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ITP Support Association
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I don't know if I really have ITP!

I'm 21 years old, I knew that I have thrombocytopenia two years ago, but no one had really diagnosed the reason, I have a swollen lymph node behind my ear, which I noticed that it dissappears when my platelet count is normal.. Could this be ITP?💔

I live in an Arabian country, which have no supportive people at all..even my doctors💔

And no one hears about "ITP" or know what is it so it's hard to explain when I'm tired or something😂

So glade that I found people have experienced this disease just like me❤️

15 Replies
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Hi AlaaYasse welcome to our community, we will listen and share our experiences. This site has a great educational section check it out and learn as much as you about our disease and treatment options? The more you know the better the the care you will receive. There is no cure at this time only management of symptoms but research is ongoing.

I was diagnosed in early 1990’s. I failed Dexamethasone, IVIG and Rituxan before I was started on weekly Nplate injections to maintain my platelet counts over 50 thousand which is the goal of treatment. Normal platelet count is 150 to 450 thousand; 50K is low but sufficient to live a fairly active life until a cure is found. Be well:)

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Best wishes to you🌸

Thanks for the support

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Hi! You can't know without knowing your blood platelet count. How low were your platelets 2 years ago? Have you a CBC done recently? for the diagnosis platelets need to be under 100. Best wishes to you!

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My platelet count is really unstable, one month ago they were 29000,after 2 weaks they became 248!

But yesterday they became 90 again

I have only Prednisolone

Thanks for replying❤️

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Hi! How long you are taking prednisone & what is the dosage ?? Did you taper the dosage recently ? Best wishes for your earliest recovery!!!

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I'm taking it since April/2018

I've started with 50 mg per day, that day when I started taking it my platelets count was 15,000, after taking Prednisolone the platelets count became 90,000.

Now I take 20 mg per day, and I didn't taper the dosage lately

And to be honest I've stopped seeing doctors because no one of them could help me to know what's going on with me or what's the cause of this, I also have swollen lymph node behind my ear, which I noticed that it dissappears when my platelet count is normal

Thanks for replying, best wishes for you, too🌸

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Hello AlaaYasse and welcome! I'm curious about how you were "diagnosed" 2 years ago. Yes, your platelet count was low and this is thrombocytopenia, but did you have any other diagnostic tests? ITP is usually a diagnosis of exclusion. Lillaa asked if you had a CBC, if you did was it otherwise normal? Have your doctors suggested a bone marrow biopsy to rule out more sinister causes (lupus, leukemia)? I'm a little concerned about the lymph node behind your ear, though that's not a particularly bothersome place for an enlarged node, I would ask you doctor about it. Lymph nodes behind the ear drain the scalp area if in not mistaken. Have you had any injuries to your scalp which would explain the enlarged node? I know you are taking prednisone, and its a good sign that your platelets responded well, but steroid use is not optimal and shouldn't be considered a long term solution. You should also taper off of them considering how long you've been taking them, and only under your doctors recommendation. I would ask your doctor about Rituxan. Its given in 4 weekly infusions, and many have had very good responses and long term remissions. It takes a month or so to be fully effective and my guess is you could continue your prednisone while being treated. The prednisone would then be gradually tapered and your platelets would slowly increase. If rituxan is not effective I would ask your doctor about the TPO receptor agonists (NPlate, Promacta) or the newer SYK inhibitor Tavalisse. As a LAST resort you could consider splenectomy, this is effective in about 70% of cases, but does have some considerable side effects, and is of course, irreversible. To sum up, please make sure that you actually have ITP. If you are sure, ask your doctor about the various treatments. Don't stay on prednisone long term. Also, its said often here, treat the symptoms not the numbers. Many people live perfectly normal, healthy, active lives with platelets below normal levels. Ask your doctor about this too. I hope I've helped a little bit. I wish you peace and good health!

eric

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When I was diagnosed I did a CBC just to check up and had no idea before that day about the thrombocytopenia I have.

I also had ANA test and the result was 1/40, I'm not sure if this would be helpful to know whether I have an autoimmune disease..

The CBC is normal usually except plt, MCH, MCHC, because I also have iron defeciency anemia.

I had a bone marrow biopsy and the doctor said that everything is normal.

I have no injuries, and this swollen node had appeared when I was 12 years old and still swollen, it becomes bigger and smaller, it's size changes.

My doctor said that I'll have Prednisone for ever and no way to get rid of it💔

And the doctors didn't suggest to take any other drug, they even not sure if I have ITP.

Can you suggest me any lab tests would be helpful?

Thanks a lot for helping eric🌸

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Hello AlaaYasse

So my guess is the swollen lymph node is not much of an issue since you have had it for 9 years. A normal bone marrow biopsy is good, as it rules out something like leukemia. I'm not sure how to interpret the ANA results, it's possible since ITP is an autoimmune disease of sorts, it may give a positive result on an ANA, but you need to ask your doctor about this. To my knowledge there is no lab test that will absolutely confirm ITP, but you seem to have many of the symptoms. I hope you can see a good hematologist because a general physician may not be familiar with ITP, or its many treatments. I am also concerned that you doctor said you will take prednisone forever, PLEASE get another opinion. Steroids have many bad side effects, especially when taken long term. Ask you doctor about the treatments I mentioned in my first reply and treatments others here have mentioned. Prednisone is NOT the answer long term. I'm NOT a doctor but my guess is others in this group would agree. I forgot to ask before, did you have any kind of illness prior to your low platelets? There is some speculation that some viral infections can cause ITP. The cause of ITP is not known, there are just some theories, so its doubtful you will ever know what caused it. I hope this helps. Please keep us up to date. I wish you peace and good health.

eric

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I had a bone marrow biopsy and everything is normal.

I really don't have any idea when all this started because I didn't had any symptoms for thrombocytopenia and knew it when I was doing CBC to check up.

Thanks for helping🌸

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Hi AlaaYasse,

Welcome to this community. There is much good information to be found here. I'm in Canada and have a haemotologist but have many of the same questions as you. Not much seems to be known about our condition and information from our group has been very helpful to me.

Good luck,

Frankie

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You've diagnosed with ITP or still having thrombocytopenia with unknown reason for that?

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I have been diagnosed with ITP through a blood test. My platelets bounce and have gone below 19,000. 'Ideopathic', as in the 'I' of ITP means they don't know the cause. Let's hope resources are put to study it. There is a British group, the 'ITP Support Association', who publish a magazine called 'The Platelet' and who have a number of medical advisors associated with them. There is a wealth of information out there.

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So glade that I found this site.

I wish you a good health and recovery🙌🏻🌸

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And I you. Good luck to us all! 👏🏼🌺🍀✨🌈

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