Platelet Disorder Support Association

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New to this site, Not to the ITP

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12 years 3 weeks ago #36294 by AmberLynn
New to this site, Not to the ITP was created by AmberLynn
I've had ITP since last August, and I feel like nothing is working. I have tried four medications and they all stopped working after about two weeks. I'm not sure where to go from here, because I just turned seventeen and I don't want to have to give up my spleen. Also, my body just feels so bad all of the time. I've been on the steroids since I was diagnosed and they just make me feel worse because I also have fibromyalgia, arthritis, chronic migraines, and lupus. Does anyone have some advice?
“Life is a theatre set in which there are but few practicable entrances.”
― Victor Hugo, Les Misérables
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12 years 3 weeks ago #36325 by Vdeutsch85
Replied by Vdeutsch85 on topic New to this site, Not to the ITP
What treatments have you tried besides steroids? I would def do some research on here about different treatments. I also wanted my spleen so I am doing weekly injections of Nplate which have kept me at safe levels since late April.
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12 years 3 weeks ago #36339 by AmberLynn
Replied by AmberLynn on topic New to this site, Not to the ITP
I've done IVIG, Winrho, and I'm currently trying the Nplate. However, the Nplate makes me feel terrible all the way up to the next injection. It makes my migraines ten times worse and my body aches terribly. This will be the last week with the Nplate and if I feel the same we're going to stop it because of the migraines. The Winrho worked but it shut down my kidneys which are bad anyway, so that is completely out of the question. the IVIG just didn't work. it only lasted a week. The same goes for the steroids, they only worked for two weeks.
“Life is a theatre set in which there are but few practicable entrances.”
― Victor Hugo, Les Misérables
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12 years 3 weeks ago #36344 by rttb1233
Replied by rttb1233 on topic New to this site, Not to the ITP
Amber,

There are other treatments you can ask your hemo to try as well. These include:

Immunosuppressants like Azathioprine (brand name Imuran) and Mycophenolate (brand name Cellcept)

B-cell depletion therapy called Rituximab

These and other treatments are listed under the Treatments tab.

Wish you luck in finding a treatment that will work.
Platelet Disorder Support Association

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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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