!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Post Spleen Journey

CindyAnn
Offline
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 9 months ago #61977 by CindyAnn

Replied by CindyAnn on topic Post Spleen Journey

D.Mann - maybe you could change to 12.5mg Promacta twice a week - in my world less is better

when it comes to medication - NOT platelets

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

7 years 9 months ago #61986 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

For now the goal is 0 promacta if my count holds again next week. Then a very slow taper on the prednisone. If I have to take something I would lean to the lower dose promacta over the steroid. My hope for now is my body is finally regulating from surgery and the post-surgery blood clot and major platelet crash due to the clot meds.

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

7 years 9 months ago #62017 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

Hemo visit today, count up from 169 last week to 279 today. Dropping the twice a week Promacta and maintaining 20mg Prednisone daily. Looks like I'm finally getting regulated from surgery and blood clot.

Cindy1
Offline
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 9 months ago #62018 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

Hi D.Mann, What wonderful news that your platelets are up! I am curious if they are keeping you on prednisone and not Promacta due to your spleenectomy? In my case, I still have a spleen which might be why the different treatment plan, they wanted to wean me off the prednisone and just keep me on the Promacta. I have been off the Prednisone for about a week now and am on Promacta 50mg every day. I am still closely monitoring my platelets. They were 190,000 as of last Monday but had gone down a bit from prior tests.

Hal9000
Offline
Give me all your platelets and nobody gets hurt

7 years 9 months ago #62019 by Hal9000

Replied by Hal9000 on topic Post Spleen Journey

D.Mann wrote: ... If I have to take something I would lean to the lower dose promacta over the steroid...

Sounds like you're doing very well D.Mann. Tell me, did the doc give you a choice of which to taper first or ?

ITP Types and Treatments by HAL

poseymint
Offline

7 years 9 months ago #62020 by poseymint

Replied by poseymint on topic Post Spleen Journey

great news D Mann! You have really been on the ITP roller coaster ride this year! Awesome to see you come back after what appeared to be a failed splenectomy. Yes, I agree with the very slow pred taper. I think of my immune system as like a nest of bees- intelligent, hard working but you don't want to poke it with a stick. Especially if its calmed down, I am careful not to make any sudden changes in medication. Everything slow and easy. Will be interesting to see how it goes.

Cindy1
Offline
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 9 months ago #62021 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

I was just thinking that I bet they wanted you off the Promacta speedy quick before weaning the Prednisone is because of the blood clot you had. And I agree with Poseymint that slow taper of Pred is the best way to do it. I am so happy for you!

Cindy1
Offline
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 9 months ago #62024 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

Love the bee analogy! Brilliant!

The following user(s) said Thank You: poseymint

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

7 years 9 months ago #62029 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

Hal9000 wrote:
D.Mann wrote: ... If I have to take something I would lean to the lower dose promacta over the steroid...
Sounds like you're doing very well D.Mann. Tell me, did the doc give you a choice of which to taper first or ?

Doc wanted me off Promacta first because of the blood clot after surgery and he doesn't think its really doing anything. Plus I can get off it faster than the steroid. He said in 2 weeks if counts are good drop to 15mg, in 1 month 10mg. After that it will be 1mg at a time changing once a month.

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

7 years 9 months ago - 7 years 9 months ago #62086 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

2 weeks only taking 20mg Prednisone, count 229.
LET THE TAPER BEGIN!
3 months now of normal to high counts. Something has finally worked.
? Spleen Surgery ?
? Rituxin post surgery ?
? Everything I was given when post surgery crash happened ?
At this point I don't know and don't care, enjoying the relief and overall healthy feelings of normal counts.
I am going to put together a history of my treatment over the last 15 months that I will post in the hopes it may help someone else.

Tess
Offline

7 years 9 months ago #62171 by Tess

Replied by Tess on topic Post Spleen Journey

D.Mann,
Thank you so very much for posting your journey.

I just found this thread as I've not checked into the pdsa forum for a long time, ... And it's very timely for me as I'm looking at a splenectomy myself sometime this year .. (this reality has been very hard for me to come to terms with)

Warmest regards and fingers crossed for a complete remission for you

Tess

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

7 years 8 months ago #62203 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

2 weeks on 10mg prednisone and my count is holding at 186. Plan is to hold at 10mg for 6 more weeks then begin a very slow taper. If it goes well in about 6 months I will be done with the prednisone.

apantoj1
Offline

7 years 8 months ago #62211 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

Congrats!

Allie2

Cindy1
Offline
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 8 months ago #62220 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

Great report. Congrats!

Tess
Offline

7 years 8 months ago #62221 by Tess

Replied by Tess on topic Post Spleen Journey

Good news !!

Tess

mrsb04
Offline
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 8 months ago - 7 years 8 months ago #62229 by mrsb04

Replied by mrsb04 on topic Post Spleen Journey

Good count. I'd be inclined to start the taper sooner.

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

7 years 8 months ago #62345 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

I stopped Promacta on 12/12/17, since then my counts had drifted down some very slowly. I also cut prednisone from 20mg to 10mg on 12/28. Yesterday I went in for a CBC just to make sure all was looking good.
12/12 - 276
12/28 - 229
1/8 - 186
1/25 - 279
Next month I will start tapering off the prednisone 1mg at a time for 3-4 weeks between steps.

apantoj1
Offline

7 years 8 months ago #62346 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

That looks promising! I’m so happy for you

Allie2

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

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

7 years 8 months ago #62355 by Sandi

Replied by Sandi on topic Post Spleen Journey

That's great! Things are looking good!

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

7 years 7 months ago #62627 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

Platelet count on 2/20 was 349.
Cutting prednisone from 10mg to 8mg daily.
Surgery was on 8/2/17, normal counts since 9/29/17. Had 1 little dip to 61 after Rituximab in there but right back up the next week.

mrsb04
Offline
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 7 months ago #62633 by mrsb04

Replied by mrsb04 on topic Post Spleen Journey

Great news. Hope you get off the wretched stuff for good.

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

Tess
Offline

7 years 7 months ago #62646 by Tess

Replied by Tess on topic Post Spleen Journey

So Good to hear D.Mann !!!!

Fingers crossed as you continue to wean off the pred !!

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

Cindy1
Offline
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 7 months ago #62682 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

Hi D.Mann,
I am always happy when I see good news from you!!!!
Here is to continued stability as you wean the Prednisone!

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

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.

Platelet Disorder Support Association
8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141
Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003
E-mail: pdsa@pdsa.org

© Copyright 1997 - 2025, Platelet Disorder Support Association. All rights reserved.
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.

Become a Member

Make a Donation

!!! DISCUSSION GROUP RULES !!!

Post Spleen Journey

Donate

About

Stay Informed

Follow Us

IMPORTANT!