New here and is heparin OK long term?

Hi,

I am new here. I had bilateral pulmonary embolisms last year and that started a flurry of investigations as to the cause as there was no logical reason for me to have got them. Given my history of severe hemiplegic migraines and the fact I'd had 5 miscarriages between my two children it was pretty quickly narrowed down to APS and today it was confirmed by the haematologist.

For the last 6 months I have been on warfarin because of the PEs but my INR has been really unstable and fluctuating from 1.6 to 3.5 on a weekly basis even though I watch my Vit K intake like a hawk. The haemo said some people just don't metabolise warfarin very well and has put me on Clexane injections twice a day indefinitely.

I am actually quite pleased because when I was on Clexane briefly before getting to a therapeutic dose of Warfarin initially and then again when I had to stop the warfarin for surgery I felt so much better.

But I have heard that being on Clexane long term can cause osteoporosis and is not ideal. My GP wouldn't even entertain the idea when I asked her about it. Is anyone else on Clexane or another Low Weight Molecular Heparin instead of Warfarin?

And also do people find their symptoms improve when they are suitably decoagulated? It isn't just a placebo effect, it is real?

To complicate things I also have quite severe MS and am fairly disabled by that and there is no question of misdiagnosis in my case as I know there is many APS cases. My MRI is covered in blobs and lesions and I have too many classic MS symptoms and clinical signs. I am one of the oddities that collect auto-immune diseases as I also have IgA nephropathy, an auto-immune kidney disease as well.

Is there any one else here with MS as well as APS?

So that is two questions.... Is heparin OK long term and any other MSers with APS here? Sorry for being greedy! And thanks for running this site; I have a feeling it could be handy.

B

7 Replies

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  • Hi B

    Welcome to our forum.

    I'm on long term Fragmin, as I started to get a return of many of my symptoms after 10 years on Warfarin.

    Prof Hughes tells me that LMWHeparin does not cause osteoporosis but my GP ordered a bone density scan before I started and it is being repeated every 3 years.

    I find that I feel much better on Fragmin than on Warfarin.

    Best wishes.

    Dave x

  • Hello there. Im one of those that could not use warfarin too. Ive been on Fragmin a LMW heparin for 2 years now and have not looked back. Prof Hughes and Khamashta did a study to compare it to warfarin and there was no difference.

    I had a bone scan done 3 years ago and again recently, reassuringly there was no difference and I have been told by both Prof Hughes and Khamashta and my Endo that it does not cause any issues with bones.

    There are a few people on here who have both MS and APS who have found that both condition symptoms have improved when on Heparin - I hope thats the case for you. x

  • Hi hon,

    I'm another whose body is not tolerating the warfarin, clotting episodes still occurring because Inr so unstable. Have been having low dose of clexane as well as warfarin since my stroke in January and now have been changed to a higher clexane dose instead of warfarin, my gp has concerns regarding bone density! However and this is personal choice I believe if clexane can give me a better quality of life then I'm going for it! It's only early days for me on increased dose, but I've noticed lessening in brain fog and improvements in other symptoms.

    I hope it helps you hon!

    Gentle hugs love Sheena xxxx :-) :-) :-)

  • Hi B, I'm on Clexane because the Warfarin made me feel very poorly, and although I still have flares and struggle badly with brain fog during periods of fatigue, generally I am very much better on Clexane.

    Prof Khamashta reassured me that long term use is safe, and I feel that it's safer for me than Warfarin anyway, given that Warfarin caused me to have horrendous bleeding of the gums and loosened some of my teeth.

    The benefits are definitely genuine and not a placebo effect - for me, it was just a couple of weeks before I noticed an improvement and that has continued throughout the 18 months I have been taking it. I love that it needs no management, apart from the injection itself - celebrate with a large glass of cranberry juice and a salad with baby spinach leaves, followed by a plate of liver and onions with broccoli !!

    Stick with it, B, good luck and hope it works for you too. Larraine x

  • YAY for salad and baby spinach leaves. it will be so nice to be able to gorge on Vit K rich foods again!!!!!!!

    Thanks everyone for your replies. It is very reassuring to hear of so many doing so well on heparin. I really thought i was going bonkers to see such an improvement when I was on it for a couple of weeks.... Can't wait to see if I can sustain that improvement now :)

    B

  • I am on heparing too. Its made a huge improvement for me. I read a paper Dr K wrote about its safety long term and it was very reassuring. Dr Khamashta said that the women who switch to hearing during pregnancy say how much better they feel. He said that the fact that hearing works so much better than warfarin tells them something about the nature of the illness and they are looking into that. I think you can forget about the placebo idea and now trust that this is helping your body. I actually feel much safer on it was. I was prescribed Calcium supplements and I wonder if those are still considered necessary. Good luck and enjoy your summer salad s. Ann

  • I have been on Fragmin for just over a year, after having to come off Warfarin as I could not get a stable INR. My migraine has improved a lot! So has my memory problems and I have been told I will be prescribed Fragmin long term. I have just had a bone scan and unfortunately it showed osteopenia, first stage osteoporosis, but this is not due to use of Fragmin, I have a long list of medical problems and use several other medications that can give osteoporosis. I am now on Vitamin D and will have another bone scan in 2 years time to see if it improves. Even if I end up with osteoporosis and have to get treatment for that I still think it is a price worth paying for the peace of mind I now have using Fragmin instead of Warfarin. I have had numerous DVTs, also whilst on Warfarin, so being on Fragmin serves many purposes. I have gone down from 12-15 migraine attacks per month to 2-5, and those I have are much milder, a great improvement! I write a thorough migraine diary and have done so since 2006, I can assure you it has not been a placebo effect in my case :-)

    Take care, Helene.

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