I need some advise. I started Promacta 50mg on 5/25/13 with 10 mg of Prednisone (I was in the process of tapering off), count 40k. Completely stopped Prednisone on 5/28/12. On 6/4, my count was at 268k, my dr lowered Promacta to 12.5mg since I had severe nausea and fatigue.
Here are my counts on 12.5mg Promacta:
6/18--800k; started on 1 pill of baby aspirin
7/15--208k; stopped taking baby aspirin
I hope this is not a downward trend. My dr doesn't seem worried about it, but now he wants to do CBC every 2 weeks instead of monthly. I know that the aim for Promacta is around 50k, but I'm worried that Promacta not working for me anymore. When should I expect my count to stablize?
You've reduced the dose rather quickly from 50mg to 12.5mg so you are going to see a drop in platelets. It may go down too low and you'll have to up the dose a bit. That's a normal way of things, you'll get stable eventually. It does take time so don't worry about it.
Thanks Ann, I have high hope for Promacta working for me, and still do. I will be very happy to be in the low 100's on 12.5 mg. Well, I guess at least we know it works for me, and we can always increase the dosage if my platelets drop too low. I never want to go back to Prednisone again.
I'm two months behind you, so I'm interested in your progress. I've been on 50 mg Promacta for only 1 week and my count went from 13K to 27K; not as dramatic as your report! As the last post indicated, I'm expecting it to take several weeks to stabilize in my system, so I'm hoping for a steady increase in numbers (fingers crossed). Have you stabilized yet?
I'm quite not sure if my numbers are stabilizing or not. I hope they are...here are more current counts:
I've started Promacta on 5/25, so it's over 3 months now. I would like to say it's stabilizing in the low 100's, but you know how ITP is....never know when you're going to be hit with a curve ball. I hope that Promacta works for you. At the beginning, my liver enzymes were high, but now it's starting to go back to normal now. I hope I can continue taking Promacta. I need a breather from all the treatments and dr's appointments/labs.
I know what you mean about all the tests, md's etc,! But your numbers look great to those of us who have been below 20-30k for years! Next question, since your numbers are SOO good, and since the goal of Promacta (according to Glaxo) is a stable 50K, is your Doc considering dropping the dose? I'm especially interested here also since I'm currently paying $93/50 mg. pill and hope to cut it in half! (My "Cadillac" Anthem insurance only pays for generics--I found out the hard way--and I don't qualify for Glaxo's "help" programs...)
I was on 50mg for 1 week. After that, the fatigue and nausea was really bad, and my liver enymes were pretty high, my dr dropped me to 12.5mg. I have been on 12.5mg ever since. I believe 12.5mg is the lowest dosage available for Promacta. Most people on this forum is either taking 25mg or 50mg. I'm so relieved and happy that Promacta is working for me at such a low dosage.
Not sure if I'm reading this right...you're paying $93 per a pill out of pocket??!!! My co-pay for 3 months supply of Promacta, doesn't matter on on what the dosage is $87.
You read it right. Retail Promacta in the USA is $5200 for 28 tablets. I get it through a Canadian drug company for $2600, but it takes 3 weeks to ship from Turkey?! I'm trying it to see if it will work in my case, but I don't know if I can handle $32,000/year just for one drug!
I hope my health insurance never changes. One thing for sure, I can ever quit my job! I hope that Promacta will be more affordable down the road. However, my first month of Promacta, my insurance didn't need a pre-authorization and now they do...and they raised the montly co-pay. However, if my dr writes a 90 day supply, it's cheaper. I have to go through a speciality pharmacy, Accredo.
May I ask what insurance you have. I am holding steady counts on Nplate but am tired of going to the doctor every week. I am thinking about trying Promacta if I can get it at an affordable cost. After I met my deductible, Nplate is fully covered for me. I will see if my doc is willing to fight for it with insurance company.
I have Blue Cross Blue Shield. They made my dr fill out pre-authorization forms. I believe he has to explain why I should take Promacta and what other treatments I had so far. I'm not sure what the coverage will be for Nplate for me since I have to do it as outpatient in Infusion Center in the hospital...so I'm guessing I would have to pay my max out pocket before it's covered at 100%. As much as I love staff at my dr's office, I would hate to see them every week. I started getting labs at the hospital this year because my dr's office charge a "nurse visit" which the insurance does not cover (they never did this before)...which they didn't tell me and one day I got a bill in the mail. Your dr should be willing to fight the insurance for you...my dr says he has some "tricks" in my pockets when dealing with them in case I get declined...which thank goodness it hasn't happened yet.
The one reason why I picked Promacta to try first over Nplate is I didn't want to get labs, then wait for the results to see what dosage I need for that week. It sounds so time consuming.
I also have Anthem Bc/BS but my drug coverage was for "generics only" (one of those fine print things that we were all supposed to note!) Most people--including me--don't think about the difference (a drug's a drug right?) so the lesson here is don't get a strange disease if you have generic drug coverage only! Back on the expense of Promacta, if anyone out there has had any luck with a discounted source of this medication--other than "GSK cares" for which I don't qualify--or unused meds, please let me know!
My medical insurance is with BCBS of Texas. But, my drug coverage is with Medco. In order to get Promacta, I have to go through Medco's speciality pharmacy, Accredo. I have to call Accredo in order to get Promacta shipped and keep following up until I get a tracking number. I told them it's important that I do not miss a day of Promacta. My dr tells me from his experience patients that misses a day trend to crash and I don't want to go there. There's always Prednisone as a back up...
