Anyone just on heparin/clexane instead or warfarin?

[tassie]

I've seen some say they switched back to heparin instead of warfarin. Just wondering how you know you are on the right dose?

Also do you bruise a lot where you inject?

When pregnant I was on clexane and my belly was black and blue where I injected.

[margaretjo]

Hi yes im on clexane because i couldnt get a stable INR on Warfrin. I was on 11mg and was still only 1.2 so they said I would have to take about 25mg to get to an inr of 3.5 which is where they wanted me to be and they judged this too dangerous because of bleeding.

I do bruise all the time and get small bumps sometimes which can be very sore. Ive been told i can inject into a bruise but not into the bumps. As far as im aware the dose depends on your weight so if you gain or lose weight you need to be reassesed

hope that helps

margaret

[tassie]

Thank you for replying margaretjo.

I am asking because I'm wondering if I would be better on clexane. Sometimes I feel great on the warfarin and other times dreadful and it stresses me on top of all my other stresses to not know at any point if I'm properly coagulated or not.

This is no way to live ...on a knife edge all the time ...and feeling crap most of the time.

[Manofmendip]

Hi Tassie

I was diagnosed with APS in 2002 and, after seeing Professor Hughes, we settled on me having a target INR of 4.0. This kept me reasonably well for 7 years, with a ceasation of my migraines and most other symptoms. However I did get a possible ischemic incident in my bowel and also a clot in my right hip that casused considerable pain and some transient bone damage, which has now healed.

Over the last 8 months I've had a return of many of my symptoms, incliding vaso basilar TIAs, and I saw Professor Hughes again in February this year. I keep a stock prophylactic dose of heparin 5,000IUs for use when my INR falls below 3.3 and also when I have a TIA. I have had heart by-pass surgery in 2007 and had to come off Warfarin and onto Fragmin for 3 weeks. The dose was assessed by Dr. Colin Tench, one of Prof Hughes's colleagues, based on my weight and I was told to take 15,000IU per day. I have also had to stop Warfarin and use this theraputic dose of Fragmin on other occasions too, for investigative surgery etc. I have always felt better on the Fragmin than on Warfarin and Prof Hughes has agreed that I can conduct a trial of stopping Warfarin and using fragmin instead. I am seeing my GP again on Thursday to set this up and we will take a view on the correct dose based on my current weight; my guess is that I will need either 15,000IU or 20,000IU per day.

I will post on here the results of my trial, including if Fragmin prevents my TIAs.

Best wishes.

Dave

[tassie in reply to Manofmendip]

Thanks Dave that would be great.

I wonder if Fragmin is better than Clexane or if it doesn't matter.

When you came off the warfarin for surgery how did that work? Did you go cold turkey and straight onto the fragmin? How did you time the fragmin for surgery so that you were still safely covered?

[louise78 in reply to tassie]

Hi I was told by dr that fragmin and clexane are essentially the same just brand name like coke and pepsi! I've used both and don't think there was a difference

[1818hst in reply to Manofmendip]

How are you now? I hope better?

[Manofmendip]

Hi Tassie

I don't think Fragmin or Clexane are any better than each other, from what i can find out. It seems that most hospitals around here use Clexane so i have to take my own Fragmin into hospital with me and get them to agree to me self injecting.

When I needed surgery I started talking the Fragmin a week before the date for the operation and at the same time stopped taking Warfarin, I felt no ill effects at all. I checked my INR on the day of surgery, using my CoaguChek meter and it was down to 1.0. I restarted Warfarin on the day after surgery and kept taking the Fragmin, as well, until my INR was back at my target level. Well, that was the theory anyway and I had agreed with the surgeon that I would do my own INR testing and dosing of Warfarin. What no one knew, including Roche, was that post by-pass surgery something happens to the blood, maybe due to the effect of the pump that is used to circulate the blood while my heart was stopped for the surgery, and that this makes the CoaguChek meter give false high readings for, in my case, three months post surgery. The false high readings fooled me into stopping the Fragmin way too soon and I had a TIA and had to restart the Fragmin and have my INR checked at the GPs, three times a week, until the lab results and the CoaguChek results came back into synchronisation.

