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TOPIC: ITP Diagnosis 5/23/2019

ITP Diagnosis 5/23/2019 1 week 1 day ago #66964

  • MelA
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Hal unfortunately Audi passed away a while back - it was probably before this new & improved forum was loaded. Yes - Tamar.

Not sure if WinRho would be the 1st treatment if I needed to treat again - would all depend on what my insurance allows.

No reason to test for Mono antibodies.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP Diagnosis 5/23/2019 6 days 15 hours ago #66973

  • midwest6708
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  • ~ Janet ~ Diagnosed Sept. 08
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The main thing want to say is... If you're feeling reluctant about Rituxan, listen very carefully to those feelings.
For one thing, it doesn't have specific FDA approval as an ITP treatment.
Secondly, it's far from an innocuous drug. For that reason alone, I resisted taking it for 5 years after my doctor recommended it. When I finally relented, I still had the same nervous qualms. Now that it's done, I'll forever regret I didn't listen to my gut feelings. Even if your doctor tells you she's never seen a major side effect, that means nothing. Mine told me the same.
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ITP Diagnosis 5/23/2019 6 days 14 hours ago #66975

  • ecoclayton
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Another day another Dr appt. Today 6/11/19 platelets were up to 66 from 54 on 6/8/19 at 60 mg pred. I refused the Rituxan and told nurse I want to look at Promacta option. I go back Monday to see Dr, but I am hoping that numbers will be up or stable. She also lowered me to 50 mg pred. The drop in pred from 70 to 60 has been tough this week, so I hope I can handle 50 mg. I also met another Hemo today and have an appt set up for Aug 5th with her.

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ITP Diagnosis 5/23/2019 6 days 11 hours ago #66976

  • CindyL
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I couldn't get NPlate or Promacta so I did do Rituxan. Been in remission from it since 2011. No major issues, off all ITP meds. I'm not sorry I did it. But, everyone is different.
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ITP Diagnosis 5/23/2019 5 days 23 hours ago #66977

  • mrsb04
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  • Diagnosed in 2014. I'm also a renal specialist nurse
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When you say the drop in Pred was tough what do you mean? There should not be any withdrawal symptoms at this stage of pred tapering

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ITP Diagnosis 5/23/2019 5 days 21 hours ago #66978

  • ecoclayton
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mrsb04,
When I dropped Pred from 70 mg to 60 mg I felt much more tense and emotional and my hands were jittery. It seemed to last for just a day or so. Maybe I drank a little too much caffeine or something. I also had a really busy day with 2 Dr appts and 2 other work appts so that may have been a factor as well. Dr wants me to reduce to 50 today, but only 3 days at 60 then to 50 seems too fast so I may spend another day at 60.

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ITP Diagnosis 5/23/2019 5 days 17 hours ago #66979

  • mrsb04
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I'm surprised at withdrawal symptoms from that sort of dose. I never had any problems until I got down to 15mg/day.

These are the latest guidelines from uptodate.com
●5 to 10 mg/day every one to two weeks from an initial dose above 40 mg of prednisone or equivalent per day.
●5 mg/day every one to two weeks at prednisone doses between 40 and 20 mg/day.
●2.5 mg/day every two to three weeks at prednisone doses between 20 and 10 mg/day.
●1 mg/day every two to four weeks at prednisone doses between 10 and 5 mg/day.
●0.5 mg/day every two to four weeks at prednisone doses from 5 mg/day down. This can be achieved by alternating daily doses, eg, 5 mg on day one and 4 4mg on day two.
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ITP Diagnosis 5/23/2019 2 days 14 hours ago #67014

  • ecoclayton
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  • Diagnosed with ITP 5/23/19
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Woohoo, today's count was 102 up from 66 just 4 days ago. I started taking 1000 mg Vitamin C 3 days ago and am curious if that could be it? I haven't made any other changes so we will see what counts come in at later this week. I am currently at 50 mg pred and dropping to 40 tomorrow. It seems withdrawal symptoms were either in my head or caused by something else because I am not having any now.

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ITP Diagnosis 5/23/2019 2 days 11 hours ago #67016

  • MelA
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Good count - happy for you. Personally, if vitamin C were the answer I'd have been cured years ago :) But who know.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP Diagnosis 5/23/2019 13 hours 42 minutes ago #67029

  • Hal9000
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That 102 sounds really good. I'm not trying to rock the boat here, but let me ask a question. Hopefully consideration of the answer will be instructive.

If one's immune system will eventually figure out the problem and remission becomes possible, but it takes a year to happen, which would one rather do? Take (high dose) steroids for a year, or, take Promacta for a year?

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ITP Diagnosis 5/23/2019 6 hours 37 minutes ago #67034

  • MelA
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Hal to answer your question - I would take neither, unless I was outright actively bleeding, as you are promising a "cure" in a year when my immune system figures out the problem & stops the antibodies being made and puts me in remission. [not to mention if one's immune system could ever really "figure out the problem" then it could figure it out for any & all autoimmune disorders and I'd be one happy camper to get rid of the 3 I have!!] But I am serious about my answer - if I knew I would be better in a year I wouldn't take a thing unless I'm bleeding.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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