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I had ITP when I was a child and was told it could come back, or turn into another autoimmune disease. I’ve just recently been diagnosed with been lupus after 6 years of increasing problems
I’ve researched a little bit, but I was wondering if anyone knows the connection between lupus and itp
I’ve read a lot about how people who’ve had itp are more likely to develop lupus and people who have lupus are likely to develop itp, but not why. Very curious, can’t seem to find very much info. Thank… read more
@A MyLupusTeam Member
Itp is idiopathic thrombocytopenic purpura. Basically it’s a bleeding disorder where your immune system attacks your platelets.
@A MyLupusTeam Member ITP is idiopathic thrombocytopenia purpura, which means low platelets of no known cause. ITP is also known as “immune thrombocytopenia” since the immune system attacks and destroys platelets....but little is understood as to why the immune system attacks them
If severe it can cause blood loss and death since the blood won’t clot correctly. The majority of cases doesn’t get that bad and instead causes you to bruise easily or get little red dots all over called petechia
Low platelets is 1 of the 11 critria for Lupus. ITP and Lupus are connected somehow but it looks like the connection remains a bit of a mystery
@A MyLupusTeam Member definitely was not misdiagnosed. I had horrible purpura all over my body, bruising, bleeding under my skin, critically Lowe platelet count, etc. It was around 2006 when Rituxan was approved by the fda. I was the first in my hospital to receive the infusions so it was pretty experimental att. I think maybe methotrexate was involved, I don’t remember specifically. I do know that people with lupus often have low platelet counts. Maybe that’s the connection?
@A MyLupusTeam Member Thank you for your detailed reply and adding me to your team! Will do the same. Also love the kitties in your picture, I have one that looks like them and he has thumbs haha.
So sorry to hear about you not being able to find a diagnosis. We often have to go to multiple doctors before we are taken seriously. I had my primary doctor since birth, who knew about my past with itp, laugh in my face and say nothing was wrong with me when I first seriously started searching for answers. And totally get not having the health insurance once turning 18. I had that problem as well, right when everything started really going downhill and I truly needed to find a doctor that would listen and help. Still having issues in that area, but have finally gotten a good rheumatologist. Hoping you find one and get answers soon.
If I can find the sites I saw before, I will reply to you again. I should’ve bookmarked them! It’s been a while since I specifally researched it. I will have to ask my rheumatologist about it next time I see him, in a few weeks. He was sort of confused as to why/how I would develop lupus because there’s no sort of history of AI in my family, either side. But when we mentioned I had itp all those years ago, it clicked for him. So there definitely has to be a strong connection.
After posting, I did find this. haematological manifestations of lupus: http://lupus.bmj.com/content/2/1/e000078?utm_so...
It gives a great deal of info, but still seems no one knows the direct cause of the connection. Maybe time will tell.
@A MyLupusTeam Member what makes you say ITP means no immune system? With most ITP the platelets are destroyed by the bodies immune system. In some diseases the bone marrow stops produces platelets (which clot the blood) but with ITP the bone marrow actually works overtime to produce them...but they get destroyed. Or do you mean Lupus means no immune system? Perhaps I’m not understanding you correctly
@A MyLupusTeam Member I’m glad I stumbled onto your question! I’ve been asking the same myself.
I was born with severe ITP and it endangered my life those first few days. Obviously I made it but I’ve had low platelets my whole life. Never critically so again but always low (80k-120k)
I’m now looking to get diagnosed as I’m certain I have Lupus and other AI issues.
Unfortunately my parents are no longer around so I can’t ask certain questions about my health when younger. And when I hit 18 or so I lost insurance and went without it til now. So I was never really advised about what ITP meant or could mean for me in the future
I know low platelets is 1 of the 11 criteria to diagnose Lupus but haven’t found many specifics. I don’t know if they are looking for ITP or a similar issue caused only by Lupus. Meaning: if I’ve had ITP since birth is that still considered 1 of the critria for Lupus or is it considered a separate issue and just a weird coincidence
I’ve asked a few people here about ITP. I’m not sure how to search and use the site very well yet but perhaps if there’s a way to view my comments you can find them! I have found a few people who have ITP and have discussed it with them
You mentioned you’ve read that ITP often turns into other AI issues and links to Lupus? I’d love to read some about that if you can direct me to a website. I’m still trying to convince my rheumatologist I have a crippling AI disease 🙄 and I’m getting more and more frustrated
The only connection I can think of is that low platelets are caused by 1 of 2 things. A problem in the marrow not making platelets and then the ITP where your immune system attacks the cells and destroys them. This is witnessed by the MPV being higher than normal that shows the marrow is busy making new platelets but the actual count is still too low. Seems to me that when the body has a glitch and attacks it’s own platelets it’s then liable to do the same with other types cells.....which is what lupus does.
I wish I understood it more. I also wish I knew what was wrong with me and could find a doctor committed to find out
I’m sorry to hear of you problems but I’m glad to know you have been diagnosed and with that should be getting treated
I’ll be adding you to my team. Hopefully we can find more info and share it with each other
That was likely my bad though I didn’t mean to imply ITP actually “turns into” Lupus. I was just asking about the connection between the two since it was suggested the diseases are often linked
Sorry for any confusion
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