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

TOPIC: Prednisone vs splenectomy

Prednisone vs splenectomy 2 months 9 hours ago #66116

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 20
  • Thank you received: 0
Has anyone tried prednisone for Chronic ITP and it did not work, so they tried a splenectomy and it worked? My platelet count was 85,000 2 weeks ago and last week it dropped down to 14,000. They did an IVIG yesterday and today, and they are doing the splenectomy next Tuesday and I didn't respond to the prednisone when they had me on it.
Platelets please..

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

Prednisone vs splenectomy 1 month 4 weeks ago #66118

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1172
  • Karma: 7
  • Thank you received: 273
What about all the other medical treatments available before anything so drastic as a splenectomy?

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

Prednisone vs splenectomy 1 month 4 weeks ago #66120

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 20
  • Thank you received: 0
The IVIGs only work for 3 to 4 weeks. The other one that people take once a week for 4 weeks thru IV, I cant take that one. So they are trying the splenectomy. I'm just wondering if the splenectomy worked on anyone that tried prednisone and that didnt work but the surgery did?
Platelets please..

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

Prednisone vs splenectomy 1 month 4 weeks ago #66121

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1278
  • Karma: 10
  • Thank you received: 162
Kayla, AFAIK splenectomy seems to work, but is a bit rare / less than common, for someone with no steroid response and a great IVIG response - aka row 3 response. I have only one such person in my PDSA member report notes. That member is 'xray001' and her daughter Danica who had the splenectomy. Here are her posts. The order is set to oldest post first, which can be flipped in the search controls.
pdsa.org/discussion-group/search.html?searchuser=xray001&exactname=1&searchdate=all&order=inc&childforums=1

Take a look through that and see if it seems to match your responses.

As I recall, your choices are very limited because of breastfeeding your newborn.

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

Prednisone vs splenectomy 1 month 4 weeks ago #66122

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1278
  • Karma: 10
  • Thank you received: 162
Oh, here is one more person with splenectomy success but the row 3 evidence is a little weak. Here are Amanda's posts. Not a lot to read. She was 28 at the time.
pdsa.org/discussion-group/search.html?searchuser=Amcbroom4211&exactname=1&searchdate=all&order=inc&childforums=1

On 90mg of prednisone for a month, counts stayed below 50. Two weeks after IVIG, count was 119, which was high enough for surgery.

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

Prednisone vs splenectomy 1 month 4 weeks ago #66123

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1172
  • Karma: 7
  • Thank you received: 273
Kayla
Maybe you should hold off this surgery until you have finished breast feeding so you can try medical options. There is no guarantee that removing a spleen will cure ITP. Splenectomy is not without risks.

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

Prednisone vs splenectomy 1 month 3 weeks ago #66186

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 20
  • Thank you received: 0
I appreciate y'alls opinions, i really do, but I just wanted to know if the splenectomy worked for anyone that did not respond to the prednisone.
Platelets please..

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

Prednisone vs splenectomy 1 month 3 weeks ago #66189

  • MelA
  • Offline
  • Posts: 214
  • Karma: 1
  • Thank you received: 63
Kayla you may want to ask this question down in the Adult With ITP section in the General section - more people will see it there.
Right now this is in the Forum Information which is for posts about the forum itself.

I think it's a crap shoot - even if a splenectomy did work for someone here that didn't have success with prednisone it may not work
for you - the only definite thing about ITP is that NOTHING is definite. Good luck to you!
"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.

Prednisone vs splenectomy 1 month 3 weeks ago #66190

  • MelA
  • Offline
  • Posts: 214
  • Karma: 1
  • Thank you received: 63
Kayla you may want to ask this question down in the General ITP Discussion in the Adults With ITP section - more people will see it there.
Right now this is in the Forum Information which is for posts about the forum itself.

I think it's a crap shoot - even if a splenectomy did work for someone here that didn't have success with prednisone it may not work
for you - the only definite thing about ITP is that NOTHING is definite. Good luck to you!

PS - is a splenectomy your choice?
"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.

Prednisone vs splenectomy 1 month 3 weeks ago #66191

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 20
  • Thank you received: 0
Oh ok idk about the whole forum thing and all si thank you. Also, I know that what may work for someone else may not work for me, I just wanted to hear about outcomes from different people about it is all.
Platelets please..

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

Prednisone vs splenectomy 1 month 3 weeks ago #66192

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 20
  • Thank you received: 0
Splenectomy was a decision that my hematologist brought up. My husband and I talked about it after doing the meds that I already tried and failed. Prednisone didnt work. IVIG only worked for 3 weeks, and other treatments I was not able to try. We went and seen a surgeon and decided to go with the splenectomy which is tomorrow April 2, 2019. I got to be there for 5 am.
Platelets please..

