Thank you

[attissy]

Hello everyone,
I first would like to thank each and every person who communicates on this site. I have not posted a lot of threads or responses, but this site has helped me more than words can express. I am always reading something new and helpful to my situation. Thank you, thank you, thank you!

I had aortic valve replacement surgery (with subsequent pacemaker insertion) in early April of this year. I am doing pretty well, with one minor problem at this stage of the game. I have very unstable INR results. My last INR was 1.5, and that was after they increased my Coumadin dose. (Currently on 15 mg three times a week, 12 mg other days) I have only been in the acceptable range of 2.5 - 3.5 one time since my surgery. I have tried to do everything with consistency (vitamin K foods, exercise, other medications, limited alcohol, etc), but without much success in getting my INRs to stabilize. Before I found out I needed OHS, I had just started seeing a rheumatologist due to some abnormal blood work results (positive ANA 1:180 speckeled pattern, high ANTI-SSA 25.2, low C3 99.7). He said at that time my results were borderline and to followup. As all this heart stuff came up, I have not gone back yet, but am wondering if I do have some sort of rheumatologic disorder (such as lupus), could this effect my INR and/or Coumadin? I am hoping someone has had a similar experiene or can shed some light on this. I did ask my cardiologist's physician assistant, and he was not sure. I know I need to check with my rheumatologist, but have not done so yet. Any help or ideas would be appreciated.

Help and thanks again.

 

[Karlynn]

Sorry to hear that you are having problems with your INR. Hopefully Al Lodwick will be along soon to comment on your issues that led you to see a rheumatologist. I don't know the answer to that.

I will tell you that many times people with unstable INR's are due to someone managing their Coumadin that doesn't know what they are doing. I'm not saying this is your case, but it does seem to be an issue for some. The problem arises when the person managing the Coumadin adjusts the patients dose too often. Of course when the INR is below range as yours was at 1.5, the dose needs to be changed. But many people will look at a 4.0 reading and feel they need to decrease the patient's dose. Then they decrease it too much and it sends the INR low, so then they increase it and it sends the INR up. The INR then starts bouncing like a rubber ball.

We always say dose the diet, don't diet the dose. If you just eat the way you normally would, and exercise the way you normally would, then your dose will be adjusted to that lifestyle. Trying to change your lifestyle in order to maintain an INR is pretty futile. It just doesn't work.

Take a look at your INR and dosing history. If your Coumadin manager is having you hold doses for INR's of 4 or even 5, this could be the reason your INR is not staying in range. Al Lodwick says he doesn't even change the dose if someone comes in with a 4 INR. People like you who are on a lot of Coumadin (and me) will have their INR drop much more quickly when a dose is held or decreased. People that take 5 a day will not have a big swing from a held dose that you or I would.

The reality is that very few people truly have problems with long-term extreme INR flucuations because their body has issues. Most often we find it's because the management of the Coumadin isn't what it should be.

Have you gone to Al's site to look around? www.warfarinfo.com has tons of information. Maybe you'll see something there. I'm sure Al will post here once he reads your thread.

 

[attissy]

Thanks for getting back to me so quickly Karlynn. It is so funny you mention that it is usually the physician handling the Coumadin dosing that is not sure of what they are doing. When I switched from having my INRs managed by my surgeon to having my cardiologist handle it, he said the same thing.......that surgeons usually do not have as much experience with Coumadin dosing, so he was sure he could get it under control.....with no luck yet!

I have never been above a 2.6 (that was my highest), so they have continually had to raise my dose. I have never had to hold any doses or reduce any. I know that I have been more active as I have recovered, but believe me I am no marathon runner!

Thanks again for the kind words and reassurance and wisdom. All are greatly appreciated.

P.S. I have checked out Al's web site many, many times and I love it. It has answered so many of my other anticoagulation, coumadin, INR questions, but I didnt see anything about rheumatologic problems in relation to INRs or Coumadin. I certainly will look again though.

Thanks,

Tiffany

 

[Granbonny]

Hi Tiffany

Hi Tiffany

Welcome to our forum.. Could you post exactly your coumadin dosage?Like M-S..what doseage?.....Are you taking 15mg. a day..3 x's a week and 12 mg. 4 times a week? I would like to see the days for the different doseage...and how often do you test?..That is a high amount to take..to not be any higher?..... Have you thought about hometesting?...Bonnie

 

[Karlynn]

Tiffany, I'm sure Al will be checking in soon and will read your post. He always visits the anticoagulation forum. I will also be interested to see if your possible blood issues have an effect on the Coumadin.

Your cardiologist is right, surgeons are not the best "experts" when it comes to Coumadin. I don't think too many even handle it. At least we know your issue isn't someone having you skip doses.

