FAQ - Purpura, Thrombotic Thrombocytopenic
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Idiopathic thrombocytopenic purpura patients who do not respond to PRETNIZON (steriods)?

Hi

My boyfriend was diagnozed in May with Idiopathic thrombocytopenic purpura as during a check up they found that he had a very low blood count, the lowest being 17. He has been on high dosages of pretnizon ( a steriod ) as well as some other medication but they have now weaned him off it because his blood count was getting a little higher and then 10 points back down again. Next week he is going for a bone marrow biopsy which I am told they will do from the front (normally in doctor shows it is in the spine but for some reason they are not doing it this way).

Can anyone tell me WHY they are doing this marrow biopsy?

The dr has informed us that it routine and that he should prepare himself for his spleen to be taken out.

Can anyone tell me what the consequences of this are?

ALSO a NEW development, he was laying on the couch and complaining of a severe headache, and after a while I looked at his face and he had a blood spot in his eye. I have looked it up and it LOOKS like a subconjunctival hemorrhage accompanied by a headache.

He is currently on the phone to the hospital (for them to determine if it is serious) but as we are in the Netherlands - and I dont speak nearly enough dutch to keep up - I was wondering if ANYONE had any advice... so that I can be prepared... or at least undestand what it going on.

THANKS
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ITP typically responds well to steroids. When a patient does not respond well to corticosteroids, then we start questioning the diagnosis. The doctors are most likely doing a bone marrow biopsy to be sure that they are not missing any other diagnosis that could explain his low platelets. Spleen removal is usually the next step in a patient with ITP that does not respond to steroids. This is because the spleen is an important part in the destruction of platelets in ITP and if you remove it then you will destroy less platelets. The biggest risk with spleen removal is infections in the future. Doctors usually vaccinate patients who will have their spleen removed against three bacteria (Meningococcus, Pneumococcus and Haemophilus influenzae). Even with vaccination, the patient still is at risk for serious fatal infections in the future. Infections in patients without a spleen require prompt treatment to prevent these serious complications. There are many people walking around without a spleen that are doing just fine. I don't mean to scare you.

Subconjunctival hemorrhages are not really anything to worry about and they will resolve with time. If your boyfriend develops eye pain or visual difficulties then he should see a doctor for it, because this is not typical for subconjunctival hemorrhage and suggests a more serious disease. Headaches are not typical for subconjunctival hemorrhage.  (+ info)

what is thrombotic thrombocytopenia purpura?

I think it is a blood disease
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I can't pronounce it let alone know what it means!  (+ info)

what is ideopathic thrombocytopenic purpura?

Idiopathic thrombocytopenic purpura (ITP) is a bleeding disorder characterized by too few platelets in the blood. This is because platelets are being destroyed by the immune system. Idiopathic means the exact cause of the disease is unknown.
Typically, it is chronic in adults but is usually acute and self-limited in children. Spleen size is normal. Diagnosis requires that other disorders be excluded through selective tests. Treatment includes corticosteroids, splenectomy, and, for life-threatening bleeding, platelet transfusions, and IV immune globulin.
Please see the web pages for more details on ITP.  (+ info)

does anyone here have Idiopathic Thrombocytopenic Purpura?

I have cronic itp and was wanting to hear from anyone else that has it and if it makes them tired, so on so forth
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I found out I had it right after I turned 18. I had a bloody nose that lasted 2 1/2 hours and purple spots showed up on my face and in my mouth and throat. I went to the ear nose and throat Dr to get my nose cauterized and he sent me to the lab to get my blood tested. That's when we found out my platelet count was 5000. If you have it you know that normal is at LEAST 120,000. I was in the hospital for a week.They had to do a bone marrow test which was awful! I got pumped with platelets all week. After I got released I was put on prednisone for 2 months but had a relapse in Feb of the next year. I went in as an outpatient for a day to get platelets again and was put back on the prednisone fro another 4 months.
I have been fine since(I'm 32). Was considered in remission 4 years after. I have a CBC done every year just to make sure and last month I was at a very safe 450,000.
I remember it did make be pretty tired. My friends would get mad because I didnt feel like going out. They couldnt understand the whole thing.
If you have anyother questions, let me know!  (+ info)

Has Anyone Lost someone to Idiopathic Thrombocytopenic Purpura (ITP)?

