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Talk to me about Immune Thrombocytopenia Purpura

Posted by bev1951 z7Lubbock,Tx (My Page) on
Wed, Feb 15, 06 at 12:43

The #2 son has been diagnosed with it. So far the high dose steroids haven't worked. After about 10 days his platelets dropped again this time to only 8,000. I'm an R.N. but have been retired for a few years so I'm way out of the loop for treatments. Last night they started him on IVIg. I say they when I mean the Army. He is the 1 that was in Iraq last year. ( Now the #3 son is there)
From what I've been reading the treatment methods are varied with sometimes less than successful results.
If anyone has any information they wouldn't mind sharing I would appreciate it so much.
Thanks everyone, Bev


Follow-Up Postings:

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RE: Talk to me about Immune Thrombocytopenia Purpura

Hi Bev,

I don't know anything about this disease ITP but a friend of a friend had ITP and for whatever reason the final result was that they removed her spleen and she has been ok since.

I have had an idiopathic disease called H.E.L.L.P Syndrome which is also thought to possibly be related to autoimmune disorders. The body reacts similarly in that it attacks it's platelets until the end result of kidney failure, lethal seizure and liver rupture. I was pregnant with my twins when I had the platelet disease. My platelets dropped to 6,000 per mm3 and I was very sick. Critical. The only treatment was to deliver my twins 3 months early. I recovered in about 2 weeks. The twins will be 11y/o in a week. Of course this is apples and oranges but I just wanted to let you know that I understand how scary this can be.

Stay positive Bev and hopefully someone here can give you the information and reassurances you need.

Barb


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RE: Talk to me about Immune Thrombocytopenia Purpura

Thanks Barb, I'm very glad that you & your twins are fine. Having them that early must have been frightening. They are truly miracles.
It is scary, we want to keep his spleen because without the Army may not keep him & he wants to stay in for at least another 12 yrs, he's going on 8 now. That & the war, he wants to stay in til it's finished.
Hug your babies for me & thanks ! Bev


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RE: Talk to me about Immune Thrombocytopenia Purpura

I know this post is fairly old, but i am current a Soldier stationed at Fort Hood. I am also currently at Scott and White Hospital in Temple,Tx. U have been here a week today. I went to the Emergency room wondering what the red spots all over my body was. come to find out my count was a 1,000 after two platlet transfusions they rose to 4,000. on day 4 in the hospital, they got to 24,000, things were looking up, then the next day i was back down to 14,000. I too am in the steroids, and they seem to not be working.this mornings count is at 13,000. My docs are going to do a Bone Marrow Biopsy tomorrow morning in hopes they can come up with the cause of my body not keeping any platlets. They have not suggested any sort of surgery just yet. But i am after the biopsy i will know more. Like the other soldier, my army career is on a stand still til they can get my count to a normal level atleast so i wont be at rick of major bleeding or bruising. Anyways, i just thought i would add a comment to say i know what he is going through and its not fun at all. Good luck to all.


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RE: Talk to me about Immune Thrombocytopenia Purpura

Hi...we have had a family member who had this condition about 10 years ago. It was a very frightening time for us. Their blood platelets dropped to 4,000 also. Then for the next year we were on a roller coaster ride with steroids, where the platelet count would come up and off of them and it would go down. We did research looking for an alternative treatment but didn't get too far with that. Finally, when we were adamant that we did not want to keep giving steroids due to the serious side effects and the temporary lift it brought, they offered us an experimental treatment, which was given by IV. It was a blood product, that was not easy to take but we did get immediate results, and for the first time we had a rise in platelets that didn't go right back down. They had to administer the treatment maybe three more times over the course of 6 months and we finally reached and maintained a very low platelet level that was acceptable, but we would have to be careful to avoid contact sports etc. So we could stop the treatments at that point and life began to return to a fairly normal state. Over the next year or two, with weekly, then monthly blood testing, gradually the platelet level continued to reach higher levels and it has been many years since then and it remains a problem of the past. We never did find out what the cause was. I hope that will give you something to ask about.


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RE: Talk to me about Immune Thrombocytopenia Purpura

We have taken care of patients with ITP on the floor that I work on at the hospital. These patients were treated with Plasmapheresis. I think this is usually only for very severe cases ( I'm not sure what constitutes "very severe").


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RE: Talk to me about Immune Thrombocytopenia Purpura

I have ITP, but haven't had a relapse in over 3 years. The site below might offer some insight for those that are interested.

Diana

Here is a link that might be useful: Platelet Disorder Support Association


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