How often are you testing? If your INR is staying below 2.0 for long you may want to ask your cardio about Lovenox injections until you get it up above 2.0, just to keep you covered. Just a thought.

Best wishes.

 

[Ross]

Tiffany if Al doesn't visit this site tonight, contact him via PM or email. I'm not sure of the answer here, so I won't even try it. Let he who is qualified do that.

 

[Guest]

It could that the surgeon was overreacting and making too many or too drastic warfare the cardiologist in changes. That seems to not be the case since the cardiologist is having problems, too.

It could be that you are recovering well and requiring larger doses.

The one that worries me the most is that it could be lupus. This makes warfarin very hard to manage. Lupus flare-ups put you at increased risk of clotting. When the flares normalize, then your INR is too high.

While not everyone who has lupus has antiphospholipid antibody syndrome and vice versa there are a lot of similarities. You might benefit from looking at www.apsfa.org Tina has a very helpful website there.

 

[twinmaker]

Tiffany, welcome to the site. Sorry you're having trouble with the INR swings and not being able to stay in range. I've been on Coumadin for 25 years, and I have had trouble staying in range. In fact, I was followed for 15 years by a Hematologist at Johns Hopkins because we could never get it to stay in range for very long. We never knew why. This doctor did everything short of coming to live with me to watch everything I did. I also require a very large dose and always have. They tell me I metabolize it very quickly. Anyway, I home test every week just to make sure of any big changes. Home testing has really helped me in that I don't have to have my veins stuck every week. I did that for over 23 years. Try not to get discouraged. Hope you're able to get some answers soon about your individual situation. I just wanted to share my experience with you. Keep us posted on what you find out and how things are going. LINDA

 

[catwoman]

Attissy:

Welcome!
Another cheesehead here -- born in Milwaukee at what was then Evangelical Deaconness Hospital. My parents moved back to Texas about 6 months later.

Below is a list of Coumadin clinics in Wisconsin, from the www.acforum.org website. (There may be others.)
I know that Oshkosh, La Crosse & Janesville aren't close, but I'm not sure about Ladysmith or Superior (I would guess that Superior is not, that it's in upper WI).

Affinity Health
Phone: 920-223-2000
2725 Jackson St., Oshkosh, WI 54901

Fraciscan-Skemp Healthcare
Phone: 608-785-0940
700 West Ave South, La Crosse, WI 54601

ST. MARY'S HOSPITAL OUTPATIENT ANTICOAGULATION CLINIC
Phone: (414)291-1070
2323 NORTH LAKE DRIVE, MILWAUKEE, WI 53211

MARSHFIELD CLINIC - ANTICOAGULATION MANAGEMENT SERVICE
Phone: (715)532-2300
906 COLLEGE AVENUE WEST, LADYSMITH, WI 54848

MERCY HEALTH SYSTEM
Phone: (608)756-6600
P.O. BOX 5003, JANESVILLE, WI 53547-5003

TWINPORTS VA ANTICOAGULATION CLINIC
Phone: (715)392-9711
3520 TOWER AVENUE, SUPERIOR, WI 54880

With your medical history, a certified anticoagulation clinic may be your best bet. One of valvereplacement.com's members, Al Lodwick, is a pharmacist and a CACP who runs a clinic at a Pueblo CO hospital.

I can empathize with you re your autoimmune problems. My youngest sister was diagnosed with lupus in 1998 at age 42. She had had problems for a number of years. Being an RN, she suspected SLE & pressured doctors into doing the ANA test. In the last 12-18 months, Nancy has also been diagnosed with rheumatoid arthritis.

Sounds like you may want to build a team for your health care -- a rheumatologist, an experienced anticoagulation care provider (not merely one who looks at INR test results and pulls numbers from out of thin air on adjusting dosages), GP/PCP & cardiologist.

Karlynn mentioned Al Lodwick's website, www.warfarinfo.com. I purchased one of his spiral-bound books about warfarin & a couple of his warfarin dosing charts. I highly recommend the dosing chart. Even if you never manage your own warfarin dosing, you can consult it to determine if your doctor is in the ballpark.

Good luck with your health. My sister has done fairly well, despite bumps in the road from time to time. She does burn the candle at both ends; right now, she's readying her lakeside home for an onslaught of family this weekend. We'll all help out to help her keep her sanity.

 

[attissy]

Hi again, I first want to say you are all the best. You have given me great advice and a game plan. Thanks so very much.

To Catwoman: Thanks for the wonderful listing of Coumadin clinics. The St. Mary's clinic is not too far from where I live, so that will be the first one I check out. Sorry to hear about your sister's problems, but it sounds like she is taking control of her own healthcare, which is a great example of what I need to do as well.

