Long remissions after IVIg?

Hello! I'm new to this site but not new to ITP (I was diagnosed in 2004 when i was 7). I hope I'm posting in the right section.

My question is how common is it for chronic ITP to go into remission after IVIg and can the response to it maybe predict the chance of a longer remission?

I was lucky to have 2 long remissions, one after using prednisone in 2004 (lasted 9 years) and a 4.5 year remission after using IVIg in 2013. Unfortunately now they're sure it's chronic ITP since I've been struggling with my counts since november 2017 (on prednisone for 3 months, dose-dependent, followed by 2 months of normal counts). I recieved IVIg 7 days ago (a 2-day infusion) and my count rose from 3 to over 400.
Have any of you had luck with IVIg stabilizing your counts for more that 4 weeks or did I just get lucky in 2013? Does my good response to it mean I maybe have a better chance of a successful splenectomy (if my ITP turns out to be stubborn in the future)? I always thought I just dealt with acute ITP twice and now I'm kinda scared of living with it for the rest of my life (it's also annoying atm because the clinic visits interfere with my uni classes and sometimes with exams). Hope y'all are doing alright! :silly:

Neve, you are very lucky to be so sensitive to these drugs.
IMHO, in general, those that are sensitive continue to be so but sometimes to a lesser extent - even if a second ITP antibody comes into play. A couple things come to mind.
- has your doctor mentioned trying both steroids and IVIG together?
- you know, some sensitive people can do well by just taking an occasional Promacta pill. Maybe once a week or so. Just enough to keep one in remission.

Good luck.

Thanks for the reply!
I actually refused to take steroids due to side effects so my hemo put me on IVIg instead..

As for the Promacta pills once a week, that's a great idea, thank you! I'll definitely discuss it with my hemo if my counts fall under 10 again. Hopefuly there won't be a problem with my eligibility to take it, the list of meds that require special permission to prescribe says that you need to have a failed or contraindicated splenectomy for your hemo to put you on it, because the government pays for it (public health care sucks sometimes)..

She did mention putting me on Imuran once and I haven't read much about it (if I'm being honest, Promacta sounds far more promising to me). Does Imuran have less severe side effects in people with ITP compared to prednisone?

And as an unspoken Internet rule for non-native English speakers, sorry for my English :silly:

Neve24 wrote: Thanks for the reply!
I actually refused to take steroids due to side effects so my hemo put me on IVIg instead..

As for the Promacta pills once a week, that's a great idea, thank you! I'll definitely discuss it with my hemo if my counts fall under 10 again.

Right. You could get another nice long remission from IVIG.

Hopefuly there won't be a problem with my eligibility to take it, the list of meds that require special permission to prescribe says that you need to have a failed or contraindicated splenectomy for your hemo to put you on it, because the government pays for it (public health care sucks sometimes)..

Just like you refused steroids I think you can refuse splenectomy as well. I gave the reason of 'age' to not having a splenectomy but you'll need something else, LOL. Maybe something like wanting to exhaust drug options first.

She did mention putting me on Imuran once and I haven't read much about it (if I'm being honest, Promacta sounds far more promising to me). Does Imuran have less severe side effects in people with ITP compared to prednisone?

I talked with my hemo about Imuran a few weeks ago (had meant to ask about MMF). After listing scary side effects, she reminded me Promacta and Nplate are safer. I think there is an unwritten guidance to only recommend something like Imuran or MMF if the patient can/is having bleeding issues. That is not an issue for me.

And as an unspoken Internet rule for non-native English speakers, sorry for my English :silly:

There are accounts here on PDSA forum of those who take/have taken such a low dose of Promacta. There aren't any names that immediately come to my mind. Others may recall.

Hello Neve24 and Hal9000,
This is my first time responding to the discussion boards. This has been my experience.. My first time with ITP was 2011 (ER 6,000 platelets) and I responded with prednisone only and had a 2 year remission. Then in 2013 I was in the ER and admitted for one week starting with 800 platelets and prednisone alone was not doing it. Last two days they gave me IVIG and boosted me over 200,000 platelets and was in remission 4 years. April 23, 2017 in at 3,000 platelets. Hemo tried right off the bat prednisone first day, not much, then 2nd day prednisone and IVIG and it boosted me to 30,000 by second day and released on 3rd day. Hemo kept me on prednisone out of hospital at 60mg but I dropped over the weekend to 9,000. Then she bumped me up to 80 and had me try Rituxan (1 transfusion each week (4 weeks). By end I was at 220,000. Last check was one year since and I was at 178,000. So I have been so far 1 year in remission. I'm excited to go to the conference, first time. I think the first time in 2011 and second time even, my hemo and I were hoping it was just a fluke/ one time thing and it won't ever happen again. Now with the third time, I'm delving into more research and so thankful for these boards.

