Topic: Can't get my INR level up...keep increasing my Coumadin...don't get it!!!
Tracy9
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Member # 7521
posted
Why do my Coumadin levels keep going down? This week my INR is down to 1.2 despite increasing my Coumadin YET AGAIN last week. "We have to get this up there, you are at risk for another blood clot" my doctor's office just said to me.
When I was on it last year I had no problem staying in therapeutic range. Now I am up to 10 mg a day. Grrrr. Is the Rifampin screwing with that too????
I am going to go to Drugs.com and check the interactions. This bites. The good news is my liver functions are normal, even after being on Rifampin almost a month now, yay!!!! And my blood sugar is on the low side, since I have stopped eating junk food. That's a change!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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OOPS...I should have added the level is supposed to be about 2.5. I have never had trouble regulating it before, and have usually taken Coumadin 2.5 mg one night and 5 mg the next.
Today they increased me to 10 mg on Weds and Thurs and 5 mg the rest of the week. Every week they have increased me. Every week my INR level has steadily gone down.
I'm not really sure if I have to worry about this because the only time I've gotten blood clots is when I've had a line in, and I don't have a line in anymore. But I do have a serious blood clotting disorder and probably need to be on Coumadin for life per my PCP.
I hate that thought; I know it is dangerous. I see a new hematologist in about two weeks.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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OK, well that answers that. From Drugs.com:
GENERALLY AVOID: Rifampin may decrease the anticoagulant effect of warfarin by enhancing CYP450 hepatic microsomal enzyme metabolism of warfarin.
MANAGEMENT: Concurrent use should be avoided unless no alternatives are available. The INR or prothrombin time should be monitored closely during concomitant therapy and after rifampin is discontinued. Adjustments in warfarin dosage may be needed when rifampin dosage is added, discontinued, or changed. This interaction may occur with other oral anticoagulants and with rifabutin.
Now what I DON'T get is why the nurse at my PCP's office who manages my Coumadin didn't look this up. Duh. I've seen both my PCP and LLD go to drugs.com to look up interactions during my appts.
So I wonder, is it any problem that she has to keep increasing my Coumadin, is it really an issue anyway since I have no line in....and I know these are questions for the hematologist.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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pamoisondelune
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Member # 11846
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Tracy, I don't know if this is realistic or relevant for you----- but does it have to be Coumadin?
Coumadin is such a difficult problem.
Did you try nattokinase, serrapeptase, lumbrokinase as much as you could and found them completely ineffective?
I've taken high-dose nattokinase for 4 years and never had any problem. I haven't had an INR or an IV either, though.
Some people with risk of blood clot do choose nattokinase INSTEAD OF Coumadin.
Best Wishes, ----Polly Polygonum -----or Nilufar Knotweed
Posts: 1226 | From USA | Registered: May 2007
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dmc
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posted
so sorry you're going through all this.
Nothing has gone easy for you on this journey to health.
How's IVIG going? Are you able to continue that while dealimg with the blood clot issues?
Hope things resolve soon.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Tracy9
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Polly, I did not try those first....my docs prescribed the Coumadin after my last two blood clots. I've had four now and have a serious blood clotting disorder, unfortunately; and the more clots you get, the more likely you are to get more.
DMC, ugh, struggling to get back on IVIG. Both my LLD and PCP are approving it again after I've had many, many complications with it, but I've reasoned my way into getting them to give it another try by slowing down the infusion rate and changing brands.
I'm having a hard time getting it set up with the Cancer Center, who clearly do NOT want me back. I've had anaphylaxis there every single day of my IVIG, meningitis and pericarditis ending up in two hospitalizations and one ambulance ride following IVIG.
But, I think it's because they infused it too fast, as my reactions always followed them ramping up the infusion rate. I have never reacted when they kept it low.
Also, one of the first things they do from what I've researched when you react is change the brand. So I have my LLD all set to give those orders, PCP has ok'ed it, just trying to get the darned Cancer Center to set it up.
I'm ready to quit the Cancer Center and go to home infusion but I don't think they will come in and do it until I can show I've successfully infused in a hospital setting without complications. I liked going to the Cancer Center because it got me out of the house and I felt safer considering my history.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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dmc
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Still hoping/wishing you succes in the recovery of this new complication. (both the physical, and administration stuff)
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Tracy9
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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pamoisondelune
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Tracy, do you know about these gene variations, and if not, why didn't they tell you?
I just read this in "Technology Review",Mar/April 2010 , p.66 : a chart about genes and drugs. About Coumadin , it says, "
"In patients with either or both of two genetic variations, the drug can cause excessive bleeding rather than help prevent blood clots. Genetic testing can reveal the right dose."
Could this be you??
You could still try nattokinase.
Good luck, ----Polly Polygonum ---or Nilufar Knotweed
Posts: 1226 | From USA | Registered: May 2007
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Tracy9
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Well it worked fine and I stayed perfectly in therapeutic range until I started the Rifampin. Two more weeks until I meet with the hematologist and try to get this straightened out. My level dropped AGAIN this week, it's down to 1.1. I am totally and completely unprotected. My Coumadin dosage is up to 10 mg a day. I keep taking more Coumadin and still my levels keep going down.
I'm wondering if the hematologist will switch me to Lovenox shots.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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pamoisondelune
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Tracy, in this case when you are unprotected, you SHOULD take nattokinase , or lumbrokinase or whatever. (I think). Do you read Dr Moll's online forum? He's said to be the hematology expert.
