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Hughes Syndrome APS Forum

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Hi Everyone, Normally just a lurker lol! Does anybody else find that their symptoms improve when their INR is higher ?.

kalin1977 profile image
13 Replies

I've just convinced my Consultant to raise my inr range as i feel more normal when it is at a higher level!, it took some time to get him to believe me and he even said " what symptoms?", bloody drs lol x

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kalin1977 profile image
kalin1977
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13 Replies
k7pbx profile image
k7pbx

I feel more normal when it is at a higher level. In fact I will give myself a does of Lovinox, which clears my head within the hour. My speach clears, my wife and INR clinic can tell the difference immediatly. My spelling does not get better.

k7pbx profile image
k7pbx

It is currently at 3.7 and being raised higher. I had surgery this past Friday morning at that level. Surgeon said very little bleeding occurred.

Cherrydi profile image
Cherrydi in reply to k7pbx

Were you 3.7 when you had the surgery, and what blood thinners were you on when you had it, it is interesting as I have not known many to have surgery with our illness?

tassie profile image
tassie

Yes I feel better above 3.0 and best around 3.5 to 4.0. My Dr doesn't like me above 4.0 cause he is used to dealing with "normal" INR patients and that would be high for them.

I had one Dr at the practice I go to tell me that you can't feel any different on different INRs.... that it was all rubbish ...just as well I don't trust his judgement and try and make sure I see one of the other Drs there who trusts my judgement

stillwaiting profile image
stillwaiting

I am only two months into diagnosis and I can already see how my INR level affects speech, sight and memory. At it's highest (4.9) I felt a wee bit lightheaded but otherwise I felt really well and energetic. Sadly it didn't last as I have since plummetted to 1.8 and my speech became slurred again & all the other bad symptoms came back.

Lynn

Manofmendip profile image
Manofmendip

Hi

I used to feel best when my INR was around 4.0, below 3.3 I started to get very bad symptoms: brain fog, memory issues, speech problems, unsteady gait and migraines. When it fell below 3.30 I would inject Fragmin until my INR was back in range.

Now I am on Fragmin instead of Warfarin and I feel so much better; I would never willingly go back on Warfarin.

Best wishes.

Dave

GinaD profile image
GinaD

Me too. But I still can not convince anyone that when my iNR is over 2.75 my hip osteoarthritis symptoms improve.

Yes, I know a higher INR will not fix the clearly MRi visible damage, but it just feels better and I have more function.

But no one believes me.

Gina

Hi Gina

I Believe you.

Kerstin

CanaryDiamond10 profile image
CanaryDiamond10

I believe you, Gina!

Canary

GinaD profile image
GinaD

Thanks. It's nice to know someone does. Guess I'm not the only crazy?

Susiec profile image
Susiec

the higher my INR the less headaches...

they used to keep me between 2 and 3 but I had constant non stop headaches now I try to keep it between 3 and 3.5.

dutchess profile image
dutchess

I was taken off warfarin and put on aspirin , within 4 months I had tremors dizziness lack of co ordination pins and needles . after 5 months of fighting and ending up exhausted and in tears all the time I restarted warfarin . my gp had said it was not down to hughes , since restarting my tremors dizziness and bad co ordination have all improved . my target is 2 ..3 but I feel better at the higher end of my range . trouble is DR lack of knowledge about the condition but I def feel better now back on warfarin and with a higher INR. we know our own bodys . hope this helps x

noodlesrita123 profile image
noodlesrita123

I had my range increased and have felt better but now they re on about lowering it again onto happy. Xx

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