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Hollie
01-06-2013, 11:49 PM
I was diagnosed with SLE 2 yrs ago and a little over a yr ago was diagnosed with ITP (thrombocytopenia - or low platelet count). a normal healthy platelet count averages between 150,000-450,000. at one point my count was ZERO and as a result of that and trying to build my count back up was in the hospital for 5 wks. that was over a year ago but I am still struggling with my counts. I was prescribed NPLATE injection every week and just recently was bumped down to every two wks to start platelet production.
I was just wondering if anyone else with SLE had/has ITP also...personally I've never known or heard of anyone.
thanks for any replies

jmail
01-08-2013, 04:13 PM
I'm usually borderline low, but never anywhere near zero. I get IVIG infusions (blood plasma with immunoglogulins) for CVID. With my history, its difficult to tell if it's the Lupus, or a birth defect that causes my blood issues, but I blame the lupus nonetheless, cause it causes everything else... tic - Do you like your hematologist?

Jackilynm21
03-14-2013, 12:29 AM
I was diagnosed with SLE 2 yrs ago and a little over a yr ago was diagnosed with ITP (thrombocytopenia - or low platelet count). a normal healthy platelet count averages between 150,000-450,000. at one point my count was ZERO and as a result of that and trying to build my count back up was in the hospital for 5 wks. that was over a year ago but I am still struggling with my counts. I was prescribed NPLATE injection every week and just recently was bumped down to every two wks to start platelet production.
I was just wondering if anyone else with SLE had/has ITP also...personally I've never known or heard of anyone.
thanks for any replies

I just went to the doctor today and she said that I was negative for lupus for now I was so happy... But I'm really worried about my ITP because I've had an IvIG for 5 days and it helped it a little but my count is going back down and he wants me to take NPlate injections. Have you had a spenectomy or tried these injections?

jmail
03-16-2013, 12:43 PM
No. I do B12 injections, but no nplate ones. They were going to do a splenectomy on me a couple different times, but I "calmed-down" after a few IVIG infusions, and have stablized in that regard. Been doing monthly infusions for almost 3 years now. It probably took like 3 or 4 months before I started stabilizing, and even at that I've had a few "extra-special" trips to the ER since, but nothing in the last year of that nature. Came close with a rash I developed last summer, but... fingers crossed that things improve for you. Are they checking other avenues of the cause of the blood issues you have?