I have used the same conversion from Warfarin to Fragmin and back again for other investigations and have had no difficulty at all. Start Fragmin and stop Warfarin the same day. Wait a week for INR to drop to 1.0. Start Warfarin on the day after the proceedure and continue the Fragmin until INR is back on target; I tend to use 15,000IU of Fragmin until my INR is about 3.5 then reduce the dose to 5,000IU until my INR is back at 4.0. It takes a week to 10 days to get the INR level back on target, usually.

I hope this helps.

Tell me what is happening to you and why you are considering Heparin instead of Warfarin.

Are you in the UK too? I live near Bath.

Best wishes.

Dave

[tassie in reply to Manofmendip]

I'm in Australia.

Just investigating the possibilities at the moment Dave.

Others have mentioned they feel more 'secure' on heparin than warfarin.

I can feel myself going up and down on the warfarin. When its right I feel good and then it will just change and I feel crap again and I'm sick of feeling crap and really stressed out from it all and even more stressed not knowing what my INR is at any time ant whether its adequate to stop a clot of a bleed.

I just can't see a future at the moment and that's not a good place to be in.

[Manofmendip in reply to tassie]

Hugs Tassie

Hang on in there.

I just wish I knew why I was fine on Warfarin for over 7 years and now not anymore, sigh.

Dave

[Storky]

When I stopped wafarin and switched to fragmin under Prof Hughes instructions I just did it in one day! My INR was very low anyway and I had started to inject so stopping the warfarin was easy! I take 10,000iu daily.

[jetjetjet]

i will have to go off warfarin and hyroxychoraquine- if i am able to have surgery i n my rite hip due to rapidly progressing a.v.n.- an operation that i shouldnt of even remotely be considering for at least two year s at most. the reason for the switch is problably , heparin much easier to control is my guess . after the surgery i dont know where it will take me ?wiil know in the next few days

[Hidden]

Jet- you should be able to continue the plaquenil? why do they want to take you off it?

I take just fragmin now whilst I am in the UK and prob when back in the US I will do Celaxane (enoxaparin) also known as Lovenox in the US.

I can't use Warfarin as my INR jumps from too low to way too high and the fear of a bleed is just way to stressful on me (whose gran died of a massive internal bleed, not on any anticoags).

Having a bit of trouble getting a doc to prescribe it for me here at the moment though and a bit worried.

[pumpkincake]

I will start Lovenox in two weeks and will stay on that indefinitely. Coumadin just isnt doing its job anymore. As Dave said earlier...I too dont know why it is not working anymore after all these years. I have taken Coumadin for 12 years.

I cant wait to start it....I am ready to see if these symptoms improve and am hoping for a turn for the better!

[grovet29]

Well I was on warafin for years and could never get my INR stabilized. I switched to lovenox when I became pregnant and stayed on it for 6 years and was blessed with 4 healthy boys. 6 months ago I switched over to warafin again and got a clot in my spleen and 5 weeks ago had a stroke from several clots going to my brain, I still have a clot in my neck that I am praying the lovenox will eventually dissolve. so far it has not dislodged. I have had 12 clots over the past 14 clots over the past 12 years, several in the lungs. I am very grateful to be able to live to write about this. I have never had an issue on lovenox. warafin on the other hand has been a nightmare for me. The only downfall the Dr's have told me is that long term lovenox use can cause severe osteoporosis, and the cost is astronomical! My insurance has covered 3 months at this time and then we will try to get it covered 3 months at a time I guess. GOD BLESS you all and may your day be full of joy and laughter even through these rough days!

[Pablosmum]

Hi

I take 120mg clexane daily after I clotted whilst therapeutic on warfarin. Like someone else mentioned I feel 'safer' on it. I dont have any side effects and it gives me much more freedom to live my life (dont have to watch what I drink, est etc).

My stomach is a mess with bruises and sometimes I have huge hematomas and other times I dont have any, dont know why but I guess its just one of those things.

