Platelet Disorder Support Association

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Nothing is Working

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14 years 10 months ago #307 by mleuch
Nothing is Working was created by mleuch
I was diagnosed with ITP after developing petechia all over my legs and having a platelet count of 5. I was admitted to the hospital and initially responded to dexamethasone and IVIG. Three days later my counts went from 39 to 3. I received more IVIG and a splenectomy and I got to 119 on prednisone. Four days later my platelet count went back to 16 even on the high dose prednisone. My doctor insisted on rituxan that same day. I agreed with her decision but I'm feeling overwhelmed that everything is moving so quickly and my platelet count doesn't seem to really be improving. Has anyone else experienced such frustration?

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14 years 10 months ago #308 by joycefleming
Replied by joycefleming on topic Re: Nothing is Working
hang in there this is not a fast fix problem . Our bodys take time to recover from all of the meds and stress that we go thru at this time , lots of success stories out there read them , they will help

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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 #324 by Sandi
Replied by Sandi on topic Re: Nothing is Working
Many people have been frustrated, believe me. It can take time to find the right treatment or combination of treatments.

Rituxan can take weeks to work, so hang in there for now. You might get a response from that - there is always that hope.

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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 #331 by Angel85
Replied by Angel85 on topic Re: Nothing is Working
I agree, it is not something that is gonna be solved overnight, it is a long drawnout process and somedays you will feel like your finally on top of it and then the next day or next week, it all comes crashing down and u feel like your starting all over again. Hang in there and stay strong xox
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14 years 10 months ago #440 by barrelgal
Replied by barrelgal on topic Re:Nothing is Working
I think we all get down and depressed with this at first. Don't obesess (easier said than done!) There are lots of treatment options out there with even more on the way. Take some time to look around these boards. There are pleanty of people here who have been around for years and have some really great advice. Make sure you educate yourself as much as possible, you can't rely on your doc to know everything about this, but you should feel comfortable bringing up treatment options with him and getting his advice. Good luck!

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14 years 9 months ago #578 by cheermom926
Replied by cheermom926 on topic Re:Nothing is Working
There is no "quick fix". I have changed my mind set. I don't obsess over the counts so much anymore. I go by how I feel. This has done wonders!!!
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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