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Post Spleen Journey

apantoj1
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8 years 1 month ago #60456 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

What a coincidence, I'm thinking of an option of slpennectomy. I've had ITP for more than 20 years. I'm afraid I'm running out of treatment option. I'm currently on promacta @ 50mg a day. Today I have petechia and blood blister which are signs of bleeding. I recall my hema told that if promacta won't work, splenectomy will be an only option. Thank you for sharing your story. Good luck on your recovery.

Allie2

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.

8 years 1 month ago #60477 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

What a hard journey you are living right now. My thoughts are with you. I hope that your CT scan goes really well next week and your pain resolves and you can get back to work. Glad to hear your surgery has healed and you are improving every day.

Thanks for keeping us posted.
Be Well,
Cindy

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

apantoj1
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8 years 4 weeks ago #60488 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

Thanks for your reply & well wishes.
Went to my hema yesterday...My platelet dropped down to 4. I end in hospital for ivig with solumedrol treatment.

Allie2

Allie2

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

8 years 4 weeks ago #60490 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

Had a CT scan yesterday. I still have my favorite blood clot, wedged in between my liver and colon. The pain comes and goes, hurts like crazy for a day or two then nothing for days. I am going back in blood thinners tonight but I'm going to keep taking Promcta this time. Will also have weekly CBC to watch for Platelets crashing. My count is at 94 right now so we will see what happens.

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.

8 years 4 weeks ago #60492 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

Good Luck with it all! I hope you can keep the platelets in a good range and not have clotting issues! ITP is a full time job.
My dr told me today I am one in a million! (Not a description I am happy to be given) They can not get me stabilized so far. I was 1,000 on Monday got IVIG and Dex. I too am going to be on Promacta upping to 75mg. Woo Hoo! We'll see what count is tomorrow.
Keep us posted on your progress. Sending you good healing and getting rid of that bad clot thoughts.
Cindy

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.

8 years 4 weeks ago #60493 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

Sorry to hear that! I hope you get to a good level soon. Is solumedrol a usual treatment? Does anyone know? I've heard of Dex.
Be well,
Cindy

midwest6708
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~ Janet ~ Diagnosed Sept. 2008

8 years 4 weeks ago #60502 by midwest6708

Replied by midwest6708 on topic Post Spleen Journey

I've never had Ivig but have had Solu-medrol twice as a quick boost. I can't remember anyone here ever saying they had it.

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.

8 years 4 weeks ago #60503 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

IVIG floods the body with stuff and is a protective bubble for the platelets but it is just a short term rescue therapy for low platelet crisis under 10,000.

The following user(s) said Thank You: apantoj1

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

8 years 4 weeks ago #60513 by EmilyK

Replied by EmilyK on topic Post Spleen Journey

I had solumedrol. It is like steriods on steriods! I do not think it is a common treatment however.

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.

8 years 3 weeks ago #60549 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

Thinking of you and sending good thoughts. How are you doing? Cindy

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.

8 years 3 weeks ago #60550 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

Feeling better, blood thinners are beginning to help. No pain meds all since Thursday other than Tylenol.

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

8 years 3 weeks ago #60551 by Sandi

Replied by Sandi on topic Post Spleen Journey

That's good news! I hope it continues!

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.

8 years 3 weeks ago #60554 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

Hi,
Glad things are improving for you. Now hoping the splenectomy does the trick and your platelets stay in the normal range!
Sending you good healing thoughts.
Please keep us posted.
Cindy

apantoj1
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8 years 3 weeks ago #60558 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

I'm on promacta but my platelet crashed to 7 lately. Was given ivig treatment for 2 days. This my first time to be on ivig. Is it norm to feel tired after ivig? Platelet post ivig is 97.
My platelet was 193 prior to this but had colitis 3 weeks ago. Could this be the cause of my platelet crashing?
Any input appreciated. Thank you all for this support group.

