Platelets problem from APS Kidney failure

[samueal]

I’m on dialysis from APS Kidney failure. My platelet count has fallen to 47 from 170 before dialysis and kidney failure. Does anyone have a problem like this? Dr don’t know what to do. I need help.

[MaryF Administrator]

Hi there, you may be flaring, so first of all are you in the UK? Also do you have one of our recommended Hughes Syndrome/APS specialists, which are under pinned posts, over on the right hand side of the forum. MaryF

[Lure2]

Hi,

I see you have been a members since 2012. Have you not had a Specialist of autoimmun illnesses who understands your kidney problems and other symptoms (if any) before?

I agree with MaryF that you have to get help from a Specialist who knows people like us with this sticky and tricky illness who can hide both symptoms and antibodies from time to time.

It will never go away, but with the right anticoagulation and other drugs and a Specialist, it is treatable and we can feel rather well.

Hope you will feel better when someone who knows APS is available and ready to help you.

Good Luck and please tell us how it goes for you!

[samueal in reply to Lure2]

I live in ALAbama and my Drs are at UAB. Drs want to do bone marrow bio. Spleen test showed normal. INR lower than normal at 1.7.

[Lure2]

But do you have a diagnose of APS?

What is your therapeutic range of APS? I have an INR of 4.0 as we have very thick blood with our illness APS.

Kerstin

[samueal in reply to Lure2]

Yes some 12 yrs ago. INR range before kidney failure range between 2 and 3. But after shutdown and dialysis INR dropped to To 1.5 and platelets to 42. I have a temporary cath in me now waiting on the platelets to increase to put permanent connections in my arm. I am feeling great on dialysis but I still need help with INR and platelets problem.

[samueal]

I will call Monday. Thanks

[lupus-support1 Administrator]

The top shortened URL is not working for me with a "timed out" for the PDF. Any chance of the full link, please?

Many thanks!

[lupus-support1 Administrator]

Thanks!

[julieej]

I’m just seeing your post and hope you’re feeling better but if you are still having issues have the doctors check for atypical hemolytic uremic syndrome. I was misdiagnosed with APS for 10 years before learning I actually had AHUS. They have similar symptoms but are treated differently and both have flares as well. Good luck.