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Newly diagnosed wife Nothing working?

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14 years 10 months ago #10144 by colmack
Newly diagnosed wife Nothing working? was created by colmack
Hi All,

My wife just got a diagnoses Monday thanksgiving week, when she was admitted to hospital she had a count of 2 they tried steroids,IVG finally a splenectomy by that Saturday her numbers were very high after the splenectomy but fell back down almost as fast.

they started enforin(sp) and more IVG's but that didn't do much just overnight rise in the teens but eventually back to the very very low counts.

She started Nplate Monday now the bleeding is back. the doc says she will get a double dose come Monday..... that will be her forth week strait in that hospital bed. we live like 40 miles from the hospital so, they and we are afraid of her coming home hee hee maybe a very clinical Christmas this year

She has underlying diagnoses of Scleroderma that also causes calcium deposits right under her skin that sometimes break through.
  • server
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  • newcreationchangingdaily
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14 years 10 months ago #10147 by server
Replied by server on topic Re:Newly diagnosed wife Nothing working?
Wow! What a whirlwind! Where do you live that the doctors moved that fast?! On and off steriods in less than a week! And taking her spleen! Wow is all I can say! Ok....shock worn off. I'm hoping the NPlate works and that they give it some time to work before moving on! I've heard of scleroderma, but I don't know to many specifics. Is she on any treatment for that that could effect her platelets?
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
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14 years 10 months ago #10155 by CindyL
Replied by CindyL on topic Re:Newly diagnosed wife Nothing working?
Splenectomy within a month of diagnosis? Wow, I think that doctor jumped the gun a bit. Most of us wait at least six months in case counts correct themselves. That was pushing it, is all I can say.

Wasn't there any discussion on other treatments? Other than Nplate? What about Rituxan? Was that even mentioned?

Good luck to your wife. I hope she finds a treatment that works so she can be home for Christmas.
  • 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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14 years 10 months ago #10157 by Sandi
Replied by Sandi on topic Re:Newly diagnosed wife Nothing working?
Col:

Did the steroids or IVIG help her counts at all? Even a small rise?

Many people report that counts drop before the week is up with N-Plate. It is a maintenance drug and that can happen. Sometimes it takes a few weeks after the dose is adjusted to get a longer lasting response. In that case, all you can do is wait.

In the meantime, I'd ask the doctor about Rituxan. It's not a quick fix, but can give a more lasting response then the other treatments.
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14 years 10 months ago #10193 by Tad Moody
Replied by Tad Moody on topic Re:Newly diagnosed wife Nothing working?
Yes, my counts dropped to zero after starting Nplate.

Then, it took 3 months for Nplate alone to finally raise my count to non-symptomatic levels, so it can take a long while to work!

Good Luck!
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14 years 10 months ago #10308 by colmack
Replied by colmack on topic Re:Newly diagnosed wife Nothing working?
Hi all,

Thanks for the insight, she has went through the first week of Nplate with no rise in count staying around 2 or 3. The docs have doubled the dose today where just looking for 20 so she can come home, she is getting a bag of platelets everyday.
The doc had already talked about Rituxan, she is worried about the side effects of Rituxan. She is in good spirits and has very little bleeding. I hope we don't have to have a clinical Christmas.
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14 years 10 months ago #10311 by Lindy
Replied by Lindy on topic Re:Newly diagnosed wife Nothing working?
Hi colmack,

I hope your wife will get better & both of you can be home for Christmas.
Good Luck!
  • 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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14 years 10 months ago #10319 by karenr
Replied by karenr on topic Re:Newly diagnosed wife Nothing working?
Read all you can on this site so you and your wife can discuss with her doctor viable treatments. I think some doctors panic and rush to try whatever they've just heard about. It doesn't sound as if your wife has worrisome symptoms. (I admit the low counts sound like worrisome symptoms, but if she doesn't feel bad, doesn't have much bleeding or bruising, she may not need really drastic treatments, especially so soon.)
  • 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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14 years 10 months ago #10342 by Sandi
Replied by Sandi on topic Re:Newly diagnosed wife Nothing working?
For some, IVIG has worse side effects than Rituxan. I'd seriously consider it at this point. Make sure she's had the immunizations since she had a splenectomy. Rituxan can take 3 to 12 weeks to work, so you'd have to be patient with that one.

I'd also look into a second opinion. Couldn't hurt.
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14 years 10 months ago #10573 by colmack
Replied by colmack on topic Re:Newly diagnosed wife Nothing working?
Hi all,

A little update: Last Friday the wife said hell or hi water I'm going home. her stay in the hospital was one day short of a month, on her last draw her plates were 2 we are scheduled to go for transfusions everyday 40 miles away to make sure she was OK, our first appointment she was 21 so they didn't transfuse her the next day they were 26 again no transfusion today she headed up there for day 3 post hospital, to check numbers and get 3rd Nplate shot it seems to be working at this point and she/we are very happy

I'll tell ya it was a long month I'm grateful to see improvement(s)thanks for all the words of help and advice



Thanks Bruce

PS. 3rd day numbers are 25
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14 years 10 months ago #10574 by NatalieM
Replied by NatalieM on topic Re:Newly diagnosed wife Nothing working?
Wow. These last couple months have really hit you guys hard haven't they? I'm glad to see that her counts are stabilizing at a safer number. That is a good sign that possibly the NPlate is working. Like the others have said, do your research and you can always look into another opinion in case her doctor is a hasty decision maker. Trust me, we've been there, done that. Have a very merry and platelet filled Christmas and remember that you can always come here if you have questions or concerns.

Natalie
*Here's to high platelets!*
  • 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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14 years 10 months ago #10582 by Sandi
Replied by Sandi on topic Re:Newly diagnosed wife Nothing working?
I'm glad she got to go home. I hope N-Plate is working too!
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