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Platelet Hope

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8 years 1 day ago #61062 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Oh really? Thank you I feel much better. I’m so chicken with procedures.
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
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8 years 1 day ago #61063 by Sandi
Replied by Sandi on topic Platelet Hope
Allie - I think the fear of having it done was worse than the procedure. The worst part was the actual extraction which only took a few seconds.
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8 years 1 day ago #61066 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Yes you’re right it’s the fact bone marrow biopsy is being done and the fear of unknown result.
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
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8 years 1 day ago #61068 by Sandi
Replied by Sandi on topic Platelet Hope
If it helps any, I've been here since 1998 and have only ever seen a handful of abnormal results. Most of the time, they are fine.
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8 years 1 day ago #61069 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Thank you. I’m praying and hoping for good result. But hearing and knowing someone is out there to get input. I felt so Blessed and am grateful and appreciate you so much.
Allie2
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7 years 11 months ago #61177 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Went for follow up with Lab & Hematologist. Platelet down 15. Admitted to hospital for 2 days IVIG. Dr decided to discontinue promacta which he thinks it’s causing my WBC & neutrophils count to go down. He plan to start me Nplate next week.
Meanwhile he also open a topic of splenectomy and consulted a surgeon while I’m in the hospital, I guess to give me an idea. I’m not really sure if splenectomy is a right approach in ITP to take away a normal organ. Would it be easier to manage ITP without the spleen?
Allie2
  • 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.
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7 years 11 months ago #61178 by mrsb04
Replied by mrsb04 on topic Platelet Hope
Only if the splenectomy works and there is absolutely no guarantee it will, in which case you have parted with a healthy organ for no reason.
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7 years 11 months ago #61179 by momto3boys
Replied by momto3boys on topic Platelet Hope

apantoj1 wrote: Went for follow up with Lab & Hematologist. Platelet down 15. Admitted to hospital for 2 days IVIG. Dr decided to discontinue promacta which he thinks it’s causing my WBC & neutrophils count to go down. He plan to start me Nplate next week.
Meanwhile he also open a topic of splenectomy and consulted a surgeon while I’m in the hospital, I guess to give me an idea. I’m not really sure if splenectomy is a right approach in ITP to take away a normal organ. Would it be easier to manage ITP without the spleen?