Allie2

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

8 years 3 weeks ago #60560 by Sandi

Replied by Sandi on topic Post Spleen Journey

Allie - yes, an illness can cause a temporary platelet drop even while using Promacta. If symptoms are minimal, it's okay to just ride it out and allow counts to rebound. Counts should be maintained around 50k on Promacta. Counts that go too high can raise the risk of blood clots.

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.

8 years 3 weeks ago #60601 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

Well platelets are holding on at 27 after 6 days on blood thinners. No pain now for 5 days. Doctor is going to let me go back to work finally. It has been a long affair since surgery on August 1.

apantoj1
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8 years 2 weeks ago #60623 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

My symptoms were bad petechia lower body and buccal blood blisters and extreme fatigue.
Thank you so much Sandi for your input. I do appreciate you sharing your knowhow.
I feel much better today no more extreme fatigue. might be able to go back to work soon. My platelet won't be checked til Monday.
Prednisone tapered down X 3 days each 60/40/20. Isn't it 20mg too much for the body get adjusted? Should I go for 60/40/20/10/5?

Allie2

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

8 years 2 weeks ago #60637 by Sandi

Replied by Sandi on topic Post Spleen Journey

That does seem to be a fast taper. How long have you been on Prednisone?

apantoj1
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8 years 2 weeks ago #60638 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

I've been on Prednisone X1 week that's after solumedrol at the hospital with ivig

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.

8 years 2 weeks ago #60641 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

Hi Allie2
My dr tapered me down very quickly and I was worried as well but did OK. I blew up like a face balloon when I was on it. It was hiorrible! How are you feeling?
Cindy

apantoj1
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8 years 2 weeks ago #60651 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

I feel tired and scared

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.

8 years 2 weeks ago #60653 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

I am sorry that you feel tired and scared. I know there are a million things to worry about, is it something specific? I do get it, ITP sucks! I try not to go to that scared place because for me it is a deep hole that does me not good. As long as your/our platelets are at a safe level we are basically OK. Some sucky things to deal with but alive and OK. Are you still tapering the prednisone or are you past that? That is a little scary too, worrying about a problem from tapering too fast.
Sending you peaceful thoughts,
Be Well
Cindy

apantoj1
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8 years 2 weeks ago #60657 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

That's a good thought "not to focus on being scared". Thank you for that encouragement. It's easy to get lost.
My plan is to wean me off Prednisone 10mg/5mg. I know my Hema will support on this.

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.

8 years 2 weeks ago #60658 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

And thankfully we all have each other for support! Hugs, 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.

8 years 2 weeks ago #60663 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

I was able to taken the blood thinner for 6 days straight this time. Thursday I started showing signs of low platelets. I stopped the injections at that point but I still have symptoms. I will have to go to the doctor tomorrow.

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

8 years 2 weeks ago #60664 by Sandi

Replied by Sandi on topic Post Spleen Journey

Sorry. I hope things get better for you soon.

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

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

8 years 2 weeks ago #60665 by D.Mann

Replied by D.Mann on topic Post Spleen Journey

I'm just frustrated with this whole thing right now. If I let the count go up I have extreme pain from the clot. If I take the injections to kill the clot I bleed and bruise.

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.

8 years 2 weeks ago #60667 by Cindy1

Replied by Cindy1 on topic Post Spleen Journey

That is so frustrating and scary. I am sending you good thoughts for the clot to resolve and the platelets to be stable at whatever the post spleenectomy platelet number should be. Good luck at your appointment. Please keep us posted.
Cindy

apantoj1
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8 years 2 weeks ago #60668 by apantoj1

Replied by apantoj1 on topic Post Spleen Journey

Good luck on your post splenectomy clot challenge. I hope it will be resolve soon.

Allie2

momto3boys
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8 years 2 weeks ago #60671 by momto3boys

Replied by momto3boys on topic Post Spleen Journey

D.Mann wrote: I'm just frustrated with this whole thing right now. If I let the count go up I have extreme pain from the clot. If I take the injections to kill the clot I bleed and bruise.

That's really a tough position. What's good for one condition is bad for the other. I hope you can get this clot resolved and I hope that your counts get some benefit from the surgery once it does!

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