Stuck at 1.9

[Guest]

Nancy, I'm very sorry to hear that. Keep us posted. I'm sorry that you two are having to go through this. I appreciate your backing me up. Many people on the BB are new and don't know my experience, so it helps when others say that something does happen -- unfortunately it happens to real people.

One thing we in health care must never lose sight of is that everything we know we learned from real people. The books set the stage but you never really know it until you have taken care of actual people.

 

[djacq]

Mr Allodwick,

Your posts (and website) have been invaluable to me in coming to terms with a lifetime facing anticoagulant treatment.

It amazes me the lack of knowledge in the medical field in this area.
As I write, a friend is in Mass Eye and Ear from a detached retina reportedly related to the coumadin (hemorrhage behind the retina). He had an AVR, St Jude?s 2 years ago in Boston. This retinal repair was a lengthy, controversial fix for him. They finally admitted him for most of the week, tweaking the anticoag and did surg Friday which post op went beck on coumadin and will be home Sunday. No one could agree on the course of action, including one Doc trying to have him stop the coumadin before surg!!.
He also is being refused dental care because he is on coumadin. This is in Boston where I aways felt medicine was on the cutting edge.
It seems we have to do major advocation in our behalf. It has been very difficult and anxiety provoking for me and I have been in the medical field 25 years.
You are such an asset to this group and have my utmost respect and gratefulness you take the time to keep us informed and can only imagine the number of negative incidences you have prevented.
I look forward to your educational posts and plan to use them in the management of life on Coumadin.
Thank you sharing your expertise,
Donna
P.S. I hope Nancy?s husband is ok and she will be back soon to continue to inform new members of our good fortune to have you on board!!!

 

[Guest]

What we try to go by is call evidence-based medicine. This means that when someone has a study or an unusual case they should write it up in a standard format and submit it to a peer-reviewed medical journal. The it is entered on data-bases such as the national Library of Medicine. It then becomes instantly available to anyone who has internet access. Many hospitals now have internet access on every patient care floor. That means that a doctor who has a question can probably find a similar problem and how someone else solved it within 3 or 4 minutes. (This is why I publish angry statements when a doctor BSs somebody rather than taking the time to find an honest answer.)

The shortcoming is that many do not write them up. A study sponsored by a drug company that does not show that its product is superior may never get published. Or a doctor who has an unusual case may not take the time (or think that he/she is not a good enough writer) to get it published. Then the knowledge never gets disseminated. Alternately nobody wants to fund a study for a product that has a generic version because nobody will benefit economically from the findings.

This is probably the situation that your friend is in. Nobody has published a article on how they managed the problem of a detached retina in a mechanical valve patient. Of course it is human nature to not want to publish an article where a treatment failed (to say nothing of the legal aspect). But of course even a negative article would give guidance to your friend's doctors. So there is no body of evidence-based medicine to guide your friend's doctors as to what to do. I know of no article published in the last 6 years. You can also bet that the doctors at even such a prestigious as Mass Eye Ear have no experience in what to do.

Over the last several years, I have asked doctors in Colorado, Boston, North Carolina and Australia if they would do a study on the relationship between warfarin and eye disease - particularly macular degeneration. But, as MATXR, pointed out, there is little funding available for a drug that has a generic version and for a non-positive result. My father took warfarin for about 25 years and had macular degeneration.

We hope that your friend's doctors will take the time and effort to publish their results.

One positive note. AstraZeneca is testing Exanta (ximelagatran) on sheep with mechanical valves now. You will not have to take warfarin for the rest of your life. There will be a replacement, albeit still years away.

Thanks for your nice comments.

 

[djacq]

Mr A,

So glad to hear Nancy' s back "on Board".

I am trying to spread the word that the Doc's at Mass Eye and Ear post their findings with my friend's case. I wonder how my friend got in this position? It started out as retinopathy (diabetic related) and they started doing surgery on his eyes and it progressed to a detached retina. I wonder how stable his INR was during this period leading up to the detached retina? Iatragenic???

So it seems easy to understand that Doc's would not be anxious to write up cases that have been negatively compromised.

Thank you for the encouragement of medication update (Exanta) but what is the advantage of this over Warfain? Is there any place I can get info to save you some time?

