I have APS plus reduced activated protein C resistance (Leiden v), target INR level 3.5 but very unstable
Just seen consultant haematologist su... - Hughes Syndrome A...
Just seen consultant haematologist suggests changing from warfarin to low molecular heparin . Anybody care to share their experiences?
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BlueJT
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Hello
I changed from Warfarin to Fragmin (LMWH) in April last year and have never looked back. I feel better, reduced symptoms and no worrying about INR or what foods to avoid.
Dave
Thank you Dave, any problems with the injections? worried I might look like a pin cushion! Julie
Hi there, welcome, you are in good hands with Dave's advice, and others will follow, join the pin cushion club etc. Mary F x
Thank you your thoughts and advice are most welcome. Although I have had injections after DVTS until today I hadn't realised it could be used long term. I have had a PE whilst on warfarin hence the INR 3.5. All words of wisdom welcome! Julie
I am an aspirin and LDN lady... so not the right person for personal experience of Warfarin, although when pregnant I injected Fragmin. I expect APsnotFab will come on later, and give more detail along with others who have had a wealth of experience with long term injecting. MaryF x
Hi Blue JT
I have been injecting tinzaparin since April, due to warfarin intolerance. As manofmendip says it has the advantages of no INR testing or food restrictions.
Occasionally I go through stages where I bruise more easily. But they are still only 2-3 mm circles, so nothing more unsightly than freckles or moles. I'm too old for crop tops these days so can handle that.
The drug leaflet recommends injection at "tea time." As I am currently having T10a levels checked, I am injecting when I get up. I asked haem nurse if ok to stick with this, as I find I'm less likely to forget. She said that was fine & saves altering times again for further testing.
I'd be interested to hear how often others on here have T10a levels tested once things are stable.
All the best with it. X
crop top, crop top???? ermmmm heard of it somewhere in my distant past, something to do with horses??
Hi Julie
I inject at 7.30 am every day, so that I get the maximum benefit during the waking hours.
Most times I get very little bruising but just occasionally I hit a vein and then the bruise can be quite large. However, compared with the fuss of Warfarin, INR tests, food restrictions etc and the fact that, like you, I had a major clot while on Warfarin - mine was in my right hip - I would take the injections and the bit of bruising any day.
Best wishes.
Dave xx
Hi everybody,
I am on heprin and warfrin as had to stop the warfrin for nearly a week due to a proceedure. My INR has been 1.1 since Monday. It was 1.1 today aswell . I have to stay on heprin and warfrin until my INR picks up. I see anticoagulant nurse next week. She is going to set my warfrin higher so that I can eat those vegetable ive been missing so much. Im get the hang of heprin so things might change in future. It sometimes hurts if I get it wrong but only last a few mins. And I have to really try hard not to rub it afterward as the bruise is worse. I feel proud ive not got to many bruise as only been injecting heprin for a week. Hope you get on ok.
Andrea
Well thanks for a brilliant response. In light of your advice I have decided to give it a go, I thank you for giving your time to respond as I was a little shell shocked today.... best wishes to all & be well xx
Hi Julie
I hope you get on well with Fragmin.
Keep in touch and let us know how it goes.
Dave xx
Will do Dave & thank you for the boost you have given to my confidence! xx very much appreciated
You are most welcome and I hope it works for you and keeps you feeling well, as it does for me.
Dave xx
Hi APsnotfab
I was interested by your mention of being allergic to warfarin. I also found I could not tolerate this drug, along with many others.
Do you mind me asking what were your symptoms with warfarin, & have you had similar experience with other drugs?
I would appreciate some advice. I transferred to St.Thos under the NHS, after diagnosis at London Bridge.
Whilst a patient under London Bridge Consultant, my INR range was between 3-4. After transferring, my
range has been reduced to 2-3, but with the addition of plaquenil (200 mgs daily). However since September
my symptoms have been troublesome, and yesterday, feeling very grim, with bad headaches and the feeling
of numb spasms in by brain, accompanied by weakness in my wrist, and lower legs, I had my INR checked
to find it was 2.1. I phoned the anti-coagulant nurse, who cheerfully said I was spot on, and to continue on the
same dose. I said that I was unhappy with her decision, and that I needed to increase the dose, and improve
the INR. She agreed, and said for me to increase for the next three weeks, and then check again. I know from
experience that about ten days is all I can go on an increased dose, without the range becoming far too high.
The decision was far too quick to have been entered into any computor system.
What is the criteria for changing over to Heparin (Fragmin), and if I were to change Consultants, is it better
to see a Haemotologist rather than return to my previous Rheumatologist?
Hi Zamalek, I am no expert but have been on warfarin for a long time, over the last year my INR has been erratic to say the least. My GP recommended that my target range be reduced to 2.5 to stabilise matters. Like you I was unhappy with the decision and asked for a referral to a haematologist consultant ( I have regular consultations with my rheumatologist but this is not their area of expertise). At the end of the day we are all individuals and you need advice from an appropriate health professional, which means in addition to, rather than instead of your current team. Hope this helps & best wishes, Julie
Been taking Fragmin for a month, self administered in the abdomen as a precaution post surgery.
Alternate either side. tiny needle no more than 12mm but beware, don't rub, it will sting!
Otherwise no problems
