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New to all of this 2 years 1 week ago #59347

  • Sandi
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Your wife's cousin probably didn't have as many options when she had ITP. Things have changed a lot. However, there are some people who do manage ITP with IVIG like that. If the response lasts that long and they don't mind the IV's, it's not a bad option. Some pregnant women do this because it's a safe treatment during pregnancy. There's nothing wrong with using a treatment until you get tired of it or have remission. Most do not have a response that lasts that long though. I never did IVIG because I didn't want to miss work all the time. Everyone has different goals.

I suspect that if someone has a few rounds of IVIG and counts stay up, they were probably acute cases.

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New to all of this 2 years 1 week ago #59353

  • mrsb04
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My haemo isn't at all happy giving IVIg to Promacta patients , she told me it would only be used in an absolute emergency as increases risk of clotting.

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New to all of this 2 years 1 week ago #59376

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
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Sandi wrote: Your wife's cousin probably didn't have as many options when she had ITP. Things have changed a lot. However, there are some people who do manage ITP with IVIG like that. If the response lasts that long and they don't mind the IV's, it's not a bad option. Some pregnant women do this because it's a safe treatment during pregnancy. There's nothing wrong with using a treatment until you get tired of it or have remission. Most do not have a response that lasts that long though. I never did IVIG because I didn't want to miss work all the time. Everyone has different goals.

I suspect that if someone has a few rounds of IVIG and counts stay up, they were probably acute cases.


Technically, I'm still defined as acute. :-D

Don't worry, I'm not hanging my hopes on that technicality! I still figure if I can do something relatively safe, why not try it. Might not get me anywhere, I recognize that.

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New to all of this 2 years 1 week ago #59377

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
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Had my last visit with my previous hema today. Count was down to 30, while on 65mg Prednisone. I wasn't surprised. I noticed a single tiny mouth blister.

I'm not sure how to read my Prednisone response, relative to the idea of possible trying Rituximab... I'll speak to it with my new hema, but I was curious to get other's thoughts. Technically, both times I ramped Prednisone, I "responded". A sustained dosage apparently does nothing for me. IE - my body seems to get used to what I'm taking, and then laughs at the steroid. Perhaps Decadron would've been a better route.

Anyone have any thoughts on this? I know often times there really is no good predictor of success, but shared experiences are welcome.

Side note, I'll be weening a tad faster on Prednisone, 5mg every few days, since there doesn't appear to be a good reason to go slowly. This makes sense to me, but I'll throw that out there too. does that make sense to everyone else?

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New to all of this 2 years 1 week ago #59379

  • ytsejam02
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EmilyK wrote: Jay
It is a tough journey. It is not uncommon for it to take a year to find a good treatment or get to some form of remission. We are here for you! If you decide to come to arizona for the conference let me know. I will be there and am happy to talk to you as much as you want. I would have no spleen if not for this group. I owe alot to sandi and everyone else who listened to my rants and craziness and I am here to pay it back. Hang in there.


Hi Emily,
I just booked my flight, hotel, and registered. I'd love to meet up and talk. I can send you my cell phone #, or email address via PDSA's messaging, whatever you prefer.
I look forward to meeting you!
Jay

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New to all of this 2 years 1 week ago #59380

  • Sandi
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Jay:
As far as platelets, a fast taper might seem to make sense. You might want to have a back-up plan in place though in case counts crash. You have to also consider your adrenals. Tapering too fast while on a high dose can cause withdrawal which is not pleasant nor is it safe. If you had only been on Prednisone for a few days that plan might be okay, but you've been on steroids for a few weeks. Withdrawal side effects can be worse than the high doses. Was this your Dr.'s idea?

You're right that there isn't much predictability regarding treatment success, but I have observed that those who have a good response to Prednisone tend to have a good response to Rituxan. Those who don't, don't. Maybe not all the time, but enough for me to have noticed the correlation. Hal seems to be right about that one, but I can't vouch for adding IVIG into the equation because it hasn't been used enough for me to make that observation.

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New to all of this 2 years 1 week ago #59381

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
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Sandi wrote: Jay:
As far as platelets, a fast taper might seem to make sense. You might want to have a back-up plan in place though in case counts crash. You have to also consider your adrenals. Tapering too fast while on a high dose can cause withdrawal which is not pleasant nor is it safe. If you had only been on Prednisone for a few days that plan might be okay, but you've been on steroids for a few weeks. Withdrawal side effects can be worse than the high doses. Was this your Dr.'s idea?

You're right that there isn't much predictability regarding treatment success, but I have observed that those who have a good response to Prednisone tend to have a good response to Rituxan. Those who don't, don't. Maybe not all the time, but enough for me to have noticed the correlation. Hal seems to be right about that one, but I can't vouch for adding IVIG into the equation because it hasn't been used enough for me to make that observation.


It was the previous Dr's idea to decrease 5mg every few days. I had been on the 70mg dose for 17 days now, which of course, was up from 10mg from the previous fast taper. So 6 weeks of Prednisone in total, 24 days of that at 70mg. The original plan was 5mg every week. And that's how I had left it with my new hema. So, really doesn't phase me to go slowly. Aside from being a little tired, I'm feeling alright. I should just stick with what I agreed to with the new hema, since he's the one providing the care now.

I'm just hoping the lack of Prednisone response isn't some broad indicator that a most of the drugs won't work for me, or something along those lines.

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New to all of this 2 years 1 week ago #59384

  • Sandi
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ytsejam02 wrote: I'm just hoping the lack of Prednisone response isn't some broad indicator that a most of the drugs won't work for me, or something along those lines.