I am encouraging my friend to push for publication of his condition and procedures but it is still unclear if he will ever get his sight back.

Thank you again,
Donna

 

[Guest]

I have served on a consultant's panel for Exanta. The information at http://www.warfarinfo.com/ximelagatran.htm was written by one of my students. It is probably the latest information available anywhere - some of it has never been published anywhere else.

 

[Blanche]

Donna:
I am sorry, but not surprised, that your friend is having difficulty getting dental work because he is on anticoagulants. I recently read an article that said 70 percent of the dentists still require their patients to go off coumadin before they can be treated. This is not in keeping with the American Dental Association and with other state dental associations that I have encountered, including my own, Arizona. Yet, when our dentist of 27 years got a new hygenist (independent contractor) she insisted that my husband go off medication for three days. This was solved by providing articles and materials from Al Lodwick's site.

I would suggest that your friend contact the Massachusetts Dental Society for assistance in obtaining materials relative to his condition, and for help in finding a dentist that is knowledgeable about the proper procedures for patients who take anticoagulants.

Massachusetts Dental Society
2 Willow Street #200
Southborough, MA 01745
(580) 480-9797
(800) 342-8747 (In state)
(800) 943-9200 (National)
(580) 480-0002 (Fax)

The "Journal of the Massachusetts Dental Society" does have an article in the Winter 2002 edition, entitled "Strategies for Managing Patients Requiring Dental Extractions." I have to believe that procedures for dealing with those on anticoagulants would be included, and that those procedures would follow the practices set forth by the American Dental Association....But, you never know. I could not view the article because it is blocked from people like me who are not members. I hope your friend finds an informed dentist who can help with dental work he needs and should have.
Blanche

 

[Gisele]

Al-I'm back @ 1.8

Al-I'm back @ 1.8

Have you ever heard of anyone being coumadin resistant?? After 2 days @12mg, then 7 qd on Fri/Sat/Sun. I went from 2.4 on Friday to 1.8 today. Back onto the Lovenox this morning, increased my dose to 10mg and will retest Tues morning.

Do you think it is possible what so ever??? I am seriously considering going into Boston to seek a second opinion. What I dread most about going there is the drive. You have to drive like a maniac--really!! My husband would have to take a day out of work and bring me. But I have reached a point where after I see my doc next month I will give it some serious consideration.

I am tired of the "I don't know" answers from physicians.

Have a great Christmas Eve & Christmas day everyone.

 

[LUVMyBirman]

Hi Gisele,

I have had a few occasions that this has happened to me. Major major exercise and or heat exposure, Which at this time of the year I doubt that is the case.

You need to take a close look at your other meds including vitamins. Also your INR testing method. Did you have a physical lab draw of your INR to confirm your low reading? Maybe there is something there? I would question your doctor on the use of the Lovenox. I agree it's better than not being covered or sitting in the hospital for that matter. FDA put out a warning on the use of it for all prosthetic valve patients. My cardiologist will not prescribe it for me. Hate to see what my options are for a simple out patient tests.

Anyway, big sigh.......... I understand your frustrations. Have a wonderful holiday and try to keep it off your mind. At least for a few days.

 

[Guest]

The last time I was in Boston, I picked up a rental car at the airport and at the end of 1 hour I had driven 3.1 miles. No wonder they drive like maniacs when thr road opens up.

Weren't you the one who had a problem with Fiorinal and fluctuating warfarin doses? I assume that you are avoiding this combination. But as Gina wrote, you should be looking at all of your other meds too. There could be something interacting especially something that you only take on an as needed basis.

When I get complaints like this, the most common thing that is happening is that the person is testing too often and changing the warfarin dose too often. Remember that it takes about three days for the warfarin to take effect. So, if you tested on Friday and changed the dose and then tested again on Monday, you may not have seen any effect of the warfarin dose change on Friday yet. So then if you change the dose on Monday -- you get to be like a puppy chasing its tail. Many, many doctors do not understand this time lag of warfarin.

