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Old Fri Jun 1, 2018, 11:17 PM
Casper Casper is offline
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Join Date: Jun 2018
Location: Juneau, Alaska
Posts: 4
Eculizumab late dose

I had been taking eculizumab (Soliris) for PNH for about 2 years and my red blood cell transfusions were down to once every month or two.

The pharmacy missed a delivery, my medication was 6 days late, resulting in a need for transfusions every 2 weeks. That was 2 months ago, and I still have not recovered. My other blood counts dropped as well.

Anyone had experience recovering from a missed dose?

Thank you.

Last edited by Casper : Fri Jun 1, 2018 at 11:19 PM. Reason: added keywords
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Old Sat Jun 2, 2018, 02:59 PM
Susan Susan is offline
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Join Date: Aug 2006
Location: Chicago, Il
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Eculizumab

Hi Casper, Oh no, sorry to hear that. Mine was only late by 3 days once and my hbn stayed close to the same. Very little change with other counts. You work with your Alexion rep don't you? Could you have Aplastic Anemia too? I'd think you should be recovered by now.

Did you know that since the other PNH support site pnhdisease.org is not working, there is a private Facebook group called PNH Patients - Support? There are about PNH 600 patients members, best place to get PNH input for the time being. Some have AA too. Sometime around Fall, all of us, PNH, AA, MDS, AML, etc patients will move over to a new AAMDSIF sponsored support site. Neil will announce it once it's ready.
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