Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC:

ITP back after 10 year remission- any similar experiences? 4 months 1 week ago #71662

  • mjocusa
  • Offline
  • Posts: 29
  • Thank you received: 8
I wanted to share an experience and see if anyone has had a course of ITP similar to what my dad has experienced.
In 2011-2012 he had a severe primary ITP where he was hospitalized for 47 days with numbers between 1-20 (here is the forum post on that odyssey) . After finally getting a good specialist at USC to weigh in and help his outmatched local doctors, he received a third line treatment of Nplate with azathioprine. This followed steroids/IVIG, Rituximab, the first two rounds of treatment showing little immediate efficacy. Following Nplate treatments he had a complete remission (with spleen intact) with numbers between 100-300 and no ongoing medication.

Fast forward to last week, 10 years later (at age 73). He had bruising, petechiae, and the telltale blisters on his tongue. At the ER his platelets were 5, although he did not have active bleeding. Learning from the last time we went down to Stanford hospital where he has had other procedures done for unrelated issues, knowing we wanted a top notch hematologist. They tried only one transfusion (instead of the scores he received in his first round of ITP), and a fairly typical treatment of prednisone/IVIG, followed by a shot of Nplate. After a 6 day hospitalization his number climbed from a low of 1 to 36 and he was out of the hospital.

Has anyone experienced a similar long remission only to have a recurrence of ITP? We are left like many to ponder the cause and hope for a similar remission, although we know it may be a tough road ahead.

Many thanks,
Mike

Please Log in or Create an account to join the conversation.

ITP back after 10 year remission- any similar experiences? 4 months 6 days ago #71673

  • Juliandrea85
  • Offline
  • Posts: 20
  • Thank you received: 4
Hi
Yes, i had a 10 years remission after spleenectomy in 2008
After those 10 years i had a heavy period in december 2018.

Itp maybe is life long. But there are long remissions for us to "rest". Keep trying different treatment options and keep the faith also

Please Log in or Create an account to join the conversation.

ITP back after 10 year remission- any similar experiences? 4 months 5 days ago #71675

  • CindyL
  • Offline
  • Posts: 1408
  • Karma: 1
  • Thank you received: 183
This year marks my 10 year remission anniversary. I know my ITP could rear its ugly head again, but I'm hoping not.
I've never been hospitalized and now just get blood tests every once in a while.

Please Log in or Create an account to join the conversation.

ITP back after 10 year remission- any similar experiences? 4 months 5 days ago #71677

  • MelA
  • Offline
  • Posts: 883
  • Karma: 2
  • Thank you received: 285
I was told ITP never really leaves - our immune system is now making antibodies that attach to the platelets and when those platelets go through the cleaning organs [spleen etc] they detect the antibodies and do their proper job which destroying the bad platelets. So - if that is the case then yes this can happen and one can have good counts and then bad counts. I was diagnosed in 1989 and still don't have a normal count - good but not normal - and in 2002 it hit the gutter after a tetanus booster. Platelets delivered via a platelet infusion will soon have the antibodies attached to them and be destroyed. IVIg doesn't put one in remission, at least my hematologist never had a patient go into remission from it.

I'm sorry your Dad is going through this. When is his next count?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

ITP back after 10 year remission- any similar experiences? 3 months 2 weeks ago #71707

  • mjocusa
  • Offline
  • Posts: 29
  • Thank you received: 8
Thanks all for the replies... Here is an update on my dad. After a 6 day stay at Stanford Hospital, he received his first dose of Nplate and his platelet numbers climbed from 1k to 35k and he was discharged. He received 4 weekly doses total of Nplate, which were tapered from 3-1.5mcg/kg where his numbers went from 36 at discharge to 451 currently. Most of the bi-weekly tests showing platelet levels in the 200s before creeping up to their current high. We are off next week to see the same specialist at USC he saw 10 years ago for his insights on a treatment plan, which has thus far been "wait and see".

Please Log in or Create an account to join the conversation.

ITP back after 10 year remission- any similar experiences? 3 months 3 days ago #71754

  • Vicky14
  • Offline
  • Posts: 9
  • Thank you received: 0
I had three episodes of ITP within 6 years (count 0, 1 or 2 ) hospitalised each time... been in remission now 21 years ...

Please Log in or Create an account to join the conversation.

ITP back after 10 year remission- any similar experiences? 2 months 1 day ago #71817

  • Kristi
  • Offline
  • Posts: 3
  • Thank you received: 0
I had ITP 16 years ago, with a platelet count of 2. They did IVIG, platelet transfusion and prednisone with a slow taper and I was one of the lucky ones, where my platelets held and remained in the 250-360 range for 16 years. Now, it's back. A sudden crash to less than 3 a few weeks ago, for no apparent reason, and I was hospitalized for days. The only thing that might be a reason is I developed Hashimoto Thyroid autoimmune disease and my Endo started treating me with Synthroid for the past couple of months. The hematologist said the Hashimoto possibly triggered the ITP again, but nobody really knows. I have the expected sense of devastation, as while I knew theoretically it could come back, I really thought after 16 years, it was a blip in my health history and hadn't given it much thought for the past decade. I've had the same therapy as my first go around and they will probably try to start tapering my steroids next week, as my platelets are back in the 300's at the moment. I'm terrified that I won't be as lucky the second time around. As a person with high anxiety and prone to panic attacks, this is a very challenging autoimmune disorder to have.  