What I would like to see you do is to figure the dose that you took over the past 7 days. See how that compares to the last dose that put your INR in range. Then add about 10% to 15% to that amount. Then take this dose for 7 days and see what happens. You are almost always better off with an INR that is slightly high rather than one that is low. I know that it takes a lep of faith to not test for 7 days but I'm fairly sure that you are changing the dose too often.

Try this before having your husband take a day off and joining the maniacs!!

As for the Lovenox. Most of us who work with warfarin full-time think that Lovenox is still the best choice for people with valves. I have written about evidence-based medicine and it seems that someone at the FDA is guilty of not practicing what they preach. There were two pregnant women in Africa who were placed on Lovenox. The dose is supposed to be adjusted by weight but they did not do this as they gained during their pregnancy. They died. As a result, the FDA decided than nobody with a valve in the USA should get Lovenox, pregnant or not. This does not follow the tenets of good evidence-based medicine.

Several of us had dinner with a medical school professor earlier this month and discussed the issue. She said that she is confident the Lovenox is the best choice but now that the package insert says that it is not to be used in people with valves the medical group's attorneys say, There is no way in (you know where) that you are going to prescribe Lovenox to anybody with a valve. As she sees it, this is now a legal issue not an issue of good medical practice.

Our national organization is trying to get somebody from the FDA to speak at our meeting in May to explain their thinking and ask them to reconsider. I hope that they changes the package insert long before May, but who knows.

 

[Gisele]

Thanks Al & Gina

Thanks Al & Gina

Just re-tested @ 1.6!! 10mg today with Lovenox. (sigh-again)

Gina, I have not gone to hospital to test. I know I should get around to it, but I figure this week isn't too good a week to do that with the holiday.

Al,

I only took Fiorocet for two days last week. Major, major headache, was on Lovenox, thought I was dying type of thing, CAT Scan was negative (doc sends me everytime-worried about another subdural). When that proved negative I stopped Fiorcet. That didn't help at all in seeing any changes to my INR.

I understand what you are saying about testing too often.

#1-No matter how often I test, I am on enough coumdain daily to kill a big rat. I should never get as low as I am getting.

#2-I only test this often when I am low as my doc wants to check my progess on how high I am getting on his increased dose (even though he may not change the dose) It is just to see if I still need the Lovenox. (remember the bleed in my hip in March from Lovenox?). Want to avoid that. Today he kept me on the same dose of 10mg continue with Lovenox.

When I am in range I only test once per week.

My doc allows me to use Lovenox in spite of the FDA warning which I faxed to the office when I read about it thanks to this wonderful group of people on this board. Although some of the docs in the practice don't like to use it (I heard) mine still allows it for me as I would have a permanant room at the hospital for my heperin doses at the rate I am going. For that I am grateful.

I am going to do a spreadsheet of all my InR readings for the past year (but I don't have the prescribed doses written down anywhere). I keep my readings on my calendar. I will have to get the office to send my all my doses to correlate with my readings. I will also print out the sheet with the % increase/decrease and review that with my doc on my visit in one month. Maybe a format like that is worth trying. It certainly wouldn't makes things worse, and I am more than willing to give it a try.
I really don't know what more I can do.

Merry Christmas!
Gisele
PS Gina: What vitamins??? LOL (I have enough pills to take with all my presciptions, no room for vitamins)
PS Al: The traffic with the Big Dig project is absolutely horrible. As it is when my husbands drives us in I apply the brake pedal on my side of the car it is now a laughing joke between us. My husband keeps on saying: Gisele, you don't have a brake there!

 

[Guest]

How many husbands do you have? Do they all have brake pedals?

I am 99.99% sure that it is the Fioricet that is causing your problems. The barbiturate in it stimulates the enzymes that metabolize warfarin. This means that the INR drops and you need more warfarin. I have a patient who does the same thing that you do, just takes a few Fioricet per month. However, this is enough to keep the enzymes stimulated MOST of the time. It seems to take about two weeks for this effect to wear off. Then when she goes a month without a headache her INR spurts upward because the effect on the enzymes has worn off. It is not just Fioricet that does this Bellergal and Dilantin (it is metabolized to a barbiturate) does it too. The bottom line is that as long as you need ANY Fioricet you are going to have to accept the fluctuating and low INRs. I'd bet the ranch on it!!!

