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Long term use of clexane injection
Started by Kellie Green
Posted: May 18, 2008 at 18:49
Hi everyone
I have had 2 dvt's and a few years ago multiple clots in both lungs.
Warfarin was not agreeing with me and made me feel really ill - they were putting my dose higher and higher and my inr was not coming down.
I have now been on clexane for nearly 3 years with a 40mg injection daily - I just wondered if anyone else out there is on clexane injections long term as my haematologist does not know of anyone else in the same situation as me.
I am also on a high dose of calcium as one of the possible long term side effects (although they do not have enough research yet to benchmark) is osteophorosis - as im only 38 and have three kids needless to say I am quite concerned about the future - would be really grateful for anyones advice.
Incidentally, I have sporadic episodes of positive anitcardio lipins blood tests ?
Thanks - Kellie :-) x
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Re: Long term use of clexane injection
Reply #1 by Char
Posted: May 18, 2008 at 20:13
Make sure you are taking Vitamin D with Calcium, ask your Doctor if it interferes with Clexane or go to
http://www.medscape.com/druginfo/druginterchecker?src=google
I know Vit D does not interfere with Coumadin and I take generic Coumadin. Vit K is necessary for bone health, but it is the Vit I have to limit. 38 is rather young to have osteoporosis.
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Re: Long term use of clexane injection
Reply #2 by Kellie
Posted: May 18, 2008 at 22:17
Thanks for the advice. I am taking a calcium and vit D supplement combined and then a weekly tablet to help absorb the calcium. I know that 38 is young to have osteoporosis but I have been having regular bone density scans and have already lost some bone mass so you can understand why this side effect is a concern.
I am unsure what Coumadin is but am assuming that it is a similar thing to clexane ? I wish you well with your treatment and thank you so much for your advice - it is much appreciated.
Thanks again - Kellie
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Re: Long term use of clexane injection
Reply #3 by Sharon
Posted: May 19, 2008 at 06:43
Kelly--

I'm on anticoagulant for life. I'm taking Arixtra. I was on Lovenox, which I think is the same as Clexane--it's major side effect is also ostepourosis. Arixtra has a couple of advantages--it is synthetic, so it does not cause the osteo, it has a 24 hr half-life, so is once a day. I've been on it almost a year w/o side effects (other than the normal bruising). I clotted thru everything else--including coumadin, Lovenox and heparin. So far, not on this. Hope this helps.
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Re: Long term use of clexane injection
Reply #4 by Khalid
Posted: May 19, 2008 at 13:53
Kelly,

I have had two dvts and multiple clots in my lungs recently. I have been put on clexane 40 mg daily since i have low platelets count and doctors think warfarin wont suit mu conditions.
Kelly, did you feel any discomfort due to pulmonary embolism or clots in your lungs like breathlessness etc?

Thanks

Khalid
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Re: Long term use of clexane injection
Reply #5 by Char
Posted: May 19, 2008 at 20:49
Hey Khalid, I am often breathless and it is blamed on my bilateral PE that I had in Feb and a side effect of the Coumadin. I see you are on Clexane and I wonder if being breathless or short of breath is a side effect.
My CT the end of April showed no PE and minimal lung scarring. Another issue for me is my big stuffy nose and that is a major problem. Mostly I think being breathless is a side effect of the Coumadin.
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Re: Long term use of clexane injection
Reply #6 by Kellie Green
Posted: May 19, 2008 at 21:45
Hi Khalid
When I first got the clots on my lungs I felt very tight chested and breathless - but to be honest I did not think it was bad enough to be multiple PE's. As far as I know I dont have the low platelet count that you describe but clexane is the only thing that prevents my blood from becoming 'sticky' - my diagnosis is antiphospholipid syndrome - has this been mentioned to you at all ? It is interesting to find someone else who is on clexane - how long have you been on it ?

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Re: Long term use of clexanne injection
Reply #7 by Janine Renee'
Posted: May 19, 2008 at 23:52
I too like Sharon is on Arixtra injections. I had been on Coumadin since 2000 and have clotted 5 times. I found out May 1st my CFA is clotted from my groin to my ankle with an INR of 4.5 I now have no choice but to live with the injections. Iam so GLAD that the dr did not choose Lovenox because of the side effects. I already have bone loss with damaging myself any further. Thanks for the info Sharon..
I did not know it was syntheic.. You always teach me something new! Thanks to ALL for info also..
Look forward to reading everyones stories...
good luck!
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Re: Long term use of clexane injection
Reply #8 by Sharon
Posted: May 20, 2008 at 05:25
Khalid--

If you have a low platelet count, you should ask your docs if there is any chance of 'heparin induced thrombocytopenia' which is kind of when taking any form of heparin actually induces cltting. I had a low count and asked and they didn't think my count was low enough to account for the repeat clotting. We were still waiting for the results of the antiphospholipid testing.

