cougacheck: Has anyone been refused a... - Atrial Fibrillati...

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cougacheck

Terjo profile image
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Has anyone been refused a prescription for the testing strips for their INR

testing machine ? This week I was told that I could not have my repeat prescription . Ive been given these for about eight years but have changed surgeries as our Dr retired and his surgery was closed.

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Terjo profile image
Terjo
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11 Replies

No Not at all, but I do believe many on this forum have had this difficulty.

I think the reason I have not had the problem is that in the (nearly) 10 years since I have self tested I have been registered with a surgery that fully supports patient self testing.

I also believe it depends on the policy of your local CCG (Clinical Commissioning Group).

My advice is to look around your area or do a phone around of your local large practices with an INR clinic and try and change surgeries, yes, I know - yet again.

I am afraid the age of the Dinasaur isn't yet over !

John

I’ve no personal experience, but I think carneuny has hit the nail on the head. From what we hear, it can be a postcode lottery. One thought, but think it through thoroughly before trying. Think about DOAC’s and if the change sounds an attractive alternative, talk to your surgery about changing perhaps saying if appropriate, that trips to the nearest INR clinic are not a viable alternative. It’s just a thought, you need to think it through carefully .......

Terjo profile image
Terjo in reply to

Thank you for your suggestion but I did not react very well when put on a pill for blood 'thinning '. ( other than warfarin) I'm nearly 88 and it seems very unfair to me that after the trouble I've had to keep in the right range the system should spoil

the good work that's been done for me . I will try to see a doctor and find out if they can help me. seeing a doctor is very difficult now as one cannot book an appointment unless it's on the same day. I haven't discussed my treatment with a doctor yet and have no consultant as the one I used to see at the hospital has retired. Sorry to be so moany but my husband is now in a wheelchair and I don't like to leave him for too long. best wishes Terjo

in reply to Terjo

I really feel for you, but don’t know what to else to suggest. Can you remember which anticoagulant you were on. Generally, they are well tolerated, but rivaroxaban can cause stomach problems if not taken with (substantially) food. Others are Apixaban, Edoxaban and Dabigatran. If you have access to an INR nurse at your surgery, make sure she is fully aware of your problems at home and ask her if she has any suggestions for overcoming them. Perhaps take a family member with you for a bit of moral support!

I hope you find a solution which works for you....

I have just remembered a conversation I had on this forum recently with an AF'er about Warfarin testing.

Type into your search engine Warfarin at Home. Then read it all carefully. Sods law that you won't live in any of these areas but if that's the case you have nothing to loose by clicking on the contact link in the text and reading through the material. If you have a problem let me know and I'll see how much more I can find out for you.

If you go down this track and think of it would you post on here the results of your experience.

I don't use this service here in Cornwall where I am and in any case I have a totally supportive GP practice so it doesn't apply, but, I would be interested in how things work out.

John

irene75359 profile image
irene75359

My doctor's practice won't prescribe testing strips as they run a clinic specifically for blood tests four days a week where it is very easy to get an appointment. However I am out of the UK a lot and rely on my Coaguchek so buy the testing strips myself.

I would have thought that given your circumstances and the fact that you care for your husband any reasonable doctor should take that into consideration. When you do see your new doctor please make s/he aware of your personal situation. Wishing you the best of luck.

Barb1 profile image
Barb1

I should contact your local CCG direct and see if that is now their policy or your GP's own practice. The CCG will tell you if they are still supporting self testing and if so which GP surgery is doing that.

Suebo2 profile image
Suebo2

It is NICE approved so they can’t refuse? However, they are expensive so if you use too many they should refuse you should not need to test often perhaps 20-30 a year?

Terjo profile image
Terjo in reply to Suebo2

Thank you all for your help, since this last post I have been contacted by the phlebotomist to record from me my INR reading . I explained the problem to her and she talked to a doctor and got an appointment for me on the 26th November so I'll let you know how things work out.

I have to take my INR sometimes twice a week as I had a very bad bleed about 8 years ago and have to be very precise with the reading.

best wishes Terjo.

Suebo2 profile image
Suebo2 in reply to Terjo

Dear Trejo, you must remember that it is NOT the warfarin that causes bleeds, it is your body. You only bleed if you have a ‘hole’ in the system. We have many many patients who have INRs which are high and require vitamin K to reduce INR, but only once in the last 10 years have I had to admit anyone to hospital.

If you are at risk of bleeding, then the cause needs to be addressed. Biweekly testing is not going to stop you having a bleed.

Terjo profile image
Terjo in reply to Suebo2

Thank you I do know how warfarin works and had this dangerous bleed before my doctor had a coaguChek machine and I was being tested once a week. The prescribed dose was given as three mgs a day. on the fourth day I began to feel ill but as some bug was going round at the time we thought I had got that. After two days I fainted and was taken to hospital and kept sedated and had vit K. The bleed was found in the artery leading to the liver and had filled up the lining of the liver. They used an ultra sound to find the bleed as in those days it would not have shown up on a CT scan.

I try to stay in range of 2.00 to 2.5 INR. I appreciate your concern,

thank you, Terry

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