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Post Spleen Journey

momto3boys
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7 years 11 months ago #61346 by momto3boys

Replied by momto3boys on topic Post Spleen Journey

D.Mann wrote: Wow, wow, wow!
I've spent the last year on the ITP roller coaster. Platelet crash then IVIG and platelet spike, then do it all again. After everything today I got my first normal range count without IVIG. I am on the high side with a count of 410, was only 61 last Tuesday. I really expected another drop today. I'm trying not to get too excited but normal numbers are a great surprise. I was due to see the doc but I had the nurse show him my numbers before I left. He told me to cut my Promacta down to 25mg and keep the 10mg prednisone. I'll see him next Tuesday and we'll see what happens. My hope is that the combination of Spleenectomy and Rituxin has finally kicked in.
Surgery was August 1 and last Rituxin was October 13.

Wow, that is a high count. Since you opted for Rituxan and are also on Prednisone (and had a recent splenectomy, phew!) you really, really, really need to get off of Promacta (I'd be scared going for even a week at 25mg with a count that high and your recent clot history). I hope he's planning to take you all the way off at the next appointment! Fingers crossed that you can cut back on some of these simultaneous treatments (4 things! yikes!) and get some well earned stability. That is definitely a great initial response to Rituxan for you

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Cindy1
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For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.

7 years 11 months ago #61347 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

I was thinking I should write to you today and check in. You made my day with your note. Yay!!!!!!!!!!!!!!!!!

I am resisting the Rituxin until I exhaust Promacta and Nplate but there is a nagging thought I should try it because people do respond to it although the stats I've seen give Promacta and NPLATE an 80ish % effective rate and Rituxin a 50% effective rate at best. I'm waiting to hear back from the doctor about this. This IVIG roller coaster ride is a crazy one!
Stay well!!!!!!!!!
Cindy

The following user(s) said Thank You: D.Mann

D.Mann
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

7 years 11 months ago #61350 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

For now the plan is to cut the Promacta dosage in half from 50 to 25, wait a week see what that does. If my count is still good next week start cutting the Prednisone to get off it completely, currently on 20mg. Until yesterday even taking all the meds my counts had been dropping 20K-30K per week, this is the first time I've had a sizable increase without IVIG.

apantoj1
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7 years 11 months ago #61351 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

Is this a result of positive side of having splenectomy?

Allie2

D.Mann
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

7 years 11 months ago #61354 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

I would not claim that yet, way too early and I have had a lot of treatments thrown at me over the last few months due to bleeding. It could be any of the following:
1. result of the surgery finally kicking in
2. combo of surgery and Rituxin
3. combo of Rituxin last December and again this month
4. combo of surgery, Rituxin, Promacta, Prednisone
5. the bleeding finally stopping and my body catching up instead of using all my produced platelets to plug holes
6. Your guess is as good as mine at this point.

apantoj1
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7 years 11 months ago #61355 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

Thank you for more info. Stay well. The reason I was asking cuz I’m getting splenectomy this admission if my bone marrow biopsy is ok according to my hema

Allie2

D.Mann
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

7 years 11 months ago #61356 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

Good Luck. My surgery was not bad at all, most of my issues after surgery are from a blood clot. My count crashed the day after surgery, they rushed to give me IVIG and IV steroids for fear of bleeding internally at the surgery sites. My count skyrocketed the week after surgery and I got a very painful blood clot between my liver and colon. (Much worse than the surgery) The medication to get rid of the clot caused me to crash and develop bleeding from my colon to the point my RBC and Hemoglobin were low along with my platelets. I was admitted again and hit the IVIG rollercoaster again.
Right now I feel better than I have in months, well before surgery. I'm trying not to get too optimistic but things are finally looking good.

apantoj1
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7 years 11 months ago #61358 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

How many weeks does it to recover from splenectomy? Did they cut you open or scope?

Allie2

apantoj1
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7 years 11 months ago #61359 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

Where you in ICU after the surgery or were you in regular surgical floor?

Allie2

D.Mann
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

7 years 11 months ago #61360 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

My surgery was all with a scope, just 4 little cuts on the outside. They removed the spleen from one of them on my left side below the ribs. Surgeon said that the internal incision there was about 6". I was in recovery till I woke up then taken to a regular room on the surgical recovery floor. When I left the hospital I walked out, for me the worst part was peeing after the catheter. If they do the scope it is important to get up and walk as soon and often as you can. The gas they fill you with can cause some discomfort for a few days and walking helps get rid of it. It can cause your shoulders to hurt for some reason. I cannot answer for total recovery time because the clot issue started about 1.5-2 weeks after surgery and it hurt much worse than my surgery.

Cindy1
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For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.

7 years 11 months ago #61361 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

LOL!
Totally insane right?
Just glad something is working!!!!

apantoj1
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7 years 11 months ago #61364 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

D.Mann thank you so much for sharing your experience! It’s helping me prepare mentally and emotionally before my surgery.

Allie2

The following user(s) said Thank You: D.Mann

Hal9000
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Give me all your platelets and nobody gets hurt

7 years 11 months ago #61366 by Hal9000

Replied by Hal9000 on topic Post Spleen Journey

Amazing D.Mann. Really amazing.
I have to wonder if your going to need a progressively lower dose of Promacta over the next few weeks (like a type 2 remission), or, that the nightmare is all over now and Promacta is not needed.