My haemo keeps wanting me o go back to arfarin and 'see what happens'. Thats not going to happen, I have 3 young children and a life to live! x

[Angelpaws in reply to Pablosmum]

Hi everyone! First time poster here - only found this site this morning. Where have you been all my life?!

After my third DVT 3.5 years ago, I was put on Warfarin for 8 months. The constant INR checks, and avoiding spinach and cranberries as if they were alien invaders really got me down!

Around this time, I started to research what was going wrong with me because I had so many other symptoms and the DVT was an added extra that convinced me it was part of a bigger condition, and my research told me I had Hughes Syndrome.

Really fought to be referred for tests, and I was mortified when the tests for Hughes came back negative....the bloods were done when I was still taking Warfarin, which SURELY altered the results.

Anyway, all the time I was on Warfarin, I felt ill, unwell, not right, generally poorly, but I thought that was the DVT and my general ill health. The consultant told me that I did not have Hughes Syndrome and should come off the Warfarin. He recommended low molecular weight Heparin as a preventative measure, and this was put in a letter but no copy sent to me, and no follow up, so I was left untreated.

4 months after coming off Warfarin, I had a Saggital Sinus Thrombosis (a stroke from a clot in the brain). I am SOOOOOOOOOO lucky that I only have minor after effects, but it took until August last year to get retested for Hughes and get my diagnosis. They thought I was crazy to be celebrating such a diagnosis, but it proved I wasn't just mad, menopausal, fat, attention-seeking, time-wasting, delusional or all the other things people and medics would rather think of you, other than that I had a condition causing all the things I have wrong with me.

So, finally the point of my message! Last September I was put on Clexane. They tried to put me back on Warfarin, but I told them it made me feel unwell and I insisted on the self-injection of Clexane, and I am delighted. I feel so much better, and have far less Brain Fog, although I do still struggle with some words and cannot multi-task at all (e.g. make coffee for two and talk at the same time....not me!!) I'm bruised and get lumps sometimes, but I can eat what I like, including spinach and cranberries galore and have lost nearly 4 stone by healthy eating alone as I can't exercise at all.

I know some people are not happy with needles and would rather stick pins in themselves (!!!) but I'd say give it a try if your doctor will consider it. Thanks for reading....couldn't stop once I'd started...will keep it short in future!!

[louise78]

Hi I've never been on warfarin only ever injected heparine. From reading your comments it seems that the bruising I get is much less hassel than inr readings etc. Less stressful!

[tassie]

It's easier to pop a pill each day than be motivated to inject yourself daily.

I know when I was injecting whilst pregnant it really got me down after a while but knowing I had a better chance of a healthy baby at the end kept me going. Then I got gestational diabetes and was injecting insulin as well ...much finer needle though.

I guess there are pros and cons for both.

Warfarin: The constant checking of INR, fluctuations and never really knowing if you are on the right dose, plus the being limited with foods and medications that interact ...but easier to take and cheaper.

Heparin: daily injections, more bruising, possible osteoporosis risk long term, more expensive, but less interactions with food and medications and a more stable and reliable anti-coagulation.

[Lozzer]

Hi Tassie,

I'm in Sydney. Primary APS since 2000 and was on warfarin till about 18 months ago. Had some complications with hemolytic anemia then and varying INRs so hemo put me onto claxane.

i give myself two injections per day. Yep you do get a little sting now and again and you do get some light bruising on your stomach but most times the injection just slides in without feeling much at all and my bruising isnt that noticeable. just ask if you want info on how i inject.

The clexane seems to work better for me while other meds are juggled and relieves the need for frequent INR tests. From the little info I can find warfarin and clexane are equally effective in dealing with the disease and in fact a nurologist told me that only this week. My hemo advises that he has had patients on clexane for more than five years without issues.

Regarding cost, my hemo and GP request a six month supply approval from Canberra. 6 boxes of 10 syringes each costs me only about $35 all up which is a little more than warfarin but you dont have to go for the regular blood tests (and still get a needle)!

I am very interested to know if anyone is aware of long term issues relating to use of clexane as against warfarin but havent come across any yet. i believe that there is less bleeding with clexane, especially if also using aspirin.