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Please Help

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13 years 4 months ago #25167 by KimC261
Please Help was created by KimC261
I was diagnosed with ITP in 1992. I went through 2 years of Plasma and Platelet tranfusions as well as tons of Prednisone. In 1994, I had a splenectomy. For the last 18 years, I have been in "remission", until today. I got some blood work back on a routine issue and my platelet count today is at 57,000. I was floored. I have not seen numbers that low since BEFORE I had my spleen removed. I have made an appointment with my trusty Hematologist, but I just don't know. Are there new cures, assistance out there now?
  • 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 4 months ago - 13 years 4 months ago #25171 by Sandi
Replied by Sandi on topic Re: Please Help
Kim:

There are a lot of new treatments now. Prednisone is usually the first thing used though, so you might just be back on that again for a while. No cures - there are no cures for any autoimmune disorders.

57,000 is still above treatment level and it's a safe count, so you may not even have to treat for a while. Usually 30,000 and below is the standard protocol treatment level (unless there is bleeding).

They don't do plasma or platelet transfusions anymore and even splenectomy is becoming a thing of the past.
The following user(s) said Thank You: KimC261
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13 years 4 months ago #25217 by KimC261
Replied by KimC261 on topic Re: Please Help
I understand, and I KNOW there are many out there that WISH their platelets were as high as mine are now, but after 18 years of them being above 100,000 now they are at 57,000? This will affect my job in SOOO many ways.:(
13 years 4 months ago #25218 by
Replied by on topic Re: Please Help
www.pdsa.org/treatments/conventional.html

www.pdsa.org/treatments/complementary.html

If there was a cure this site wouldn't be necessary.

See what your hematologist has to say and go from there. Who knows, your count may be up with your next blood work.
  • 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 4 months ago #25226 by Sandi
Replied by Sandi on topic Re: Please Help
There are ways to handle it so it doesn't affect your job a lot. What do you do?
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13 years 4 months ago #25230 by Dean
Replied by Dean on topic Re: Please Help
How will it affect your job?
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13 years 4 months ago #25276 by KimC261
Replied by KimC261 on topic Re: Please Help
Ok, I wan't trying to offend you with the "cure" aspect, it has been 18 years since I have had to deal with this, so I did not know what new, if anything was out there.
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13 years 4 months ago #25277 by KimC261
Replied by KimC261 on topic Re: Please Help
I am a Narcotics Detective, I buy dope undercover and I kick in doors on a daily basis. It's the least of my worries at this point. I see my Hematologist this Thursday and hopefully I will have more answers by then.
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13 years 4 months ago #25278 by KimC261
Replied by KimC261 on topic Re: Please Help
I am an Undercover narcotics agent. I buy dope undercover and kick in doors on a regular basis, a "free bleeder" is NOT what they are looking for, however, it is the least of my worries at this time. Thank you for your response.
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13 years 4 months ago #25283 by Ann
Replied by Ann on topic Re: Please Help
There are new treatments, Nplate and Promacta but the idea of those is to keep the count at about 50 so at the moment you wouldn't want to consider them but they are there if you need them.
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13 years 4 months ago #25284 by KimC261
Replied by KimC261 on topic Re: Please Help
Thank you Ann, I understand my platelet count is good, but for the last 18 years it has been well above 100,000, and now all of a sudden, it is down to 57,000. I go see my Hematologist this Thursday, so hopefully, I will have more answers than questions by then. Thanks again.
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13 years 4 months ago #25287 by Ann
Replied by Ann on topic Re: Please Help
Good luck. Keep us posted.
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13 years 4 months ago - 13 years 4 months ago #25310 by Dean
Replied by Dean on topic Re: Please Help

KimC261 wrote: I am a Narcotics Detective, I buy dope undercover and I kick in doors on a daily basis. It's the least of my worries at this point. I see my Hematologist this Thursday and hopefully I will have more answers by then.