ITP Types and Treatments by HAL

D.Mann
Topic Author
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

7 years 11 months ago #61369 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

I hope to get off both drugs completely. If I can hover around 40-50 without meds that would make all the last 2.5 months worth it.

Hal9000
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Give me all your platelets and nobody gets hurt

7 years 11 months ago - 7 years 11 months ago #61370 by Hal9000

Replied by Hal9000 on topic Post Spleen Journey

I dunno D.Mann. I'm hoping for either through the roof counts next week or counts high enough to cause another reduction in Promacta next week.

On a side note. I've theorized with Jay before that steroids might speed a Promacta (type 2) remission - and your taking steroids.

ITP Types and Treatments by HAL

D.Mann
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

7 years 11 months ago #61372 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

Just high enough to keep cutting the Promacta or steroid would be perfect to me. Don't really want through the roof numbers again. The clot issue is keeping me worried a bit, but right now I'm not having any clot symptoms. A count between 150-200 would make me very happy.

apantoj1
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7 years 11 months ago #61373 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

D.Mann thank you so much for sharing your experience! It’s helping me prepare mentally and emotionally before my surgery.
Do you recall how much was your platelet on the day of your surgery?

Allie2

D.Mann
Topic Author
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

7 years 11 months ago #61376 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

Day of surgery I was 50-60 do not remember exactly. That day is a bit of a blur.

apantoj1
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7 years 11 months ago #61378 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

In that case they must have changed parameters. Sometime 10 years ago I had surgery and they required 100 platelet count before taking you to surgery table.

Allie2

D.Mann
Topic Author
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

7 years 11 months ago - 7 years 11 months ago #61486 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

10/31/17 CBC after one week of dropping Promacta from 50 to 25. 501 up from 410, up! I know it’s high but moving slow to avoid the drops.
Going to stay on 20mg prednisone but change Promacta to 25mg every other day. Weekly CBC to monitor. Hemo wants to get me completely off Promacta if counts do not drop to unsafe level. Right now we would both feel better quite a bit lower. (Haven't ever said that before)?
I guess that will happen in the next week or two. Then we will start a very, very slow decline on the prednisone.

Cindy1
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For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.

7 years 11 months ago #61487 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

WOW, WOW, WOW! HOORAY!!!!!!! YAY!!!!!!!!
GREAT NEWS!!!!! I am so happy for you!!!!!!!
Thanks for sharing!
Cindy

CindyAnn
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Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17

7 years 11 months ago #61490 by CindyAnn

Replied by CindyAnn on topic Post Spleen Journey

Well D.Mann
You have had a hell of a journey but it looks like there is light at the end of the tunnel :cheer:

Fingers and toes crossed along with positive thoughts and prayers!

The following user(s) said Thank You: D.Mann

Hal9000
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Give me all your platelets and nobody gets hurt

7 years 11 months ago #61494 by Hal9000

Replied by Hal9000 on topic Post Spleen Journey

It was looking bleak for awhile D.Mann. Just needed a little Promacta. Congratulations and well done!

ITP Types and Treatments by HAL

The following user(s) said Thank You: D.Mann

D.Mann
Topic Author
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

7 years 11 months ago #61500 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

I wish I knew for sure what it was. The Promacta didn't work before surgery, neither did steroids. I really think it's a combination of the surgery and Rituxin. I had a slight response to Rituxin the first time. My primary care doctor gave me the antibiotic that lists a 70K platelet drop as a side effect. ( I was at about 30K at the time) After that it turned out to be the flu anyway. I really never got over that crash.

Cindy1
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For 7 months, platelets crashed (as low as 1,000) every 10 days between IVIG treatments. I got cured 10/2017 after taking parasite destroying medicine and Rife US tx.

7 years 11 months ago #61501 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

I know, it is so hard to make rhyme or reason out of any of the ITP stuff. Just hope for all to be stable and at good levels!
Cindy

The following user(s) said Thank You: D.Mann

Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

7 years 11 months ago #61507 by Sandi

Replied by Sandi on topic Post Spleen Journey

Yikes! I'm glad you are responding but hope they get to a more reasonable number! I'm glad you're lowering Promacta.

An antibiotic lists a 70k drop? How could they possibly know that?

D.Mann
Topic Author
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Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.

7 years 11 months ago #61509 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

If I remember correctly when I looked it up it said up to a 70K drop along with bloody stool and bruises.
Heck of a drug to give to ITP patients.
I was hoping for a lower count today (can't believe I said that) after going 50mg to 25mg Promacta. We'll see what happens after a week of 25mg every other day.

Sandi
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Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18

7 years 11 months ago #61511 by Sandi

Replied by Sandi on topic Post Spleen Journey

Do you remember what the drug was? Just curious.

Hal9000
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Give me all your platelets and nobody gets hurt

7 years 11 months ago #61516 by Hal9000

Replied by Hal9000 on topic Post Spleen Journey

D.Mann wrote: I wish I knew for sure what it was.

Me too D.Mann, me too.

ITP Types and Treatments by HAL

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.

7 years 11 months ago #61521 by mrsb04

Replied by mrsb04 on topic Post Spleen Journey

And me.

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