Back in hospital

[ZRHONDA]

I'm back in the hospital because I've had a severe headache since my brain bleed on 10/22/16. My PT/INR is low and has been. It's been maddening. They won't give me proper pain relief. Or get aggressive with the anticoagulants. Been here 3 days with 2 CT Scans and an MRI and another one scheduled.

[MaryF Administrator]

Gosh, I hope they get to the bottom of things soon for you. MaryF

[Tim_Thorpe]

Good. Luck 👍

[Peecue]

I hope they start helping you get an INR that stops the headaches. I know I had to go to a different hospital to get them to put me on a higher dose of warfarin and not use the new drug, because my local hospital wouldn't allow an increase. I wonder how many other hospitals are playing safe too?

[ZRHONDA]

They finally upped my warfarin from 5mg to 7.5 mg and also added Lovenox injections twice a day. They did another MRI (MRV). Of my sagittal sinus. Hoping there's no thrombosis there. They finally also put me on a Ketamin pump to control my pain. Hoping my PT/INR is therapeutic and that I can get back to my life.

[ZRHONDA in reply to ZRHONDA]

Even with the increason in warfarin and the Lovenox I'm still at only 1.7 I'm so frustrated

[Lure2]

Hi Zrhonda,

Sorry you have had a rough time with your APS lately.

It sounds good to me that they upped your anticoagulation drugs to a therapeutic level perhaps and also pain-control. You will soon go back to life again. Hope you have got an APS-Specialist to look after you then.

Best wishes from Kerstin in Stockholm

[rolfe]

oh gosh you poor thing im in the uk. are you on warfarin ?I had awful trouble my inr was all over th shop I felt really unwell headaches confusion etc. My doctor put me on Apixaban, well what a difference its made I feel so much better perhaps you could see if you can change ? all the best, and I wish you a speedy recovery

kind regards Rose

[Ozchick]

Hospital's no fun-hope you feel better soon with the change in meds.

[ZRHONDA]

Thank you all. My INR is still only 1.7 they took away my pain pump and sent me home saying it's not good medicine to keep me in-patient just to get my INR up. I'm am beyond frustrated. They dais since they were bridging me wit Lovenox I'm fully anti coagulated and not in danger

But I'm in extreme pain

It's just sad and I'm pissed because there is no need for me to suffer.

QUESTION: ONCE I GET TO A THERAPEUTIC RANGE SHOULD THE PAIN RESOLVE?

[Lure2]

I would answer like this: When you see a Doctor who knows about APS (really knows about it as he should be SPECIALIZED in autoimmun illnesses like SLE, APS, Sjögren etc), you should primary be in range with an anticoagulation drug, but also "backed-up" on something else for pain perhaps. You say you have also SLE.

I am not medical trained but have learnt from others on here and read a bit about our illness.

What I am quite sure about is that a Specialist is a most for us!! We need also to be anticoagulated at a steady and rather high level. I selftest on an INR of 3.5 - 4.0 and feel best around 4.0.

As an answer I think you must find your APS-Doctor to be helped even with your pain.

Wish I could help you better, but it is often a trial and error from a welltrained Doctor

Best wishes from Kerstin in Stockholm