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So, what happens when nothing works?

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12 years 2 months ago #37840 by mngrrrl
So, what happens when nothing works? was created by mngrrrl
Hi, everyone. I was diagnosed 10 years ago, and have tried everything from steroids, IViG, Promacta, Rituxan, splenectomy, and now NPlate. Nothing is keeping my levels above single digits except the 'roids, which I cannot take any more. So. I am assuming that I will just need to live a very careful life and hope for the best. Does anyone have advice for me as to how that goes? Thanks.

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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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12 years 2 months ago #37842 by Sandi
Replied by Sandi on topic So, what happens when nothing works?
There are a few people here who manage living with low counts. It all depends on symptoms. How are yours when counts are low?

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12 years 2 months ago #37844 by mngrrrl
Replied by mngrrrl on topic So, what happens when nothing works?
Petichiae, mouth sores, fatigue. No bleeding so far. Hema has discussed with me the dangers of GI or a brain bleed.

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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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12 years 2 months ago #37848 by Sandi
Replied by Sandi on topic So, what happens when nothing works?
Yes, that is a risk, but very rare. Have you tried CellCept or Imuran? They may be long shots, but might be worth trying.

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12 years 2 months ago #37893 by Vdeutsch85
Replied by Vdeutsch85 on topic So, what happens when nothing works?
At the conference they discussed a regiment of a drug called Amicar just used three times a day to try to stop bleeding. There are also some meds similar to it.

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Platelet Disorder Support Association

Platelet Disorder Support Association
8751 Brecksville Road Suite 150
Cleveland, OH 44141
440.746.9003  |  pdsa@pdsa.org
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IMPORTANT!

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.