INR

[LesJames]

Anyone else feel worse when their INR drops below the required range? I do all the time but get dismissive looks and comments from those who should know!

[jessielou]

Hi les

welcome and glad you found us.

A big yes! My inr dropping makes symptoms worse. And Im sure lots of us get the dismissive looks and comments too.

I am slowly getting it through to drs etc that this is the case. My range 2-3 which i believe too low anyway. Nurse who does inr is Startin to see it, but like everything with Aps sadly it takes time.

Sure others will be along agreeing.

Hope you well today.

Take care gentle hugs sheena xxxxxx jessielou xxxxxx

[jetjetjet]

hi les i have been dealing with inrs that jump all over the place. at times i test every 3 days , mostly weekly, but cant ever go over 2 weeks. it toke a while to prove to docs that i could tell when i was off, and because of them realizing it is possible to tell, i now have a series that allows me to test any time i need. docs have never been able to stabilize me in my 2.5 years with this lovely disorder. i cant always tell high or low but most certainly can tell. so i definite yes in my book . ps. hay jess bfn jet

[jessielou in reply to jetjetjet]

Hi jet

How you doing hon? Hope all ok with you!

Take care gentle hugs sheena xxxxxxxzz jessielou xxxx

[mylafont in reply to jetjetjet]

Can you describe how you feel when it is low and how you feel when it is high? I started a diary, but haven't put anything together yet.

[Lure2 in reply to mylafont]

Hi mylafont,

You have answered on a 3 year old post so perhaps you will not have any answer. If you want an answer on your question put a new post on here.You have done it before.

I have been on this site for several years. I know they say that when they go too low the symptoms come back (the symptoms you perhaps had before you were treated with warfarin or whatever it was).

We have too thick blood and if it is not enough anticoagulated we get our symptoms back. If I get a bit low I get more difficult to go in a stright line, to have difficult to think, Vertigo etc. As I selftest I will not allow myself to go too low in INR as I know too well that it can have consequences.

Hope it helps.

Kerstin

[jetjetjet in reply to Lure2]

Hi Kristen -- how's my long distance Buddy -- did we ever figure the time difference between us ????

[jetjetjet in reply to jetjetjet]

OOPS KERSTIN !!!! how dumb of me -- my eye teeth got in the way and I couldn't see what I was typing

[Lure2 in reply to jetjetjet]

6 hours. Perhaps a little more or less.

G ood to hear from you Jim! How is the foot doing?

What do the doctors say about your fatty liver? Is that still a big problem?

Take care and let us hear how it goes for you.

Kerstin

[jetjetjet in reply to Lure2]

having trouble with New Gastro . Dc going forward with Doppler Ultrasound to see if it is all fat in liver or could it be clots ????

Left foot now has skin rot -- they change Dressing every 3 days now , it is holding at it's same size and condition -- but no real large improvement .

I have a brother for Casey now !! a fish -- a Better -his name is Finn-- he is blue and his tank has blue glass beeds and light and dark blue plastic plants and one real spider plant

every time i go to his bowl and call him by name Casey comes running HA

Finn is on my small table knee high !! so Casey can stand up put his paws on the table and look right into Finn's tank .. real funny to watch . At mt eye dc's they have a salt water tank and the fish are bright yellow and orange and Casey will stand on his hind legs and watch the for 10 minutes o so - it's funny and all the other patient there laugh and just love it

did you see the pic's of the huge tank at the store that had fish in it that are 3 times the size of Casey ??

[Lure2 in reply to jetjetjet]

It is lucky that Casey is not a cat !!

Kerstin

[jetjetjet in reply to Lure2]

Ya A cat would have a lot of fun with poor Finn.

The fish bowl holds about 2 gallons of water so quite heavy.

do you have any animals or

have you told me and i just forgot??

??????????????????????

[LesJames in reply to Lure2]

Hi, I am still around and still taking the tablets. In answer to your question. When my INR is low I get brain fog dizzy spells lack of coordination. I also suffer from a gremlin in my body who is resident. It decides what it going to interfere with on any given day. Sometimes it might be my kidney's other times it might be a pain in my chest restricting my breathing, it can and does meddle with any part of my body and I can find no pattern. A low INR seems to make these episodes more frequent. When my INR is high then I am usually buzzing a it and feel as if I can take on the world, I do too much then suffer for 3-4 days. Hope this helps. BTW I self test and have a check INR at my hospital every month.

Regards

Les

[Lure2 in reply to LesJames]

Very nice to hear from you!

My therapeutic value is between an INR of 3.2 - 3.8. I have Lupus Anticoagulant and it can be difficult to keep the INR steady sometimes when I selftest like you do.

Hope you have checked your pain in your chest and difficuclt to breath. I have pulmonary hypertension and leaking heartvalves and they always ask me if I am breathless, which I am not.

Take care and hope we hear more from you!

