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Newly Diagnosed

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14 years 10 months ago #314 by baiza85
Newly Diagnosed was created by baiza85
I have always had Iron defeciecy anemia so I have been going to a hem. doctor for quite some time. On January 15, 2010 during a regular blood test it was discovered that my platelet count was 26,000. My doctor put me on 60mg of prednisone a day and a week later my count was 181. I was droped down to 30mg a day and now my platelets are at 76. My doctor has decided that I may need to try Rituxen or to have my spleen removed?? What questions should I be asking? I feel like this is all happening so fast! :dry:

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  • 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 10 months ago #323 by Sandi
Replied by Sandi on topic Re: Newly Diagnosed
It is happening too fast. Wow - he's in a rush! Most would slow down the Prednisone taper at this point...in fact, maybe bump it up a bit. You responded very well to it, but the quick drop down was too fast.

Splenectomy is usually a treatment saved for a later date, certainly not two weeks after diagnosis. As for Rituxan, that is also a fast jump considering he didn't really give Prednisone much time.

Have you been happy with his care for the anemia? If you hadn't been seeing him prior to ITP, I'd suggest a second opinion. 76 is still a very good count.

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14 years 10 months ago #328 by baiza85
Replied by baiza85 on topic Re: Newly Diagnosed
My doctor has been excellent with the anemia and since my platelets had dropped in the past he told me that he had always felt I had ITP but my count had never been low enough to treat. I ask him if I should just continue on prednisone for now and he has concerns about the side effects but like you said I feel that the other options ae a bit extreme right now. I'm only 24 and with the anemia my immune system seems to be a little weak already and while they say the risks of serious infection isn't likely I would definately like to keep my spleen! Do you know if its normal to drop so much in a week while still on meds?

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 10 months ago #330 by Angel85
Replied by Angel85 on topic Re: Newly Diagnosed
I don't know if it would be considered normal, but mine dropped from 76 to 47 in a week while still on the same dose of pred. I am currently on 40mg a day when that happened. I'd advise you to not stay on the pred for too long, particulary with the higher doses, the side effects are just not worth it.

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14 years 10 months ago #332 by baiza85
Replied by baiza85 on topic Re: Newly Diagnosed
I think thats why my doctor lowered it so fast. I would really like to be off the pred but I'm not to happy about the other options.

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  • 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 10 months ago #334 by Sandi
Replied by Sandi on topic Re: Newly Diagnosed
Have you ever been tested for Coombs antibodies? The answer to that could make a difference in the treatment decision.

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14 years 10 months ago #335 by baiza85
Replied by baiza85 on topic Re: Newly Diagnosed
What is the Coombs test? I don't think that my doctor test me but I'm not sure. Have any of your doctors ever done bone marrow asperations? I haven't had one but I heard that sometimes they do them.

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  • 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 10 months ago #343 by Sandi
Replied by Sandi on topic Re: Newly Diagnosed
I'd ask about the Coombs.

Yes, many of us have had bone marrow biopsies. Usually they are not necessary to diagnose ITP, but if you have multiple issues, it wouldn't be a bad idea.

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14 years 10 months ago #555 by farida
Replied by farida on topic Re: Newly Diagnosed
sadi what make different if the combos test positive, as you know my son's was positive on last march and then negative on may , he got platelts transfusion on july his comos test became positive , and then negative again, do you have any asnwer for that

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  • 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 10 months ago #563 by Sandi
Replied by Sandi on topic Re: Newly Diagnosed
A positive Coombs test and low platelets might indicate Evans Syndrome.

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14 years 9 months ago #876 by farida
Replied by farida on topic Re:Newly Diagnosed
and what is the treatment of evans syndrom

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14 years 9 months ago #1097 by farida
Replied by farida on topic Re: Newly Diagnosed
sandi i know that, but if the red blood cells count in normal range the all time , thank good for that, and the hemogloubine is good too ,i asked the doctors about his commbs test was positive twice , they said no worries, its just (+)so little,

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  • 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 9 months ago #1099 by Sandi
Replied by Sandi on topic Re: Newly Diagnosed
That's all good, just something to watch.

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