Platelet Disorder Support Association

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15 years 3 months ago #5771 by stevek
new to site was created by stevek
well where do I start.Been an ITP patient for almost two years.Have had a spenectomy and it was a failure.Now they are talking rituxian.
this ITP has taken a toll on me .I separating from my wife and have a tough time at job.I need support but dont know where to go.I live in the tampa florida area.
I feel like one understands whats going on.I am steroid dependant and try to deal with the mood swings.but it is difficult.my wife wants separation and may lose my kids.
This has been a dark road for me normally i,m up and alive.the throws of treatment/s has also taken its toll on my family.
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15 years 3 months ago #5772 by Ann
Replied by Ann on topic Re: new to site
Steve, can you get help from your doctor to get off the steroids? It sounds as though you need to and there are other treatments to try. Rituxan is one and there are also newer ones like Nplate and Promacta which are very good and often have no side effects at all, definitely nothing like the steroid mood swings. If your doctor isn't being supportive, then it may be time to find another.
  • 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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15 years 3 months ago #5780 by Sandi
Replied by Sandi on topic Re: new to site
I agree with Ann. You don't have to be steroid dependent if you haven't tried the other treatments. Rituxan is a good one to try next; many have had good remissions from it.

I'd also like to suggest getting therapy. Life with ITP doesn't have to be that way. There are lots of good changes that can be made.
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15 years 3 months ago #5790 by stevek
Replied by stevek on topic Re:new to site
thanks finally someone I can talk to.Yes i,m down to 5mg every other day now .feel better but with the drop from 10 to 5 mgs I went from 298 to 138.the plan is to see where I settle out.And then make a determination of the next course of action.
well for my marriage i think its over and I,m devastated.my son 10 is on vacation out west with his grand parents.this going to crush him ,my daughter is strong.
The dr and i are talking about rituxian as a next corse of action,hes not to keen on nplate.
thanks for the rplies steve
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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.


Platelet Disorder Support Association
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