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Plasmapheresis?

  • libelder
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  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
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7 years 6 months ago #63044 by libelder
Plasmapheresis? was created by libelder
They want me to consider plasmapheresis. Anyone know anything, good OR bad? I'm very leary of the Rituxin now due to the Hep B concern and my realization of who screened me for it in 2010- first doc I ever fired for incompetence, Yipes. Now they "can't find records for me prior to 2012"- the screening was done in 2010, or at least they SAID SO at that time. Grrrrrrrr. So, plasmapheresis, anyone?
  • 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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7 years 6 months ago - 7 years 6 months ago #63045 by Sandi
Replied by Sandi on topic Plasmapheresis?
Lib, according to everything I've read over the past 19 years, plasmapheresis does not work for ITP. It is used for TTP, but not ITP. It's about as temporary as a platelet transfusion and that's a heck of a procedure for little to no result. I have never see anyone use it here.
  • 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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7 years 6 months ago #63046 by Sandi
Replied by Sandi on topic Plasmapheresis?
Rituxan would be of little use to you now anyway since it can take 4 to 12 weeks to begin to work.
  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 6 months ago - 7 years 6 months ago #63051 by mrsb04
Replied by mrsb04 on topic Plasmapheresis?
Lib
I have many years experience of performing plasmapheresis especially for TTP & other auto immune diseases that affect the kidneys.

To the best of my knowledge it does not work in ITP. I would want conclusive proof it would work before i tried it. I mentioned it at diagnosis and was told most firmly it was a none starter. I've just spent an hour searching through Eduserve Athens and I can't find anything at all other than it is improbable it will work

It's an invasive treatment and intensive treatment that can go on daily for up to a fortnight for some conditions.
You'll need a large line either in your neck which will be visible or in your groin which will render you unable to walk about freely due to risk of bleeding.
If you google (images) for temporary haemodialysis catheters you'll get the gist.
The line itself is a huge infection risk especially if in the groin. Bugs love warm plastic.
You will be hospitalised. You will be receiving a lot of blood products so there is always a transfusion reaction risk.
It strips you of calcium and ruins your clotting factors so you'll more than likely have to get Fresh Frozen Plasma infusions post each treatment and probably calcium infusions too.

Anne

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  • libelder
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  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
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7 years 6 months ago #63055 by libelder
Replied by libelder on topic Plasmapheresis?
Well, even this morning's doc said the same things, that it is for DIRE RESCUE only and lasts about as long as it is being done. Not really a good option, I am so appreciative of all your good info. Thank you all!

Good news is I woke up with 23 platelets! Looks like they are not going to give more IVIG, STILL waiting my viral load number for more Rituxin but monitoring my happy liver, so that's good. My last Hep B test was 2007 and SOME "at risk behaviors", a boy I dated has since died of I know not what but he MAY have been risky, so the concern is there. Today is the last day of steroids, they want at least one more good count AND a plan before I'm released so not before tomorrow, anyway. So I'll decline plasmapheresis, should it come up again, and keep keepin' the faith I guess. Thank you all again.
  • 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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7 years 6 months ago #63056 by Sandi
Replied by Sandi on topic Plasmapheresis?
I'm glad your counts are better today, Lib! Good news.
  • libelder
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  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
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7 years 6 months ago #63065 by libelder
Replied by libelder on topic Plasmapheresis?
And back down to 16 this morning. Insert serious cussing here, gah! Still awaiting the viral load test, that's a long and stupid story, too. Here's my current quandary- as I recall, the Rituxin they're wanting to use is likely to take a couple of weeks to show any result, isn't that usually true? So let's pretend I get it, and my numbers don't go up... I can't sit in here bouncing between 0 and 20 for a few WEEKS while we wait to see a result, so what's next? What the heck is next? I've already failed all the usual stuff, even the steroids aren't keeping me up and now the docs feel like they've maxed them out and aren't willing to give me more (I am FINE with that!) , but.. Now what? The thing is that right now, I'm not bleeding, so... Jeez the thought of just returning to not treating and waiting to see what happens does NOT make me happy at all. I never used to fear, but that damned subdural bleed just changed everything. Not lovin' fear at all. I've been here a week already and nothing's changed, nothing has improved in any meaningful way. Grrr. Help?
  • 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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7 years 6 months ago #63081 by Sandi
Replied by Sandi on topic Plasmapheresis?
Yes, Rituxan can take 4 to 12 weeks to work. I've seen studies where a Rituxan/Dex combo show better success.
  • libelder
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  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
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7 years 5 months ago #63207 by libelder
Replied by libelder on topic Plasmapheresis?
That's longer than I thought, good to know. Any details on the addition of dex? I get my 2nd consecutive Rituxin on Wed., I'd like to broach this with the docs before that.
  • 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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7 years 5 months ago #63210 by Sandi
Replied by Sandi on topic Plasmapheresis?
There are other studies, but this one came up first.

journals.lww.com/oncology-times/Fulltext/2009/02101/ITP__Rituximab_Dexamethasone_Combo_Effective_for.3.aspx

They are mostly talking about adding Rituxan to Dex treatment and not the other way around, but I don't see why that makes a difference. It was the combo that did the trick for some.