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Other Platelet Disorders

ITP? Lupus? Blood Clots?

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14 years 1 month ago #17482 by KaraJim
ITP? Lupus? Blood Clots? was created by KaraJim
Hi there! I am very confused about my husbands diagnosis and was wondering if anyone here might be able to clarify things for me.
My hubby was diagnosed with rhumatoid arthritis back in 1992, was put on prednisone and methotrexate for while and then everything was fine for a few years. He has had the flare-ups here and there since, but nothing warranting another round of prednisone or methotrexate. Then, in 2005 he was dianosed with chronic ITP. His platelette count usually hovers between 25-50, and AT LEAST yearly ever since 2005, drops to below 10. He has had many different treatments over the past few years, but they only sustain his count for about 1 year. His last treatment (about 5 months ago) was Rituxin. He has a hemo who he has been seeing regularly since his original diagnosis and she has sent him to a specialist who has now diagnosed him with Lupus. She has also told him that he is at a high risk for developing a blood clots (???) How can you develope a blood clot, when you virtually have no platelettes? Also, they generally treat a blood clot with blood thinners...how do you thin blood that is already too thin? I've asked him for clarification, but he's frustrated and doesn't seem to understand how any of this is possible either. Needless to say, I did not go to his last appointment with him so that I could ask more questions. If anyone here has similar diagnosis and can help answer some of my questions, I sure would appreciate it!
Thanks!
  • 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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14 years 1 month ago - 14 years 1 month ago #17494 by Sandi
Replied by Sandi on topic Re: ITP? Lupus? Blood Clots?
Hi Kara. Sorry to hear about your husband. Believe it or not, clots are possible with low counts. Your husband probably has APS (Antiphospholipid Syndrome), which occurs sometimes with ITP and/or Lupus. I have Lupus, ITP and have had the APS Antibodies off and on. I have not had a clot, but I do take daily aspirin as a precaution. There are three types of known antibodies with APS. They are Lupus Anticoagulant, Anticardiolipin Antibodies and Glycoprotein Antibodies. The Lupus Anticoagulant is usually the most serious and the risk of clots is greater with those antibodies.

People with ITP do not have thin blood; they have normal blood but the clotting mechanism is not working properly. We have had people here before with counts below 20 who do use blood thinners such as Coumadin or Heparin. It's a juggling act, but can be done. The trick is to try to keep platelets at a safe level (above 50), but also try to keep them from getting too high. Recent research has shown that people in this situation who have had a splenectomy raise their risk of blood clots, so it might be best to do your research and avoid that, if possible.

What is his count now?

This was one of the best articles I've read about ITP and APS:

bloodjournal.hematologylibrary.org/content/98/6/1760.full
  • 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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14 years 1 month ago - 14 years 1 month ago #17506 by Sandi
Replied by Sandi on topic Re: ITP? Lupus? Blood Clots?
Here is another article that is easier to understand:

www.intelihealth.com/IH/ihtIH/WSIHW000/9339/30957.html
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14 years 1 month ago #17510 by KaraJim
Replied by KaraJim on topic Re: ITP? Lupus? Blood Clots?
Thanks for the info Sandy! The second article was definitely alot easier to understand :)
He just had a CBC done today and they called with the results. His platelettes are 89 (which is FANTASTIC for him). His WBC is a litle low (1.4) and Hemoglobin is normal. He has been describing a pressure in his head off an on for the last few days. It comes and goes and he gets a "sharp" pain for about 15-20 seconds and then goes away. Now that I now his platelettes are okay, I'm worried about clotting :(
Thanks again for the info!
  • 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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14 years 1 month ago #17513 by Sandi
Replied by Sandi on topic Re: ITP? Lupus? Blood Clots?
I know exactly what he's talking about. I get those sharp pains too from time to time. I always worry more about a clot than bleeding too, although my platelets have been good for a few years now.

Is your husband on Plaquenil? It is known as a drug that helps to protect against clots.
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14 years 1 month ago #17516 by KaraJim
Replied by KaraJim on topic Re: ITP? Lupus? Blood Clots?
No he is not being treated at all for clotting.
  • 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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14 years 1 month ago #17521 by Sandi
Replied by Sandi on topic Re: ITP? Lupus? Blood Clots?
Oh sorry, Plaquenil is a common Lupus treatment. I thought maybe he was taking that.