Please Log in or Create an account to join the conversation.

ITP back after 10 year remission- any similar experiences? 1 month 4 weeks ago #71818

  • MelA
  • Offline
  • Posts: 883
  • Karma: 2
  • Thank you received: 285
Years back there was someone here who developed ITP after Graves Disease diagnosed.  Can't recall if it was due to the anti-thyroid meds or just good ole ITP.   I take Synthroid after Graves was taken care of and I went hypothyroid - Synthroid never has messed with my platelet count - but my TSH goes up and down and all around.
 
Take care - hope your count stays decent while tapering and off steroids Kristi!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: Kristi

Please Log in or Create an account to join the conversation.

ITP back after 10 year remission- any similar experiences? 1 month 4 weeks ago #71819

  • Kristi
  • Offline
  • Posts: 3
  • Thank you received: 0
Thank you MelA. It's strange because five years ago, I was on Synthroid for about 6 months, and then went off it and I didn't have any ITP relapse. I am really hoping it won't cause major issues with my platelets. My original ITP diagnosis (16 yrs ago) happened after a bad flu/cold virus I couldn't shake all winter. But this time around, I can't figure out any other health reason. I have been feeling run-down all summer and under stress and not sleeping, while taking care of my Dad (post 2-strokes for him), and also dealing with a chronically ill dog that prevents me from getting quality sleep. I keep hoping to find the cause of the relapse, but I guess with this disease, it's sometimes impossible to predict. I so hope to find some kind of remission again. I will never take another day of remission for granted again, that's for sure.

I hope everyone else who has relapsed also finds success with getting back on track. My heart goes out to all of you. It's so easy to feel alone when dealing with this. And the shock after a long remission is crazy. I am 22 days into my relapse and I still wake up feeling like this must be some kind of bad dream before reality sets in. 

Please Log in or Create an account to join the conversation.

ITP back after 10 year remission- any similar experiences? 1 month 4 weeks ago #71820

  • CindyL
  • Offline
  • Posts: 1408
  • Karma: 1
  • Thank you received: 183
My thyroid issues started long before my ITP.  Have been on Synthroid and Levothyroxin (which I am on now) with no problems.  Back when I was diagnosed with ITP, I was taken off all meds to see if it was one of them causing it.  But it wasn't.  Still don't know what caused my ITP, and at this point I really don't care.
The following user(s) said Thank You: Kristi

Please Log in or Create an account to join the conversation.

ITP back after 10 year remission- any similar experiences? 1 month 3 weeks ago #71824

  • MelA
  • Offline
  • Posts: 883
  • Karma: 2
  • Thank you received: 285
Kristi I'm very sorry your Dad had those strokes - bless him and bless you too!!  And then your 4-legged family member is ill, that hurts for sure.

I was diagnosed ITP in 1989 and Graves in 2002 [that's when thyroid killed off] - my hematologist & endocrinologist did not want me to take anti-thyroid drugs to try to get Graves under control.  

Cindy - you changed thyroid meds?   Once on a brand one should stay on that brand - unfortunately I was started on Synthroid, when we went with the HMO they changed me to Levothyroxine since it is generic - it took me & my new wonderful endo a couple years to figure out why I was having such a horrible time, it was due to the change in brand.  Once back on Synthroid I've done better but not all that good.

Oh Kristy - you do not have a disease you have a disorder.  I've never let it be said that I have a disease - ITP really is a blood disorder and I'm sticking too it :)  
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: Kristi

Please Log in or Create an account to join the conversation.

ITP back after 10 year remission- any similar experiences? 1 month 3 weeks ago #71825

  • CindyL
  • Offline
  • Posts: 1408
  • Karma: 1
  • Thank you received: 183
Mel, my numbers were so low, my doctor was surprised I walked into his office. According to what I'm taking now, it's Levothyroxin (Synthroid).  One must be a generic name.  I have been on the levo the longest.
Kristi, I tell people I have a disorder, not a disease.

Please Log in or Create an account to join the conversation.

ITP back after 10 year remission- any similar experiences? 1 month 3 weeks ago #71826

  • Chad89
  • Offline
  • Diagnosed with ITP in 2007 at age 18.
  • Posts: 58
  • Thank you received: 11
Hello. Sorry his ITP is back. I was in remission for 13 years. I had it initially when I was 18 in 2007. It went away and it came back last year. No clue why. 

Please Log in or Create an account to join the conversation.

ITP back after 10 year remission- any similar experiences? 1 month 3 weeks ago #71827

  • MelA
  • Offline
  • Posts: 883
  • Karma: 2
  • Thank you received: 285
Synthroid is the brand name - Levothyroxine is generic.   They are the same thing but they aren't the same thing.   
Yeah, Cindy my PCP told me my TSH was so low it couldn't be read so I was super hyperT - ugh.   But I was thin again like I was when I got married - not any more though.

 Yes - we are not diseased, we are disordered ;)
 

 
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

Please Log in or Create an account to join the conversation.

  • Page:
  • 1

Charity NavigatorGuideStar Seal NORD Member Badge 2021THSNA logo