Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC: Just started Promacta

Just started Promacta 4 years 3 weeks ago #55480

  • mmcnatt
  • Offline
  • Posts: 40
  • Thank you received: 4
At Kailey's last appt her platelets were 12k. The month prior (1 or 2 weeks after IVig) her platelets were 116. She had been taking Azithoprine. Due to her platelets dropping again the doctor decided to go with Promecta. I am amazed at the cost of that medicine. According to Walgreens our ins saved us $7200. Thank goodness for the state provided insurance cause I don't think I would have been able to pay the co-pay had we had private insurance.

The doctor, wanted to do another IVig but last week was a crazy week for us (birthday party and I was scheduled to take a nursing board exam). And since she had not had any bleeding episodes, he agreed to wait and try this medicine. Of course it took 4 days for approvals and the specialty pharmacy to get the medicine.

So far today, she has complained about feeling nauseous. For those that have tried Promacta, does that feeling good away after taking it for awhile?

Please Log in or Create an account to join the conversation.

Just started Promacta 4 years 3 weeks ago #55482

  • TerriC14
  • Offline
  • Posts: 130
  • Thank you received: 33
My daughter started Promacta June 2015. She started on 50mg daily. It was around her HS graduation and in between her job and a crazy summer I did not recognize anything different until I realized that she had lost weight. We initially thought it was because her activity level was so different - her counts had been very low (>5) and her most pronounced symptom was always fatigue and bruising. She felt so much better and had a great summer with a lot of hiking and outdoor activity. Eventually though I did realize that she was having some nausea and food aversion. She wasn't nauseous all the time. but when you put food in front of her, especially large portions (like a restaurant) she would be instantly turned off even for favorite foods. She managed it with bland food choices and small portions. If I remember it disappeared around the same time we lowered the dose so I am not sure if it was her acclimating to the Promacta or the decrease in the dose.

When she started on Promacta 50mg we were told that it was $5000 month. It did not even go through our Pharmacy coverage because our copay would still be so high. Our monthly co pay is $50.

My daughter has done very well on Promacta - that was the only side effect she had which did subside. She feels so much better in general then she did before. She is currently on 12.5mg 2 days a week while we do a very slow taper - I am hopeful she will get off totally, her doctors are not so convinced although they feel minimal doses are keeping her in a safe range, I hope that your daughter does well once she acclimates.
The following user(s) said Thank You: mmcnatt

Please Log in or Create an account to join the conversation.

Just started Promacta 4 years 3 weeks ago #55487

  • mmcnatt
  • Offline
  • Posts: 40
  • Thank you received: 4
Thank you for sharing your daughter's experience.

Please Log in or Create an account to join the conversation.

Just started Promacta 3 years 5 months ago #58849

  • Morganelli
  • Offline
  • Posts: 2
  • Thank you received: 0
Hi my daughter is suppose to start N-plate next week. We have a choice between promacta or N- plate. I was not sure which way to go. I was wondering how your daughter is doing now with promacta? My daughters platelets go between 20k-50k on her own. Her lowest was 8k. I am concerned about side effects ?

Please Log in or Create an account to join the conversation.

Just started Promacta 3 years 1 month ago #60223

  • mmcnatt
  • Offline
  • Posts: 40
  • Thank you received: 4
Sorry just reading this. She has done extremely well on Promacta. Platelets have been normal levels for months and she hasn't had any bleeding issues at all. I am currently awaiting the pharmacy to get the lower dose in at this time. The doctor and I decided to ween her off Promacta. We are going from a 50mg dose to 37.5 mg. We will do this for 3 months then lower to 25mg. Hopefully she will be off her medicine this time next year.

Please Log in or Create an account to join the conversation.

Just started Promacta 2 years 8 months ago #62356

  • mmcnatt
  • Offline
  • Posts: 40
  • Thank you received: 4
Well in late November we had gone down to 12.5mg of Promacta. Right before Christmas, Kailey was feeling bad and bruising. I called to get at CBC ordered. Sure enough she dropped to 19k. Back up the mg to 50. 2 weeks later platelets were in the 230ks. So we are cutting the 50mg to make 25mg. Last check this past Wednesday, they were 55k. So we go back this Wednesday for a lab. Hate this rollercoaster.

Please Log in or Create an account to join the conversation.

Just started Promacta 2 years 8 months ago #62359

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Have you tried alternate day 50/25 mg's? Many people have done very well on alternate day doses. Promacta should be dosed to keep counts between 50k and 75k. I know it's hard....some people bounce around even when the dose is kept the same all the time. I hope she stabilizes soon.

Please Log in or Create an account to join the conversation.

Just started Promacta 2 years 7 months ago #62384

  • mmcnatt
  • Offline
  • Posts: 40
  • Thank you received: 4
We haven't tried to alternate the doses. Her doctor is concerned about her being on Promacta so long. And we recently had to change from state assistance insurance to private. Which has caused a whole new series of headaches. (Hate mail order pharmacy). The whole process has made getting her medicine a headache.

Please Log in or Create an account to join the conversation.

  • Page:
  • 1
Moderators: jaycharness

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo