Warfarin doesn't seem to be helping me much these past few weeks - at target and above I still had slurred speech and weakness on the right side and my mouth had dropped and I was dribbling from the right side of my mouth again - nice eh? Too much information
Today my INR was 1.9
I am not sure if I have done the right thing but I asked about heparin as I feel so awful. My GP agreed that a prophylactic dose should be given over the weekend and then a repeat INR done on Monday. I am really not sure about it but I feel dreadful - hope I have done the right thing - as you know as I don't have a proven clot they do wonder whether I should be on warfarin but St T's had suggested heparin if I went too low. But then they started questioning whether I should be on warfarin. My rheumy up here wants me to stay on it as up until now it has helped. My GP just said well it won't harm you and it will probably help you a lot
So I learnt how to inject and must do so again over the weekend.
My GP wants a new MRI done and is trying to get my hospital appt up here brought forward. Am back at St T's in May - am dreading this as my rheumy up here has not followed their advice re the warfarin and I'm worried I shall be the scapegoat
If anyone has any advice for a newbie heparin injector I'd be grateful.
Lynn.x.
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stillwaiting
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I hope you start to feel the benefit from using heparin soon.....cant have been an easy decision...
I myself only went onto the injections when had gall bladder removal operation done...so cant comment on the use of it full time, hopefully someone will get to you shortly with some advice / support on that one
Thanks Dave & Suzy - am only on this bridging dose until the warfarin kicks back in (hopefully!) Can not believe I was brave enough to inject - am a cowardy custard - lol. But it's amazing what you'll do when you feel poorly
Hope you feel better soon. Sound like your having a hard time.
My tips for LMWH injections are the following:
* I like to remind myself that every shot is potentially saving my life.
*I was injecting at night with no symptom relief. I took Dave's advice and switched to the morning, which has really helped alleviate my symptoms.
*When I first started taking celexane (LMWH). I'd Get comfortable lying down. Focus on something usually the TV. Count to 3 and go for it. Sometimes if even get my husband to sit by me.
*Now I jump out of bed, inject, gently tickle the spot with my fingers still the sting goes away then dressed and off to work.
I have to opposite problem I'm scared to take warfarin. I took LMWH for a six months with my DVT, then 10 1/2 months when pregnant and after delivery and I'm now one month into a two month trial. My haematologist wants me to swap to warfarin due to osteoporosis risk. I'd love a link to the warfarin v's Heparin paper if anyone can find it!
I am very apprehensive, I'd much prefer a injection to a blood test. it's not the needles, it's the diet restrictions, fiddling with dose etc. I was on warfarin for 6 months with no major issues was always stable needing around 7mg for an INR of 2.5. This time the doctor is aiming for 2.5-3.5. Im aiming for 3-4, so again I'll have to do a literature review and print off all the papers just to get a treatment I'm happy with.
I know that warfarin is useful and proven for some. It's just I see warfarin as an old persons medication or a poison for rats. mentally it makes me think I'm unwell. I'm scared changing may bring my symptoms back seeing as the LMWH is helping.
If more papers on APS and LMWH had been published and not the majority of them being APS and warfarin, standard treatment for APS may be different.
Perhaps one day I'll be ok with having APS and stop wondering about the what if's. I I'm lucky I have a diagnosis and treatment which appears to be working. Till then I'll take it one day at a time.
Ditto to several comments above. LMWH is much more effective for me than warfarin. And it isn't felt to cause osteoporosis--unlike the older unfractionated heparin. The minimal trouble of the injections is a very small price to pay to avoid the very troublesome symptoms. Stillwaiting--I hope it will provide relief for your symptoms. if not, consider discussing with your doctor the addition of an anti-platelet agent, such as low dose aspirin.
Hi. I was using Warfarin for ten years and have been on two doses of 80mg Clexane daily for nearly three years.
Yes its inconvenient and occasionally stings just a little but there are no issues with diet or the other things that can interact with Warfarin and no need for blood tests to determine INR.
My tips for injecting are to angle the needle into your abdominal fat at about 45 deg and also to just press and hold lightly with your finger tip on the site of the injection afterwards for 10-20 secs. This seems to minimise bruising.
I hope you are already feeling better and safer on heparin . I agree with all those who have said they are on it and benefiting. If your INR is low it makes sense to make sure you are protected with heparin. The St. Thomas people are the experts in this and you can ask them to contact your Rheumy with a view to changing his attitude. Good luck with it all Ann
Sorry Ann not sure I explained this very well - brain fog big time - lol! St T's do not want me on anti coagulation but my rheumotologist does. And so do I. Warfarin was helping but now seems erratic. . After just one clexane dose I feel much better.
Prof Hughes told me that Fragmin and other LMWH do not cause osteoporosis. I read a paper somewhere that they can actually protect against osteoporosis.
Nevertheless, I had a bone density scan before starting on Fragmin and this will be repeated in a years time, 3 years from starting Fragmin.
Apart from making me feel much better than Warfarin ever did I agree about the diet and lack of fiddling with dose and food issues that Warfarin users have compared to Fragmin users.
Thank you Dave. I am probably mixing things up because I have Fragmin 5000 IE to inject as an "anti-dot" for warfarin when I am too low . I have never used it though. Kerstin
Hi all - thanks for the replies. I injected for the second time today and I was fine. My husband says my speech is much better and I do seem less muddled. My sight is clearer too. I can use my right hand properly too. One last dose tomorrow and then an INR test Monday as I have had to continue with the warfarin.
To be honest I think I prefer the clexane - much better symptom control and to be able to eat as much vit k greens as I like would be fab.
Dreading St T's as they want me on no anticoag as I do not have a proven clot - "just" the antibodies and late miscarriages.
Good luck on monday. Hope you can selftest if you must be on warfarin. I do and it is ok with me and I can eat K-vit vegetables which I want to. The most important thing for me is that I do not clot.
I am a bit confused. Have you seen specialists in Hughes at St Thomas? .It is usually the other way round that they are keen to control your symptoms and more likely to want you on anti coagulation . I have no proven clots s and no positive blood test.
Are you seeing the people at the Lupus unit at St T's, or some other department. When we talk of St T's we mean the clinic in the Louise Coote Lupus Unit.
Hi, Have you been diagnosed APS? You talk of so many doctors with different opinions regarding you anticoagulation. If you have APS it is vital that you do not have any more dvt or TIAs. That should be in their interest also.
In Sweden we can have a selftesting machine for free and even the sticks. That makes our life with warfarin much easier. I am sorry you do not have that choice in England.
1.) Diagnose APS or symtoms of having APS. 2.) Getting an APS-doctor in charge.
You have to look for a doctor who knows APS and understands what you are talking of.
You shall not have to be afraid of medication. IF they put you on warfarin you must see to it that you are OFTEN lab-tested. If it is more comfortable with Heparin demand your right to decide about your own body.
I wish yoy good luck tomorrow!! Kerstin in Stockholm
Thanks Kirstin. I do have an APS diagnosis. After 3 days Clexane and warfarin my INR had dropped further to 1.7 So I have another three days of clexane jabs and the warfarin has been increased.
Hi, Sorry you have so much trouble with your INR-range. I take 5 mg of warfarin every day and only change 1/4 - 1/2 tablet if my INR is too low, but that is me and we are all different. Hope anyway that someone else can answer you on this as i have no knowledge of taking Clexane. Hope the doctors help you so you can be stabil and feel much better soon.
Hi Everyone i just wanted to contribute tentatively to this debate and once more raise the issue that not all of us suit warfarin and that for the last 18 months since being put on warfarin for life, I have battled to explain my horrendous symptoms with my practice nurse,GP and haemotologist. Finally after all this time I was referred at my request to an APS pecialist who listened carefully all to my symptoms and then very calmy said right you do not have to be on warfarin and here are the alternatives !!!!! He has done some more blood tests and said he will see me again in one month for my decision. Absolute music to my ears, finally someone listening and acknowledging that I have never ever felt as ill as I have done since starting warfarin and that at a relatively young age, working full time, I do not want to feel self concious about hair loss, papery skin, bruising, including on my face,lumps in my arms and legs and persistent eye problems (and these are just this visible signs and changes to my body) So I do strongly believe that we are all individual and some of us will have a hypersensitivity to medication and plus like many others I am a vegetarian and I am fed up of looking at what I can and can't eat. So good luck to others in their quest to find the right medication and don't be fobbed off by medics who know nothing about APS x
I repeat that I think your are not feeling good because you have APS and also that you test at the coagulation clinic too seldom and have thus no knowledge what in fact your INR level is from time to time. Before selftesting I did labtest at least every week. You do it every 3 week up to every month. Too seldom!
An INR of 2.5 as a target is also very low for some of us. I need an INR of 3.5 And I also can hear that you do not like warfarin.
Of course there are other possibilites and you are free to chose what suits you best if your APS-doctor agrees to that. I quite understand you happiness to get rid of the warfarin and I am glad if that makes you feel better . We are all different in so many ways as a person.
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Starting Plaquenil for the first time
Heparin (CLexane) injections
INRS up and down, weekly tests since April!
Is it worth me asking for a trial of heparin?
