Platelet Disorder Support Association

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New to ITP- No symptoms besides the low count

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9 years 5 months ago #54536 by MichelleB
New to ITP- No symptoms besides the low count was created by MichelleB
HI everyone, I'm new to the group but very excited to be here. I have been dealing with ITP for about 18 months. I feel fine throughout my very active lifestyle (snowboarding, crossfit, etc) but only feel bad during various treatments. I have done a few rounds of steroids which made me feel awful similar to what i have been told to coming off of hardcore drugs. I just recently completed a 4 dose round of Rituxan, it hasn't affected my count much and i still feel tired and am not back to my normal activity level. my DR said that fatigue wasn't a common side effect of the drug, has anyone else experienced that?
I feel like i feel fine except when I'm being treated....
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9 years 5 months ago #54537 by alisonp
Replied by alisonp on topic New to ITP- No symptoms besides the low count
My son was ridiculously tired when he had rituximab. His doctor said it was the drugs they give alongside the rituximab. I hope you feel better soon.
The following user(s) said Thank You: MichelleB
  • 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 5 months ago #54540 by Sandi
Replied by Sandi on topic New to ITP- No symptoms besides the low count
Michelle:

Most people say that the treatments are worse than the disorder. You're not alone. What are your counts?

Rituxan can take time to kick in, usually 4 to 12 weeks after the first treatment. Hang in there. I hope you see improvement soon.
The following user(s) said Thank You: MichelleB
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9 years 5 months ago #54542 by MichelleB
Replied by MichelleB on topic New to ITP- No symptoms besides the low count
HI Sandi and Alison,
thank you so much for your encouragement and insight. My counts tend to hover between 25 and 45. My DR has me going in for a chest x-ray in a few weeks.
BTW, i spent a few hours reading some of the threads yesterday, its comforting to know there are others in the same boat. thanks for the site.
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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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