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Prednisone vs splenectomy

  • Kayla93
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  • 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
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6 years 10 months ago #66116 by Kayla93
Prednisone vs splenectomy was created by Kayla93
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..

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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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6 years 10 months ago #66118 by mrsb04
Replied by mrsb04 on topic Prednisone vs splenectomy
What about all the other medical treatments available before anything so drastic as a splenectomy?

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  • Kayla93
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  • 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
More
6 years 10 months ago #66120 by Kayla93
Replied by Kayla93 on topic Prednisone vs splenectomy
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..

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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6 years 10 months ago - 6 years 10 months ago #66121 by Hal9000
Replied by Hal9000 on topic Prednisone vs splenectomy
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.
ITP Types and Treatments by HAL

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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6 years 10 months ago - 6 years 10 months ago #66122 by Hal9000
Replied by Hal9000 on topic Prednisone vs splenectomy
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.
ITP Types and Treatments by HAL

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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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6 years 10 months ago - 6 years 10 months ago #66123 by mrsb04
Replied by mrsb04 on topic Prednisone vs splenectomy
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.

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  • Kayla93
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  • 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
More
6 years 9 months ago #66186 by Kayla93
Replied by Kayla93 on topic Prednisone vs splenectomy
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..

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6 years 9 months ago #66189 by MelA
Replied by MelA on topic Prednisone vs splenectomy
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

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6 years 9 months ago - 6 years 9 months ago #66190 by MelA
Replied by MelA on topic Prednisone vs splenectomy
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

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  • Kayla93
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  • 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
More
6 years 9 months ago #66191 by Kayla93
Replied by Kayla93 on topic Prednisone vs splenectomy
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..

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  • Kayla93
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  • 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
More
6 years 9 months ago #66192 by Kayla93
Replied by Kayla93 on topic Prednisone vs splenectomy
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..

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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6 years 9 months ago - 6 years 9 months ago #66193 by Hal9000
Replied by Hal9000 on topic Prednisone vs splenectomy

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.
ITP Types and Treatments by HAL

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6 years 9 months ago #66197 by MelA
Replied by MelA on topic Prednisone vs splenectomy
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

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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6 years 9 months ago #66299 by Hal9000
Replied by Hal9000 on topic Prednisone vs splenectomy

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?
ITP Types and Treatments by HAL

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  • Kayla93
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  • 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
More
6 years 9 months ago #66301 by Kayla93
Replied by Kayla93 on topic Prednisone vs splenectomy
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..

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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6 years 9 months ago #66302 by Hal9000
Replied by Hal9000 on topic Prednisone vs splenectomy
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 !
ITP Types and Treatments by HAL

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6 years 9 months ago #66303 by MelA
Replied by MelA on topic Prednisone vs splenectomy
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

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  • Kayla93
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  • 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
More
6 years 9 months ago #66345 by Kayla93
Replied by Kayla93 on topic Prednisone vs splenectomy
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..

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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6 years 9 months ago - 6 years 9 months ago #66346 by Hal9000
Replied by Hal9000 on topic Prednisone vs splenectomy
If you're aiming to be in the 'xray001' and 'Amcbroom4211' splenectomy remission group, I can't stop you :huh: :woohoo:
ITP Types and Treatments by HAL

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  • Kayla93
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  • 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
More
6 years 9 months ago #66347 by Kayla93
Replied by Kayla93 on topic Prednisone vs splenectomy
What do you mean?
Platelets please..

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6 years 9 months ago #66351 by MelA
Replied by MelA on topic Prednisone vs splenectomy
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

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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6 years 9 months ago #66363 by Hal9000
Replied by Hal9000 on topic Prednisone vs splenectomy

Kayla93 wrote: What do you mean?

[strike]It means I'm jealous.[/strike]
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 !
ITP Types and Treatments by HAL

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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6 years 7 months ago #66886 by Hal9000
Replied by Hal9000 on topic Prednisone vs splenectomy
Kayla, how are things?
ITP Types and Treatments by HAL

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