High Inr!!!! Feeling better!!!

[jessielou]

Hi all

Went docs today, antibiotics for chest infection again. Doc wanted more bloods done, checking platelets cos of plaquenil.

I asked for an inr check cos apart from chest being crap I feel better!! Inr 3.8 my range 2-3 so having told them i feel better this high, they cutting warfarin dose oh well enjoy it while it lasts, is great, no brain fog, headaches less, hearing, eyesight all better!!! Mmmm my range too low!!!!

So paddy n sue I made it 'the high Inr before Christmas' lol!!!

Hope all well.

Take care gentle hugs sheena xxxxx jessielou xxxxx

[jetjetjet]

hi jess girl, congrads on jetting what you wanted, my 1 st range was 1.2 to 1.7 but had many problems in this range. now after many discussions with temp. dc , my new range is 2.5 to 3.5, it seems to be working for now ????? but with this wacko body i have who knows how long. will be talking to you soon , as more results become available. i know what tests were done , just no explanations as of yet. bfn jet

[Storky]

My range was 3-4 with target 3.5 so at 3.8 you were spot on and no wonder you were feeling better. the man himself advocates a range about there so perhaps that is where you should be.

There are some videos of him and some internet bits and bobs you can get where I am sure I have seen him state this. I am sure if you find one of them you can take it to your doc and ask for your INR to be raised. Maybe contact HSF and ask them.

Take Care

[london-lass]

Hi there

In my experience most clinics and GPs won't allow you to set a higher target without the consultant's permission who put you on the warfarin. Can you email your consultant and ask if you can go up? I did that. Now at 4 I am much better symptoms wise.

Good luck with it.

[Hidden]

My range was always 2.5 - 4 but generally I tried to keep it over 3.2. i remember measuring it once at 8.4 - I didn't tell the consultants about that one!!

Speak to your consultant, maybe take a printout of Prof Hughes' recommendation?

Good Luck

Tx

[kathyD64]

Hi Shenna,

If i were you i would argue rationale for keeping inr above 3 as you are feeling better in regards to your aps not poor chest - hope that gets better soon hun i guess they are thinking the abx will increase inr whilst on them hence reducing warfarin but i felt unbelievably well in fact i was euphoric when my inr was 4.4! then as it slowly dropped i was amazed the difference on reaching 2.8! like you i was 2-3 but now after last hosp admission my target is suppose to be above 3. I get pain in left eye when my inr is too low and fatigue and foggy brain so i copied and pasted Prof H sept blog sent to the haematologist to reinforce why it is important for my inr to be above 3 as they thought 2.8 was good enough but clearly for many of us i would say upper range of 3! off to work now hope you are feeling better soon and they will give you new target range. Much love kathy xxxx

[jessielou]

Hi all

Thankyou for all the comments.

I not surprised you didn't pass the 8.4 on tasch!! Don't doubt they would have dragged you in!! Panic stations!!

Nurse that did mine yesterday was panicin, on about droppin 2 or 3 days warfarin, needless to say I said no!!!! Dropping to 6/7 mg is enough Thankyou!!!!

I'de much rather stay up at 3.8!!! Seeing haematologist in two weeks will print off the boss's Sept blog and get her on side!!

I will just have to be the wheel that squeals loudest!!! Will get it sorted!!!

Hope all havin a better day.

Take care gentle hugs sheena xxxxx jessielou xxxxx

[paddyandlin]

Hi Sheena

I agree you juest need to keep on at them but as london lass has said blood clinics and gps are notorius if the do not have letter they do not accept it and have been there with INR mine goes from 1.1 to over 9 and so far i was told once to go to get vit k at a&E but vit k is bleedin awful tasting lol

look after yourself and if you want to talk we here.

paddy

[SueLovett]

Hello Everyone,

I have noticed that most Hughes sufferers say they are better with higher INR. As I am on Clexane and not Warfarin INR has not been an issue for me.

However last weekend I had, what can only be described, as a brain malfunction, I ended up taking 19 yes 19 injections of Clexane instead of one. (Docs think I had a TIA which made me go bonkers, this has happened on several occasions before).

I was taken to hospital where they gave me an antidote to the clexane and monitored for 2 days. Bloods went back to normal so was allowed out and told to resume Clexane.

Two days later I had an Upper GI bleed so back to hospital as emergency.

My point is that my blood must have been really thin but my brain suddenly woke up and many of the symptoms I live with daily disappeared.

No brain fog, No confusion, Memory great, Wit returned (maybe not so welcome by nursing staff!) Remembered things I thought I had forgotten, No Tinnitus and even more amazing Hardly any pain.

After 3 more days in hospital I am now back home with my sticky blood again and guess what? Muzzy head, tinnitus, starting to get muddled again etc.

I am going to see if my Consultant up at St Thomas' will up my Clexane to see if it makes a difference.

Take care friends x Sue