Kerstin in Stockholm

[mylafont in reply to Lure2]

Thanks. I'll ask in a new post. I was hoping to find the answer before starting another thread. I've started a diary, of how I feel at times, but only go back a about two months. I've incorporated it into my INR results diary, but haven't found a connection yet to the way I feel at times and my INR. I'm beginning to think, what I feel is symptomatic to having APS and the way it's affects my brain. I'll get it one day (hopefully).

[jetjetjet in reply to mylafont]

Hi My -- I have trouble when my INR is off , but really no serious pattern to it -- the flares are more my concern now as they can effect me anywhere in my body { of which I have many tings going on at this time. my eye sight i would say back when was on the high scale of the INR and the migraines but i could have them on the low but maybe not as much .My INR is so erratic and to the extreme that it is now hard to tell really -- not much help as i can't really pin point theses days . let me know on how your pattern works out C & J

[paddyandlin]

Hi Les

welcome to the group hope you find it useful.

A big yes from me to! My inr dropping makes symptoms worse. And i get lots of dismissive looks and comments too especially as i am a wheelchair user your not suppuse to have a life but i say two fingers up to them this is my life and you take me as i am if you don't you were not the type of person i want to speak to and the other good thing is i forget them so bonus all round lol.

My range 3.5-4

speak soon

paddy

[jetjetjet in reply to paddyandlin]

Hi Paddy - long time no speak --How are things ??

I was speaking of you just the other day -- Good things i might add. looking forward to our conversations !!

[Gadgets]

Hi Les

YES!!! I found that out once I was put on Warfarin, I overshot my INR range and felt so much "better". I had to fight for a long time to get my iNR range increased.

My range is the high end 4 to 5. I like to stay around INR 4. At low INR 2 it means that I can hardly function, speak, walk, write, balance...fatigue...

I self test but do not self dose, my nurse adjusts my dose when I phone in my results.

Since having a stroke APS I now work full time and have my own business.

Hope this helps you

Regards

Garry

[LesJames]

Thank you all for your comments they have been really helpful.

[london-lass]

Hi Les

Maybe a bit late in the day, but I agree with all that has been said. I too struggle when I drop below 4. I was just like Garry.... it took time for the nurses to learn, but now I self test, and like Garry, the nurses tell me what to take. It works well with the erratic INR!

Good luck

[Herb]

Yes definitely, I have strict instructions not to drop below 3 and if I do I have the injections, it is very important. The dismissive looks are simply because the the person giving you them does not know about your needs and I strongly advise you to get something in writing from your consultant which will back up what you are saying.

Don't assume anyone "should know" about your condition or treatment, in fact most people become very nervous around high INRs and it may come across as being dismissive but in fact they are scared by our treatment.

[kathyD64]

Hi Les,

Like the others i too can tell and its taken a while but now i have convinced the haematologist and being under the care of a nurse specialist i see regarding my APS and fibro she too is very helpful, and have written to my GP who sadly does not believe it. From personal experience it was certainly more noticeable with a flare and coincided with my antibodies being high. When i felt well in my 30's my inr was stable and i felt well the majority of the time, unlike my 40's!

One thing i found help get people to understand this was by copying what Prof McHugh says in his sept blog re inrs. This i sent to the haematology dept via an email because even though i have had a consultant say my inr needs to be above 3 still it has taken a while for haematology to get up to speed. Good luck with it all take care xxx

[LesJames in reply to kathyD64]

Kathy,

Any chance I can get a copy of the report you refer too?

Many thanks for your help

Les

[jessielou in reply to LesJames]

Hi les

click on blogs at top of this page, then on Hughes foudation blogs and should find professor Hughes Sept blog. Very interesting reading. Further excellent information can be found on Hughes syndrome foundation website at hughes-syndrome.org

i hope this helps

take care gentle hugs sheena xxxxxxxzz jessielou xxxx

[kathyD64]

Hi Les,

Thanks sheena just seen message. Hope you found it ok les? kathy xx

[jetjetjet]

Hi Les -- my range is 2.5 to 3.5 -- i have a real hard time with my INR and the bounce -- the brain cramps and the dizziness can go with either the high or low Eye sight is usually when i am high . but not always

when i have flares it can effect my balance

last few INR'S

4/3/15--1.6

4/6/15 --2.7

4/9/15 --3.3

4/13/15-3.7

4/16/ 15---4.7

4/20 15--3.9

one of my last real bad was Monday---2.4 Weds --9.1 ---- Monday 1.3

this has been a problem with me being therapeutic since Sept 1 2009

[LesJames]

Thanks, Still taking the pills and my range is still between 3 - 4 keep plodding on

[Hidden]

Interesting since mine has been low and despite tot rating it up it got even lower- 1.4. I also have felt crummy with sweatiness and aches.

[Lure2 in reply to Hidden]

Hi.

If you have a diagnose of APS (Hughes syndrome) please talk to your Specialist of APS (hope you have one) as soon as possible. At an INR of 1.4 you are not anticoagulated at all! Ask to selftest if possible and also ask for a Fragmin shot to protect yourself from clots when the INR is not high enough.

Best wishes from Kerstin in Stockholm