how important is a therapeutic INR

[GinaD]

I know this is going to sound dumb, but . . . I live in a low population state. I was one of the first APS patients to be diagnosed in this state (actually I was diagnosed in another state.) I now have gait issues and back problems which have, at long last and thanks to this site, are theorized to be related to an INR below 2.5. My hematologist has now concurred my INR should be 2.5- 3.5 and I am taking a tad more warfarin to hit this level. But I still have days . . .

Some days I can control my gait fairly well. My pelvis remains neutral, when I look at myself in random mirrors and glass store fronts I note I am erect and not pitched foward. I can feel most of my walking work is originating with the gluteus maximus muscles. My back does not hurt and I have no sciatic pain.

Other days all the above is reversed. AND I SEEM TO HAVE NOT MUCH CONSCIOUS CONTROL OVER ANY OF THIS!

I read with great interest the intersection of MS symptoms with APLS. I have no eye problems (other then near sighted with baby cataracts; my IG factors are fairly stable and good, and my neuro is not alarmed by a spinal or lumbar MRI) but I note a clear correspondence between gait control/pain and INR #s.

But my local docs don't seem to know much about this so I'm not getting much advice from them. Is the presumed damage to my spine from a low INR more injurious to my long term health then the risks associated with a high INR number? I have been going as low as possible (encouraged by my heme and my ex-rheumy) but the more I look around the more and more people I see with a pitched forward gait who are transitioning into walkers and wheelchairs. I don't want to be one of those.

Does anybody have any advice? Is it time for me to look for an out-of-state rheumy who will have a better -- or at least SOME -- perspective on this question?

I

[MaryF Administrator]

Hi there, the therapeutic INR should be set at a certain level. Many on here, other than you will tell you what it is, as I am not on any warfarin or similar, I can't be specific, other than that this is important. It would be a good idea to find others who have been able to get help, and the name of the particular place and which state, so that you can perhaps go to that team, who could then advise your current one with more detail. Hope this helps. Mary F, and please keep us posted. Mary F x

[GinaD]

Thanks Mary, I certainly did not expect a response this fast! Thanks.

I intent to ask my new GP this week if she has any advice on this. In my state the docs all seem to be paranoid -- they know you are looking for any excuse to sue, and with us autoimmune patients . . . well. . . . we've manufactured all these bizarre symptoms so we'll have even better reasons to sue. I have been discharged from practices twice for merely asking questions. Its a great place to live . . . as long as you don't have to go to the doctor for something complicated.

[MaryF Administrator in reply to GinaD]

Just ask away on here, somebody on here will have somebody with the right knowledge. Are you in the USA? x

[Lesley_D]

Hi there Gina,

not sure if this is going to help, but here goes .....

My theraputic INR orignally was 2 - 3 then when APS Nov last year confirmed my hematologist set it to 3 - 4. however, to answer your other question, and this is where I am not sure if it will help.

20 years ago (before my dx) I started to notice my perhiperal (sorry about spelling) vision was not so good, after tests, I was taken into hospital for MS tests, had a lumbar puncture. within 3 days I was paraplegic ( I know yours is balance and gait) eventually after 3 years of arguing and still in a wheelchair I was given a dx of Transverse Mylitus - they said I wouldn't walk again, however they didn't know me - after 10 years, I taught myself to walk again, albeit with an unusual gait and balance problems even today. Somedays my balance is not so good, others ok. It seems my hematologist, thinks the whole episode was down to APS, not necessarily INR but APS as it mimics MS.

Anyhow that is part of my story.

Hope you are well and get to the bottom of it.

Smiles

Lesley

[NICE2626 in reply to Lesley_D]

What is APS??

[Wittycjt in reply to NICE2626]

Antiphospholipd Syndrome also known as sticky blood. This is a site for this. Do you have this?

[Gadgets]

Hi Gina

I am on warfarin and my INR is 4 to 5. (When my INR is only 2 to 3 I am unable to function, feel very fatigued, speech poor etc)

For me a higher INR works!

Good luck

Regards

Garry

[WendyWoo50 in reply to Gadgets]

Exactly!!!! I’m the same

[77tiger05]

Which state do you live in??? Do you live in the US? Why are you seeing a GP instead of Rheumy or IM? Would love to know these.

[GinaD in reply to 77tiger05]

Sorry I didn't respond to your question right away -- slipped my mind. I'm in West Virginia -- the western part of West Virginia (which means I'm not near DC.)

