Ok Monday my IRN had shot up to 6.6 so was told to stop warfarin for 3 days then have repeat INR.I know my body is sensitive to any change but of course I had to do as doctor’s surgery said.I went back on Thursday and of course it had dropped to 1.5 I was told to go back in 3 days and take 6mg of warfarin.I said I want you to give me clexane or equivalent as that is on my notes.I couldn’t get clexane anywhere.I rang 10 chemists so went back to doctors who said it would come next day if left at chemist. It wasn’t as they couldn’t get it so doctors gave me prescription for Inhixa.same thing as no chemist had it so doctors told me to ring out of hours doctor or go to A+E . I had to do both.A+ E rang a chemist that was still open so I toddled off there with clexane prescription.it was closed.I rang this morning and they don’t have it and they had told A+E that.I have to have INR repeated on Monday but guess I will get same lies and no meds.I am composing a letter now to email to my gp.My hospital Rheumatologist does not work any of those hours when I have had to ring round for meds but I will try and contact him Monday.Has anyone else experienced this
Given the run around : Ok Monday my IRN... - Hughes Syndrome A...
Given the run around
No Chemist keep heparin in stock it always has to be ordered. When I have had to get it urgently because for whatever reason it has not come in time, I’ve had to take my prescription to A&E where they can give you some supplies in exchange for your script. The Dr at A&E knows they can do that so I’m not sure why they didn’t do it for you. Next time you need to insist as no pharmacy will hold a stock.
I tried chemists in other towns today n then decided to go back to A+E.They gave me prescription for Fragmin and I rang a chemist while in there and was successful.A+E also gave me one injection from a ward.different staff today
Sometimes they hold the odd injection but rarely will you get a box! The cost of them is why they won’t hold them in stock. Glad you were successful.
oh yes. I was told to stop for three days. I absolutely did not do what my hematologist - who was not a APS specialist- said.
I just dropped my dose of warfarin 50% by one day and increased my greens. Then returned to my normal mg of warfarin and continued the higher green veg. This advice was given to me by an APS specialist hematologist Frank Lu in Florida( who has since passed away.)
On the third day my inr by vein had landed perfectly.
Mind you I had spoken to my hemes nurse and told her ahead of time my plan, and reported in my values each day, as my inr by vein was drawn by my GP at my local hospital, not the clinic where my heme was an hour away .
The hematologist told me he would no longer see me as a patient and sent me a certified letter by mail that I had to sign for stating as such.
Oh dear
My INR is done at gp by a nurse.The computer then tells her what warfarin I need to take for next 2 weeks.I insist it’s 2 weeks as rest of patients there are totally different to me as they have AF and have theirs done monthly.I don’t have my own machine and told they don’t recognise it that way ,only theirs.I don’t mind as INR eventually gets back on track.now got some fragmin n repeat test Monday.been very stressful thou
I'm lucky to have a very local chemist who has seen me through the many ups and downs of APS. I'm now permanently on LMWH so they always order in my meds in advance and I always have repeat scripts so I don't run out or have extras if I go away. My hubby has type 2 diabetes and is on Ozempic so Chemist only sells to Pt's with this and not for anyone who wants it for weight loss. It helps they are open 7 days a week and even if I have a brain fade I know my meds will be there. 
oo that’s good.my local chemist is only open 5 days
I understand your frustration. I remember the days when I was on warfarin and Klexane as required. In the end, my consultant gave me a box of it to be kept at home so that when required I could take it immediately and would not have any issues obtaining it. Maybe this is something you could discuss with your health providers. I think that those of us with APS do react differently and are more sensitive to fluctuations in the medication and so need more monitoring than perhaps you are given currently. I hope you do sort this out as I say I remember only too well this. Frustration used to bring me to tears. Good luck and I hope you feel better.
