Promacta results

My daughter, age 20, has been on Promacta since 6/7/11. While weaning off Prednisone, with only 25 mg Promacta per day, her platelets jumped to a high of 307,000. Then then went to every other day, 8/1 when platelets were 49,000. Then changed to 25 mg one day, 50 mg the next when platelets dropped to 35,000. They went up to 56,000 and next week 58,000, but now after 2 weeks, down to 25,000. They have started 50 mg per day now. I sure hope this keeps her up there. Anyone else have this type of experience with Promacta. She tolerates it well and has no side effects.

Gay K

I've not had such a roller coaster ride with my counts since being on Promacta. They did rise a quite a bit in the beginning but lately have dropped to as low as 15. It's all a guessing game with how much medicine to take. I've changed it a few time as well. Last count was 46. It's amazing how much they can change over such a short time.

And how about the cost? My hema says insurers will sometimes cover Nplate but not Promacta. Anyone had problems with coverage?

my nurses contacted the manufacturer and I only have a $2.oo co pay each month! I like Jack's story of how his Walgreens receipt says he saves somewhere over $7000.00!

My first couple of months were up and down a bit while my body got used to the drug and the dosage was adjusted to suit my need at the time (75mg/day).
I had no trouble at all with insurance. My hematologist's office did all of the paperwork for me. All I had to do was sign one page. But two years ago one had to enroll in the 'Promacta Cares' program to get the drug....not sure if that has changed or not. It has been approved for general consumption since then.
Yep, you have to love the 'you have saved $XXXX' bit on the pharmacy receipt. Each pill costs about $90. I am always utterly amazed at how expensive custom drugs are. I still pay a $60 co-pay every month, but it beats paying the full price.
At least we now have a couple of drug options which were specifically designed for ITP.
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It's been awhile since I last posted here. I would like first to say i have had ITP for about 18 years. I am now on PROMACTA 75MG 1X. I have been on PROMACTA for about a year. I have been doing very well on it, my platelets have been anywhere from 50,000 to 100,000. Usually when I get sick they automatically drop, I used to have to have Ivig because my platelets would drop to 3,000. But since I have been on the promacta my platelets have stayed in a safe level even when I get sick.
But my problem now is CATARACTS. My ophthalmologist said that my cataracts are from steroid use. I am scheduled for surgery Nov 2. My question is if you have cataract surgery will cataracts come back if you are still on the medication that caused it?
Cataracts are a side effect from PROMACTA
when I go for my monthly check ups with my hematologist and I have told him about my eye sight failing and he never said a word! His PA told me I need to see my eye DR right away. Well the rest is history....:sick:

Hi Nancy, cataracts can't come back as they remove the cloudy lens completely so there is nothing to come back. Nowadays they usually replace the lens with a plastic one which is chosen for you and is like an internal contact lens, so you end up with better vision than you ever had which is a bonus. Good luck with your surgery.

I just had a cataract operation for one eye in August. It wasn't caused by any meds that I am aware of. It was really an easy operation. It was done out patient and I was home in 3 hours, altho I had to have someone drive me home. I wore a patch for the operation day and the Dr removed it the next morning and did a quick check up. I used eye drops for about 4 weeks. I wore patch at night for 2 weeks. It is the most often done surgery in the US, about 3 million a year. My Dr said he hadn't had any complications for the surgery in the last 10 years.

I can see really well. I mostly don't use my glasses at all. (partly because I need a new prescription and haven't had time to get it)

One dr told me that cataract problem more than likely from steriods, rather than Promacta, even though they list as potential problem. They list any potential and most people that end up on Promacta have previously had a lot of steriod history.

Our insurance does cover Promacta, we pay $50 per month, but we were told by them that their cost is $12,000 for 3 months. That is just amazing.

On Promacta since 6/9. 2 weeks ago platelets 105,000, this week 108,000. Life is good. She is taking 50 mg per day with no side effects. She is away at school and I just talked to her and it sounds like she has a virus - sore throat, headache, etc. I don't know how that will affect her platelets.

Gay K