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

Prednisone vs splenectomy 1 month 3 weeks ago #66193

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1278
  • Karma: 10
  • Thank you received: 162

Kayla93 wrote: I appreciate y'alls opinions, i really do, but I just wanted to know if the splenectomy worked for anyone that did not respond to the prednisone.

Kayla, let me try to answer this way and see if that helps.

Most ITPer's do NOT respond well/strongly to steroids.
For those that do NOT, there are 3 categories/outcome groups that I have seen. Those that respond strongly to IVIG, those that respond weakly to IVIG, and those that don't respond to IVIG at all.
1) For those that respond strongly, successful splenectomy outcome is defintely possible but not that common - as I have already described.
2) For those that respond weakly, splenectomy is never successful.
3) For those that do not respond, a splenectomy doesn't matter. These folks always end up in remission, given some time, regardless.

How is that?

Good luck with the surgery. Age is definitely on your side here. Younger is better, statistically.

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

Prednisone vs splenectomy 1 month 3 weeks ago #66197

  • MelA
  • Offline
  • Posts: 214
  • Karma: 1
  • Thank you received: 63
Kayla I'm glad you & your husband made a decision together - so many who come here say "my doctor said I had to have...."
I wish you all the best and hope the splenectomy tomorrow will do the trick for you!!

Please keep us posted!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: Kayla93

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

Prednisone vs splenectomy 1 month 2 weeks ago #66299

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1278
  • Karma: 10
  • Thank you received: 162

Kayla93 wrote: ... We went and seen a surgeon and decided to go with the splenectomy which is tomorrow April 2, 2019. I got to be there for 5 am.

How are things Kayla?

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

Prednisone vs splenectomy 1 month 2 weeks ago #66301

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 20
  • Thank you received: 0
It went okay. I'm still a little sore from the surgery. I find out Tuesday if my platelets dropped too much. Before surgery my platelets were 398 from the IVIG. When I went home from the hospital they were 347. When I did the IVIG it only worked for 3 weeks as I previously stated, so I don't know if that is a strong or weak platelets response. So I am hoping that on Tuesday I get some answers as to if the splenectomy worked or not.
Platelets please..

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

Prednisone vs splenectomy 1 month 2 weeks ago #66302

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1278
  • Karma: 10
  • Thank you received: 162
Ok, sounds good so far. Thanks to IVIG, instant good counts. I guess it will be more like a month to get a possible hint. Stay away from the blood clot monster.

Cheers to no more ITP !

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

Prednisone vs splenectomy 1 month 2 weeks ago #66303

  • MelA
  • Offline
  • Posts: 214
  • Karma: 1
  • Thank you received: 63
Glad your surgery went well - hoping for good counts for you from now on!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: Kayla93

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

Prednisone vs splenectomy 1 month 1 week ago #66345

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 20
  • Thank you received: 0
Y'all, I think the splenectomy was a SUCCESS! I went and did blood work last Thursday, and my hematologist on Tuesday told me that my count was at 573,000!!!!!!!!!!!!!
Platelets please..

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

Prednisone vs splenectomy 1 month 1 week ago #66346

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1278
  • Karma: 10
  • Thank you received: 162
If you're aiming to be in the 'xray001' and 'Amcbroom4211' splenectomy remission group, I can't stop you :huh: :woohoo:

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

Prednisone vs splenectomy 1 month 1 week ago #66347

  • Kayla93
  • Offline
  • I am 25. I have had Chronic ITP for 2 years now but just got diagnosed with it. Currently going through a bunch of tests to try to diagnose something other than Chronic ITP. I am happily married with 3 children. 4 years, 1 year, and i just had my 3rd in J
  • Posts: 20
  • Thank you received: 0
What do you mean?
Platelets please..

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

Prednisone vs splenectomy 1 month 6 days ago #66351

  • MelA
  • Offline
  • Posts: 214
  • Karma: 1
  • Thank you received: 63
Good news Kayla - how long till your 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.

Prednisone vs splenectomy 1 month 5 days ago #66363

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1278
  • Karma: 10
  • Thank you received: 162

Kayla93 wrote: What do you mean?

It means I'm jealous.
How about this.

If you're aiming to be in the 'xray001' and 'Amcbroom4211' splenectomy remission group,

Oh my Kayla, looks like you are WINNING the war on ITP !

I can't stop you

And my narrow mind needs to pay attention here.

One thing worth noting. Members 'xray001' or 'Amcbroom4211' have not come back to this Forum and reported a subsequent relapse.

Cheers to no more ITP !

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

  • Page:
  • 1

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo