hi all: any reasons y i keep gettin bad... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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hi all

rach1081985 profile image
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any reasons y i keep gettin bad headaches n bein sick 4 over a week nw...... my inr is low n keeps dippin ...... goes frm 1.3 then bk dwn 2 1.0 my dose is 20mg n clexene....... plz help i feel awful..

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rach1081985 profile image
rach1081985
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10 Replies
rach1081985 profile image
rach1081985

sorry fragmin im on and warfrin..... if my inr goes below 2 i inject aswell as taqke warfrin.....thnx 4 ur help xx

MaryF profile image
MaryFAdministrator in reply to rach1081985

Hi there, and another angle, on top of all the sensible advice from above - have you changed anything in your diet, or had any virus of late to add to the party? Mary F x

rach1081985 profile image
rach1081985

no not at al mary xx

MaryF profile image
MaryFAdministrator in reply to rach1081985

Hmmm, I hope you can get seen and have some fine tuning! Let me know how it goes. Mary F x

rach1081985 profile image
rach1081985

thnx who do u suggest specialist anticoagulant nurse gp or haemo xxx thnxs n will do xxx

MaryF profile image
MaryFAdministrator

I suggest the haemo... as you could probably collar the nurse anyhow without an appointment! If your haemo normally listens to you, do not hold back on how bad it is... chase that appointment as a matter of urgency. Mary F x

rach1081985 profile image
rach1081985

thnx alot luv xxx cnt understand y my inr so low perhaps my body nt absorbin warfrin wat u think x

Suzypawz profile image
Suzypawz

Hi hun, yes you do need to have that inr balanced out better than it is.....you shouldn't have to feel like you are?!!

I know I still get a lot of migraines especially if inr drops below 3......unfortunetly migraines come most times with APS....& with some of mine I too am sick with :(

Contact gp & get them to push an appointment through for a haemo'....let us know how you get on xx

Manofmendip profile image
Manofmendip

Hi Rach.

What dose of fragmin are you taking? Is it the right dose for your weight, see the chart in the leaflet that comes with the Fragmin. I weigh about 78kg and I inject 15,000IU per day as a theraputic dose, now that I am not on Warfarin. When I was on Warfarin, I used to inject a prophalactic dose of 5,000IU per day if my INR dropped below 3.3.

I used to get bad migraines before I was diagnosed with APS but when I went on Warfarin and my INR was around 4.0 the migraines stopped for 7 years. They then came back and my neurologist put me on 20mg of Amitriptyline per day, which has stopped them dead.

I hope the above helps but please ask me if you need to know more.

Best wishes.

Dave

Manofmendip profile image
Manofmendip

Hi AP

I initially took 10mg and that stopped the migraines, I only increased it to 20mg when I started to get my 'funny turns', which the neurologists said were an atypical migraine but which Prof Hughes says are TIAs. The higher dose of Ami didn't help so I know who I believe is right.

I was very sleepy after starting on Ami but I have got used to it now.

Best wishes.

Dave

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