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TOPIC: Please help to understand ITP

Please help to understand ITP 10 months 3 days ago #64017

  • NK18
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I am very new to ITP and don't know much. I am trying to educate myself, but absolutely have nobody to talk to. In anyway, I joined facebook group and read stories time-to-time. Each time I am getting scared more and more.... I have counts 39-44. Back in April it was 82, then in May/June 44, 39-40-44. I am seeing hematologist every 4 weeks. I know not to do any treatments if I am above 30. I am very easily bruised now and have petechiae (not bad, between the visits it might get a little worse, but then despairs.) Because I do not have much other symptoms, I am trying not to think much about ITP. But to bring myself to the reality I check facebook time to time. It really upsets me and gets me scared, but as I said at the beginning I do not have anyone to talk to about ITP. So here comes my naive question, please tell me how serious ITP is. I guess, I just need to hear from someone. From the stories I read, there are some people have treatments when they count the same as mine. Others get in the hospital/ER to check counts and consider 32-40 is low. Then there are others, who say "yay" my count is 44 today. :S I have standing order and can check my counts every week, but I don't want to be seen as paranoid. Honestly, if I could I would check it as soon as I see I bruise a little more easier than usual. I am completely confused how to take this disease and still hope to have a quick recovery. Treatments are bad as well, but maybe with them I will go to remission. To finish my post, here where I am now: Today I started strongly coughing for some reason (something is tickling my throat. maybe getting sick...) and I felt a little blood in the throat. I think everybody does feel it if coughs very strong. It was for a couple of seconds and then was gone. Now part of me thinking that maybe it is somehow connected to ITP and I need to ran to ER, whereas other part tells me to relax and stop being paranoid. :blink: Thank you for reading my long post!

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Please help to understand ITP 10 months 2 days ago #64021

  • PROESCHOLDT
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You are not alone when trying to learn more about ITP. I was "diagnosed" about 8 years ago when my counts dropped below 150 (although they were dropping long before that!) and continued to drop gradually to around 30. The only symptoms I have are occasional bruises, but not too many and and an occasional blood blister in the mouth. I feel great and have plenty of energy at 69 years old. I have avoided taking any prescription medications and am trying to control things by nutrition, diet, supplements, etc. I am not a supporter of "Big Pharma" and question whether they really want to help the patient? or just make money! Clearly, there are political and business issues involved. Just recently, the 20th anniversary of PDSA conference was held in Cleveland that we attended and it is a great source of information (as is this website). We were able to talk with many other ITP patients as well as some of the medical experts within a small group format. Many of the patients had taken numerous medications with no results.
When my wife and I were on a recent cruise around Japan, I met a hematologist from New York (also had ITP!) who urged me to relax, that much of the ITP could be mind related - and I have been trying to do that in addition to some meditation.
I believe it could also be related to the immune system and I have been taking probiotics to get good bacteria into the gut (the microbiome) in addition to papaya leaf extract. I have had allergy tests, h.pylori tests, small intestinal bacterial overgrowth tests, heavy metal tests, etc. and nothing is clearly evident as to the cause of the ITP. I would like to get an intestinal permeability test, but the GI doctor did not want to do this.
I also try to monitor MPV - mean platelet volume - as larger platelets will clot easier, hence can tolerate lower counts (sometimes they are unable to get an MPV reading - my platelet volume is very large!). I used to check counts frequently, but now only about once every three months. Save your platelets!
That's enough for now. Hope this gives you some ideas. ITP is very rarely a fatal disease and everyone responds differently.
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Please help to understand ITP 10 months 2 days ago #64022

  • 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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NK - Many people on FB groups do not understand ITP very well, so you'll drive yourself crazy listening to them. I've visited a few and felt totally frustrated with the lack of knowledge.

Your counts of 39k to 44k are safe counts and most wouldn't worry much with counts in that range. You have to go by symptoms and if it's normal for you to bruise and have a few petechiae with this count, then that's your norm. If you see an increase in symptoms or your count drops below 20k, then you might want to look into treatments. It seems like you've been doing this for quite some time and have been doing ok, so let that be your guide.

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Please help to understand ITP 9 months 4 weeks ago #64054

  • NK18
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I think I am worried for my kids. I read FB discussions and people are dying from ITP. So I stared to think it is not that rare. But then everywhere else it says that it is very rear. I decided not to visit FB unless I have a treatment. Will check how people are dealing with that. Do you think I should get a bracelet to show I have ITP just in case? The platelets are not supper low, so I am not sure about it. I don't see them jumping up and down. But still they are low. I wanted to visit ITP conference this year, but I am so new. I was not sure it would be worth it. And I am still hoping that next blood draw my ITP will be gone! Silly of me, but last time they were 44, which is better than 40.:)

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Please help to understand ITP 9 months 4 weeks ago #64055

  • NK18
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Thank you for your reply. I saw rheamotologist and I do not have anything from her perspective to cause ITP. H.pylori- do not have either. I decided that it is enough for me to stop figure out what could cause ITP.:) My hemotologist said she will see me every 4 weeks indefinitely because my counts are low and there's not enough buffer for them to drop lower safely. She said she might think to move it to 6 weeks but it will not happen soon, she wants to see my pattern- whether will drop or stay the same, or grow.

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Please help to understand ITP 9 months 4 weeks ago #64056

  • 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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Why are you worried for your kids? Do you think they will get ITP because you have it? My kids are all grown (in their 30's) and none of them have ever had ITP.

People do die from ITP, but it is rare. You might read about a death, but you don't know the story behind it. Sometimes there are circumstances that puts a person more at risk and sometimes the treatments are actually the cause. Generally, healthy people with no health risks do okay. You are being monitored and you are vigilant which is the best thing you can do.

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