Getting the blood thinned to the theraputic level

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Getting the blood thinned to the theraputic level

Postby skydog » Mon Jul 27, 2009 10:37 am

Anyone else having trouble getting the blood to thin to the therapeutic levels. My first blood work came back at 1.04 which is just in the high end of normal. I was taking warferin at 5 mg / day up to that point. Now taking 7.5 mg / day and will be re tested next week. Even with the higher dose it seemed after suffering an attack of the ankle grabbing blackberries that my blood was still too thick. I really did not bleed much. So I took 10 mg that evening. Now the next morning when I nicked my thumb pruning the tomatoes I bled like a stuck hog. Back to 7.5 until the blood work is done. Cheers, Mark
Plant a BIG Garden Live in the Moment
User avatar
skydog
Family Elder
 
Posts: 306
Joined: Tue Feb 24, 2009 3:00 pm
Location: North Oregon Coast

Advertisement

Postby Arcee » Mon Jul 27, 2009 11:07 am

It took a week from the surgery to get mine within the correct range. Right now I am at 5 and 7.5 on alternate days. (Bruising nicely on all days :? ) Will find out tomorrow if the dosage is to last.

I don't know much about blood thinning, but I do know from some other professional work I have done that doctors really dislike dealing with drugs like coumadin because they are so time intensive, that the adjusting is a pain for everyone. Not sure if your experience is outside of the standard range, but my understanding was that it takes awhile to get it right. (and given what others are saying about blood concerns, maybe for many with MS, it will take even longer.) Hope it resolves quickly.
Last edited by Arcee on Mon Jul 27, 2009 2:06 pm, edited 1 time in total.
User avatar
Arcee
Family Elder
 
Posts: 338
Joined: Wed Jan 05, 2005 3:00 pm
Location: Massachusetts, USA

Postby mrhodes40 » Mon Jul 27, 2009 11:21 am

my numbers have been all over the place and I ended up with 2xweekly tests off and on this whole time.
It's been as low as 1.4 and as high as 2.6
keep the diet boringly the same.....so the levels are regulatable
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby cheerleader » Mon Jul 27, 2009 11:30 am

Jeff had trouble getting his blood thin enough, too, Mark. That's why he needed the tuneup on the stent- Dr. Dake thinks the clogging happened during the first week, before he got his INR results, and his numbers were too low. Dr. Dake's got him on 10mg. daily since the balloon procedure- for 3 more weeks, to keep the cleaned stent clear, then he's DONE.

I think the future protocol may included higher coumadin dosages for you MSers at the outset....your coagulation numbers are higher (due to coagulation cascade from hypoxic injury?) We're still learning....
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5092
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby Jamie » Mon Jul 27, 2009 12:17 pm

Mel's first blood draw she was 1.7, they upped the dose, today she is 3 so they are lowering it.

It's an inexact science!
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 3:00 pm

Postby Loobie » Mon Jul 27, 2009 12:21 pm

My first INR was at 3.2, but as you all probably know I had to quit due to a reaction. So tomorrow I get pulled again and if I'm 'thick' we're going with lovonox. So I seem to be the one that got thin right off the bat because that was my first INR reading taken the day after I got home. So I'll find out what my number is Wed. morning and let you all know how the lovonox does. According to my wife it is a 'low molecular weight' heparin. Now it would be great if I just knew what low molecular weight meant 8O .
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby LR1234 » Mon Jul 27, 2009 1:10 pm

Out of interest what should a person't INR be? mine is 1.0 (thats what it was when I had a blood test a week ago)

L
LR1234
Family Elder
 
Posts: 1507
Joined: Wed Feb 11, 2009 3:00 pm
Location: California

Postby skydog » Mon Jul 27, 2009 1:34 pm

Thanks You guys. I kinda thought that everyone was in the same boat on this. I have been trying to keep the diet the same. Lots of berry smoothies and ceviche. Going lite on the dark leafy greens which is a real bummer since the garden has some of the best looking kale and spinach I have ever grown. I have several rows of celery ( a natural blood thinner ) started but not quite harvest size yet. As soon as it is big enough I will add that to my diet. Chickens are getting well fed and the neighbors are saying whoa to too much green. Steady as she goes... Mark
Plant a BIG Garden Live in the Moment
User avatar
skydog
Family Elder
 
