Platelet Disorder Support Association

Join Us:

Become a Member

Support Us:

Make a Donation
    Remember Me     Forgot Login?   Sign up   •  Web site Help & Info
!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

What to do? Only 3 drugs to choose from.

More
14 years 1 month ago #17576 by helldog
What to do? Only 3 drugs to choose from. was created by helldog
So, here I am in Japan and my wife's ITP isn't responding to anything and hovering around the 5,000 mark. The doctor said we will have to choose a new medication by Thursday but he only provides us with three options. Rituxan, Imuran, or Promacta. Rituxan isn't covered by insurance here, but I can always rob some convenience stores, and I have heard that ITPers are responding to 25% of the usual dosage. Imuran just sucks. Promacta sounds like a lifelong commitment. This is just my take on things but I have to choose a drug. Help me by letting me know what you would choose. I really appreciate it.

P.S. I told the doctor that my wife and I still wanted to have a child so what medicine would he recommend to stay in line with that goal. His answer..."I don't know." That is how bad Japanese doctors are, but I have no choice but to deal with these morons.
More
14 years 1 month ago #17591 by barrelgal
Replied by barrelgal on topic Re: What to do? Only 3 drugs to choose from.
I can only give you my experience with rituxan, as that is the only one of the 3 I have taken. I did ask several doctors if rituxan had any effect on long tem fertility and was told no by everyone I asked as I was concerned with that as well.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 1 month ago #17604 by Sandi
Replied by Sandi on topic Re: What to do? Only 3 drugs to choose from.
Dog:

Of the three, Promacta has the best chance of getting her counts up the fastest (if she responds). Rituxan can take a few weeks, and Imuran also takes a good bit of time. You might want to consider Promacta for now, that does not mean it's a life-time commitment. Remissions can and do occur and new treatments are being developed all the time. She could use Promacta until something else becomes available or feasible (such as Rituxan) in the future. If the goal for now is to get counts up, Promacta may be the best choice. Some people also have luck with N-Plate.
14 years 1 month ago #17621 by
Replied by on topic Re: What to do? Only 3 drugs to choose from.
What Sandi said.

You didn't say what they have already tried. I'm assuming Prednisone, Dexamethasone, and/or IVIG?
They didn't offer common immune-system suppressants like Cyclosporine or Cellcept?
If they are only offering three other choices (which seems really odd), I'd choose Promacta (for the reasons Sandi gave. Make sure your insurance covers it though, it isn't cheap.
More
14 years 1 month ago #17647 by helldog
Replied by helldog on topic Re: What to do? Only 3 drugs to choose from.
I agree it doesn't make sense to only have 3 drugs available. Unfortunately it is very difficult to communicate with the doctors. They take my inquisitive demeanor as disrespect here. Usually Japanese patients ask no questions. As a doctor, you can do whatever the hell you want to them.

I also like Promacta and I am pretty sure insurance covers it. I just read from the drug description that becoming pregnant is ill advised while on Promacta, yet it is a drug that you usually don't discontinue. Rituxan, on the other hand, asks that people wait one year after treatment to attempt conception. Of course, who knows if remission would last that long.
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
14 years 1 month ago #17673 by Sandi
Replied by Sandi on topic Re: What to do? Only 3 drugs to choose from.
Dog:

I know things seem bleak now as far as having a family goes, but it might not always be this way. This change, and you never know what might be around the corner. Many people have had unexpected remissions when they didn't think it would ever happen. Hang in there.
Platelet Disorder Support Association

Donate

About

Stay Informed

Follow Us

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


Platelet Disorder Support Association
8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141
Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003
E-mail: pdsa@pdsa.org


© Copyright 1997 - 2025, Platelet Disorder Support Association. All rights reserved.
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.


Privacy Policy and Terms of Use