Promacta anyone taken?

They want to start me on Promacta as long as my count goes up. Anyone every had this before?

I have been reading the boards for about a year, and havent posted in a while, but thought id offer my experience to you, and maybe it will help with both this post, and your question about ivig. I had ITP in 1999, and went in remission until almost 2 years ago. Up until almost a year ago, the only thing i found would work for me was to get ivig every 10 days. I would go from a count of anywhere between 1 - 6 then ivig would keep me "safe" for 10 - 12 days. Basically count would go to 100+, then crash.
I started March"ish" 2012 taking eltrombopag (im in canada and its called revolade here) but im pretty sure its promacta in the u.s. Initial dose was 50mg per day. After 6 weeks, and a platelet count of 1 we were about ready to give up on it as well, but opted to up the dose to 75mg. That was in May of 2012. Went for an ivig, same day we upped it to 75, and 2 weeks later, platelets were at around 75 - which was really good considering. from there, they went up higher - into the 200's. Stepped down dose to 50mg, and still holding strong in august. Then (unknown to my hematologist) i tried to go down to 25mg. that worked for about 6 weeks, then i went to 25 every other day.
25 every other day was a mistake, and platelets dropped to 3, but, tried another experiment and went back up to 50mg/day. went in for an ivig, and asked them to wait for blood tests (was 2 days after finding out i was down to 3) and had gone up to 16, so... opted out of ivig, went home. 2 weeks later was at 200+, 2 weeks later 476!!!
So dropped down again to 25.
That worked until i got a flu (a 6 month old and a 3 year old with flus cough on you...) and platelets dropped again. so i upped it to 50mg/day again, and was fine for another few months. Most recently, i had been taking 25mg - until i dropped to 12 (4 weeks ago) but, after upping it to 50 again - i was 235 last week. Needless to say - im now on day 5 of 25mg again.
My hematologist does not recommend what im doing, but, also thinks its an interesting "experiment".
so...
other than the constant "tiredness", and sore liver, oh and outrageous expense - it is working for me, and is a heck of a lot better than getting ivig every couple weeks.
Hope this helps a bit, and feel free to ask me anything you like, i dont post often, but do a lot of reading.

Hoping to get the RX soon I have a re check on Thursday. So do u get CBC's weekly or just when you feel done. They are telling me every week until stable with liver test as well.. What do you do? I have a good family doc that does my test very cheap for (no insurance) trying to cut back on seeing the specialist so much at 100 a pop.. thanks again this really has been helpful

I was getting them every 2 weeks, but now i try to go once a month when things are well - just to make sure my "experiment" is working. But, i also go when i suspect i am low - usually a lot of unexplained bruises (big ones) and spots.
Even though i have now had hundreds of needles, i still hate every one of them - and dont want to get pricked if i dont need to.
i dont really worry about it much anymore, even when low. ivig is a decent backup for me - if absolutely necessary, and i have found with time, MOST people eventually find something that "works".
I have also noticed a lot of people get scared by their "doctors" - perhaps rightfully so, until it is learned how they deal with being "low", but, for me, my biggest scare was a really large blood spot on my eye (when i was at 1k) thats about it for dangers i am aware of. I get the bruises, and bleeding gums, and petechiae, big blood test needle bruises etc.... But, i cant let this run or ruin my life. - thats the mind over matter kind of thing i am working on

Heyseuss, what does a "sore liver" feel like? How is it different from other interior pains?

Well, for me, when i wake up in the morning, it is really sore, like a bad ?upper stomach? ache - it takes about 20 min, then goes back to being less sore. its kind of like a burning / cramp combined if i had to describe it. Good news is, i went to my naturopath and he gave me some drops called guna liver. 2 weeks after starting them, the pain has almost gone away.
hope that makes sense?

I take my second pill to day at 10:30, yesterday I had some back pain and insomnia. But I took a Xanax to go to sleep and was fine. But so far no other signs, and i hope I don't have anything else. Thanks for all the input.

So far on Promacta, I have serious have dry skin on my face (mostly around my eyes), it feels like wind burn.... I put lotion on and it burns like crazy. Getting another CBC on Wednesday hope it is stabilized where it is at 52k.

Hey there! I wondered how you were doing! Keep me posted. I hope the Promacta works!

Jeffrey

Last count last week 52k this week 26k going for another CBC on Monday 8/17. Doctor put me on Dex for 4 days at 40mg. Going to up the Promacta to 75mg, just waiting on the RX company to call me for the 25mg already got the 50mg. Hoping the Dex will bring the counts up....

Hopefully the 75mg of Promacta will work for you. After 10 days of taking Promacta at 50mg, it bought my count up from 40k to 268k (never seen that number before, the highest I ever been is around 120's). However, I had major fatigue and nausea, my dr reduced my dosage to 12.5mg. I've been on that dosage for almost 2 weeks now, the fatigue and nausea is better, but haven't completely gone away. I will get my next CBC 6/18..I hope it will be good news.

Got platelet count back it is 116k from 26k, he doesn't know if it was the Promacta or the Dex. So re check next Monday 6/24, so we will see next week what the count is at. So he doesn't know if he is going to up the Promacta at this point.

Has anyone had swollen joints? My ankles are swollen and sometimes I'll have red on face and chest but nit all the time. Neck front and back sore? Just notice the ankles today when in the shower they were hurting yesterday but didn't notice the swelling.

Two weeks ago 119k last week 116k and this week 19k. Doc is going to do the 4 days of Dex and upping my Promacta to 75mg. Sure home this works!

You might be better off just sticking to Promacta. You can't know how it's working or adjust doses by throwing Dex in there. :dry:

I can't get the 25mg to make it 75mg until after the holiday Friday or next week the only thing I can think is to keep me from going lower. I am at a loss...

Getting the 75mg on Monday, he wanted me to start it when I get it so they are shipping to my work. Getting a CBC at 11:30 and I know the counts will be high due to the Dex.

I have been on it since February 2012. Various dosages but have been on 75mg a day for 3 months. Ups and downs as far as platelet count. Problem I have is a major change to vision, went to Dr. and found I have 2 cataracts so there's that but otherwise nothing much else. Liver enzymes are a bit high but nothing crazy. I have had ITP since I was about 10. Had a brain bleed in Feb. 2012 that put me in the hospital before that I had not been tested since 2009 and was on a study for Promacta/Eltrombopag then. I had never been treated before the study since I was a teenager (I am now in my late 50s). My normal is about 24 and that what it was on this past Wed I am happy with that. Going back in 2 weeks and getting CBC again. I have been going every 2 or 3 months for a CBC since end of last year always between 24 and 50. Dr. had me start taking pill in the a.m. because I take Protonix before bed. So we are seeing if my platelets go up any in the next 2 weeks with the change.

I have been on Promacta 25mg for a month and just up to 75mg on Monday. How long until I can tell if this is going to work for me?

What are your counts, and are you also taking dex?
Erica

Stop dex last Friday and on Monday 105k re check on Wednesday

Sounds like you are doing well! How are you feeling?

Jeffrey

I wake up more tired than I went to sleep. But I don't know if that is just ITP or platelets dropping? When I get home from work trying to get things done around the house, dinner, dishes, or laundry is hard. I have notice it gets worse when platelets drop, I feel like am in a daze. I drink coffee to get me through the days.

I kind of fight that tired thing some too. I also drink coffee. If you can try a little exercise, nothing dramatic but it will have a positive effect. Stay with it for a week or so, if you need a little guide or program let me know and I will put a little something together for you. Hang in there kid!

Jeffrey

No dex just got a call from dr's office 52k and they want to change me to N-plate....??? and want me to take dex on sunday and get re checked on wed.... I'm lost and don't know what to do.........

I don't think he gave Promacta a long enough trial. Which do you prefer, pill or injection? Is this the same doctor who gave you 8 rounds of Rituxan?

no this is the new doctor and i agree we haven't given Promacta at the dose enough time. I'm thinking not taking the dex on sunday and get re count on wed and see where they are at. 52k is a great number and i know the promacta will not make them normal but keep them around 50k. I get more help and information from everyone on here than any doctor.

Amber,

I would try to get him to give it more time. Just ask him. Keep in touch! Don't worry!

Jeffrey

Can you give us an update on your Promacta experience? I'll be starting at 50 mg. in two weeks and am interested in whether you have stabilized yet. Also, my MD has told me that you can only take Dex at monthly intervals or you will get steroid symptoms (bloating, yellow skin etc.). How often have you been taking Dex??!!

Promacta didn't work so the switched me to N-Plate and this Thursday will be my 5th. The last time I took Dex was 6 weeks ago and only took 1 pill, so my counts would go up and not end up in the hospital again. With N-plate last count last week was 35k.