1. < Blood Cancers & Disorders

Immune Thrombocytopenia Purpura (ITP): What helps?

Posted by naiviv @naiviv, Sep 2, 2022

Has anyone been diagnosed with ITP? Does anyone take supplements for ITP? Food to eat to increase platelets?

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bettersleep68 | @bettersleep68 | Dec 14, 2024

My platelts have dropped over the year..they are now 88...I am worried...my hematogist...watching...my h and h has dropped also but my wbc elevated..anyone else dealing with this...any advice would be appreciated

REPLY
bettersleep68 | @bettersleep68 | Dec 14, 2024
In reply to @seymore "Just fond my platelets are low 53 they are going to see if it’s going to..." + (show)
@seymore

Just fond my platelets are low 53 they are going to see if it’s going to stay that way or just a fluk. Any suggestions

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Mine the same thing ..I hope they increase with time

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Mentor
Lori, Volunteer Mentor | @loribmt | Dec 15, 2024
In reply to @seymore "Just fond my platelets are low 53 they are going to see if it’s going to..." + (show)
@seymore

Just fond my platelets are low 53 they are going to see if it’s going to stay that way or just a fluk. Any suggestions

Jump to this post

Hi @seymore. Your doctor will most likely be looking for a trend in your platelet levels. If you have previous numbers they’ll use those to see if there’s been a steady downward turn in your platelets. That can help determine if it’s a fluke or not.
If you don’t have previous numbers, then your doctor will use the next set of labs at a future date as a comparison. In the meantime, there’s not much you can do except to not dwell on it! Our blood numbers can fluctuate for any number of reasons. Have you had a viral infection recently?
Were you having any symptoms such as bruising or excess bleeding from a nick or cut that prompted the blood work?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 23, 2024
In reply to @noberembt "My husband has been diagnosed at the age of 37, we have done a bone marrow..." + (show)
@noberembt

My husband has been diagnosed at the age of 37, we have done a bone marrow biopsy, immune suppression infusions (those landed him in the hospital for a week due to a very rare but severe reaction), and now is on Promacta. I am curious if your husband had an ultrasound of his spleen done that showed that it was enlarged? The reason I ask is because mine did and they said it was not enlarged but since he had a bad reaction to the infusions, they said splenectomy was the next step. We discussed that we were 100% comfortable with this option and that is when we got put on Promacta. Problem is the Promacta is not working at the current dosage. They are going to up the dosage to the next level.

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@noberembt, has the dosage of Promacta been increased? Is it working for your husband? Will he have a splenectomy?

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1 reply
noberembt | @noberembt | Dec 24, 2024
In reply to @colleenyoung "@noberembt, has the dosage of Promacta been increased? Is it working for your husband? Will he..." + (show)
@colleenyoung

@noberembt, has the dosage of Promacta been increased? Is it working for your husband? Will he have a splenectomy?

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His dosage was increased but, right before he got the news that his platelets had dropped, we also got news that my insurance wasn’t going to cover Promacta. The doc said he would take care of it, but it has been 2 weeks and he doesn’t have his increased dosage and there hasn’t been a claim or prescription out through so I’m assuming it been more of a headache/struggle than he thought. He has not had a splenectomy yet as we do not feel that will solve the issue since his spleen is not enlarged at all to be harboring his platelets. They agreed that it was just the normal next step after Rutixmab and Rutixmab landed him in the hospital with a very rare side effect.

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becca13 | @becca13 | Dec 26, 2024
In reply to @smes "My husband was diagnosed with ITP in 1996. Within a few weeks of his diagnosis, they..." + (show)
@smes

My husband was diagnosed with ITP in 1996. Within a few weeks of his diagnosis, they removed his spleen. He was then on Prednisone for about 7 months and weaned off it over a few months thereafter. He was lucky - the removal of his spleen for the most part resolved his ITP. He has to be careful about exposure to certain viruses, but for the most part his ITP has resolved.

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Wow! What was his platelet level? I am new to this I was just diagnosed with ITP.
So I am trying to glean as much info as I can.

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1 reply
noberembt | @noberembt | Dec 27, 2024
In reply to @becca13 "Wow! What was his platelet level? I am new to this I was just diagnosed with..." + (show)
@becca13

Wow! What was his platelet level? I am new to this I was just diagnosed with ITP.
So I am trying to glean as much info as I can.

Jump to this post

When he started treatments, it was at 15. They did an ultrasound of the spleen and no issue. Did a bone marrow biopsy and nothing. Started him on prednisone and it did nothing. The next step was 2 days of infusions of platelets (it was a drug to increase production but the name is skipping my ming) that brought him up to 160 on a Saturday (after his final infusion on Friday) but was at 30 by Wednesday. He then started the Rutiximab and he got his first infusion and then they went to injection. At day 10 from the infusion, he lost his vision, had the worst body aches and was not ok. Went to the hematologist and they checked him, and his levels were good, said they didn't think it was the drug as this wasn't normal side effects. We went home and he slept for roughly 3 hours and got up and said he needed to go back in. We went to the ER and sat there FOREVER, once they got him in, he was being tested for everything under the sun with everything coming back negative. They settled on it being a very rare side effect of the Rutiximab. They stopped that immediately and wanted to do a splenectomy and we pushed back asking why since in May his spleen wasn't enlarged. Asked what the steps after the splenectomy if it didn't work. They stated Promacta so we asked if we could go to that first. They were agreeable so we started that. They also put him on a high dosage of a steroid as his platelets were around a 10. He was on Promacta 50mg and high dose steroids for 3 weeks and his platelets were great, we thought yes, this is the answer. Once he started to wean off the steroids (4 days before his blood test) his platelets dropped to a 20. That was on Dec 11th, and we have not heard anything back on the increased dosage at this time. My husband is to be calling the doctor asking about the increased dosage, but he is a man! 🙂 (I do give him a little leeway as he is a self-employed contractor, and we have so many projects on the books that I know he is super busy all while being a great husband and father!)

