Me Venting......grrrrrr

[Freddie]

Vent #1:
Okay, so my INR has been all over the place for the past 4 months, I just can't seem to get it stable - every 2 weeks I'm adjusting. grrrrrr Was at 42mg/wk, then 40mg/wk now 41mg/wk (I test this week)

Vent #2:
Just picked up my refills - OMG the pharmacy has changed brands on me. For the past 3 years I've been on the generic brand Apo-Warfarin, now changed to the generic Mylan-Warfarin. Will this brand change make matters worse with my INR? grrrrrr

Vent #3:
I also found out that I can no longer phone the lab for my INR results - I've been doing that for the past 2 1/2 years. I now have to wait for the doctors office to call me via nurse or intern to give me the results and dosage change if need be. grrrrrrrrr

Frankly, I'm so peee'd off with all of this I've come to the point of 'what will be will be'. But it's all so frustrating, and I'm so scared about the change of the generic brand of warfarin......should I be?

Thanks for reading. Have any positive thoughts/energy to pass on?

 

[Mileena46]

I think I have read before that the brand name isn't important Freddie, however I know there are folks here that have more knowledge than me and will be along in no time. I, also am fed up with things and worrying about my INR constantly. It is either too low or too high and on the rare occasion that its in range, it doesn't stay there....even if I stick to the same dose and the same diet! I wish I were one of those people who could get in range and stay there for months. Last couple of months I have done fine with my dose and now today (out of the blue) its way too high again....on the same dose!! I just don't get it. I think it's over my head and like you I am ready to say...what will be will be!!! I guess we can't all go in a car accident or in our sleep!

Mileena

 

[catwoman]

Brand name, whether it's the TM -- Coumadin -- or any of the generics, hasn't fazed me one iota.

How frequently do both of you test?

 

[Ross]

I'm thinking you both have adjustment problems or are knee jerk adjusting and it's messing you all up.

 

[njean]

Grrrr right back at you lady! I hear your frustration! I couldn't tell you whether a different brand names will have an affect on your already erratic INR Freddie but I sure wish you luck in getting your INR in range.

I have always taken the brand name, coumadin, and my cardios have always been very good about specifying that when they write my Rx. I have to pay a bit more for it but I feel better about taking the brand name. But then, that's just me.

Good luck to you --- I hope your issue gets resolved soon!

 

[Philip B]

All Over the Place

All Over the Place

Opinions will vary, but I find it much easier to do adjustments by testing weekly. Of course, home testing makes this much more practical than relying on a lab for testing.

-Philip

 

[tobagotwo]

I can't seem to find out much about Mylan. They have a Canadian presence and even a packaging operation, but their products aren't manufactured in Canada, and they don't disclose where they are made in any of the websites I could find. In my book, that means India or China. Doesn't mean bad, just means yellow flag.

Best wishes,

 

[Bina]

Freddie, ask for the name brand Coumadin (it is not expensive) and see how it goes.
So long as your INR is between 2.5 and 4.5 don't freak out.

 

[Freddie]

I can't seem to find out much about Mylan. They have a Canadian presence and even a packaging operation, but their products aren't manufactured in Canada, and they don't disclose where they are made in any of the websites I could find. In my book, that means India or China. Doesn't mean bad, just means yellow flag.

Best wishes,

Mylan
Pharmaceuticals Inc.
781 Chestnut Ridge Rd.
Morgantown, WV 26505
1-800-RX-MYLAN www.mylan.com

So what you are saying is that your yellow flag is a warning, yet what I found seems to indicate that it's manufactured in the USA

 

[Freddie]

I'm thinking you both have adjustment problems or are knee jerk adjusting and it's messing you all up.

Ross, I've been adjusting my own dosage and my doctor has been agreeing with me, which is a bonus.
A while ago Al posted a dosage guide line which I've been following, which looked like this:

5.5.5.5.5.5.5. = 35mg/wk
5.5.5.6.5.5.5. = 36
5.6.5.5.5.6.5. = 37
5.6.5.6.5.6.5. = 38
6.5.6.5.6.5.6. = 39
6.5.6.6.6.5.6. = 40
6.6.6.5.6.6.6. = 41
6.6.6.6.6.6.6. = 42

I've been adjusting from 38mg/wk to 42mg/wk since Jan 21. Testing every week to every 2 weeks.
On Jan 21 my INR was 2.2 after being on 40mg/wk, I then increased to 42mg/wk which gave the following readings:
Jan 28 - 3.0 - stayed on 42mg/wk
Feb 4 - 3.5 - stayed on 42mg/wk
Feb 19 - 3.8 - stayed with 42mg/wk
March 4 - 3.5 - stayed with 42mg/wk
March 18 - 4.0 decreased to 40mg/wk ****I know, I know nothing wrong with a 4.0 but for argument sake remember my doctor
March 25 - 2.2 increased to 41mg/wk and I'll be testing this Thursday.

 

[Ross]

Sounds to me like 42mg is your dose. That 4.0 on the 18th and 2.2 on the 25th cannot be right. 2mg is not going to cause a drop like that.

Hon you've got to do what's right for YOU. Your doctor is.......well, I'm glad it isn't mine.

