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TOPIC: ITP passed down the Hereditary line - has anyone seen this?

ITP passed down the Hereditary line - has anyone seen this? 5 months 1 week ago #68184

  • jjc
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I am a new member. I found this site while looking up ITP, which I have, and how it reacts with Humira, which I am on. That's another story. I have had ITP since my mid 20's, and maybe even earlier. I never knew what ITP or Low Platelets where until a wellness test revealed they were low, very low. I am typically in the 50's. I talked to my mom, and she said that she has it, and her sisters have it, and most of my cousins all have it. Its never been an issue for any of us, and to my knowledge, it still isn't. My Rheumatologist suggested I contact my Hematologists to make sure there are no complications with ITP and taking Humira. Has anyone had any issues with Humira? I read a few posts, and some seemed like ITP happened all of a sudden, but I didnt see any where it was within the family. Is this not common? As I have had no continuing issues, there has been no need to do anything about it, I just monitor it. The ONLY issue I ever had was I needed nose surgery, to fix a seriously deviated septum, and they wanted my count to be above 100 before doing the surgery. I went through a month of hell trying to raise them up, and finally they had to give me platelets right before surgery. Thats another story as well. Anyway, I really wanted to find out if others out there have seen this in the bloodlines, and if anyone has had any issues with Humira.

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ITP passed down the Hereditary line - has anyone seen this? 5 months 1 week ago #68188

  • JJ
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Familial thrombocytopenia isn't actually ITP, it's something separate caused by a genetic abnormality and not by antibodies. This means that the usual treatments.. steroids, IVIG, immunosuppressants won't work. As with your family, the count doesn't usually go low enough to treat anyway.

There is a familial thrombocytopenia register where they hope to find the genetic differences involved but it is in the UK. A haematologist would know if there's one where you are, or if the UK one accepts from other countries, if you are interested in assisting research.

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ITP passed down the Hereditary line - has anyone seen this? 2 months 2 weeks ago #68632

  • Aaw7
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So this doesn't have to do with the Humira, but my cousin and I both have ITP. He was diagnosed much earlier than I was, but since it is such a rare condition, I thought that this was interesting that both of us ended up having it. I've always wondered though if it was genetics or anything, but no one else in our family has ITP.

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ITP passed down the Hereditary line - has anyone seen this? 2 months 2 weeks ago #68638

  • JJ
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Autoimmune diseases run in families. In my family people have various autoimmune problems from thyroid, to alopecia, to psoriasis and so on. So it may be coincidence that you both got the same one.

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ITP passed down the Hereditary line - has anyone seen this? 2 months 6 days ago #68692

  • Hal9000
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jjc, I was talking to someone with Rheumatoid Arthritis and was taking Humira, but didn't have ITP. But the conversation got me thinking. Do certain auto immune diseases go with certain other auto immune disease? Additionally, whether certain combinations exist within an individual, or, whether certain other combinations exist within a family. Seems like this could be easily studied.

For example. I don't think it is an accident that those with both ITP and Lupus always respond to steroids with both diseases - at least on this forum.

If you don't mind me asking. Steroids provide arthritis relief, correct? When you raised platelet counts for surgery. Did steroids raise counts, or ?

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ITP passed down the Hereditary line - has anyone seen this? 2 months 5 days ago #68694

  • JJ
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Hal, you are barking up the wrong tree here. jjc obviously doesn't have autoimmune ITP. They said that they needed platelets for surgery so the treatments didn't work.

ITP often goes with lupus, Sjogrens and APS. That is no mystery, it's already known.

www.ncbi.nlm.nih.gov/pmc/articles/PMC5268034/
The following user(s) said Thank You: Hal9000, MelA

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ITP passed down the Hereditary line - has anyone seen this? 2 months 1 day ago #68741

  • Hal9000
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JJ wrote: Hal, you are barking up the wrong tree here. jjc obviously doesn't have autoimmune ITP. They said that they needed platelets for surgery so the treatments didn't work.

Ruff, Ruff. LOL

JJ, there are lots of folks that don't respond to either IVIG or steroids, yet are diagnosed with ITP. Here is one list (first 8 of the 11) I made a year and a half ago.
pdsa.org/discussion-group/7-treatment-general/30169-no-response-to-ivig-ack.html#64535

Perhaps the logic is confusing? An IVIG response is evidence for ITP. A steroid response is evidence for ITP. But the absence of a response to both is not evidence of no ITP.

ITP often goes with lupus, Sjogrens and APS. That is no mystery, it's already known.

www.ncbi.nlm.nih.gov/pmc/articles/PMC5268034/

Yes, I'm aware these problems often go together. I was making a stronger point though. Here is the implication. Many folks with ITP do not respond to steroids. I'm pretty sure, many folks who have Lupus do not respond to steroids. Yet everyone that has both conditions respond to steroids with both conditions.

Am I wrong about Lupus and steroids?

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ITP passed down the Hereditary line - has anyone seen this? 2 months 22 hours ago #68743

  • JJ
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It's not because they don't respond to drugs that shows they don't have ITP, it's because their whole family has it! You have to look at the whole picture.