I am loosing someone to ITP..Not ITP exactly but my little cousin was diagnosed with ITP at 3 years old, but he's been getting really sick on and off for about 5 years now. My cousin is 12 years old and he is now in the hospital in PICU and he has been declared brain dead. The doctors say that the medicine that he was taking to keep his blood level stable caused him to get an infection in his brain, what they think is meningitis. I dont understand how this can happen. and me and my cousins are finding it so hard to cope with this. Has anyone ever lost someone to this? How did you cope and just learn to move on. He hasnt died yet because hes still on a repirator. He cant breath on his own and i know the parents are thinking about pulling the plug. How can this be? This is the hardest thing ive ever been through. If you have information on support groups please send em. I dont want to talk someone but i feel like im cryin out for help. I dont know wat to do n e more.
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I feel sorry your family is going through this experience. Immune suppresion is one of the ways to treat ITP which on the other hand predisposes one to infections, meningitis can be fatal unfortunately, I have copied below the search results on yahoo for itp support groups, if I can help more, please write to me,  (+ info)

any cure for itp i.e.Idiopathic thrombocytopenic purpura?

Idiopathic (immunologic) thrombocytopenic purpura is a bleeding disorder caused by thrombocytopenia not associated with a systemic disease. Typically, it is chronic in adults but is usually acute and self-limited in children. Spleen size is normal. Diagnosis requires that other disorders be excluded through selective tests. Treatment includes corticosteroids, splenectomy, and, for life-threatening bleeding, platelet transfusions, and IV immune globulin.  (+ info)

anybody knows the best cure for - ITP (idiopathic thrombocytopenic purpura)?

try the site below :-)

http://www.annals.org/cgi/content/full/126/4/319  (+ info)

ITP? Idiopathic thrombocytopenic purpura?

can someone tell me as much info as they know..
i dont know aout it and my friend has it..
can it lead to death?
hope not :S
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Idiopathic thrombocytopenic purpura (ITP) is a bleeding disorder in which the blood does not clot as it should. The bleeding is due to a low number of platelets (PLATE-lets), blood cells that help the blood clot and stop bleeding. People with ITP often have purple bruises that appear on the skin. The bruises mean that bleeding has occurred in small blood vessels under the skin.

ITP is largely an autoimmune disease. The decrease in platelets occurs because the immune system attacks and destroys the body's own platelets, for an unknown reason. Normally, your immune system helps your body fight off infections and diseases. But when the immune system mistakenly attacks some part of a person's own body, this is called an autoimmune disease. Because "idiopathic" means "of unknown cause," a better name for most cases of ITP is immune thrombocytopenic purpura.

Have a look at the below website for more info.  (+ info)

Idiopathic thrombocytopenic purpura (ITP)?

Hi im 17 and tonight my brother hit me under the arm 15 minutes later it was really sore. i looked at it and theres this big bruise in the shape of his knuckles. its still hurting. the reason i've asked this as when my mum was 20 she suffered from ITP and she ended up getting her spleen removed. she got really ill. is this hereditary? what should i do. when i was born they tested me for it and i didn't have it then. but saying that my mum didn't get it until she was 20.
Any advice??
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Don't worry about it - the cause is unknown and there is no apparent hereditary link.The odds of getting it are very low - its uncommon problem. Most people that get this only have it temporarily. I had it for about 9 months, it went away after receiving prednisone, and it hasn't come back in the 5 years that have passed. There are also several new drugs for this that are under development, os iot may be easier to treat if you get it someday. Now days, docs have found that removing the spleen can cause more problems than it solves, so splenectomies are done only as a last result.  (+ info)

anyone else have Idiopathic Thrombocytopenic Purpura n been through this?

i had a bone marrow test on my right hip 2001 to confirm i had ITP my dr told me that i would have pain for a week but after 9 yrs i still have it i went back to the dr after 2 weeks n he said there was nothing wrong.after complaining for yrs to different drs i found one that would listen.this doctor did test n said the sciatic nerve was damaged during the bone marrow test.it gets worse every year they thought about deadening the nerve but it would be to dangerous since i have the blood clotting problem.i wanna know if anyone else has itp n had a bone marrow test done n your hip was never right again?
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I have ITP, but I have never had a bone marrow test.
I have checked out this website and found some helpful info.
http://www.pdsa.org/
If you would like to chat, feel free to email me.  (+ info)

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