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A massive drop in counts

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14 years 8 months ago #11380 by patina732
A massive drop in counts was created by patina732
I was just wondering what what the biggest drop in counts that you've had? My fiancé is slowly being taken off prednisone he was at 10mg and went down to 7.5mg, and is on imuran and nplate. His counts had been going up every week. Last week he was at 300. He went in today, and he's at 30. We have no idea what could have done this to his counts.

He's been under some stress due to the wedding planning, and isn't feeling that well- sore throat. But really? A 250 count drop? Has anyone else experienced this?
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14 years 8 months ago #11384 by eklein
Replied by eklein on topic Re: A massive drop in counts
Yes! Not me personally but a lot of the people here on nplate have huge variations in counts from week to week.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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14 years 8 months ago #11392 by server
Replied by server on topic Re: A massive drop in counts
I've not dopped 250, but have 150-160 on a couple of different times, all while on NPlate. They adjust your dose according to your weight and your current count. How long has he been on NPlate?

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 8 months ago #11394 by patina732
Replied by patina732 on topic Re: A massive drop in counts
Well, they can't adjust the nplate. It's a bit of a long story, but basically he maxed out his health insurance. He was able to get the nplate straight from the manufacturer based on financial hardship. It's a very small dose- I don't know how much. But that's the best we can do. He started, the end of october? beginning of November-ish. The financial hardship ended at the end of last year, so I know that the doctor's are going to taper him off. We need to pay for two additional shots- and are expected to pay $4000 a piece.

In October his counts dropped to 13 so the doctor wanted to do everything he could to get his counts back up.
  • 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 8 months ago #11402 by Sandi
Replied by Sandi on topic Re: A massive drop in counts
Counts are known to do that on N-Plate. It's a maintenance drug, meaning that it usually wears off before the next shot is given. One of the warnings is that counts can drop very low before the next shot.

Some people achieve more stability as time goes on.
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14 years 8 months ago - 14 years 8 months ago #11407 by Tad Moody
Replied by Tad Moody on topic Re: A massive drop in counts

patina732 wrote: Well, they can't adjust the nplate. It's a bit of a long story, but basically he maxed out his health insurance. He was able to get the nplate straight from the manufacturer based on financial hardship. It's a very small dose- I don't know how much. But that's the best we can do. He started, the end of october? beginning of November-ish. The financial hardship ended at the end of last year, so I know that the doctor's are going to taper him off. We need to pay for two additional shots- and are expected to pay $4000 a piece.

In October his counts dropped to 13 so the doctor wanted to do everything he could to get his counts back up.


Hi, patina

Without insurance, I assume his Nplate will be discontinued.
Nplate only works while the patient is taking it, so why would you pay $8,000 for only 2 more injections? Plus, Nplate can take weeks to months to even start working, and it seems the Nplate is not even working that well for him now. If no more injections are planned after those 2, why spend so much? There a lot more options available.

best of luck!
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14 years 8 months ago #11417 by Rhiannon
Replied by Rhiannon on topic Re: A massive drop in counts
Once off treatment I never had a drop after finishing treatment. though this time may well be different because it the very first time I had just prednisolone. All other times I was given prednisolone for 2 days then had IVIG for 5 days. So I will be interested to see what happens once I have finally finished the prednisolone. Though I think I have had two drops this week given the signs but risen automatically.

My counts can be well within 200-400 and when gone in they be lower than 10. Though this time was odd in a way because like the one registra/doc he thought it wasn't anywhere near severe enough to be thrombocytopenia and told me so very bluntly and wondered why what made me go (boxing day). He did later apologise to me for the count was 7. I only had about half a dozen spots... one very big bruise I gave myself as knocked into coffee table day before. and a few little purpula brusing. I couldn't help being smug when my count was only 7 that time because it meant I was right for he was very blunt and I don't blame him really because it didn't look severe enough.. but I so wished the retired consultant had heard him. Not to tell him off - but to tell him, to trust the patient etc :-}
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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 8 months ago #11484 by karenr
Replied by karenr on topic Re: A massive drop in counts
I have had some enormous drops--and some big leaps--usually, I think, associated with a shock to my body--like surgery or discontinuance of prednisone or even an infection. It is useful to keep track of counts and doses and any unusual circumstances. I use a Word document table to do that--1st column date and, in caps, anything unusual; 2nd column platelet count; 3rd column medication dosage.