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400k to 5k in 4 days!!

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13 years 9 months ago #20982 by eappel
400k to 5k in 4 days!! was created by eappel
After a year of nothing working my husband went in for a splenectomy 2 weeks ago. They gave him IVIG to get him to about 180k for the surgery. 4 days after the surgery he was released from the hospital with a count of over 400k (he's never gotten that high from IVIG alone, even a lot of it, so we were hopeful).

Four days after being released he had the worst nose/gum bleeding he's ever had and we wind up back in the ER with a count of 5k.

Now we are familiar with counts dropping but it is usually gradual, at most 100k in a week. But 400k down to 5k in four days seems crazy! We are assuming the splenectomy was a failure but now I am just so nervous his counts will drop drastically overnight. He left the hospital the second time after more IVIG with about 111k. We know with IVIG it will probably go up for a few more days then drop again but our fear is that it will happen too quickly to react and we'll be back in the ER.

Anyone experience such a rapid drop like that? He went off the Nplate about 3 or 4 weeks ago. We saw some improvement with it (but just boosting counts after IVIG - not sustaining him on it alone). I heard crashes after coming off Nplate were signifigant. And since he came off, these are definitely the most intense symptoms he's ever had.

We are so upset about the splenectomy not working, especially after it seemed so hopeful when he left...but now my only concern is that he is going to continue to crash hard and fast.

Thanks in advance!
  • 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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13 years 9 months ago #20993 by Sandi
Replied by Sandi on topic Re: 400k to 5k in 4 days!!
It would probably be wise then to have counts done more often for a while. Hopefully, he can avoid the crashes. He might still stabilize - it happens. If not, he might respond better to some of the treatments he's tried before. I hope you find something that works soon.
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13 years 9 months ago #21002 by tgurin12
Replied by tgurin12 on topic Re: 400k to 5k in 4 days!!
Unfortunately, I have had crashes like that. That's how mind seem to go. I have never been as high as 400K, but I have gone from 250K to 0 in 3 days. When I was really bad a few months ago before I went on N-Plate, and I got tested every week day because I crash like that.
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13 years 9 months ago #21006 by gwenny
Replied by gwenny on topic Re: 400k to 5k in 4 days!!
I crash like that always. Two weeks ago I was at 181 and then on Friday I was 7. Now today I am 34.