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Winroe?

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13 years 10 months ago #24949 by debrasla
Winroe? was created by debrasla
my 22year old son is set to go in hospital Saturday and get Winroe treatment. Anyone ever had this? What should we expect? His platelets were 9000 today, he was doing so well after the Rituxan treatment in Feb and last week his platelets were 10,000 and today 9000.
Any advice or encouragement would help. He is doing it on Saturday because he is off and he has to work on Sunday and doesnt want this ITP to interfere with his new job as a correctional officer.

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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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13 years 10 months ago #24950 by Sandi
Replied by Sandi on topic Re: Winroe?
Debra:

Most people do okay with Win-Rho. I had six treatments and at the time, they just did it as a five minute IV push. I think it's an hour long IV now. Anyway, I just ran to the doctors office on my lunch hour and got the push, then went back to work. I felt a little fluish, but just took some Tylenol.

Some people have a worse reaction, but they give pre-meds now to try to avoid that. I hope he does well and gets a good response.
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13 years 10 months ago #24952 by debrasla
Replied by debrasla on topic Re: Winroe?
They told him it will be a 9 hour treatment and has to be done in the hospital and that is his day off, so doctor arranged it for him. We have a great hematologist and staff there. My son is very angry right now though.

He is getting tasered next week as part of the training for the correctional officers. I think he should tell his doctor, but he was very upset when I mentioned it, so I guess I will just keep my concerns to myself since he has enough to worry about.

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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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13 years 10 months ago #24953 by Sandi
Replied by Sandi on topic Re: Winroe?
9 hours for Win-Rho? I've never heard of that.

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13 years 10 months ago #24959 by Ann
Replied by Ann on topic Re: Winroe?
They are supposed to monitor the patient for 8 hours after giving it, that'll be why it's so long. Good luck to your son. I had it once and had no side effects at all.
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  • Melinda
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13 years 10 months ago #24961 by Melinda
Replied by Melinda on topic Re: Winroe?
I had one WinRho back in 2002 - it was an IV, no problems. Decent counts since.

Good luck to your son!

Sandi maybe that is something new since we had WinRho.

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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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13 years 10 months ago #24968 by Sandi
Replied by Sandi on topic Re: Winroe?
I guess. Things have sure changed. It was wham bam thank you ma'am when I had it. I wouldn't have the patience to wait around for 8 hours.

Good luck!
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13 years 10 months ago #24975 by Ann
Replied by Ann on topic Re: Winroe?
There hadn't been the black box warning then. Now it's different.

www.winrho.com/

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13 years 10 months ago #24976 by crystal lee
Replied by crystal lee on topic Re: Winroe?
My little guys Dr. only kept his about 2 hours. My son was 18 months when he got it, he didn't have any effects that we are aware of. He acted just fine, ate, slept, played well after. The nurse wanted to do treatment and let him go, Dr said NO!! Which I knew we were suppose to stay 8 hours I was not comfortable leaving 5 minutes after..Well anyway, Sorry what I was saying is...My little man handled it well, sadly did not respond though he was at 0 next count only 3. Good luck!!

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13 years 9 months ago - 8 years 8 months ago #25718 by sissykidd
Replied by sissykidd on topic Re: Winroe?
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13 years 9 months ago #25722 by Ann
Replied by Ann on topic Re: Winroe?
sissykidd, why not try WinRho again? You might get a long remission from it.
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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.