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Post Spleen Journey

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 #61534 by Sandi

Replied by Sandi on topic Post Spleen Journey

The only guess that I have is this: I have seen two patients in the past (long time ago) who had a failed splenectomy. When I say 'failed', I mean that counts did not go up after surgery and they needed additional treatment. They both had Rituxan and went into a long-term remission.

It's really hard to know when there are so many factors and treatments going on. Time will tell. If counts stay up for a while after you finish Promacta and Prednisone, I'd go with the Rituxan/splenectomy combo theory as the reason.

Hal9000
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Give me all your platelets and nobody gets hurt

7 years 11 months ago #61547 by Hal9000

Replied by Hal9000 on topic Post Spleen Journey

Sandi wrote: The only guess that I have is this: I have seen two patients in the past (long time ago) who had a failed splenectomy. When I say 'failed', I mean that counts did not go up after surgery and they needed additional treatment. They both had Rituxan and went into a long-term remission...

Do you recall, was it the first time these two had received Rituxan treatments?

ITP Types and Treatments by HAL

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 #61548 by Sandi

Replied by Sandi on topic Post Spleen Journey

I was trying to remember that last night. One of them is Cindy from Canada and I don't think she tried Rituxan prior to splenectomy. The other one was a guy named Charles. He doesn't come here any more. I think he did try Rituxan before the splenectomy.

CindyL
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7 years 11 months ago #61562 by CindyL

Replied by CindyL on topic Post Spleen Journey

I'm the Cindy Sandi is talking about.
I had my splenectomy in 2006. It worked for about a month, then counts fell to where I was before the surgery and had to go back on prednisone. I did Rituxan in 2011. Counts started rising right from the first dose. They were so good, I didn't think I would need the 4th dose, but got it anyway. I've been in remission since.

The following user(s) said Thank You: Tess

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 #61563 by Sandi

Replied by Sandi on topic Post Spleen Journey

Yep. There she is!

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 #61564 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

Hi Cindy,
That is great news to hear that you are doing so well! I am new to this ITP stuff and the drs are pushing Rituxin. I am leery of it because it is so strong, attacks the immune system and has some serious side effect possibilities. But, the more I hear about it the better it is sounding. Did you have any bad side effects?
Congrats on remission and thanks for sharing it is so helpful!
Cindy

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 #61571 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

Cindy,
I have done Rituxin twice now, once back in December and then again after surgery a month ago. The only side effect I had was an itchy throat during the very first infusion, after that nothing. That being said, I do think that the December Rituxin caused me to catch the flu in January. This time I am constantly washing my hands and using hand sanitizer like it's going out of style.

CindyL
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7 years 11 months ago #61572 by CindyL

Replied by CindyL on topic Post Spleen Journey

Cindy,
I had no side effects at all! My dr. wanted someone with me for the first dose over the first 24 hours in case I had issues; I didn't. I stayed awake during all treatments, reading or doing puzzles. I was scheduled for about 2 hours the first time and each time after the time got lower.
As part of my morning routine, I go through the posts on here but don't always reply unless it's something I can help with.

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 10 months ago #61657 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

After a week of 20mg Prednisone a day and 25mg Promacta every other day I had a very respectable count of 178 today. I'm very happy that it finally came down some (still can't believe I'm saying that) from the 400 and 500's.
Sticking with the same meds for now, CBC and Hemo next Tuesday.

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 10 months ago #61660 by Sandi

Replied by Sandi on topic Post Spleen Journey

That's great! It's okay to say that....there is such a thing as too high.

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 10 months ago #61661 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

Yay! Great news. It is such a hard balancing act keeping platelets a good not too high and not too low zone! Congrats!

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apantoj1
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7 years 10 months ago #61676 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

Congrats to D.Mann.!

Allie2

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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 10 months ago #61734 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

Everything is still looking great, 170 count today. After 2 weeks on 20mg Prednisone and 25mg Promacta every other day things are fairly stable. Going to take the Promacta only twice a week for two weeks and see what happens. Not sure what has finally worked since so much has been thrown at me the last few months, but I'm glad it is.

Hal9000
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Give me all your platelets and nobody gets hurt

7 years 10 months ago - 7 years 10 months ago #61735 by Hal9000

Replied by Hal9000 on topic Post Spleen Journey

D.Mann wrote: Everything is still looking great, 170 count today ...

It sure is D.Mann. Cheers to less and less Promacta. LOL, gotta love that stuff.

ITP Types and Treatments by HAL

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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 10 months ago #61736 by Sandi

Replied by Sandi on topic Post Spleen Journey

Looking good! I'm glad counts are finally leveling off.