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ITP passed down the Hereditary line - has anyone seen this? 2 months 2 hours ago #68754

  • jjc
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HAL,
The steriods did not work nor did they provide relief. When I received plateletts, it did increase, and stayed increased for a while. Im stiill a little higher than where I was after a few years, but not near 100. I also dont have any of those other conditions either. Whether or not I have ITP or not, I dont know, all I know is I was Diagnosed with it by a doctor in the profession for many years who just retired. I dont seem to have any issues other than if I need surgery. I have LARGE platelets as well. In fact, that same doctor said due to my condition that I have to replenish the platelettes so often to keep up the counts that my immune system does a better job typically than other healthy people. Right or not, who knows.

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ITP passed down the Hereditary line - has anyone seen this? 1 month 4 weeks ago #68755

  • JJ
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Lots now known about inherited thrombocytopenia. Here's the latest report.

www.ncbi.nlm.nih.gov/pmc/articles/PMC6593073/

If you look at table 1 in a separate window it lists the 40 genes that they now know can be involved. You might be able to persuade a keen haematologist to test for them. It's important to get a correct diagnosis as there can be other diseases to look out for that go along with them and it also stops doctors from using the wrong treatments.

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ITP passed down the Hereditary line - has anyone seen this? 1 month 4 weeks ago #68759

  • camperguy65
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I am severe, and chronically an ITP person. My mother's side all have auto-immune disorders. My father's side has none. My mother has severe Psoratic Arthritis with Psoratic lesions, etc. Her youngest sister has a blood clotting disorder, and her brother, and other sister both have severe Lupus. My only brother mysteriously had his heart muscle cells destroyed by an unknown cause when they took a biopsy, and he wound up with cardiomyopathy in his later 20s, and then died following a heart transplant at Johns Hopkins in 2009 at the age of 41. So yea, I'd say there is a hereditary connection through the immune system.

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ITP passed down the Hereditary line - has anyone seen this? 1 month 4 weeks ago #68760

  • camperguy65
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I have an aunt and uncle both with severe Lupus and they have many years of combined time spent taking steroids for their condition. So much so, my uncle only in his 50s at the time had to have both of his hips replaced because of chronic steroid dependency having destroyed them. He hasn't worked for decades and has been disabled. His hips deteriorated from chronic use of steroids not physical work, etc..

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ITP passed down the Hereditary line - has anyone seen this? 1 month 4 weeks ago #68761

  • camperguy65
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Another point is there can be at least two different ways a person has ITP. The problem can be mainly in the immune system or Spleen where platelets get destroyed prematurely, or the other way is if bone marrow is not producing enough platelets. So there can either be a shortage because of production, or a shortage because of destruction. The people who count low because of their immune system destroying them would theoretically respond well to steroids, which retards the immune system. The under producers of platelets may not respond to steroids if steroids do not accelerate production in the marrow. The first thing they can do is a marrow biopsy to tell if the marrow is under producing, or if it is the Spleen/immune system destroying them, and possibly both, but both I would think is likely rare.

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ITP passed down the Hereditary line - has anyone seen this? 1 month 3 weeks ago #68805

  • Hal9000
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jjc wrote: HAL,
The steriods did not work nor did they provide relief. When I received plateletts, it did increase, and stayed increased for a while. Im stiill a little higher than where I was after a few years, but not near 100. I also dont have any of those other conditions either. Whether or not I have ITP or not, I dont know, all I know is I was Diagnosed with it by a doctor in the profession for many years who just retired. I dont seem to have any issues other than if I need surgery. I have LARGE platelets as well. In fact, that same doctor said due to my condition that I have to replenish the platelettes so often to keep up the counts that my immune system does a better job typically than other healthy people. Right or not, who knows.

Ok JJC. Likewise, I absolutely do not know if you have ITP or if it's familial TP.

Still, next time you need surgery, might push for IVIG instead of platelet infusions. I don't respond to steroids at all but do definitely respond to IVIG strongly. Could be the same situation for you. That way, if IVIG does work, that would make it a better option if an emergency occured. Like a car accident. Always good to know what one does, and does not, respond to.

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ITP passed down the Hereditary line - has anyone seen this? 1 month 4 hours ago #68954

  • maria3132
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Hi jjc,
I have turned into mostly being a lurker after my son's ITP resolved about a year ago.
However, I wanted to chime in because my uncle also had ITP, as did one of his sons. I had to look up what I had written on my main thread because I've forgotten the history. "My uncle's childhood ITP resolved at age 12 after a partial splenectomy (or it could have been full and the sleep regenerated itself - in any case, my uncle is today a healthy nearly 70-year-old *with* a spleen). His son had an acute case around age 10, which resolved after a single course of prednisone, over a few months. My son's case resolved after 8 months or so." Also, I never had low platelets but I did have suspected blood clots in my 20s (possibly caused by hormonal birth control used to treat acne). Coincidences? :huh: Who knows. (We also have lots of asthma on both sides of the family, as well as some eczema.)
Finally, my son also responded well to IVIg, for what it's worth.

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