I am going to possibly start the process of getting insurance to cover Promacta. I'm going to my specialist on the 23rd and I would assume he will know how to proceed, since he primarily sees itp patients. I will give you any info I can.
Seriously though I think there should be a policy that if there is a generic , they have to cover it but if not they should have to cover that as well. Insurance companies these days....ridiculous!
That does make sense about missing doses. I skipped a week of Nplate and crashed to 4 one week. Unfortunately, nothing else has worked for me so I could not miss a dose. I'm glad it's been effective for you and you are able to get it at a reasonable cost. I'm pretty sure my insurance is similar to yours and has a specialty pharmacy. I think it's Medco.
Have you tried Nplate. It is annoying to have to go to doc weekly, but Amgen has a really good assistance program. I think it's a $20 copay per shot. It has been the only thing to work for me, but am sick of weekly doctor visits.
Medco is does not have Promacta. They make me go to Accredo which Medco's speciality pharmacy. The process for speciality medications is a pain. My nurse would call in the RX, it takes Accredo about 1-2 days to process it. Once it's in their system, I would have to wait for a speciality rep to call me to schedule for delivery. The speciality rep verify through Medco it's covered and then advise me of my co-pay. The process takes about 8 business days, then another 2 days for shipping...so a total of about 10 business days. So, I have to be proactive and keep calling them to make sure there's no delays in my order. I asked my dr to write me 3 month's supply with the max refill allow. Medco charges the same for 3 month's supply as a 1 month's, the dosage doesn't matter, even though the higher the Promacta dosage, the more expensive it is. Once I get Promacta in the mail, I will go online onto my Medco account and pay my co-payment. I never pay in advance, you can if you want. If you need help with Medco/Accredo in the future, maybe I can offer some advise.
Slammed; I was re-reading these posts and saw how much trouble you were having with side effects like nausea on the Promacta. I know the 12.5 mg is the lowest available dose, but have you tried simply cutting the pill in half? You seem to be remarkably sensitive to this med, and even on 12.5 mg you are double the goal of 50K for Promacta treatment. I am very sensitive to pain relievers, and I always take one-half or less of the usual prescribed dosage, both Rx and OTC. Maybe at half the dose (6.25 mg) your side effects will be minimized and your counts will still be in the proper range.
Good point, but I don't think that's true with Promacta, which is a pill and not a capsule. Plus, Promacta is taken daily with the avoidance of food times (2 hours from meals; 4 hours from dairy products) so a timed release wouldn't work since that would collide with the food/dairy issues, rendering the medication less effective (calcium in food products apparently binds with the effective elements of Promacta, reducing the drug's effectiveness). I do agree that this is probably something Slammed should run by her MD, but with counts above 100K, and continued bad side effects, it would be worth a trial IMO.
The 12.5mg pill is extremely tiny. I don't know if it's possible cutting it in half without destroying the whole thing. I have cutted up my prednisone pills many times before since the pills are 20mg. I can save lots of money and lessen the choices of damaging my liver with 6.25mg pill.
Slammed; sounds like a question for a pharmacist as to how to divide a 12.5 mg "tiny" pill. They probably have lots of experience on this issue. Of course, some people who want to halve the dosage of a medication just take it every other day; I definitely would run that by your MD. Another idea which may require a little more work, would be to mortar and pestle the pill and then divide it as a powder. But I find this discussion very curious because you seem to be taking so little an amount of Promacta with such a BIG response; achieving 100k on just 12.5 mg is remarkable! Does your MD have any insight on your response, or is he just happy that your numbers are way up?
I asked my dr about taking it every other day about 2 months ago, he said from his experience with Promacta, it's not a good idea. His other patients that tried that crashes within a week. That got me scared. I don't want to be back at step#1 and start all over again.
I agree! I'm not sure how or why people "crash" doing every other day, but, yeah, I wouldn't want to risk that either. I would still check with a pharmacist or look into the mortar/pestle idea to try a lighter dose. How bad is the nausea and/or other symptoms?
The fatigue and nausea at the beginning was very bad. I was so hard to get out of bed. All I wanted to do was sleep all the time. For the nausea, my dr prescribe an anti-nausea medication that are used for chemo patients. With the lower dosage, the fatigue is still there, but not as bad. The nausea comes and goes.
Question: Are you gaining weight or losing hair with Promacta? Since being on Promacta, I gained around 2 pounds and noticed a huge amount of hair loss, which I hope will stop soon. I gained a few pounds with prednisone after years of taking it. However, once I stopped it, I lost it.
It's too early to tell; this is only my second week on Promacta, but so far, I've had no side effects?! My counts went from 13K to 27K after 7 days, so I'm hopeful that the numbers are slowly increasing. I know it's supposed to take two weeks to see changes, but some people have posted that it's taken a month for it to work for them. So I guess that also means that possible side effects may not surface for a couple of weeks...
Question: Are you gaining weight or losing hair with Promacta? Since being on Promacta, I gained around 2 pounds
Interestingly enough, I had weight LOSS while taking Promacta.
In the three years I used it, I lost over 30 pounds (without changing anything else).
In the first 4 months after stopping Promacta, I gained 10 pounds back.
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