Posts: 306
Joined: Tue Feb 24, 2009 3:00 pm
Location: North Oregon Coast

Postby skydog » Mon Jul 27, 2009 1:40 pm

The therapeutic INR level should be between 2 to 3, correct me if i am wrong. Peace, Mark
User avatar
skydog
Family Elder
 
Posts: 306
Joined: Tue Feb 24, 2009 3:00 pm
Location: North Oregon Coast

Postby mrhodes40 » Mon Jul 27, 2009 4:34 pm

the INR used on people who are on anticoagulation compares the time it takes their blood to clot compared to a normal person.

an untreated person should be a bout 1, so an INR of 2 means it took essentially twice as long to clot.

those of us who end up with INR readings at the low 1's are not doing well.....
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby kaykayaa » Tue Jul 28, 2009 1:55 pm

I was on Coumadin for 9 months following a stroke (carotid dissection) and I can tell you it was a pain in the tuckus--not to mention the arm. Everything I ate or did seemed to affect my levels and I finally had to resign myself to checking it once a week at the doctor's office. Really--there is no rhyme or reason to it. My brother-in-law who has a pacemaker and weighs about 200lb only needs a tiny amount to keep his blood thinned (and only gets it checked once every 3 months) while at 150 lbs, I was taking 10mgs a day at one point. My advice is just to grin and bear it and know that it will be over soon. And just be careful around sharp objects, wear your seatbelt, and maybe put off the mountain biking until a later date. I was really paranoid about getting injured during that time. I was on lovenox for a while but can't use it long term for a reason I can't remember. For me, going off Coumadin was a big relief (am now on aspirin therapy for life....) but interestingly enough, during the whole time I was on it, I was also being tracked by NIH's MS screening protocol with frequent MRIs (the only ones I had ever had--lesions were discovered incidental to the stroke and so we had to follow up)...no new lesions. They weren't even sure I had MS (no clinical symptoms except for one possible relapse 20 years ago) Went off, and boom, two months later I had three lesions--that's food for thought in my book....maybe my thicker blood not able to drain as well? Now I get to take shots everyday. Sigh.

Anyway--my heart goes out to you guys! Don't worry too much over it--just follow your doc's advice and know it won't be forever!
User avatar
kaykayaa
Getting to Know You...
 
Posts: 23
Joined: Thu Jun 11, 2009 2:00 pm

Postby mrhodes40 » Tue Jul 28, 2009 3:38 pm

Wow K what a tale! If one is suspicious about the CCSVI model then this is interesting, you kind of wonder if you have a stenosed area that plugged for a bit after the anticoags were gone and that triggered the lesions maybe. are you getting checked for this new model?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby Loobie » Wed Jul 29, 2009 8:22 am

URGENT - my GP has said that I'm "back to normal" at 1 and doesn't want me to take anything but the Plavix and 81mg asp. So I read in here that 1 is bad for this?, that it needs to be thinner? What should the target be so that I can tell my GP we aren't trying to 'get back to normal, but need it higher for a while.

And while we're at it, what the hell is Protine? Protime?, INR? Are they all the same thing? I hear all those words, but never together and just need to know if I'm even getting the right test! This is maddening. My GP even called out to Stanford, so I'm just getting conflicting stories. I've called Angela and she is having another doctor call me, but did anyone actually here from Dake what number he's after? Man, in my next email, I'm going to stress the importance of an "after care sheet". We need something written down to follow because you get so much information thrown at you that unless you're an RN or another Doctor, much of it goes in one and out the other.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 2:00 pm
Location: Dayton, Ohio USA

Postby cheerleader » Wed Jul 29, 2009 8:35 am

Lew-
PT is prothrombin time, same test as the INR. Dake wants you to stay around 2, but don't freak out. Ask your GP to e-mail Dr. D, since he's out of the office and maybe you can use the low molecular heparin to keep your blood thin.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5092
Joined: Mon Sep 10, 2007 2:00 pm
Location: southern California

Postby Jamie » Wed Jul 29, 2009 8:36 am

Dude, until told otherwise by Dake you need to be over 2 at least.

Your GP is missing the point!
User avatar
Jamie
Family Elder
 
Posts: 596
Joined: Mon Jan 07, 2008 3:00 pm

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service