Thankyou very much for your reply
I had pretty much the same. Advised/ordered to follow instructions from people not specialised in APS. My INR was all over the place so I have bought my own machine and self test and self medicate and I’m really stable now
Unfortunately I was told I can’t buy my own machine as their system is the one that issues dose.obviously they don’t think it’s reliable and like to be responsible for my health .they issue my meds and wouldn’t otherwise
I've had SLE and APS for around 30 years and been taking Warfarin for most of that time . Unstable INR is a real worry ; in the early days I just relied on the 3 month check at the doctors , which in my case proved to be unreliable , during this time I was hospitalised five times with Haematuria and Melaena and DVT , on three of these occasions my INR was greater than 10 . I decided to take my destiny into my own hands and purchased a Coaguchek test meter and fortunately my doctors practice agreed to supply the test strips , this was around 23 years ago and ; touching wood ; I've never had a bleed or a clot since.
Because my INR is quite volatile I test myself 3 or 4 times per week alongwith the 3 month surgery check , if there is any significant move in my INR , I reduce or increase the dose accordingly , if there is an alarming increase I take vitamin K and then monitor, sometimes every day , till I am back in the range . Without the facility of self testing I would not take Warfarin. I would try and get on the newer generation of drugs.
In summary from my experience, I would say that if you can afford to self test on a regular basis , then Warfarin is the drug ; it is a very old tried and tested drug and except for bruising and bleeding doesn't appear have any other long term side effects ; whereas the newer drugs ; which work in a different way ; have yet to be proven that they have no serious long term serious side effectseffects , there appears to be some anecdotal evidence around that some of these drugs need treating with caution,; the big pharma companies make far more money on some of the newer drugs than they ever can on Warfarin.
I am making these comments based on my experiences , not on any medical / pharmaceutical knowledge or training. Good luck on your voyage of discovery.
Regards
James
My rheumatologist says it’s only Warfarin.I have never had a blood clot but my condition is cerebral antiphospholipid syndrome.I do have a few other conditions too.The doctors will not recognise self testing.all my meds come from the gp surgery apart from an RA injection.I really wouldn’t jeopardise that.Its just the machine computer at surgery that decides dose etc.I don’t agree with time for next test and ask for two weekly.I have gone against the dose stoppage at times and argued 3 days is too much.When I got the result after three day stoppage I casually stated that the machine doesn’t know my body as it is sensitive to medication change
yes quite agree with your thoughts on testing frequency ; I feel that I would be dead by now if I relied on testing once in 3months. I also have advanced prostate cancer and I've turned down radiotherapy and am taking herbal concoctions instead some of which play havoc with my INR because of this I've ended up testing everyday. Good Luck
Sorry to hear that.do take care
If you can afford it and buy your own machine/strips the doctors cannot stop you self testing. Do it for you, as often as you like, they don't need to know. Real question is how do you use the results?
If you adjust dose and tell them you are, they can label you non-compliant - not sure I'd recommend that. On the other hand you can adjust what you eat/drink (they tell me I can eat what I want and they'll sort my dose out, I find I get these weird cravings for spinach curry only when my INR is high...).
However, I think the big advantage is that you know sooner when things are going out of range, with more data (I'm on two week testing but I test more often than that, for me) you can see the trends. If you're definitely heading out of range or suddenly reading out of range on your tests, you can go to the docs and ask for a "proper" test because you "don't feel right". Even as an official self-tester if I did 6.6 on coaguchek I'd have to go and get immediate venous anyway (they aren't accurate that high).
If my IRN goes to high or to low they monitor it once a week instead of the six weeks I normally go , they never tell me to go home and stay of it and then come back that is dangerous , they give me 2 daily with a couple of 3 until it adjusts itself
Poor you . Take care . If you drink grapefruit juice or ginger juice for blood-thinning , as I do , dilute with water , as can be harsh on stomach .
Thankyou for that.No I don’t drink either.Never heard of ginger juice 🥤
if you like ginger , it’s fairly common these days. Buy as juice . Immune boost . Blood thinner . Just a shot most days can help .
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