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Anyone else have sudden drop?

  • whatthehwegoingtodowiththiss
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14 years 5 months ago #15094 by whatthehwegoingtodowiththiss
Anyone else have sudden drop? was created by whatthehwegoingtodowiththiss
I was diagnosed in April 2008 with 3k platelets- after steriod drip a few months of steroids. I went to whinro for a few months, which sustained me until 5/2009 when I got pregnant. The pregnancy caused my platelets to go to 1 and had IVIG and prednisone drip. I went home with a taper and have been on 2mg since. I have been going through major stresses-moving across country, my mom has metastatic uncurable cancer and refused all treatments, and have three small children. I checked cbc on the 20th of April and they were 200...on Tuesday they were 1k. I went in for two days of IVIG and prednisone and left today with a taper.

WHY the sudden drop? It scares the crap of out of me. What can prevent this? WHere do I turn?
  • 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 5 months ago #15095 by Sandi
Replied by Sandi on topic Re: Anyone else have sudden drop?
Hi. You are having a hard time! So sorry for all of your problems.

Sudden drops can occur for no apparent reason. Sometimes stress is a factor, but may not even be the cause at all. That is just what ITP does.

There isn't much you can do to prevent a drop. Monitoring can prevent it from getting too low if you get treatment in time, but many don't treat until they are low anyway.

You can turn to your doctor, and you can turn to us. We've all been there.

How are your symptoms when you are low? If they aren't too bad, try to just stay calm when a drop occurs. Many people do okay with low counts and don't consider it an emergency. They just deal with it as it happens. Do you respond to Prednisone alone? If so, IVIG might not be necessary.

I hope things get better for you soon. In the meantime, hang in there!
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14 years 5 months ago #15102 by Dean
Replied by Dean on topic Re: Anyone else have sudden drop?
Sorry to hear what you are going through. I have been down to 2k but I do not recall such a drop as you experienced. For me I feel stress plays a pretty big roll in my counts.
Do try to stay calm when your counts drop, I know easier said than done. Try to get as much rest as you can. How do you feel when counts are low?
  • whatthehwegoingtodowiththiss
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14 years 5 months ago #15110 by whatthehwegoingtodowiththiss
Replied by whatthehwegoingtodowiththiss on topic Re: Anyone else have sudden drop?
I felt extremely fatigued last week but chalked it up to moving, etc.I should have had them checked earlier in hindsight. I didnt see the connection. I literally needed three naps a day last week. Is there anything or any treatment that could prevent this?
I feel like I failed or something since i went so long on such a low dose...just depressed today and feeling like flu like maybe from the massive ivig.
  • whatthehwegoingtodowiththiss
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14 years 5 months ago #15111 by whatthehwegoingtodowiththiss
Replied by whatthehwegoingtodowiththiss on topic Re: Anyone else have sudden drop?
The only other new thing I did is start taking daily 5k miligrams of vitamin d?.
  • 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 4 months ago #15125 by Sandi
Replied by Sandi on topic Re: Anyone else have sudden drop?
I wouldn't think Vitamin D would hurt your counts. 5k Mg's? They come in IU's.

You didn't fail. You can't control what your body does.
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14 years 4 months ago #15130 by Dean
Replied by Dean on topic Re: Anyone else have sudden drop?
Platelets carry the two chemicals related to mental health one is seritonin, can not remember the other. Are you taking any kind of multi vitiman? Feeling fatigued is part of ITP. Totally understand the wanting naps issue. When counts rise it may still take a while to get energy back. No, you did not FAIL!! So stop thinking that!!
Keep your chin up.
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14 years 4 months ago #15133 by milly
Replied by milly on topic Re: Anyone else have sudden drop?
I have a a drop of 100k drop in 24 hours, but I was at 240 at the time, had one count done 240 next day had another count 140 (I think the reason for two counts so close was I had a stressful time and I went to dr in a bit of a mess, can't really remember what about, in a prednisone fog at the time.) I didn't really look at it as a drop as the 240 is really high for me.

Not a fail for you just something you can't control. I take vit d all the time has no effect and it was a suggestion of my Dr.I sure understand where you coming from though this thing is really a struggle sometimes, and yeah I get scared when counts are low too I think everyone does.
Look after yourself and get lots of rest. Stay in touch if you need anything let us know.
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