Nah. You've only just begun. Many people do not respond to Prednisone, but that doesn't make them refractory to all treatments.

Doctors always seem to push that fast taper. It's like some of them are just not well-educated about this drug. My doctor told me that NONE of their patients on Prednisone ever had the side effects that I did. Ha, nearly everyone here has; they were very common. He also told me that Prednisone causes potassium to go up. Every single article I've read online says otherwise. It blew my mind because not only do ITP patients use Prednisone, cancer patients do too, and NONE of them ever had side effects. All you can really do then is taper and if you start to feel too horrible, slow it down. Your body will tell you.

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New to all of this 2 years 1 week ago #59389

  • mrsb04
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Once you get down to 10mg a day you must taper more slowly maybe 1mg a week to 7.5 mg then slow it down even more. Tapering steroids quickly below that dose could kill you

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New to all of this 2 years 1 week ago #59392

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
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I'll stick to the original plan of 5mg per week taper.

It'll be a while before I get to 10mg... looks like August 20th right now.

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New to all of this 2 years 1 week ago #59400

  • momto3boys
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ytsejam02 wrote: I'll stick to the original plan of 5mg per week taper.

It'll be a while before I get to 10mg... looks like August 20th right now.


Good luck with your taper. Don't get discouraged. You have literally tried only one treatment, and it's one that doesn't often result in any kind of remission. There are many things to try next, and most of the people here are prednisone failures as well :lol:

Failing at prednisone doesn't indicate that other things won't work for you. Best of luck in deciding what you'd like to try next!
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New to all of this 1 year 11 months ago #59532

  • ytsejam02
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Just thought I'd give an update:

It was such a nice two weeks of no appointments!! It did take a little longer to get the IVIG scheduled than I thought, but I had my first round this morning, with two more scheduled for the next two days. The transfusion went fine, best I can tell. No side effects during, or currently.

Platelets were 12. Not a surprise at all, as I was getting some bruises here and there and a few random, small spots of purpura.

So, just going to keep plugging along. Down to 55mg of Prednisone. Obviously doing nothing for me... can't wait to get off the stuff, but going to be a while still.

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New to all of this 1 year 11 months ago #59533

  • Sandi
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I'm glad things have been...uneventful. The main side effect to watch for after IVIG is aseptic meningitis. It's the most common one. It sounds scary and is not pleasant, but does resolve in a few days. It causes a severe headache and possible vomiting. Hopefully you won't have to experience that one.

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New to all of this 1 year 11 months ago #59537

  • Hal9000
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Hope everything goes well Jay.

As I recall they gave me 30 grams of Ig for 5 days. Do you know? Are they giving you 50 grams over 3 days? I was reading that most folks have a peak in response 3 days after last treatment. I think they measured mine after 5.

When I was researching IVIG I found some old studies from the 1990s. Back then apparently the thinking was that if ones counts were above about 50 after 5 weeks there was a good chance of putting someone into remission using repeated IVIG treatment. That's a pretty high bar. Just a FYI...
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New to all of this 1 year 11 months ago #59542

  • ytsejam02
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Hal9000 wrote: Hope everything goes well Jay.

As I recall they gave me 30 grams of Ig for 5 days. Do you know? Are they giving you 50 grams over 3 days? I was reading that most folks have a peak in response 3 days after last treatment. I think they measured mine after 5.

When I was researching IVIG I found some old studies from the 1990s. Back then apparently the thinking was that if ones counts were above about 50 after 5 weeks there was a good chance of putting someone into remission using repeated IVIG treatment. That's a pretty high bar. Just a FYI...


Thx Hal!
It is 30 grams over 3 days, based on weight. Good to know peak comes after, I wasn't sure. I know they're going to do a CBC each day.

My bar is set pretty low at the moment. :-) I figured my count was going to be single digits, so hey, 12 was higher! That being said, my mental state is in a better place (I'm still working on it), so while I'm hopeful, I'm also realistic. I think, like everyone else, I'm looking for something that's the least amount of toxicity that will work with my lifestyle. I certainly can't do this 3x a week every 2 weeks. But if I can get some kind of response that allows me to space it out? Maybe that'll work. Time will tell.

Again, thx for the info and well wishes!

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New to all of this 1 year 11 months ago #59561

  • EmilyK
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Jay
I sent you an email last night via the pdsa website with my cell number. I look forward to hearing from you.
Emily
Diagnosed Jan 2015 at age 50 with 13,000.

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New to all of this 1 year 11 months ago #59692

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
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Sorry Emily, some how I missed the email with this update. I responded to you message on pdsa. And obviously you know I've texted you. :-)

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New to all of this 1 year 11 months ago #59694

  • ytsejam02
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It's been a while, thought I'd give another update.

I did the IVIG treatment a little over 2 weeks ago (6/19-6/21). No issues. Count on the 27th was 177. Was still on 50mg Prednisone as well. Count this past Wed dropped to 73 (40mg Prednisone). Not at all surprised. Going to continue dropping Prednisone at a rate of 10mg per week for the next couple of weeks. And currently thinking a "booster IVIG" sometime the week after next. Those were my hematologists words. Apparently that would be a single day. Not sure what that'll buy me, but going to give it a shot and see where this leads. Also been thinking about the Dexamethasone since the only real time I responded to the steroids is when this all started and I obviously wasn't on them, and when I dropped to 10 and shot back to 70. Wondering if I wasn't on Prednisone, and took random doses of Dexamethasone, if that would cause a similar boost.

Anyway, still figuring things out and still on the road to getting off the roids.

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