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TOPIC: New to this site, Not to the ITP

New to this site, Not to the ITP 5 years 6 months ago #36294

  • AmberLynn
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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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New to this site, Not to the ITP 5 years 6 months ago #36325

  • Vdeutsch85
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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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New to this site, Not to the ITP 5 years 6 months ago #36339

  • AmberLynn
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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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New to this site, Not to the ITP 5 years 6 months ago #36344

  • rttb1233
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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.

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