Hoping for all of us and wishing good luck always to everyone!

Neve:

It's unusual for IVIG to last more than a few days or weeks. There is no way to know what sort of response you'd have now. ITP antibodies can change in time which can change treatment responses.

Having chronic ITP does not mean that you will have it for life. Remissions are always possible.

Oh wow. It must be 'rare ITP response day' and I didn't know it.
Neve's remissions are very rare and then mhausser comes in with another rare one. Was shown to have a strong steroid response on first ITP occurrence. Was shown to have a strong IVIG response on second ITP occurrence. Therefore must be row 1 in my ITP table.

But, lost steroid and IVIG response at third occurrence. Indication of a second antibody (row 2a) now in play. Got remission from Rituxan anyway.

Welcome mhausser. Perfect story timing.

Thank you for the welcome! Yes, it's been interesting for sure. I like your chart. I've also been gluten and dairy free. This past year I've added acupuncture to the mix. I do know each occurrence there was lots of stress. I also did not stick to my gf and dairy free ways due to letting things slide the third time with the stress load I was dealing with. Now it's all eat the right things, sleep well, do whatever I can by taking a holistic/homeopathic route if possible.
A fantastic day to you all!
Mira

Oh that's a nice tool, thanks!! I just had my blood drawn and I'll update you all if my count is trending down or not soon.

Hey mhausser, glad to know I'm not the only one!
It sure can be difficult to be thrown into treatments just as you finally forget about ITP, hope we both stay lucky with our counts.
I also don't eat gluten but so far it hasn't really changed anything except that I've lost weight bc of eating less bread and processed foods :laugh:
I feel like stress definitely can be a trigger for us... in 2013 I lost 30lbs prior to my counts dropping and even more in 2017 (with some other bad stuff happening). I guess we need to be really carefull about our mental health.
I wish you all the best luck!

Thank you Sandi, I didn't know that!
I thought it was for life, oops... Definitely makes me feel easier to know that it's not.

The thing about antibodies is a bit scary, especially while looking at Hal9000's chart, since people with certain antibodies can develop refractory ITP.. but I guess now is not to time for me to worry about that.

I've read somewhere that you've been in a remission for years now (hopefully still are?), I was so glad to hear that, since I remember reading your posts and replies back in 2013. :kiss:

Just got my cbc results back, platelets are 580, so they're still climbing, my bone marrow is in 5th gear apparently :silly: If i remember well, they went up to 370 in 2013 but my counts weren't tested as often as now since I recieved next generation IVIg this time (some german clinical trial) so they might've been above 400 for some time then too.. Crossing my fingers for platelets to stay above 100.

Wishing you the best of luck! Really wishing each and everyone of us good health!

You've had a great response to IVIG so far! You seem to be one of the lucky ones.

Yes, I'm still in remission. I have been since 2005 after struggling with ups and downs for 8 years.

Note to self. mhausser's doctor, on loss of steroid and IVIG response, cranked up Pred to 80mg while taking Rituxan. In either row 2 treatment case, steroids combined with either Rituxan or Promacta (user Fender), steroids seemed to be the enabling lever for a quick response.

Neve24, 580? Oh my. Did the doc recommend a low dose Aspirin? Do you recall how many weeks it took last time before counts leveled off?

Nope, no idea unfortunately.. I was 16 and didnt care enough about my ITP back then to keep track.

I can't take anything rn because they need to record all of my counts for the clinical trial I'm on ( clinicaltrials.gov/ct2/show/NCT02859909 ), I'm pretty sure they're gonna level out in less than a month though, they're never this high.
I noticed this time that when my counts drop they drop ~15k a day so I definitely won't know if I'm in remission for another month or 2. I'll update everyone then I guess

That is great to hear, Sandi!! :laugh:

a quick update
it's been 2 and a half weeks since ivig and platelets are at 360 :lol: 580 was definitely the peak number

Thanks for the update...360 is a great number : )