 

[Gisele]

LOL---just one husband

LOL---just one husband

OK-so Fiorcet is the culprit and probably so with LFT's also. I don't use it that often, but I suppose if it takes two weeks to return to normal, then two days of this med could cause diaster with INR. I just assumed my INR would be low when on days when I was taking Rx. Since my doc started me on Toprol XL daily, it has really helped in keeping my migraines away. That has been a godsend. Docs won't give me anything else. PCP is upset that neurologist won't allow me Imitrex as he doesn't see why I can't use that. So I am stuck in the middle as PCP won't give me anything else.

Thanks Al for all your help. I would love to use Exedrin Migraine or Advil migraine instead, but we both know that isn't possible (or is it?)

By the way my meds are: Estraderm, Coumadin, Toprol XL, Levoxyl, Dyazide, and Prinivil. Only Prn meds are: Lovenox, & Firocet & Allegra

Merry Christmas

 

[Guest]

Gisele, here is something to try. Naproxen (Alleve) is ordinarily not recommended for people who take warfarin because of the potential for gastrointestinal bleeding. However, in my experience it has a pretty low potential for causing this. (Lower than ibuprofen (Advil etc.) Since you still have these breakthrough migraines and when they happen they are debilitating, I think that this is worth a try. Something similar works for my wife. She is NEVER without her medication. This only works for her when she feels the FIRST twinge of anything that MIGHT be a migraine.

Take 1000 mg of acetaminophen (2 Extra Strength Tylenol) AND two Alleve tablets. It does not work if she waits until she has pain. Because it is only used occasionally it is pretty safe. It does not exceed the recommended dose of either agent. DO NOT TAKE ANY LESS AND DO NOT TAKE A SECOND DOSE.

You must watch for any signs of bleeding. Black, tarry stools indicate bleeding high in the GI tract and of course, red indicates bleeding low in the GI tract. If bleeding occurs STOP and never try it again.

As I said, I would not recommend this to everyone taking warfarin. However, you have an additional problem that complicates your life. The Fioricet makes your warfarin dose fluctuate, so I think that you are justified in trying this.

I can't guarantee that it will work or that it won't cause problems but I do feel that there is a good chance that the benefit will outweigh the risk.

 

[Lorraine]

Gisele, for the last few weeks I've been in the same boat, with my INR going down while my cardios office keeps increasing the dosage of Coumadin I'm taking. I tested Monday at 1.7. The week before I was at 2.0 and the week before at 2.2. This week I'm taking 10mg and 7.5mg alternating days. Last week I was taking 10mg every third day. Don't understand it. The only thing that had changed with me is a couple of months ago I started taking prescription iron supplements because my doctor said my blood test showed my iron being low. Now every since I've been on it it seems my INR has been going down. The only other factor going on in the last month is I was working long hours at the University because I'm the co-ordinator of exams, so my work days were longer, my dinner time was screwed up. I did get less sleep every night too. I did manage to take my Coumadin at the right time each evening (as I was still at work).

Al, any ideas? I test again this Monday, on Dec 30th. I'll keep everyone informed. God Bless!

 

[Gisele]

I guess I have company

I guess I have company

Lorraine, I understand what Allodwick is saying with testing too frequently and dose changing too often. My concern though is I have been given fiorcet for the past 15 or so years. Not until this past year or two (this year more so) have I had such difficulty. My normal testing routine is once per week. When I run this low and need Lovenox, I am directed to test nearly daily or every other day not so much to change my Coumadin dose, but most importantly to discontinue the Lovenox when it is no longer needed.

My current dose is 10mg daily, but normally it is 7/6/7/6. I can remember about 3 years ago I was taking I think 3/4/ and that turned into 4/5 and it just keeps on going up!

Lorraine, I understand your frustration. I have relayed to my docs office that I am compliant as when a patient has a difficult time maintaining their range constantly the first thought is that they are non-compliant. I assured them that this isn't the case.

Well, I am going to take a day off from worrying today. Gee, maybe that alone will cause my INR to increase! LOL

Have a Merry Christmas everyone.
PS: We are getting 18 inches of snow today. Anyone want to help shovel???