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Please answer,..anyone. ITP is back 2 years 4 months ago #69487

  • nb9094
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Can anyone explain how this is happening? No spleen to trap my platelets like last time so why are they way down? Please help. Don’t remember being this afraid of dying Last time. Only down to 12 but the first 3 hours were panic, tears and pleading with god.

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8 years after splenectomy...ITP is back 2 years 4 months ago #69488

  • nb9094
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I have been in the 400 for 8 years. I noticed my legs getting nicked up and few black and blues that I didn’t remember getting. Called my pc doc, went in for blood work but thought I was fine. 3 hours later and 100 miles from home I get the phone call to go to nearest ER.
I lost it, 250 lb man driving a dump truck down the highway, crying like 3 year old. Thinking I just bought that new canoe for my 8 year old grandson and me And I won’t even be able to bring him out in it. Thinking my liver took over as my spleen and im screwed.
Just got out of hospital and home. Blood work Tuesday and see my pc Wednesday. Then my new hemo doc next week.
What if this is like last time and everything stops working and my numbers crash,...what next.

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8 years after splenectomy...ITP is back 2 years 4 months ago #69489

  • nb9094
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For the platelets to drop doesn’t something have to be catching them like the spleen did. If not they would still be there, still getting attacked but still there doing there job..? Right.

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8 years after splenectomy...ITP is back 2 years 4 months ago #69490

  • nb9094
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Is anyone out there?? The hospital I just got out of sucked. I found out before I was released, the hemo doc that didn’t speak English, wasn’t the hemo doc. He was just a doc for the floor. He wouldn’t test my blood just before next infusion because he didn’t want any false negatives. I just wanted to see if I was maintaining or dropping between ivig’s.

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8 years after splenectomy...ITP is back 2 years 4 months ago #69493

  • MelA
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Actually ITP never left - a splenectomy doesn't stop the antibodies from being made and attaching to platelets (that's what I was told anyway). There are other locations in the body that clean the blood & do their job by destroying the antibody coated platelets. I'm so sorry your count has gone down again. Try not to panic, that does you no good. I was diagnosed at 11k and dropping - it is frightening for sure.

Why not wait and see how the visit with your new hematologist - hope you like him/her. Make a list of all your questions so you are sure to have everything answered. And seriously, try not to panic - I did that when after a nice 'remission' my count hit the gutter after a tetanus booster and all that got me was a case of shingles. Believe me, that fit of panic was not worth it!!

Hang in there you will be seeing the new hematologist soon! However I have a feeling you and your grandson will be spending lots of time together in that new canoe (do you fish too?).
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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8 years after splenectomy...ITP is back 2 years 4 months ago #69496

  • nb9094
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Thank you MeIA, rough night. I know I’ve had it , just nothing was collecting them,...right?? Last time it almost killed me, till they took my spleen, which was twice it’s normal size. It’s the waiting I can’t handle.
So am I right about it having to be another organ that has taken over the spleens position??
I’m thinking instead of doing blood check today, I wait till morning. A few hours before my pc doc appointment, that way I get an even better idea of what my platelets are doing after my first rounds of steroids and rounds of ivig.
I bought the canoe for my best friend, my 8 year old grandson. We just decked it out for fishing and now I don’t dare to lift it.
Thank you, Neil Buck

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8 years after splenectomy...ITP is back 2 years 4 months ago #69499

  • mrsb04
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Neil
I posted a reply this morning but it does not seem to have been sent. The local server crashed about a second later so it is probably out there somewhere in the ether world.
Please try not to panic. I worked on the NHS front line with counts as low as 2. ITP has never stopped me doing anything I want to do. I tear around all over the place with my grandchildren.
Unfortunately a splenectomy is not guaranteed to work which is why I refuse point blank to have one. Maybe you have an an accessory spleen
There are medications called thrombopoietin receptor agonists which can be used for people who have failed splenectomies. Your haemo will be able to discuss this with you.
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Please answer,..anyone. ITP is back 2 years 4 months ago #69504

  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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Neil, you had 8 years without the inconvenience of ITP. That is something!

My surgeon was pretty sure I didn't have any accessory spleens, always a possibility, but the likelihood is that my liver took over after my unsuccessful splenectomy.

Single digits are scary, but I've always been surprised to find I have them--I've felt normal (till I got the phone call telling me my platelets were below 10).

Canoeing sounds like a pretty safe sport to me. I suspect you'll be able to handle to inconvenience of ITP and get on with a normal grandparent life.
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8 years after splenectomy...ITP is back 2 years 4 months ago #69559

  • Hal9000
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nb9094, I was looking through your story all the way back to June of 2012. About the medication they put you on which triggered ITP. Was that 'Bactrim' antibiotic, or was it something else? A different antibiotic, or ?

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8 years after splenectomy...ITP is back 2 years 4 months ago #69573

  • nb9094
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Anti-diabetic medication Glipizide is what my hemo doc said triggered the itp. She even had them put it on my allergic reaction list.
Neil buck

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8 years after splenectomy...ITP is back 2 years 4 months ago #69577

  • Hal9000
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Glipizide. Ok, thanks. I get the impression that Glipizide and Metformin are the same/similar. They are both 'Sulfonylureas'. From a quick search, I notice that these drugs can cause one to become deficient of vitamin B12. Interesting.

I don't know if you've seen my ITP treatments table. Looking over your steroid/Dex and IVIG responses back in 2012 it looks like row 2 ITP antibodies were in play at that time. When you took both steroids and IVIG, counts went up nicely to 319. Either alone and each did next to nothing.
bottools.com/Hal/ItpTypes.html

Here is some more information that you might find beneficial on the subject. Note that I've mentioned vitamin B9, aka Folate, deficiency as a possible issue.
'No Response to IVIG, ACK !'
pdsa.org/discussion-group/7-treatment-general/30169-no-response-to-ivig-ack.html#64535

If one assumes the current situation is merely a relapse of ITP row 2 antibody, and not an additional antibody coming into play (row 1, 3, or 4), might be best to get on either Nplate or Promacta and give them some time to work. You may not know. Something like 20+ percent of folks go into remission on those drugs alone. Give it at least a year and see if you are in that group?

What do you think?

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8 years after splenectomy...ITP is back 2 years 4 months ago #69580

  • nb9094
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Wow, thank you. I see my new va hemo doc for the first time in the morning. I will bring this to his attention and research this more.

Thank you so much,
Neil Buck

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8 years after splenectomy...ITP is back 2 years 4 months ago #69582

  • mrsb04
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Metformin is a Biguanide, which has a different mode of action to a Sulfonylurea
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8 years after splenectomy...ITP is back 2 years 4 months ago #69622

  • Hal9000
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Thanks for that Anne.
Looking into it more I get the impression that one would start out on Metformine - which can cause B12 deficiency. If that is not helpful enough, then Glipizide is added. Glipizide stimulates insulin production and Metformin does not. It is not known if the combination of the two drugs makes B12 deficiency worse. Apparently there is speculation that it might. Have I got it?

I notice that either a vitamin B9 deficiency or a B12 deficiency can cause a single common condition. Either can cause 'macrocytic anemia', aka Megaloblastic Anemia.
This anemia appears to disrupt many cell lines originating from bone - including neutrophils and platelets.
en.wikipedia.org/wiki/Megaloblastic_anemia

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8 years after splenectomy...ITP is back 2 years 4 months ago #69624

  • 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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People taking Metformin should have their renal function checked regularly.

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