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Recently diagnosed

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9 years 7 months ago #53575 by Trishyrae
Recently diagnosed was created by Trishyrae
I have recently been diagnosed with ITP. From everything I have been reading it seems like I have a very mild case but had a few questions. My counts started out about 87 about four months ago but have been slowly dropping since. Last check they were at 57. I have few symptoms and am not taking any meds at this time. Is this common? Should I expect them to continue dropping? Any info is appreciated.
Trish
  • mrsb04
  • Offline
  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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9 years 7 months ago - 9 years 7 months ago #53576 by mrsb04
Replied by mrsb04 on topic Recently diagnosed
Unlikely to need treatment above a count of 30 unless at risk of bleeding or needing surgery.
In the UK they tend to watch & wait
  • 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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9 years 7 months ago - 9 years 7 months ago #53584 by Sandi
Replied by Sandi on topic Recently diagnosed
Trish:

It is not possible to predict how ITP will go for you. Sometimes it is acute and goes away on it's own without ever needing treatment, and sometimes counts will keep dropping. You are still above treatment level though, so that's good. Counts fluctuate constantly and ups and downs are normal, unless they get too low.

Most people do not have symptoms at your counts. Most have symptoms under 30k, some don't until they get under 10k. Not having symptoms is a very good thing.

Keep us posted on your counts and if you have any other questions, just ask!
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9 years 6 months ago #54009 by Trishyrae
Replied by Trishyrae on topic Recently diagnosed
Should I be concerned if my counts are good in70s but I am getting blood blisters in mouth? Just a few here and there and not huge but I generally have at least one at all times. I don't see hemo till May. Just trying to figure out if it's something I should contact him about.
Trish
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9 years 6 months ago #54013 by Rob16
Replied by Rob16 on topic Recently diagnosed
It is often said on this website, "Treat the symptoms, not the counts" so yes, I would at least let your doctor know.

Are you taking anything OTC, or eating anything unusual, that could be affecting your clotting? Aspirin?

There are many causes of oral blood blisters, most of them benign. Here is one good summary:
www.newhealthadvisor.com/Blood-Blister-in-Mouth-Cheek.html
The following user(s) said Thank You: Trishyrae
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9 years 6 months ago #54016 by Trishyrae
Replied by Trishyrae on topic Recently diagnosed
Thanks for the info. I'm not taking any meds other than B12 but that's nothing new and no new foods. Maybe mine aren't blood blisters the link said that blood blisters are more like ulcers with a head. Mine are like actual blisters that are black and full of blood. They don't have a head or open sore.
Trish
The following user(s) said Thank You:
9 years 6 months ago #54017 by
Replied by on topic Recently diagnosed
Trish when in doubt check it out - also see my signature. If you are concerned enough to ask here about it then you probably should let your doctor know or go in and see him/her

That site doesn't have a photo of a blood blister does it? Yours sounds like one to me although I have never had one.

When was your last count?
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9 years 6 months ago #54018 by Trishyrae
Replied by Trishyrae on topic Recently diagnosed
My last count was yesterday. Not bad at 73. I was just going off the description the site gave. I just hate to be over reacting and bother my doc.
Trish
9 years 6 months ago #54022 by
Replied by on topic Recently diagnosed
73k is a good count. Trish you aren't bothering your doctor - that's what he's there for, that's what you pay him for, that's why you have him :)

The website is one that asks for guest posts - I'd tend to go with my gut instead of that site.

If you are concerned call and leave a message to let him know what is going on and ask if he would want to see you before your May appointment.

Keep us posted ok?!
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9 years 6 months ago #54023 by Trishyrae
Replied by Trishyrae on topic Recently diagnosed
Yeah I think I will call tomorrow. I know counts look good but another blister just popped up. Ughhh

Thanks for all the great advice.
Trish
9 years 6 months ago #54025 by
Replied by on topic Recently diagnosed
Glad you'll call - let us know what happens!
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9 years 6 months ago #54027 by Jcallahan
Replied by Jcallahan on topic Recently diagnosed
Trish
Did you talk to your dr? How are you doing today?
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9 years 6 months ago #54028 by Trishyrae
Replied by Trishyrae on topic Recently diagnosed
I left a message no call back yet. The two in my mouth popped and no new blisters today so yay for that.
Trish
9 years 6 months ago #54030 by
Replied by on topic Recently diagnosed
I can't imagine them popping bless your heart.
Hope you get a call back tomorrow.
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