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How often do the counts change?

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14 years 8 months ago #11975 by jennaouellette
How often do the counts change? was created by jennaouellette
Hi All! Had my initial hemo appt today. They did another CBC on the spot and platelets were still 69000 (same as last week). Don't get me wrong, I'm happy they have not decreased, but :unsure: how could they be the same?????? Sorry...I still very new to all of this.
  • 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 #11977 by Sandi
Replied by Sandi on topic Re: How often do the counts change?
Jenna:

Platelet counts change constantly. It's a real coincidence to have the exact same count, but is very possible.

A normal platelet lives 7 to 9 days. They don't survive that long when a person has ITP. There is constant production and destruction going on. Also, the automated machine counts have a margin of error of 5k or so.
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14 years 8 months ago #12116 by turqfeathers
Replied by turqfeathers on topic Re: How often do the counts change?
I have Sjogren's Syndrome and my platelets are now involved. Thanksgiving weekend I ended up in hospital for 3 days til the count went back up (was 2,000). Had those red dots on my legs and alot of bruising. I've been on different levels of prednisone since then; count goes up and down according to how much predisone I'm on. Now on 40 mg.; going down to 30 next week. But it seems when I'm on 10 or 5 the count goes down to a dangerous level... This could be a lifelong thing (I'll be 58). Were you ever told about a drug for platelets? I think SmithKline makes it -- $2500 a month! The side effects scare me to death and wonder if it's worth taking or just continue on a medium dose of prednisone.
How how this affected you? All this really scares me... besides have all the immune system problems...
Thanks.
Bette
  • 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 #12119 by Sandi
Replied by Sandi on topic Re: How often do the counts change?
Bette - there are quite a few different treatments. There is Win-Rho, IVIG, Decadron, Rituxan, N-Plate, Promacta, Danazol, Dapsone, etc. Some work better than others, and a lot depends on what a person responds to. I know it seems like you might be doing this up and down Prednisone dose thing forever, but most do not do that due to long term side effects. If that is all your doctor is suggesting, it might be time for a second opinion. All treatments have side effects, but you just have to find the one that affects you the least and works the best. Many people achieve remission at some point.
14 years 8 months ago - 14 years 8 months ago #12124 by
Replied by on topic Re: How often do the counts change?

This could be a lifelong thing (I'll be 58). Were you ever told about a drug for platelets? I think SmithKline makes it -- $2500 a month! The side effects scare me to death and wonder if it's worth taking or just continue on a medium dose of prednisone.

Yup...it could be lifelong (I'll be 58 also in a few months)...then again, it could just vanish tomorrow.
I would not even consider taking Prednisone again, unless it were a final option. And as has been said, there are a lot of options out there. Many are a lot easier on you than big steroid doses.
The drug GlaxoSmithKline makes specifically for ITP is 'Promacta'. The other drug similar to it is 'N-plate'.
Everyone is different, but after one year of Promacta treatments, I'm far happier with it than anything else I've done over the years. Keeps me in the 50k zone with far fewer side effects than any other treatment I've tried.
BTW: The maximum 75mg/day dosage of Promacta runs close to $8,000.00 per month (not $2,500). I always get a chuckle when I read the pharmacy receipt which says, "You have saved $7,749.42 by shopping at Walgreen's".
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14 years 8 months ago #12157 by redhead02865
Replied by redhead02865 on topic Re: How often do the counts change?
I am new to this website & am so confused about platelet counts. I had pneumonia & an infection from surgery & my platelets jumped to 998,000. My Onc. wanted to put me on Hydrea but I was concerned about all the serious side affects. What I have been doing is having the platelets checked every 3 wks & they are going down. They are at 650,000. Is this a normal think for platelets to do? I get concerned about having a heart attach or stroke because of the 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 8 months ago #12170 by Sandi
Replied by Sandi on topic Re: How often do the counts change?
That is a high platelet count, but most of the time, doctors don't get too concerned unless they are over a million or the person has risk factors for a stroke. Didn't they even suggest aspirin? That is a common prevention treatment.
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14 years 8 months ago #12181 by redhead02865
Replied by redhead02865 on topic Re: How often do the counts change?
Hi Sandi: I do take a baby aspirin nightly. I also have PAD but am afraid to have the surgery, so I started a strick excercise program of walking daily, even though it hurts.
Are there any foods or vitamins that will keep the platelets under control?
  • 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 #12200 by Sandi
Replied by Sandi on topic Re: How often do the counts change?
There are no foods to lower or raise platelets, but there are foods that can make platelets less sticky, thereby lowering the clotting risk.

Have you had ITP? Have you had a splenectomy?
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