50 mg Promacta for only two weeks. But at the end of the 3rd week, the count drifted up to 598k. I currently restarted at 25mg. After 7 days my count jumped to 190k. I've got a CBC scheduled later this week for an update an I expect the count to go a little higher. We just don't know what to expect from week-to-week.

Weirdjack, thanks for your input. After going on Promacta, my hemotologist said I should not drink. 6 mth checks revealed no problem with my liver. Recently learned I have a fatty liver coupled with the knowledge that Promacta can effect
your liver I am siding with caution at the present time.