worried the most about coumadin . . .

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

worried the most about coumadin . . .

Postby bluesky63 » Wed Nov 11, 2009 12:45 pm

Hello to everyone. :-) Thank you so much for your wonderful help and replies -- you are the very best people! :-)
Last edited by bluesky63 on Sat Feb 06, 2010 9:49 am, edited 1 time in total.
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Re: worried the most about coumadin . . .

Postby magoo » Wed Nov 11, 2009 1:12 pm

I have been so excited about all of this that sometimes I can't sleep. The idea that I might get some of my life back . . . I wouldn't even care so much about the mobility stuff, but to be truly *present* and alert with my children, to get part of the old me back, to be able to think and feel even partly like I used to mentally?

I felt exactly the same way bluesky.

I would do anything to give them the parent they should have, and to be a more complete person for them, and to prevent any further progression.

Again, I felt exactly the same way.

So -- honestly -- about coumadin? It scares me! Can the people who are using it talk a little about what it's actually like? Are my fears valid?

For me the coumadin hasn't been an issue at all. I have bruises. I wear the medical alert bracelet. I won't do anything risky. But this is only for 8 weeks. Believe me after what we go through on a daily basis, this is simple.
Are you scheduled to see Dake or are you still deciding?
The best part of all of this is the fact that my kids tell me how much better I am. That makes it all worth it for me.
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby CureIous » Wed Nov 11, 2009 2:02 pm

Hey Bluesky, congratulations on your upcoming re-pipe. The thinners are a concern, but keep in mind there are people that are on them for LIFE that have heart valves and such, this is only for a couple months. Yes, it does affect you but to what degree, only you can say. For me, it was yo-yo up and down type of thing, where I could actually feel when my INR was up, it is manageable though, it just takes awhile for the body to accustom itself to dosage variations. That's why everyone starts off low, then check INR, then adjust, then check again, then adjust, next thing you know, you're done! Bruising is a consideration, lacerations are a concern for sure, just use precaution that's all, save the knife sharpening for next year :). Walmart has a really cheapo bracelet near the pharma counter it's kinda stretchy one size fits all deal. No big whoop. Just in case is all. Might want to kick the rough-housing down a notch but I played with my kids no problem. Shaving will be a problem but not that much of a problem. It's all manageable. Totally. I know some on here had INR's as high as 5, I thought 3 was bad! That's why we get monitored. If I was concerned in the least, I just went in and had another test in a few days after adjusting the meds.

Your system is going to yo-yo a lot, this is normal, before it plateaus at a nice idle speed. Just about that time, you'll be off the meds.

Risk/reward ratio definitely leans heavily towards the reward side....


EDIT: Wanted to toss in a discussion board I had saved with people who are mostly on long term coumadin and their experiences with it. This originally posted under the stress and inr post.

RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby GiCi » Thu Nov 12, 2009 9:00 am


I understand your concern and you may be interested in having some information about the drug.

Coumadin is not a blood thinner; it acts on the cascade reaction that makes the blood clot in the event of exposure to the external environment (like it happens with a wound). It is used in many clinical cases and the most frequent are:
1. A mechanical valve put into the heart (the foreign body may cause some clots formation on its surface and they could go around to occlude vessels in the body with conseguent damage to the relevant organ).
2. Chronic thombosis of leg veins (clots).
3. Atrial fibrillation (the upper chambers of the heart do not contract with conseguent stagnation of blood).

Coumadin is a powerful drug and must be managed carefully. It needs diligence and adherence to the dosage prescribed on the basis of regular tests of the blood (INR). I do not know the INR prescribed after the positioning of stents in the jugular veins, but I could imagine it to be between 2 and 2.5.

Heparin (Clexane) does the same job but taking tablets (Coumadin) is better than having daily injections.

A very large number of people take Coumadin for life and the risk of serious complications are small providing strict adherence to the prescription.
Activities which involve the likehood of serious trauma (contact sports for example) must be avoided. In addition it is important to be familiar with the conditions which may interfere with the effects of the drug (food, drinks, gastric and intestinal absets).

I hope you found this useful.
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Postby vendredi5h » Thu Nov 12, 2009 6:54 pm

Hello Bluesky,

If it can help you, I'm taking coumadin for five years now and l'll probably take it for the rest of my life (I'm 36). It's really not that "dangerous". I'm bruising easier but not that much either. I'm still cuting myself occasionnaly while shaving and it just a little longer before it coagulate.

I think the biggest danger is if you badly wound yourself and are unable to put pressure on it, either because it's internal or you're unconscous... or you lose both your hands it the accident! And for that to happen, it would take a pretty damn big running fast loving hug! :D

But other than that kind of very important wound, I don't see that as very dangerous if you follow the prescription.

Another thing... If you reach the hospital after a important accident, they can easily stop the anti-coagulating coumadin effect. So in my opinion it would take something really castatrophic for coumadin to make a difference between life and death.

Anyway, that's my two cents! Don't worry too much.

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Postby prof8 » Thu Nov 12, 2009 11:16 pm

Is the only difference between Heparin and Coumadin the method of taking it (pills v. injections). Or does one have fewer side effects and/or need less monitoring? I can't say I am looking forward to being on Coumadin.
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Postby Loobie » Fri Nov 13, 2009 6:43 am

Cleaxane, at least as I understand it, is labelled as Lovenox in the states. I checked into it and it's a royal pain to not only go to a place that gives the shot every day, but it's also so expensive it made my head spin.
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Postby Rokkit » Fri Nov 13, 2009 7:53 am

I think also I remember Erika saying you don't have to have your INR monitored on heparin.
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Postby ErikaSlovakia » Fri Nov 13, 2009 8:45 am

Rokkit wrote:I think also I remember Erika saying you don't have to have your INR monitored on heparin.

Yes, you are right, I do not have to go to check my INR.
I really do not feel any difference in my body in comparison with not taking Clexane.

Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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