I see an internist AND an alternative med guy for GPs. My heme moniters my INR, who wants my INR to be "as low as possible" -- which he reasons to be between 1.75 - 2. I HAD a rheumy (technically, still do, though I'm not sure I will ever see him again.) I told him 18 months ago that I was pretty sure my pain and gait issues were APS related. He said that was not possible and it was probably just due to the weather. He repeated this with ever follow-up appt. for the past 18+ months. I had taken naprosyn for the osteoarthritis flare pain in the past but this flare the rheumy insisted that I not take it as it was too dangerous. He said he would prescribe something safer -- he SAID he'd prescribe something -- but apt after apt, when i was paying the bill to leave I"d ask for my Rx and be told "There is nothing on your chart, so there is nothing new he wants you to take."

Finally, with 18 months of evidence behind me, I came to this site and began to put 2 + 2 together. After reading one post while eating a take-out sushi lunch on my sunny patio I got the ginger from my sushi (which I love but never eat due to INR interactions) and soaked the ginger in my Perrier to make my own real ginger ale. Next day the symptoms were GONE and that day's INR was 3.0 (which my heme thought was too high.) Less then a week later the INR was back to 1.8 and the symptoms were back.

Since them I have convinced the heme to let me officially raise the INR. I haven't made it back to the new target yet (though I felt so well yesterday and this morning that I predict today's INR is going to be about 3.0.)

I rode my bike for 12 sunny miles yesterday and I am also wondering if the naturally acquired Vitamin D is an issue with me.

Both my heme and the rheumy were clueless about non-stroke like neurological and joint issues. I can sort of forgive the heme -- but the rheumy? He condescendingly discounted everything I said. The weather? Really? The pain and balance issues take me from hiking 100 miles a week to a year later on crutches --and this is due to rain fronts moving through? I'm still too angry to give this guy any more money.

Gina

[Hidden]

INR is not the absolute measure of how thin your blood is. There are many things in people’s diet that can make the blood thinner and not be reflected by an INR test. Aspirin, fish or fish oil, blueberries, wine, cranberry juice and many other things can make your blood thinner without being reflected in you INR. If your diet consists of enough of these, you might be able to go without warfarin. I can have an INR of 2 and still have blood thinner that that someone with an INR of 4.

[GinaD]

I knew that cranberries and fish oil thinned the blood but I did not know their effect is not reflected in the INR. I think I'll go have a glass of juice. Thanks.

[Herb]

You write:

"Other days all the above is reversed. AND I SEEM TO HAVE NOT MUCH CONSCIOUS CONTROL OVER ANY OF THIS!"

It is possible you have some vascular issues in part of your brain controlling movement, which can come and go depending on the effects of the blood flow. It is not necessarily anything to do with your spine, tho this may sound counter intuitive.

Recently I had a MRI of cervical spine (neck) it came back fine but the doctor wanted to double check because of my symptoms.

If it is due to these vascular brain issues it is beyond our conscious control. In fact by focusing on it by looking in mirrors and seeing if you look ok you may feel like it is worse than it is. You are on the treatment now so there is hope for improvement. Just keep doing the things you like to do and ask for help when you need it.

However...

Don't take any cranberry products while on warfarin, they interact very strongly and it can be dangerous. Its a big no-no.

[GinaD in reply to Herb]

Thanks again Herb. I was first diagnosed with APS after a series of TIAs/ mini strokes which left me with an MRI that looked like several dozen spiders had built webs in my brain. The MRIs cleared up (which astonished and delighted my neurologist!) so I concur with your theory that these may be brain clot issues -- again.

During this most recent flare I have MRIs and X Rays of the pelvic and cervical spine --- but no brain MRIs. Of course, if my symptoms resolve on this new higher INR number there may be no need for one.

Again, I have hypoglycemic issues if I consume fruit it is usually in its raw state (or dried.) I do eat the occasional dried cranberries with salads but have never noticed any INR changes from that.

But thanks for the heads up. I will remember that.

[GinaD]

Thanks Herb. I dont do well with juice as my metabolism works better on a high veggie and protein diet ( eating only limited amounts of green leafiness of course.)

One variable seems to be sunlight on my skin-- not much, just a bit. When I get j@10 minutes of sun on my arms and legs a couple of times a week my gait is so much more regular. And oddly., oral Vitamin D intake does not seem to have much of an effect, on my gait.

I'm not sure what's going on, but I do better when I make a point of getting a wee bit os sun 3 xs a week.

Gina

[Herb in reply to GinaD]

My neighbour has fibromyalgia and gets a lot of relief by sitting in the sun.

[77tiger05]

Well, one thing I know is to drink Mona Vie, it's 19 fruits & vegetables that have helped me in so many ways it's scary. I never have stump pain, my blood pressure is normal, my choloestral is normal, my aches & pains are all almost nul. I just feel better from this crazy juice.