Risk assessments

[Dartsnerd]

Well spoke to haematologist and 2nd set of bloods confirms antiphospholid syndrome. Sending me back to GP to be started on warfarin. He also spoke to rhematologist and appointment this Wednesday. It's happening very fast now. Work supportive and want to know what to put on risk assessments. Anyone any advice??? Thank you.

[GinaD]

For most of us, a diagnosis means 80-90% of the war is done! Congratulations! We all absorb vitamins and nutrients differently, and therefore, respond differently to warfarin. Warfarin slows absorption of Vitamin K which your body uses to make one of blood's clotting factors. K does other things as well, and eliminating it entirely from diet can result in bone thinning over time. So, modern medical advice is to adjust warfarin dose to accommodate K intake, but how well and quickly your body process that kale in your brussel sprouts or blood thinning agents in ginger will be specific to you.

Do a google search and download a chart from the internet showing vitamin K content of various foods. Leafy greens are the ones with K. ( Hint: green cabbage and broccoli are high in K, while red cabbage and cauliflower are not.)

So... what helped me was to keep a chart of foods, symptoms, activities and INR numbers. I was able to see that I could still eat leafy greens ( roughly same amount of K vegetables) over a 2day period, but what -- for me! --messed with my INR was sun exposure. ( Vitamin D can thin the blood.) And liver and onions? --- nah. Too much Vitamin K in one meal.

I have been on warfarin since 2001. The warfarin- inhibited part of the complex coagulation cascade is the end stage. I know that when I have my INR blood test and the nurse asks, " Do you need a band aid?" that I should say "Yes." Because even though it looks like the blood flow has stopped, it will ooze in a few seconds if I dont apply pressure. But that band aid does the trick. I do carry a card in my wallet that says I am on warfarin. I used to wear a medical ID around my neck, but I dont bother with it anymore. ( Its been 20 years! )

[KellyInTexas Administrator in reply to GinaD]

My doctor advises all patients on warfarin to wear a medical ID bracelet.

Most patients here will need to keep an INR of at least 3.0 - 4.0

It’s one thing to have an exterior cut that may or may not require a bandaid. You are also not on a higher end inr requirement range at the moment. May it always stay that way 🤞🏻.

My hematologist has said that if a trauma occurs, such as a minor auto accident for example- or bone fracture by accident, and bleeding happens into. “Critical space” in the body - a joint or organ- it cannot be compressed the way it can be if you have a cut on your skin.

Compression is the name of the game - and where is the bleeding- is it in a critical space? If it’s in a critical space it must be controlled with a reversal agent.

This is why it’s critical to have a medical alert bracelet.

I do not support not using a medical alert bracelet for this reason for any patient on any blood thinner, per my hematologist.

Please check with your prescribing physician regarding medical alert bracelets, etc, but mainly be aware of critical spaces and bleeding versus a cut that can be compressed and controlled.

Im certain ally not a doctor- and cannot advice in any way other than what I have learned a from my hematologists and therefore will not address this further, but will only say that your stance of noting that you do not bleed as much as normal with an external skin wound does not “necessarily” reflect internal bleeds to critical spaces when on warfarin. ( because I had mentioned the same thing as you and was corrected/ taught about it a bit more.)

Because you are such an avid hiker, I have to wonder if you might should put something on your person- I’m sure any jewelry would really annoy you and get in your way ... And I’m sure you are always with people who could say what you need- and I’m sure you have it in your cell phone...but for paramedics- they like easy and straight forward.

I have found Lauren’s Hope to be ok- I think other companies have silicone bands for sports... maybe Lauren’s Hope also does.

[GinaD in reply to KellyInTexas]

Yes, you're right. I should weat a medic alert ID. ( though I am now asymptomatic with INR as low as .1.5) I will see if I can find my old necklace, or get a new one.

[KellyInTexas Administrator in reply to GinaD]

I’d feel happier knowing you had one.

[MaryF Administrator in reply to KellyInTexas]

A good idea, really to have one, even though I am not on Warfarin, I am going to organise some sort of bracelet system for my family. MaryF

[Dartsnerd in reply to KellyInTexas]

My haematologist is signing me over to the gp's care now. He's going to touch base with me in 3 months to see how I'm getting on then he said won't need to be involved again. Is this normal???? Have to be honest don't really trust gp's as already prescribed something as recently as xmas that they shouldn't have due to my history. One of the younger doctors picked it up and said I shouldn't be taking it as an oral medication and changed it to a cream.

Thanks for the advise, I will have to look into the bracelets.

[Dartsnerd in reply to GinaD]

Thank you. This information will be really interesting to follow up. I was on warfarin many years ago and don't remember any of the advice. To be honest I don't think they told me this. I was given a card to carry round with protein information on it but when I recently gave it to my haematologist he said he had never heard of P1 in someone's blood. I've not been told any of the procedures and that my gp will deal with it all. I'm going back on warfarin as a preventative measure as I'm in 50's now.

A Medicare bracelet sounds like a good idea. Will the gp/nurse be able to tell me where to get one from.

I have a rheumatology appointment Wednesday and hopeful they will give me a lupus diagnoses but we will see. Not sure if that means any other meds or not.

Thank you so much for the info, I expect I will have more questions if you don't mind helping me find answers.

[Dartsnerd in reply to Dartsnerd]

Just as an after thought. When I go into see gp about being put on warfarin Is there anything that I really should ask. Consultant is sending him a letter so guessing he will just call me in. I've not been told anything about what will happen. Will they take blood, do a general health check overview, give me leaflets info on what I can and can't do???

Thank you for any information you can share.

[Kmbh]

I find self testing best as local warfarin clinic not used to testing APS people.

St Thomas's gave me the best advise. Stay on same dose of warfarin and see INR results accordingly. Over time you will see a pattern emerge for you. Different reaction to Vitamin K intake.

I personally react quickly to any foods high in vitamin k so avoid as much as possible, plus my diet varies a lot.

Hope you settle into taking warfarin. Bruising is a small side effect especially if you are accident prone.

I do have 2 teenage boys after clexane and warfarin.

[Dartsnerd in reply to Kmbh]

Thanks for the reply. Started warfarin yesterday but not seeing the nurse until Friday so as yet have had no literature or a card I'm meant to carry around???? Guess it will be sorted when I see them next Friday.