I like your line of work. Sounds like you are one Bad A** woman. I see how low counts could pose a problem for you. The count is not horrible, but I can understand your frustration with the drop!!! Hope your counts will have increased when you go in! I have been in remission for almost 3 years with counts ranging from 160-200k. Rituxin has been my treatment. First round of treatments lasted 16 months, second round has me in remission for almost 3 years. Good Luck. Keep busting those users/dealers!!!
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13 years 4 months ago #25333 by Mark
Replied by Mark on topic Re: Please Help
If you work undercover and that's really your photo, maybe you should remove it....
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13 years 4 months ago #25337 by KimC261
Replied by KimC261 on topic Re: Please Help
I work in a small town, I am not DEA, ATF or the FBI. It is NOTHING like what is seen on television. I do not work long term undercover, that is something that is VERY rare. Too many misconceptions out there. I would not have posted my photo if I thought it would endanger myself or my family.
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13 years 4 months ago #25344 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Please Help
Good luck to you and try not to worry too much. Sometimes something causes them to go down for a while. You still have a very good count.
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13 years 4 months ago #25364 by Nicola82
Replied by Nicola82 on topic Re: Please Help
I had Itp as a child and had spleen removed when I was ten then at 28 I was told my platelets were 3 I've had all treatments available on nhs and even a trial drug romiplostim and I've still only got 1 platelet I suffer with bruising bleeding pv for about 9 weeks I sleep all the time and they not going to treat me now onless I lose alot of blood my platlets went up to 60 for one day an day after they was 27 then a week later I had 3 so if u do get recommend for any treatments it would be wise to see the side effects because they Carrie more risk I live in fear of a major bleed but I wouldn't like to go bk to treatment as it also makes it worse in my case good luck in ur future test x
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13 years 4 months ago #25409 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Please Help
You've made it to 28 years old. So there always the chance that you can keep going like you are. There is another person in the ITP newletter who made it for 40 years with platelets hovering around 10,000.

Good luck to you and God Bless.
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13 years 4 months ago #25419 by Dean
Replied by Dean on topic Re: Please Help

DeeDee Marie wrote: Good luck to you and try not to worry too much. Sometimes something causes them to go down for a while. You still have a very good count.


I agree. I feel stress has an impact on Platelet counts.
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13 years 4 months ago #25420 by Ann
Replied by Ann on topic Re: Please Help

Dean wrote: I agree. I feel stress has an impact on Platelet counts.

It doesn't for me. Not everybody is the same.
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13 years 4 months ago #25427 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Please Help
I feel it is true. At my last doctor's appointment in November, my Hemo told me that everyone of his patients (except for two) had relapsed with their ITP which he believed it
was due to stress and maybe their job. And, he has a lot of patients and is a friend of Dr. Lieberman of USC.
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13 years 4 months ago #25429 by Ann
Replied by Ann on topic Re: Please Help
Yes, I wasn't saying it wasn't true for some, just that it isn't true for everyone. I think it's important to make the distinction that stress is not a factor for everyone. I know it isn't for me because some of the most stressful times.. new job, moving house, surgery etc have not seen my count drop.
  • 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 4 months ago #25431 by Sandi
Replied by Sandi on topic Re: Please Help
If that were true for everyone, I'd have had about 50 relapses in the past 7 years. Stress is a huge part of my life. I know that it does cause Lupus to act up though. For me anyway. My body reacts with a lot of inflammation.

Stress is subjective. What causes stress for one person may not cause stress for another. Some people can handle certain types of stress and actually thrive on it. It can snow ball though; if you are stressed and get more of it piled on, the affects can be cumulative and difficult to recover from.
  • Kim
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  • Diagnosed with ITP in 1983, lupus in 1990, APS in 2001, vasculitis in 2006. Current platelet count 148. In 2007 I had a stem cell transplant for autoimmune disease and currently ITP and APS remission, with a reduction in lupus activity.
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13 years 4 months ago #25460 by Kim
Replied by Kim on topic Re: Please Help
Kim,
Wow... 18 year remission, then bang. I can certainly understand how it has floored you.

Have you been having regular CBC's, could it be you've run a low count for a while and never knew it?

Have you had a repeat count yet? Maybe you've just dropped down due to a virus,or something and it will pop back up.

A splenectomy does't "cure" ITP -- those platelets are still targeted by autoantibodies. By removing the spleen, you remove a major source of platelet destruction and removal, but other tissues can take over. Maybe it's only temporary, or maybe a short course of steroids will result in a remission again. Keep us posted on your progress.

Exciting job you've got.. keep up the good work.

Kim
Platelet Disorder Support Association

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