INR etc

[judes]

Hello all

Following yet another hospital with pneumonia my INR is bouncing all over the place from 1.2 to 9.3 all in the space of a week or two.

I’ve been put on long term antibiotics which the pharmacist assured me would not effect my INR, she got that wrong! It’s a tough call wether to stop the antibiotics and have a fairly stable INR but then the risk of another bout of pneumonia is high. My first thought is to stop them and let nature take its course.

Life is never simple!

My heart failure is getting worse and I’m so so tired now, I thought the tiredness I got from APS was bad enough but this is on another scale. Even when I was working stupid hours never felt this tired.

I shall carry on for as long as I can I still have places to go people to see and a fantastic holiday to look forward too.

As a by the by my son thinks I’m getting confused

if I am I know nothing😂

Keep warm keep well

Hugs to All

J

[Wittycjt]

If your confused its best not to know... get some rest and drink lots of fluids

[Wittycjt in reply to Wittycjt]

Not alcohol though🤔

[ndstephens49]

I have to take frequent antibiotics due to immune deficiency (CVID).

Best one that doesn’t affect INR so much is Levaquin. I get bronchitis/pneumonia frequently too.

You also need nebulizer at home or at least inhaler.

I have heart failure too and it is a bummer.

Nancy in West Virginia

[Dot69]

Love your sense of humour 😊 I’m sure you’ll come through this although it’s still a worry as to what’s best. My INR does silly things and I wonder why😏 even when I think I’m ok. Enjoy planning your holiday x

[Lure2]

Hi Judes,

Do you have a up-to-day and close contact with the team at St Thomas? Did an APS-Specialist diagnose you with Parkinson and your lung/hears-issues or who did ?

I also have lung/heart-issues but those has probably to do with APS and it is important that I keep my INR at around 4.0.

Who is in charge of your anticoagulation which is as you know very important for us with out too sticky blood? If you have got an INR of 1.2 you are not anticoagulated at all.

Best wishes from Kerstin in Stockholm

[judes in reply to Lure2]

Hi Kerstin

Parkinson’s was diagnosed by a neurologist tho it just confirmed what I already thought the symptoms were classic.

The heart lung problems are probably completely down to my smoking for years which is why I don’t want any radical treatment. My fault and don’t expect other people to pick up the pieces. Having seen my xrays, CT scan etc it’s a wonder I can breathe at all, but I’m too stubborn not too!! Inhalers etc don’t make any difference.

As for anticoagulant issues after moving I’m still not sure who is the responsible doctor it’s a nurse led clinic. To be fair to the nurses they are great and we have discussions about dosing. They are well aware that my INR needs to be higher than for a lot of people.

Despite living 200 or so miles from Tommies I still chat to them, I find the journey to London a bit much now.

Love and hugs

J

[Lure2 in reply to judes]

Hi Judes,

I wish you could selftest at home. There is a great possibility that the anticoagulation should help you with your issues (not the Parkinson if that is correct diagnosed) as you have got APS and have too sticky blood.

You can not blame everything on the smoking.

Have they done an Echochardiography with doppler on your lung/heart?I) f you could do a couple of doubletests (at a lab in the vein and with a CoaguChek testmachine in the finger) to find out it there is a big difference between the two tests. I do not know if you are Lupus Anticoagulant positive as then it can be some difference maybe.

What therapeutic level are you put on from your Specialist at St Thomas? A Doctor must be responsible for your anticoagulation. You could perhaps stay with your GP as I understand it is a long travel to London for you now. Ask him for help who is responsible for your bloodtests and INR.

Just to find out if the anticoagulation could help you and selftest.

Without anticoagulation we all get confused and forget everything.

I want you to go on holidays and be happy with friends. You have had a long journey now with your APS. You are a strong person.

I wish I could help you more but this is my suggestion from Sweden. Love to you!

[KellyInTexas Administrator]

Pinky and perky just texted. Those naughty kittens are stealing your phone!

They want us to persuade you to listen to Kerstin about getting an INR self testing machine. Kerstin is also a very good teacher about helping manage INR levels with green vegetables.

[judes]

I’m thinking of changing Perkys name to ‘get down’ he’s so so naughty. I was doing my sons dinner and found him sitting in the pasta bowl!

I do have a coagucheck which is fine til your INR goes over 8 then it’s a venous sample. My INR is set at 3-4.5 on the whole I’m well looked after and my GP is fantastic.

Keep warm keep well

J

[MaryF Administrator]

Hi, sorry you are currently feeling so unwell, perhaps after you have finished your antibiotics, your INR will settle down, the slightest thing seems to upset the INR, from infection, virus, supplements, and of course antibiotics alongside what you are eating. I hope you improve fast. MaryF

[Lure2]

That sounds great. I did not know you had a selftesting machine. Also that you are looked after so well.

Who is pinky and perky. I understand that Sweden is a bit far away as I am not playing in your division any longer.

[judes in reply to Lure2]

Pinky and perky are my two eight month old kittens! Named after a British tv series back in the sixties, they were two little pigs who went around in a car. There’s some clips on you tube