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Re: Thrombotic Thrombocytopenic Purpura/TTP

Re: Thrombotic Thrombocytopenic Purpura/TTP

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Posted by Chris on August 10, 2000 at 12:57:22:

In Reply to: Re: Thrombotic Thrombocytopenic Purpura/TTP posted by Cindy on June 29, 2000 at 13:08:46:

Carmen - I agree w/everybody else, you have to hang in there. I was diagnosed in July '99 and in Jan. 2000 I was in remission. The TTP disappeared as mysteriously as it came. We were on the verge of doing the speenectomy (had already had 54 plasmapheresis treatments) when it just went away. I was taking persantine, ecotrin, & potassium every day, Epogen shots occasionally, and fighting frequent infections of my central line (had 4 different central lines). My advice is to pray, pray and pray some more. It worked for me. If possible form a friendship w/somewho is responding to your messages -- Cindy (who responded to you here) was a lifeline to me during my/our illness, she was the only one who understood EXACTLY what I was going through, she was a huge help! Take Care.

: : Hang in there Carmen. You are not alone even though you may feel that way many times.

: : My husband is chronic too with longest interval between bouts being 18 months. He's had it since Feb 1994 with one to two relapses per year. He too doesn't have AIDS, do drugs, or is pregnant.

: : I've walked a little bit in your shoes. If you want to talk more, please email me at [email protected] Take care and God Bless!

: :
: : : Hi my name is Carmen and my husband has had TTP since May 4, 1992. He's a chronic case, with the shortest interval between bouts being a few weeks to going 23 months before the next onset. He was 32 at the beginning of the disease, now 40, and doesn't have AIDS can't be drug related or pregnancy related... He had 3 TTP related strokes the first time he got the disease but none since. He is currently in the hospital with yet another episode,this time it's been 8 months since he last went in. My question is about alternate treatments, the apheresis works well for him usually, and he pulls out of it and comes home...but it always comes back. (three times it was a bit scarier, because he wasn't responding to treatment) He's been on prednisone, persantine, none of which have really helped him, the TTP just keeps coming back. I've heard about spleen removal for chronic cases, is this something that helps one time or could it possibly help him stay TTP free? also, the Vincristine (SP) drug..what exactly is it and what does it do? Is there anything else out there that someone can help me with? I'm desperate here, I would appreciate any links/advice someone could give me...the TTP is destroying us both financially and emotionally, I have nightmares about waking up and finding him dead next to me because I didn't notice the symptoms soon enough...Any response would be greatly appreciated, whether you know of what else to try or not..I've never known anyone else that had this problem to talk to about it...

: : : Thanks in advance,
: : : Carmen

: Hi Carmen - My name is Cindy and I was diagnosed last year with TTP. I had the pheresis treatments for several months, but as soon as I skipped a few days of treatments my platelets would drop. I did not really want to have a splenectomy, but my Dr. insisted on it. Since I had my spleen removed my platelets have stayed in the 500,000 !!! So it has worked for me so far (I have my fingers crossed) My splenectomy was July 6 0f 1999 so it has almost been a year. After this much time, and so much suffering, I would at least consider it.Please get in touch with me if you would like to discuss this further.I will be thinking of you and your husband and hope that everything works out for you. Cindy (e-mail if you'd like) [email protected]

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