Kellie--

You are the first who has APS besides me that I can remember anyways--don't mean to hurt any feelings--my memory sucks. I've asked several people and I remember reading a couple of folks w/ anticardiolipids. I suspect a few of the younger folks who've clotted have it and haven't been diagnosed as yet. I guess you tested + twice, 3 mos apart? Did you have any miscarriages, migraines, TIA's or any symptoms that mymic MS? Would like to hear from someone w/ this. Maybe I'll poll and see who else has APS.
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Re: Long term use of clexane injection
Reply #9 by Khalid
Posted: May 20, 2008 at 08:41
I am taking clexane injections since 2 mnths. My low platelet count is not due to clexane but i have it since 2002.
Sharon/Janine, what is the preventive dose of Arixtra you are on?
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Re: Long term use of clexane injection
Reply #10 by Janine Renne'
Posted: May 20, 2008 at 16:45
Iam on 7.5.. I have only been on it steady since May 1st.
I have not had a blood test since I began on the 1st...
I have an appt with a new Dr on June 3rd. Sharon how often should I have a blood test done? Should I call and request a blood test...Or do you think If I wait till
June 3rd when I see a new dr would be ok?
Kellie I wonder why they have not put you on Arixtra...since the other has such long term effects on your bones. Just wondering..Iam new to the injections, but this is my 5th clot and If the injections puts an END to all this Iam HAPPY:):)....
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Re: Long term use of clexane injection
Reply #11 by Kellie Green
Posted: May 20, 2008 at 21:57
Sharon - re: APS ...... so you have it too ? amazing as my haematologist has told me how rare it is so it is fantastic to find somebody else with the same problem. I have indeed had two positive tests 3 months apart, in fact I have had quite a few tests over the years and apart from a couple of random ones they have all been positive.
I am so interested to find out how this affects your everyday life and what treatment you have tried and are on now. I get the feeling that some of the posts that I am reading are from outside of the UK as I do not recognise the drugs that they are referring to - do you mind me asking where you are from ? Also, what are TIA's please ? I did suffer from really bad headaches in my early teens and these went on until my early 20's - thinking about it they probably subsided somewhat around the time of my first DVT. Not sure about the symptoms of MS - i'll read up on it and come back to you. I do know that I suffer with tiredness a lot and often ache from head to toe ! Also, have never had a miscarriage thankfully although I know this is common with APS - really looking forward to your reply - i'm elated to find somebody else with the same problem !
Also really enlightening and interesting to read everyone elses experience of DVT's - thanks all - Kellie x
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Re: Long term use of clexane injection
Reply #12 by Sharon
Posted: May 21, 2008 at 07:35
Hey Kellie--

I aam from Friendswood, Texas--between Houston and Galveston. Yes I have APS AND Factor V Leiden (heterozygous) and it is even more rare to have APS and a 2nd clotting disorder as I understand it. Lucky me--I have blown all their odds making out of the water!

TIA's are 'transient eschemic attacks--mini strokes. They are common in the elderly and people w/ APS and the brains of persons w/ multiple schlerosis (MS) look as tho there is scar tissue from TIA's. APS has neurological symptoms such as migraine, TIA, balance issues, vertigo, and others so is often misdiagnosed as MS. In addition, people w/ MS have been showing improvement in their symptoms by taking anticoagulants--so they think more people may have this than was originally believed. My migraines have decreased by about 75% since I've been on anticoagulants. I take Arixtra injections now.

My hypercoauable state started on May 22, 2007 and finally stopped on July 5, 2007 when I had my first normal D-Dimer test. I clotted thru coumadin, heparin and lovenox. They did thrombolysis 3 times and I reclotted immediately each time. I'm bessed to be alive and still have my leg and there isn't a day that I don't think about that. I'm not happy we both have this, but am that we found each other. As I said, I think others on this site do also, but they usually don't test for this unless there are 2 clots or a hypercoaguable state. I am 50 and never knew that my health issues were from these disorders until last year.

Are you in the UK? How old are you if you don't mind my asking that. I've read that clots often start very young in people w/ APS. I was fortunate that I made it so long. I did have all the fertility and multiple miscarriage issues, but have 2 beautiful kids in their 20's a boy and a girl. How about you? Take care.
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Re: Long term use of clexane injection
Reply #13 by Kellie
Posted: May 21, 2008 at 22:53
Hi Sharon
Facinating ! - I had one episode of a mini stroke when I was about 19 - at the time I showed all symptoms of a stroke but they were reluctant to diagnose as such because of my age - it all makes sense now.

I am 38 and like you, consider myself so lucky to be alive, especially after my last episode of multiple PE's on the lungs - that was scary ! I had my first DVT when I was 22, my second when I was 27 and pregnant and most recently my PE's about 5 years ago now.