I used to read a blood clot forum, and one woman, who was a chiropractor, was already taking Coumadin.
She researched nattokinase for a year and then concluded it was all right to take nattokinase SIMULTANEOUSLY with the Coumadin.
This forum was always having nattokinase wars, half for it and half against it.
You didn't get blood clots until you were doing IV, right?
It's too bad you are accumulating all these difficult drug solutions. That's what happens when you pile up heavy pharmaceuticals,--- they cause problems . It's too bad you didn't at least try to see if nattokinase would do the job first.
On Coumadin, you are not allowed to take Vitamin K2-7 or Vitamin K2-4. Those are important for your health. But maybe you eat them naturally; they are found in egg yolks, liver, cow butter, and certain aged cheeses such as Emmenthal.
I ate none of those things for decades, so i'm glad i'm on nattokinase and not Coumadin, so i can take Vitamin K2-7 or Vitamin K2-4 (menatetranone) in pill form, since my gut bacteria that make them were i assume hindered by antibiotics.
Sorry you have all those drugs!
---Polly Polygonum ----or Nilufar Knotweed
Posts: 1226 | From USA | Registered: May 2007
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I happened to be on here and I saw your post. I had the same exact thing happen to me last year. I had a blood clot in my lung. It hit me like a brick wall bad chest pain and then I knew something was not right.
Yes,yes,yes.....you are so right about the INR levels staying low due to the Rifampin. Also, I had in general a really hard time keeping my INR up after the Clot and they kept making me go back on the shots in the stomach. We finally got the Coumadin to a level that was acceptable but I had to alternate week days every other day of the week I was on 15mgs and on the weekends I dropped down to 10mgs.
Good luck with that. I know it is very frustrating!!! Hang in there.
Posts: 131 | From Georgia | Registered: Oct 2008
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Tracy9
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I should start taking the Nattokinase, I'll have to go online and order some.
Yes, I am up to 10 mg a day now. My INR went down again this week to 1.1. I did only get the blood clots once I got a line in but in February had two; one from my PICC line and one from an IV/heplock I had inpatient that was only there for 3 days, and it went from my elbow almost to my shoulder. Unreal.
I don't know why I'd get another clot now, but I'm not sure if the Coumadin is supposed to be still breaking up these clots since it's only been 3 months since I got them.
When I restart the IVIG which will be soon, I'll be at risk again because I'll have a line in for several hours. Ugh. It's all so frustrating. I will be sure and get on the Nattokinase before I go for the IVIG.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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pamoisondelune
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Tracy, i'm not a hematologist. I don't want to cause any disasters. Did you ask Dr Moll online?
Now you have the crazy problem of deciding how much nattokinase to take.
From the accounts i used to read, nattokinase WILL work at dissolving the blood clots you got already.
I'm so lucky, because my body TELLS me how much nattokinase to take. If i get any little spot pain or uncomfortable spot in my lower legs, i take that as a symptom telling me to take more nattokinase. i immediately take a nattokinase pill, and the discomfort spot goes away. My dose is consistent, my body consistently reacts the same way.
How did i get that association or idea? On the blood clot forum, several people discussed precursor signs before they got their blood clot. They mentioned little random spot pains in the lower legs.
But your symptoms would be all crazy, probably, on Coumadin. I don't know how you would judge what your body wants to tell you.
The purpose of the Coumadin, you were asking--- it's the RULES. A person who has one clot is not put on Coumadin. A person who has had two clots, is put on Coumadin. It's the way they do it.
However, i haven't read any blood clot forums for 4 years now.
Good luck, ----Polly Polygonum ----or Nilufar Knotweed
Posts: 1226 | From USA | Registered: May 2007
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Tracy.. I would recommend this product as 3 of my doctors have recommended it and I am on it ongoing for various reasons of blood thinking and biofilm breakdown etc.
Bolouke� (Lumbrokinase) is a clinically proven fibrinolytic agent, and is an excellent complementary supplement for restoring and maintaining circulatory health. Its effects are supported by human clinical data, and it has been shown to be safe, effective, and well tolerated.
Additional information for Doctors
Dosage Form: Gelatin Capsule
Servings: 60
Each serving (1 capsule) contains:
Proprietary earthworm protein extract (Bolouke� Lumbrokinase) 20 mg
Other Ingredients: Cornstarch. gelatin.
Recommended Usage: Take one capsule one to three times daily 30 minutes before a meal. For maximum benefit, take 2 capsules three times daily 30 minutes before meals for 3 weeks or as directed by your healthcare professional.
Storage: Store in a cool, dry place.
Warnings: Please consult your physician before taking this product or any other health supplement, especially if your are on any prescription medicine, are pregnant or have bleeding risks. People with known allergy to lumbrokinase should not take this product.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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merrygirl
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Member # 12041
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tracy- I wouldnt just stop the rifampin abruptly when and if you do. That may make you r levels too high. Just a thought my friend.
hang in there!
Posts: 3905 | From USA | Registered: May 2007
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Tracy9
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No plans to stop the Rifampin, and my Coumadin nurse already brought up THAT horrific scenario! She said when I stop the Rifampin I could be bleeding all over the place and have a huge hemorrage! But I've only been on it for a month and it just got finished kicking the hell out of me, so it is really working on my Bart and I plan to be on it for a very long time.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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