You will have to do your own research and decide what risks you are comfortable with, but on the
topic of splenectomy, I have some experience. I had one done as a child to treat my ITP and it didn't
work. Since then, I have had to deal with my ITP as well as lacking a spleen (freaking out when you get a
fever because infections post splenectomy are VERY dangerous). Is it easier to manage ITP without the
spleen? Definitely not! (at least for me). Now, I am at a higher risk for problems with clots and dangerous
infections as well as dealing with low platelets. If I could go back, I would hold on to my spleen and tell them
no. Good luck with your decisions and I hope that Nplate works better for you!
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7 years 11 months ago #61180 by apantoj1
Replied by apantoj1 on topic Platelet Hope
What a coincidence...Thank you for your input. The 3 Drs was just here and we had long discussion about my ITP treatment option and I was not convinced with surg. We are going for Nplate starting next Monday.
My platelet this morning after IVIG last night was 51K.
Allie2
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7 years 11 months ago #61181 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Yes that is so true there is no guarantee in splenectomy. I had a discussion with both the hema & the oncolgy surgeon about which management to go. I decided No for splenectomy for now and hoping the Nplate starting next Monday will help me.
My platelet 51K this morning after IVIG last night.
Thank you and I am so grateful for the support I get from this 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
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7 years 11 months ago #61183 by Sandi
Replied by Sandi on topic Platelet Hope
Allie - I think you made a good decision. You can always decide to go for the splenectomy sometime in the future if nothing is working to maintain counts. Good luck with N-Plate (hopefully they hold off if your counts are high from IVIG).
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7 years 11 months ago #61201 by apantoj1
Replied by apantoj1 on topic Platelet Hope
I’m being discharge today my Platelet is 151 after 2 doses of IVIG. To start Nplate Next Monday and if this work, No surgery.
Thank you all for the support thru this group and I am so grateful!
Allie2
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7 years 11 months ago #61292 by apantoj1
Replied by apantoj1 on topic Platelet Hope
I’m scheduled to start Nplate tomorrow. Hopefully I’m going to have a positive response to this. Otherwise splenectomy might be the next option. Unfortunately, promacta also didn’t work for me. It brought my WBC & neutrophil down.
I wonder how long does it take Nplate to get result?
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
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7 years 11 months ago #61293 by Sandi
Replied by Sandi on topic Platelet Hope
N-Plate can begin to work right away or it could take a few weeks. As I said above, hopefully they don't give it to you if your counts are high. It can take time to get stable and requires a bit of patience.
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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7 years 11 months ago - 7 years 11 months ago #61294 by Hal9000
Replied by Hal9000 on topic Platelet Hope
Allie, if Nplate causes a problem with WBC too, you might want to ask your doctor about Azathioprine aka Imuran. If it were me, I would try that before a splenectomy.
ITP Types and Treatments by HAL
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7 years 11 months ago #61299 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Has anyone responded well with imuran? I have an appointment with hema tomorrow. I’ll mention this option. Thank you much!
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
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7 years 11 months ago #61302 by Sandi
Replied by Sandi on topic Platelet Hope
Eh...Imuran can take weeks or months to begin to work and isn't always a sure thing. I'd try N-Plate first. I took Imuran for another autoimmune disorder and didn't like the side effects. I also caught every illness that was going around and had a hard time getting over them.
  • 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.
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7 years 11 months ago - 7 years 11 months ago #61306 by mrsb04
Replied by mrsb04 on topic Platelet Hope
Azathioprine is not the nicest drug in the world. Leaves you open to infections and can have several nasty side effects. Will require regular liver function tests , and protecting yourself from sunlight. I suggest you get your doctor to discuss it in great detail with you . Also ask for a thiopurine S-methyltransferase (TPMT) test before you start taking it.
The following user(s) said Thank You: apantoj1
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7 years 11 months ago #61308 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Thank you! And yes I’m starting Nplate today. I’m hoping will work for me.
Allie2
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7 years 11 months ago #61312 by apantoj1
Replied by apantoj1 on topic Platelet Hope
I’m at hema and CBC was prior to Nplate. My platelet went down to 6K. Just waiting to see what my hema recommendation be. I’m not sure can Nplate be given with platelet of 6? Or might be given ivig again?
Allie2
  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 11 months ago #61313 by D.Mann
Replied by D.Mann on topic Platelet Hope
If you do not have active bleeding I would push for giving the Nplate a try instead of IVIG. I have not had Nplate yet but it seems to work fairly quickly most of the time.
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7 years 11 months ago #61315 by apantoj1
Replied by apantoj1 on topic Platelet Hope
No I don’t have bleeding symptoms. I’m surprised. Anyway, My hema is admitting me for ivig no Nplate at this time. My wbc is down again 2.7 with neutrophils of 23%. He thinks that this might have been caused by promacta and Nplate might do the same.
He’s scheduled me for bone biopsy tomorrow and splenectomy prolly this admission. I guess this my best option since I’m running out of treatment option and my platelet keep on crushing.
Allie2
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7 years 11 months ago #61352 by apantoj1
Replied by apantoj1 on topic Platelet Hope
My plate today is 34 after second dose of ivig this admission. My wbc is around 3. Had bone marrow yesterday. It wasn’t that bad although anxiously waiting for the result. If everything is ok my hema said I’ll be going for splenectomy tomorrow. My option I guess my platelet kept on crashing.
Allie2
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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7 years 11 months ago #61362 by Hal9000
Replied by Hal9000 on topic Platelet Hope
Allie, I certainly hope your splenectomy goes well. Have you asked your doctor what drug he will try if it doesn't go well?
ITP Types and Treatments by HAL
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7 years 11 months ago #61363 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Thank you! My hema had it planned for Nplate and possibly try Retuxan again.
Allie2
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7 years 11 months ago #61414 by apantoj1
Replied by apantoj1 on topic Platelet Hope
I was so scared but My Bone marrow result came out negative except ITP. So will proceed with splenectomy on Monday. Received the following vaccines today: apparently I have to have this every 5 years?
1. Haemophilus influenzae type b
2. Pneumococcal vaccine, polyvalent (Pneumovax 23)
3. Meningococcal ACWY Vaccine
The surgeon is keeping me admitted so my platelet can be closely monitored Goal is above 50. I was 54 today. My last ivig was Tuesday.
Allie2
  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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7 years 11 months ago #61420 by D.Mann
Replied by D.Mann on topic Platelet Hope
I think 1 of the vaccines may be yearly. I will say a prayer for you Monday morning.
Good luck, hopefully this is going to be your turning point.
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7 years 11 months ago #61421 by apantoj1
Replied by apantoj1 on topic Platelet Hope
Yes you’re right I think the flu is every year?
I hope so too I get positive outcome on this. Thank you for your prayers.
I also wish you continue to be well!
Allie2
  • 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.
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7 years 11 months ago - 7 years 11 months ago #61430 by mrsb04
Replied by mrsb04 on topic Platelet Hope
Flu is annual,
Pneumonia 3-5 years and should be given 2 weeks before an elective splenectomy
Meningitis is 5 years
The following user(s) said Thank You: D.Mann, apantoj1
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7 years 11 months ago #61431 by momto3boys
Replied by momto3boys on topic Platelet Hope

mrsb04 wrote: Flu is annual,
Pneumonia 3-5 years and should be given 2 weeks before an elective splenectomy
Meningitis is 5 years


This is an excellent point from Anne. If you only just received these vaccinations, but are planning a surgery in 3 days, I don't see how they are going to "take" before you go and remove the spleen. These vaccines are a pretty big deal, and one of the concerns of life after splenectomy is vaccinations not being effective because of the lack of a spleen. You have chosen splenectomy, but I don't see why they are rushing and not giving you a good 2 weeks to let the vaccines take effect.

Just wanted to emphasize Anne's very important point about wait time after vaccination!
The following user(s) said Thank You: apantoj1
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