To Twinmaker: Thanks for sharing your story. It made me feel much less alone with this INR problem. I am currently in the process of setting up home testing, which will help greatly as I am still being checked weekly. I had checked with a hematologist's nurse, and she told me hematologist's deal with blood diseases and disorders, not medication interaction. I am glad you found someone to help you help normalize your levels.

To Al: Thanks so much for your advice. I have already signed up on Tina's site and am hoping to take some time today to search for information. I also appreciate the info regarding lupus. I have called my rheumatologist today to try and get back in to see him. I am so glad you are a member of this site!!


To Granbonny: I am taking 15 mg Monday, Wednesday, Friday, and 12 mg Tuesday, Thursday, Saturday, and Sunday. I am getting checked every week, on Tuesdays. Before this INR level, I did hit my high of 2.6, so we waited two weeks before I got checked again, but now we are back to once a week. I also am in the process of getting approved for home testing, which should help!

To Karlynn: Thanks again for your advice. Hopefully, with the right management, I can get to the bottom of this soon. I just wish I knew why it fluctuates so much!

I will keep you all posted as I get more answers...hopefully soon.

 

[901]

Why does the Dr. have you alternate doses?
I would think you would have more repeatable results if you took 13mg or 14 mg every day instead of up-and-down every other day.

 

[Ross]

Why does the Dr. have you alternate doses?
I would think you would have more repeatable results if you took 13mg or 14 mg every day instead of up-and-down every other day.

The end result is likely the same however, by doing what she's doing, it's the most evenly spaced way of taking it. She won't be too high or too low, just a nice steady pace.

 

[attissy]

Hi again,
I just wanted to let you all know that my INR this week was 2.3.....much better than last week! My cardiologist has decided to keep me on the same dose (15 mg Mon, Wed, and Friday; 12 mg all other days). I will let you know what my next level is. My sister mentioned that maybe every time their raise my Coumadin dose, my liver metabolizes "better"? Is this how that works? Just wondering.

Thanks again for all your help.

Tiff

 

[Guest]

No, that is not how it works. Most likely what is happening is that you are feeling better, therefore getting more exercise and eating better. As the blood pumps through your liver more times, the warfarin is metabolized faster. The better food intake results in more vitamin K intake needing more warfarin to overcome it.

This has probably happened to most of the members on this site.

 

[Guest]

I just wanted to let you all know that my INR this week was 2.3.....much better than last week! My cardiologist has decided to keep me on the same dose (15 mg Mon, Wed, and Friday; 12 mg all other days).

Sounds like it _might_ be working itself out. BUT, don't count on it . I remember when I was on Coumadin ... it took a bit of time to get the dosage synchronized for the ultimate (i.e. most-desired) INR levels....

Good luck!



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"You really think you're in control?" ... Gnarls Barkley ... 'Crazy'

 

[attissy]

Thanks again for all the info. I had a feeling my sister was wrong, but the way my INRs have turned out, it sounded like it could be possible. I guess it will be a wait-and-see process. I cannot get into my rheumatologist until October, so maybe (and I stress maybe), my levels will be better by then. I will keep you posted.

Thanks and Happy Labor Day weekend!
Tiff

 

[Karlynn]

Exercise and physical activity is a big contributor. I must confess that I have been a VERY bad girl this summer. I have not made it to Curves to work out since the middle of May! My dosage has gone down from 10/day to 9/day and I know it's because I'm not exercising regularly. I will be starting up again - honest! And I'm sure I'll need to raise it again.

 

[attissy]

I just wanted to send a little update. This week my INR was 3.2. The nurse actually yelled "Yahoo" when she called to tell me! I am staying on the same dose and go back in two weeks for my next level. Yahoo is right!

Thanks again for all your help and wisdom. I will keep you posted.

P.S. As for the exercise Karlynn, I have been a bad girl too. I walk my dog every day, but that is about it. I am hoping to actually ride the new bike I bought myself........one of these days!

Tiff

 

[Guest]

The nurse actually yelled "Yahoo" when she called to tell me!

LOL! Isn't it wonderful when the nurses/health care professionals get excited about such great news, too? I've had a few nurses in my day that were just thrilling to be around because, no matter how small a victory, they always seemed to revell in it, too .

 

[RonP]

Coumadin Dosages

Coumadin Dosages

We welcome you to the site and I too have had the AV replaced and a pacemaker and defibrillator too. I'm taking 7.5 on Mon & Fri and 10.0 on all other days which equals 65 mg's a week. This gives you something to compare to since we both have two parts inserted. My last INR was 1.8 so I fight the battle to of keeping it in a good range. Good luck on keeping it adjusted and again welcome to this great group.