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

apantoj1
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7 years 10 months ago #61738 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

Congratulations!

Allie2

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 10 months ago #61756 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

Hi D.Mann
Great news!!!!!!
I am also so happy for you! Sending good thoughts for continued safe platelet levels!!!!

Cindy

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 10 months ago #61902 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

Had a count yesterday, 2 weeks since the last 1. 2 weeks ago at 170, lowered meds from 25mg Promacta every other day to only twice weekly and kept up 20mg prednisone daily. Yesterday the count was 109, a little lower than I hoped for but still good. I had my last Promacta on Saturday so 109 isn't bad. Going to hold everything the same for a few more weeks to see what happens, barring a severe drop.

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 10 months ago - 7 years 10 months ago #61903 by mrsb04

Replied by mrsb04 on topic Post Spleen Journey

Splendid. How long are you planning on staying on that dose of Prednisolone?

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 10 months ago #61904 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

Well, I guess that is still to be determined. I was really hoping that I would begin tapering off the steroid in December. Hemo said we would drop from 20 to 15 to 10 over a month then 1mg at a time after that. Right now I really want to level off before we make any more changes, with counts fluctuating up or down its hard to know what dose changes are really doing.

Hal9000
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Give me all your platelets and nobody gets hurt

7 years 10 months ago #61906 by Hal9000

Replied by Hal9000 on topic Post Spleen Journey

Anne, about your T shirt for juggling Promacta and steroid doses.
If one were going to take both drugs for say 6 months or so, what would you recommend? For steroids, one should take less than 8 mg a day. Or, less than 4 mg a day. Or, less than 2 mg a day. Or ?
LOL, and 'no steroids' is not a good answer.

ITP Types and Treatments by HAL

apantoj1
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7 years 10 months ago #61912 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

Your response to your current treatment is looking great! I’m praying it will stabilized where you wanted it to be.

Allie2

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poseymint
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7 years 10 months ago - 7 years 10 months ago #61915 by poseymint

Replied by poseymint on topic Post Spleen Journey

D Mann- I agree that its good to change doses carefully and slowly. And as you said, try not to have two variables if possible. Sometimes with the TPOs you won't see the effects of the dose change for two weeks. So will be interesting what your next count is.
If I had been in your situation, I would have left the Promacta at 25mg every other day- because thats a low dose, and tapered the prednisone instead. But I know you had a blood clot so maybe for you its best to get the Promacta dose down. Anyway, you have found something that works and are in the fine-tuning phase which is great. I like your doctor's tapering schedule for prednisone- sounds like he knows what hes doing with that drug.

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

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 10 months ago #61916 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

Hi D.Mann,
So glad that your platelets are staying in a safe zone. Sending good thoughts for your platelets to continue to be in a good and safe range.
I know it is crazy for me trying to figure out how to level the plateltes out between the steroids and prednisone, let alone for you whaen adding in your splenectomy variable. I get the frustration being on the Prednisone but maybe with the splenectomy it is especially improtant to wean slowly.
Sending great healing thoughts your way.
Cindy

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 10 months ago #61920 by mrsb04

Replied by mrsb04 on topic Post Spleen Journey

Hal
I don't recommend any particular dose, each person's physiology and response is unique to them. It's a case of finding what one is comfortable with. I am still on 25/50 Eltrombopag and 3mg of Pred. I have to say I feel the best I have in a long time. I'd love to be off the Pred entirely but for now will continue on these doses for the 3 months as planned.

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 9 months ago #61970 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

I had a CBC today. I have held meds steady now for 3 weeks now, 20mg Prednisone daily and 25mg Promacta twice a week. The count was up 61 from last week to 169. My Promacta days are Saturday and Tuesday. Last Tuesday I was 108, 3 days from last dose. Today is Wednesday so I had Promacta last night. I guess that could have caused the swing but ill take either count after the last year.

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 9 months ago #61971 by Sandi

Replied by Sandi on topic Post Spleen Journey

Just curious (I can't remember) - did you try the Promacta/Prednisone treatment combo prior to splenectomy?

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 9 months ago #61972 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

They overlapped a bit as I tappered off prednisone. I had no normal or near normal counts without IVIG prior to surgery. Of course I had fast drops soon after the IVIG spikes. I have been above 100 for about 6 weeks.

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 9 months ago #61973 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

Hi D.Mann,
So glad for your good platelet count! I pray that your platelets continue to be stable and in the safe zone!
Cindy

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

apantoj1
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7 years 9 months ago #61976 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

I’m happy for you D.Mann! You feel better and also you’re platelet are stabilized!

Allie2

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