I have three wonderful boys and a fanstastic husband who is patient through all of the bad times and very supportive. I lead a fairly normal life really, I do get tired quite easily but that is because my blood will not absorb enough iron, I take 600mg of iron a day and this just about keeps me above the anaemic line. I lost all of my hair a few years back also but it has now grown back thankfully !

I am bowled over to have found another sufferer - my haematologist attended a seminar in Chicago a few years ago and told me that he could only find reports of one other person with the same diagnosis and problems as me ...... could have been you Sharon !
I live in Rainham, Essex which is about 10 miles outside London.
Take good care of yourself Sharon, lovely to correspond with you :-) x
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Re: Long term use of clexane injection
Reply #14 by Khalid
Posted: May 23, 2008 at 12:16
Janine
I read at another posting that You did have an IVC filter placed in March. Was that a temporary filter or a permanent one, tell me something more about it as i too have implanted a temporary filter which doctors have suggested that i let it remain in my IVC as a permenant one. Are u taking any precautions or doing any follow ups...

Khalid


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Re: Long term use of clexane injection
Reply #15 by Janine Renne'
Posted: May 23, 2008 at 14:08
Hi Khalid
The dr suggested I put a permenat filter in because I have had multiple clots. I have had testing done to see If I any clotting disorders and all came back fine. I did find out I had more clot on May 1st and felt some short of breath. They did do an ultrasound and even a CT scan to check my lungs even though I have an IVC filter. That was scarey, but thank goodness my lungs were fine. They found my clot had now gone to my ankle(my groin to ankle). I try not to think about the filter too much. I know it's best that I have it to protect me, so I try not to think what could go wrong. I will be seeing a new dr in June, so we will see how that goes. Iam just tired of all this clotting stuff.
I try to keep going, but I get tired very easly.
take care to all
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Re: Long term use of clexane injection
Reply #16 by Lisa
Posted: June 4, 2008 at 10:34
Hey everyone.

Im 18 and have been on clexane for the past 8 months as ive had 4 dvts since i was 14 years old. I was on warfarin but kept getting random INR results and even went as high at 27.6. Needless to say , warfarin wasnt going to be safe!

Anyway , i have blood tests once a month and self administer the clexane. I live in London. Its nice to know theres some other people feeling the same way. Good luck everyone!
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Re: Long term use of clexane injection
Reply #17 by Khalid
Posted: June 5, 2008 at 07:59
Hi Lisa,

Could you tell us what is the preventive dose you take and what is the blood test called? It would help as i too have started Clexane 40 mg injection daily since two months.

Thanks

Khalid
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Re: Long term use of clexane injection
Reply #18 by Kellie Green
Posted: June 8, 2008 at 20:25
Hi Lisa
It is nice to know that there is someone so close who is on the same treatment as me ! - I live in Essex.
It is interesting to hear that you have regular blood tests - do you know what they are testing you for ? I only have one blood test a year now which personally I dont think is enough. Which hospital and consultant are you under ? My consultant of 20 years has just retired and I am worried now that I will be getting the correct advice for the future.
Have they given you any idea how long you may be on the Clexane ? I have been on it for about three and half years now and all I keep hearing is stay on it until a new drug is licensed.
The injections are not pleasant are they ? I also worry about the long term effects like oseophorosis - has this crossed your mind ?

Khalid - I am on a 40mg dose which is a therapeutic dose - do they intend to keep you on this long term.

All the best

Kellie
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Re: Long term use of clexane injection
Reply #19 by Sharon
Posted: June 8, 2008 at 21:34
Sorry I haven't been back to this thread for awhile. Had to stop life and shatter my ankle, have surgery and hobble around a bit before getting back to ya'll.

Janine Renee--You asked what does of Arixtra I am on. I started on 7.5 as well, but since I started taking the nattokinase, they cut me to 6mg and then down to 5mg. I usually ask for a blood test when I start having alot of bruising that is unusual. Otherwise, we really don't need the blood tests w/ Arixtra like we have to have on Coumadin/Warfarin, bcs this stuff is so much more stable. I'm not going to ask how much you weigh, but my hemo told me that I was put on too high a dosage at first bcs we should not be on 7.5 unless we weigh more than 200 pounds.

One thing you do have to make sure of is that when they do test your blood they are NOT doing PTT & INR--those mean nothing to us anymore. The test you must have is an Anti-Xa for Arixtra! They ofetn mess up at the labs--even in the major medical center facilities and do an Anti-Xa for heparin which is a different cailbrator than Arixtra. Check it out. We should remain between .70 and 1.40 if my memory serves me.

Kelly--It is amazing to find someone else, but I am guessing that all these young folks who have clotted are likely to test positive for APS as well.

Lisa--have you been tested for antiphospholipid syndrome? It is also called Lupus Anticoagulant or Hughes Syndrome. Wow, that is the highest INR I've ever heard of--you could've bled to death shaving your legs girlfriend!

Ya'll take care. --sb
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