 

[lance]

Hi Freddie,
Vent #1--Your sweet spot is 40-42 mgs per week. That's not much of a change and I swear warfarin has a life of its own.
Vent #2--Ask pharmacist where Mylan is manufactured. A change in brand shouldn't be a concern unless it's made in China.
Vent #3--Well, you need a POC unit like most of us have. Until then there's no solution unfortunately.

We have to comparison test with a lab draw every 6 months. The last time I did this it took the lab 3 days to contact my PCP. What a waste of time and effort not to mention my vein. Phooey!

 

[Bina]

There really is nothing wrong with your INR readings Freddie.
If taking the Mylan is going to make you nervous (and it would for me), then don't take it......get Coumadin.
You have a home monitor----but don't check more often than once a week unless something really goes wrong.

 

[EireCara]

Dear Freddie, I feel your frustration and Im sorry I cant help you out with warfarin problem but I can and am sending you lots of positive thoughts and prayers. (((((HUGS))))) x

 

[Freddie]

Sounds to me like 42mg is your dose. That 4.0 on the 18th and 2.2 on the 25th cannot be right. 2mg is not going to cause a drop like that.

Hon you've got to do what's right for YOU. Your doctor is.......well, I'm glad it isn't mine.

I didn't think 2mg would make a big difference either, but my monitor readings were 4.2 on the 18th and 2.6 on the 25th, so the lab readings aren't that far off.


Could someone please explain the problem with meds coming from China. I would have thought that all meds are regulated no matter where they come from.

 

[catwoman]

I didn't think 2mg would make a big difference either, but my monitor readings were 4.2 on the 18th and 2.6 on the 25th, so the lab readings aren't that far off.


Could someone please explain the problem with meds coming from China. I would have thought that all meds are regulated no matter where they come from.

http://www.fda.gov/Drugs/DevelopmentApprovalProcess/Manufacturing/ucm169105.htm

 

[cherbam]

Hi Freddie,

Long time since I've been on the forum. Hope your INR get back on track. Mine is also crazy. Going to the lab every three days!!!

 

[fischje]

Hi I am new to this site but I understand your frustration with your INR. I have only been on coumadin( warfarin) for eight weeks and the first five was a roller coaster ride. Went from 1.8 to 4.4 in a week. My range is 3-3.5. I had to have lovenox shots three separate times. I had my aortic and mitral valve replaced on Feb 8, 2010 at Strong Memorial. I went mechanical due to the fact I had bovine valves ( aortic and mitral) done in 2003. I am a 34 year old woman so being on coumadin is hard ( I have no children and getting married in September) But my surgery had to be done. I had many symptoms ( extreme shortness of breathe, dizziness, fluid in the lungs). My bovine valves lasted a little less than 7 yrs. My surgeon ( Dr. Peter Knight ) at Strong was awesome and was able to give me much bigger valves this time so he said I should be good for another 50 yrs . My AV is 25mm and MV is 27mm . My surgery was very challenging -- he ended up doing a Dacron enlargement of the mitral and aortic valve ( my aortic root was quite small due to the coarctation of the aorta I had at birth) . Also had a false aneurysm of ascending aorta.
As for INR I have to my cardiologist office twice a week to get tested. I can't wait to be stable enough to go more than a few days w/o a test. My last few INRs have been in range so hopefully that will keep on happening

 

[Ross]

Hi I am new to this site but I understand your frustration with your INR. I have only been on coumadin( warfarin) for eight weeks and the first five was a roller coaster ride. Went from 1.8 to 4.4 in a week. My range is 3-3.5. I had to have lovenox shots three separate times. I had my aortic and mitral valve replaced on Feb 8, 2010 at Strong Memorial. I went mechanical due to the fact I had bovine valves ( aortic and mitral) done in 2003. I am a 34 year old woman so being on coumadin is hard ( I have no children and getting married in September) But my surgery had to be done. I had many symptoms ( extreme shortness of breathe, dizziness, fluid in the lungs). My bovine valves lasted a little less than 7 yrs. My surgeon ( Dr. Peter Knight ) at Strong was awesome and was able to give me much bigger valves this time so he said I should be good for another 50 yrs . My AV is 25mm and MV is 27mm . My surgery was very challenging -- he ended up doing a Dacron enlargement of the mitral and aortic valve ( my aortic root was quite small due to the coarctation of the aorta I had at birth) . Also had a false aneurysm of ascending aorta.
As for INR I have to my cardiologist office twice a week to get tested. I can't wait to be stable enough to go more than a few days w/o a test. My last few INRs have been in range so hopefully that will keep on happening

If you could provide us with your weekly dose amount, whether or not they are changing the dose every time they test you, how you eat and excerise, other meds you take, I'll bet we can end the merry go round for you.

First thing I see wrong is a range of 3 to 3.5. It's next to impossible to maintain a tight window like that. In your case, anything between 3 and 4 should be satisfactory.

 

[fischje]

Right now my dose is 7mg on Monday, Wed, and Friday.. 5mg every other... This is how it has been for the last two weeks. Before that they changed it from week to week. As for diet I am trying my best to be consitent w/ my Vitamin K .. I have actually been eating less since my surgery due to my INR has been so low at times. Right now I am in cardiac rehab twice a week and walking the other days. Right now I am just on Toprol XL and a baby aspirin