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2 replies
becca13 | @becca13 | Dec 27, 2024
In reply to @noberembt "When he started treatments, it was at 15. They did an ultrasound of the spleen and..." + (show)
@noberembt

When he started treatments, it was at 15. They did an ultrasound of the spleen and no issue. Did a bone marrow biopsy and nothing. Started him on prednisone and it did nothing. The next step was 2 days of infusions of platelets (it was a drug to increase production but the name is skipping my ming) that brought him up to 160 on a Saturday (after his final infusion on Friday) but was at 30 by Wednesday. He then started the Rutiximab and he got his first infusion and then they went to injection. At day 10 from the infusion, he lost his vision, had the worst body aches and was not ok. Went to the hematologist and they checked him, and his levels were good, said they didn't think it was the drug as this wasn't normal side effects. We went home and he slept for roughly 3 hours and got up and said he needed to go back in. We went to the ER and sat there FOREVER, once they got him in, he was being tested for everything under the sun with everything coming back negative. They settled on it being a very rare side effect of the Rutiximab. They stopped that immediately and wanted to do a splenectomy and we pushed back asking why since in May his spleen wasn't enlarged. Asked what the steps after the splenectomy if it didn't work. They stated Promacta so we asked if we could go to that first. They were agreeable so we started that. They also put him on a high dosage of a steroid as his platelets were around a 10. He was on Promacta 50mg and high dose steroids for 3 weeks and his platelets were great, we thought yes, this is the answer. Once he started to wean off the steroids (4 days before his blood test) his platelets dropped to a 20. That was on Dec 11th, and we have not heard anything back on the increased dosage at this time. My husband is to be calling the doctor asking about the increased dosage, but he is a man! 🙂 (I do give him a little leeway as he is a self-employed contractor, and we have so many projects on the books that I know he is super busy all while being a great husband and father!)

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What a scary journey My platelets are 28 and they keep dropping waiting for biopsy results I am on
Dexamethazone for 4 days…
I go back the 3 to check numbers.. it is really frightening I am sole caregiver for my husband w dementia- I am also on anticonvulsants- which they
Did reduce but hematologist diagnosed ITP
S I am waiting my results they dropped 11 in 10 days last time uggh!!!

REPLY
becca13 | @becca13 | Dec 27, 2024
In reply to @noberembt "When he started treatments, it was at 15. They did an ultrasound of the spleen and..." + (show)
@noberembt

When he started treatments, it was at 15. They did an ultrasound of the spleen and no issue. Did a bone marrow biopsy and nothing. Started him on prednisone and it did nothing. The next step was 2 days of infusions of platelets (it was a drug to increase production but the name is skipping my ming) that brought him up to 160 on a Saturday (after his final infusion on Friday) but was at 30 by Wednesday. He then started the Rutiximab and he got his first infusion and then they went to injection. At day 10 from the infusion, he lost his vision, had the worst body aches and was not ok. Went to the hematologist and they checked him, and his levels were good, said they didn't think it was the drug as this wasn't normal side effects. We went home and he slept for roughly 3 hours and got up and said he needed to go back in. We went to the ER and sat there FOREVER, once they got him in, he was being tested for everything under the sun with everything coming back negative. They settled on it being a very rare side effect of the Rutiximab. They stopped that immediately and wanted to do a splenectomy and we pushed back asking why since in May his spleen wasn't enlarged. Asked what the steps after the splenectomy if it didn't work. They stated Promacta so we asked if we could go to that first. They were agreeable so we started that. They also put him on a high dosage of a steroid as his platelets were around a 10. He was on Promacta 50mg and high dose steroids for 3 weeks and his platelets were great, we thought yes, this is the answer. Once he started to wean off the steroids (4 days before his blood test) his platelets dropped to a 20. That was on Dec 11th, and we have not heard anything back on the increased dosage at this time. My husband is to be calling the doctor asking about the increased dosage, but he is a man! 🙂 (I do give him a little leeway as he is a self-employed contractor, and we have so many projects on the books that I know he is super busy all while being a great husband and father!)

Jump to this post

Also… my spleen and all organs are excellent according to ultrasound.

They only put me on a 1/2 doseage of the steroids.
I am on pins an needles!
Can you please keep me posted how your husband is doing !? I would really appreciate it. Will keep you both in our prayers

REPLY
1 reply
noberembt | @noberembt | Dec 27, 2024
In reply to @becca13 "Also… my spleen and all organs are excellent according to ultrasound. They only put me on..." + (show)
@becca13

Also… my spleen and all organs are excellent according to ultrasound.

They only put me on a 1/2 doseage of the steroids.
I am on pins an needles!
Can you please keep me posted how your husband is doing !? I would really appreciate it. Will keep you both in our prayers

Jump to this post

Thank you! It is a wild ride for sure! I will keep you posted. I will also pray for you and your husband as well! Take care!

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