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New Treatments

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14 years 6 months ago #13766 by kmputman
New Treatments was created by kmputman
I have had ITP for 6 years now and am not able to keep my platelets above 50k without IVIg and even then they only stay 'stable' for a maximum of two weeks. I have tried prednisone (which we all know is inherently evil) and it didn't work and came with severe side effects. I suggested to my doctor having a MediPort put in my chest but he is adamantly against it claiming that there is a new pill coming out soon that I will start on. He refuses to try Rituxin, Danazol, Promacta, splenectomy, and WinRho for various reasons. I wanted to see if anyone knew of this 'new pill.' I feel very frustrated that he overlooked the idea of having a port in favor of a new drug when he has dismissed every other drug.

Thanks!
Katie
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14 years 6 months ago #13771 by server
Replied by server on topic Re: New Treatments
Hi Katie. My bestest friend in the whole world is named Katie! :)
I see that you are no newbie to ITP. I would have to say given the circumstances, that a good thing! I am very interested in knowing the doctors reasons for refusing any of the other treatments you mentioned. It's quite interesting indeed. I'm assuming the port you want is to make the IVIg treatments easier, but I'm also asking myself why you are on these for such a long time? You must have some REALLY good insurance! And, doesn't having IVIg all the time interfer with your quality of life? I know it would mine! Anyway, to answer your question, I know nothing about a "new pill". Please let us know!
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
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14 years 6 months ago #13777 by kmputman
Replied by kmputman on topic Re: New Treatments
My doctor has a reason for every medicine:
Danazol- I'm a young, 21 year girl who doesn't need the side effects of testosterone
WinRho- too many deaths
Promacta- liver and bone marrow fibrosis
Splenectomy- I'm too young
Rituxin- can't remember the excuse but I'm sure it has to do with people dying.

I understand the concern but you are right, IVIg wipes me out for 48 hours. I'm a graduate student with a job doing research for the federal government, so this has definitely impacted my way of life. I figured that since I'm staying on IVIg for a while, getting a port could really help but, like I said, this 'new pill' is supposed to change everything. The only thing I could find was a pill that is still in the last testing phase. What gives?
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 6 months ago #13781 by Sandi
Replied by Sandi on topic Re: New Treatments
The only new pill that I'm aware of is Promacta.

My suggestion - get a new hemo. There are people who are much younger than you who have tried the above treatments with success (children). IVIG every two weeks would definitely not fit into many lifestyles. All treatments have side effects or risks, but they can also work well and be less invasive time-wise.
14 years 6 months ago #13784 by
Replied by on topic Re: New Treatments
Can't really respond to you regarding treatments but I did want to mention that having a port really is not a good idea unless it's absolutely necessary. I guess that will vary with everyone but there are so many risks to having something in your body like that that is a direct line into you if you get any infection at all. And that happens a lot (I saw it way too many times). I would have to second getting a new hemo to at least explore what your options are in a real way and not with someone who isn't even willing to discuss it.

patti
14 years 6 months ago #13788 by
Replied by on topic Re: New Treatments
What Sandi said: The new pill is Promacta and find another hematologist. After 6 years, he/she should have a better handle on your treatment than they seem to. Making you suffer through this while refusing to use proven treatments is simply not cool.
Besides Promacta, the other new drug out there is an injection called Nplate. Both were specifically designed for ITP treatment. IIRC, The FDA just fully released Promacta this month.
I've been on Promacta for a little over a year now.....it works well for me. Promacta keeps my count around 50k without the nasty side effects of stuff like Prednisone.
BTW: I would not get a port installed solely for ITP.
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14 years 6 months ago #13874 by kmputman
Replied by kmputman on topic Re: New Treatments
The port has it's own reasons other than the ITP. I went to my doctor yesterday for IVIg and he just told me that 'when a new pill comes out, he will let me know.' I was very confused by this as two weeks ago he told me that there is a new one coming out in a couple months. I agree with y'all that I should at least get a second opinion. I'm sure many of y'all know that IVIg is a difficult and expensive treatment to have every other week, so I would at least like to try something else!
14 years 6 months ago #13902 by
Replied by on topic Re: New Treatments

he just told me that 'when a new pill comes out, he will let me know.'

Be sure to let us know when he lets you know. A new treatment option is always welcome, just haven't heard of a 'new pill' in the works, much less due to come out soon. These things take years to develop and tons of money. They usually don't release quietly. :)
With all due respect, it sounds kind of hoaky to me. I'd be looking for another hematologist quickly.
.
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14 years 3 months ago #16617 by maranda
Replied by maranda on topic Re: New Treatments
Hey Katie,

I would definitely suggest finding another hemo for a second opinion. My boyfriend, trey, had a group of doctors that tried a few different avenues, like prednisone, cyclosporine, ivig, and rituxin. After going through several nightmares with them,his doctors just wanted to jump to sleenectomy and not discuss anything else. Not liking the idea of a suppressed immune system with two small children, we decided to seek a second opinion. The new doctor introduced promacta which has been working great for him. His first group of doctors begged him to come back and promised to go with promacta. Although he went back the second opinion was great for him bc without it his doctors would have never opened their minds to it. Bottomline when u have a feeling u aren't getting the best advice or treatment, definitely look elsewhere!
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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.


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