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Treatment Decisions post conference

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15 years 7 months ago #6026 by barrelgal
Treatment Decisions post conference was created by barrelgal
I've made some decisions on my treatment after attending the PDSA confrence in Vegas this past weekend (which was great!)
My main decision is that I'm not going to be using Rituxan again. I've only ever gotten partial responses to it (up to 70- 80k from 20ish) and after 3 times have not recieved a prolonged remission (counts rise then stedily fall for several months until re-treatment.) In one of Dr. Liebman's breakout sessions he said that patients that see that see a partial response to Rituxan don't get remission from continued use and should move on. What I haven't fully decided is what my next step is. I want to get tested for Anti-thyroid antibodies as he said 50% of his ITP patients also develop thyriod disease and some can see an improvement in counts from thyriod medicine. I'm more strongly considereing a splenectomy but the thought of it still scares me!

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  • Sandi
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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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15 years 7 months ago #6037 by Sandi
Replied by Sandi on topic Re: Treatment Decisions post conference
Wow - 50% seems like a very high percentage. We sure don't see that here.

Good luck finding a treatment.

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  • Melinda
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15 years 7 months ago #6047 by Melinda
Replied by Melinda on topic Re: Treatment Decisions post conference
He wouldn't want me as his patient because I would knock his percentage down - my count didn't come up.

That 50% does seem high.

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Platelet Disorder Support Association

Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003  |  pdsa@pdsa.org
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.

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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.