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Relapse of ITP after 22 years

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11 months 4 weeks ago - 11 months 4 weeks ago #73128 by dwfritz78
Relapse of ITP after 22 years was created by dwfritz78
I'm a 44 year old male living in Connecticut.  I was first diagnosed with ITP at age 22 back in 2001.  My count was 1000 when I went into the hospital.

I was hospitalized for about a month (2 weeks in California and then 2 weeks in my home state of NY).  They did the standard treatments at the time (Prednisone, IVIG, WinRho, Vincristine) but my count barely moved from 1000.  

Once I got a splenectomy, my count returned to normal and has been fine for 22 years.  I've generally been able to live a normal live, although the trauma of having ITP is something that you never get over.

In early March, I had to travel for work and ended up catching Covid for the first time.  I was fully vaccinated so the illness itself was pretty mild.  I tested positive on March 6, and on March 29, I noticed some petechiae on my forehead just before going to work.  As I said, it had been 22 years with no incident, but as soon as I saw them, my heart sank.  By lunch, I noticed more petechiae on my arms and chest, and went to the ER.

My count was 2000.  I was admitted on March 29 and immediately given IVIG and dexamethasone.  After two infusions of IVIG and daily dexamethasone, my count was up to 43,000 by Saturday and I was discharged with a daily prescription for 60 mg of Prednisone.

Unfortunately, when I got my bloodwork done the following Tuesday, my count was back down to 8000, and then next day it was 1000, so I was re-admitted on April 5, and I've been in the hospital ever since.

They re-tried IVIG and dexamethasone but it didn't move my count this time.  I've been on 60 mg of Prednisone every day, and have had 2 NPlate injections (April 10 and April 17), but my count so far hovers around 3000-4000.  I have some minor petechiae but no major bleeding from the nose or mouth/gums.

They've also done a bone marrow biopsy and it appears my system is producing platelets well but my immune system is destroying them.  

I'm having my first rituximab infusion tomorrow and will continue with NPlate.  I expect to be in the hospital for at least another week or two.

I'm just very concerned because now that I've had a splenectomy, I don't know what will happen if other treatment options don't work.  Has anyone else gone through something similar?

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  • Chad89
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  • Diagnosed with ITP in 2007 at age 18.
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9 months 2 weeks ago #73257 by Chad89
Replied by Chad89 on topic Relapse of ITP after 22 years
Hey. I’m sorry to hear that. I had ITP when I was 18 and then it was in remission for 13 years until I was 31. I also ended up having to get Rituxan and that was the last treatment I had. That was October of 2020. I worry about it all the time though. Anytime I see a bruise or petechiae I get concerned.

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9 months 2 weeks ago #73260 by mhprice2000@msn.com
Replied by mhprice2000@msn.com on topic Relapse of ITP after 22 years
59-year-old male here, living in New Mexico, diagnosed with ITP (count went to 0) in 2019 after an MMR booster shot.  I'm really sorry to hear about your relapse.  I think everyone has PTSD after dealing with ITP.  I had thought I was in remission after my splenectomy in 2020.  Then, I relapsed (8k and dropping) literally two days after a severe immune response to the second Covid Moderna vaccine shot in 2021.  I understand the trauma of looking in the mirror and seeing petechia after thinking it's all behind you.  I was put on Promacta, to which I responded (it didn't work for me before the splenectomy), and I've slowly been recovering since then.  What I will say to you is this, and I know it's hard to do: be patient and don't lose hope.  It takes time for your immune system to calm down after it's been riled up.  Hopefully rituximab and nPlate will work for you.

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8 months 3 weeks ago - 8 months 3 weeks ago #73288 by Juliandrea85
Replied by Juliandrea85 on topic Relapse of ITP after 22 years
I Was diagnosed at age 11 (1996). At age 22 I had My spleen out and in remission for 10 years. Until age 32 that I had an extremely heavy periods and went to ER. Turns out it Was a relapse. And i continue with this...
I'm now 37 years old.
I've Tried nplate several years and changed to avatrombopag in january this year. Always with deflazacort. During these years i've been with ivig at least 5 times. 
I'm tired of this condition. I'm a woman so when platelets are low I have heavy periods.

Good Luck and let's hope all for a remission

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  • 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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8 months 3 weeks ago - 8 months 3 weeks ago #73290 by mrsb04
Replied by mrsb04 on topic Relapse of ITP after 22 years
Juliandrea85
Have you tried Tranexamic Acid during your periods? 

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8 months 2 weeks ago #73296 by Juliandrea85
Replied by Juliandrea85 on topic Relapse of ITP after 22 years
Hello!!
Yes and it helps a lot during heavy periods. In spain is called amchafibrim.

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