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Bad experience with clexane!!!!

(22 Posts)
emilysarcos Fri 06-Feb-09 20:51:36

Hi all

I have Factor V Lieden, with protein S deficiency. I have 2 children, a boy aged 4, and a girl aged 3. When i was pregnant with my son, i was put on 75mg of Aspirin a day. With my daughter, they decided to put me on clexane 20mgs every day. I would like to take this moment to share my nightmare experience with clexane.

I was placed on clexane at 12 weeks, and was injecting in the leg, and it stung like crazy, i also developed these hard lumps under the injection site, which became itchy and bruised. At 16 weeks, i had this extraordinary stabbing pain in my left side, felt a bit like cramp, and trapped wind. about 2 hours later i started to bleed, and not just spotting, it was pouring out from me, like a heavy period. I was rushed to hospital, where they said i was having a suspected miscarriage. But on the scans the baby was fine, no signs of bleeding inside the womb, and the umbilical cord blood flow was normal. They kept me in over night to observe my bleeding, checked baby's heart beat, and everything was fine, but they did not know where i was bleeding from. The hospital sent me home, and this bleeding continued for a month, like a normal period, but lasted for a month. My mum suggested that it might be the clexane causing the bleeding, so she said stop taking it, so i did, and surprise surprise the bleeding stopped, i tried to tell my specialist this, but he got annoyed with me, and demanded that i continue taking it, and clexane doesn't course these side effects. So i started to take it again, and the bleeding started up, but it seemed as though the hospital was not interested, because they couldn't figure out where the bleeding was coming from. Eventually the bleeding stopped, and i continued to have a normal pregnancy. When it came to the point of me loosing my plug, before my waters broke at 38 weeks, it wasn't your normal plug, it was a huge blood clot, looked like a small liver. I went to hospital, and they looked at it, but couldn't give me answer. They wouldn't keep me in, and i went home. The following day, my waters broke, and gave birth to my daughter who is now 3. Another thing was that when she was born, they told me she had downs syndrome, this was not picked up in the scans, and i had the tests as well. I was shocked, because i was only 23. Then came the breast feeding, i didn't have enough milk, my breasts weren't swelling, and they didn't feel gorged with milk. I had to switch to formula. I believe this was down to the clexane, as i mentioned before, i was only on aspirin on my first pregnancy, and that was a normal healthy one, my son was born at 8lbs 14Oz. My daughter on the other hand was only 6lbs 5Oz. I am now 6 weeks pregnant again, and i am on 75mg of aspirin, I refuse to go back on the clexane, I just don't trust it. Has anyone else had a similar experience with clexane, whether it be bleeding, small birth weight, defects, or breast milk?

Sorry to rant on, but the professionals won't listen

Thanks for reading. xx

alicecrail Fri 06-Feb-09 20:59:03

Bugger! I had to have it while pregnant because of a broken leg (clumsy blush) But apart from it being painful i didn't have any problems

yomellamoHelly Fri 06-Feb-09 21:20:33

I'm on Clexane again for this my third pg. (Was on it for second too.)
Had dvt with pg nr1 and was put on Fragmin. After a couple of months I developed an allergic reaction. Reaction sounds pretty much the same as you, but I didn't bleed. It started the morning I had an ante-natal appointment though - and I was instantly seen by various consultants with blood / obs / scans / pics etc taken regularly. Didn't take Fragmin again and they sourced a drug called Orgoran to give me so I could at least go home that night (nothing having happened during the day). Then returned next morning to repeat process and was warned ds1 might arrive that day (3 months early). In the event it didn't happen and the pg continued to term.
Was quite painful though and was really quite blotchy and itchy until a couple of weeks before the end, plus totally wiped out.
Once ds1 arrived I then struggled with bf, but felt it was because I'd been so ill with everything that had happened. Also passed lots of nasty looking clots (much more so than with ds2) afterwards.
FWIW in my second pg I found the whole injecting thing really painful and I was always covered with bruises. Same this time round. Didn't experience this when I was on Orgoran, but it's not as effective. (Have Leiden V and prothrombin deficiency, so almost a given that I'll get one without treatment.)
Was lucky though in that tonnes of people have been involved at Kingston, Queen Mary's and St Thomas's so I've always felt the ante-natal / post-natal care has been excellent.

emilysarcos Fri 06-Feb-09 21:48:55

Thank you for sharing your experiences with me, i felt so alone. It felt as though i was the only one with the problem, I just found a site which tells you about the side effects of clexane, and it was last updated on 3rd feb 2009.

http://www.netdoctor.co.uk/medicines/100000527.html

It has my problem listed, so i am sure it was the clexane, and i am not going to take it again. I am thankful that i bled in my abdomen, and not the skull as it states as part of haemorrhaging.

iMum Fri 06-Feb-09 21:50:41

Cant talk much, but I had a terrible skin reaction to clexane , awful bruising, itching like mad and lumps.
This last pregnancy i was put on a different formulation-tinziparin (or something like that) no reactions with this brand.

mumoverseas Sat 07-Feb-09 09:04:07

that sounds like a horrendous experience Emily.
I've been on clexane since I was around 28 weeks due to previous DVT and other health problems although I was then told I should have really been on it from 8 weeks but I'd slipped through the net. I inject myself every night (40mgs) but I was told to inject into my stomach which although was quite scary, didn't result in any lumps (although occasional bruises) Thankfully, I haven't had any of the awful experiences that you've had and I'm having a CS tomorrow morning so have been told not to inject tonight (hurrah!) but I think I then have to inject again up to 6 weeks afterwards. I must say I'm a little anxious about injecting so soon after a CS and do wonder whether I will heal properly.

I guess some people react differently to it than others and I have been 'lucky'.

sadminster Sat 07-Feb-09 10:55:23

I've been on clexane for three pregnancies (up to 60mg/day) with 150mg of aspirin. I haven't had any problems - I have my FBC & INR checked periodically. I'm treated at a clinic where pretty much everyone is on clexane - I've come across a woman who had an allergic reaction to it & was switched to fragmin but nobody with bleeding problems. IIRC you shoul have your platelets tested 5-7 days afetr starting it because it rarely causes a thromocytopenia which can be dangerous.

Mumoverseas - I start injecting again the evening after my c-sections for 6 weeks too - again I've had no problems with bleeding or healing (all section women are given clexane in my hospital until discharge regardless).

mumoverseas Sat 07-Feb-09 13:06:40

sadminster, thanks for that info, very useful.
When I had my DD 2 years ago I didn't get put on anything as by the time the referral was made to the haematologist and I got my appointment, she was 4 weeks old!

I'm currently in the Middle East and my consultant in the UK had put me on clexane and have not had much info/guidance out here so its good to hear from someone else that its quite normal. Thanks very much

emilysarcos Sat 07-Feb-09 15:00:39

The hospital, didn't follow up with blood tests, I do not know why. Especially with my FVL, and Protein S. I never got a straight answer from them, I guess i can put this horrible experience behind me now, and get on with this pregnancy, I still do not know why i was put on clexane, I have had no previous clot problems, i just have the disorder, so i am not a high risk. Oh well.

Gumbo Sat 07-Feb-09 15:18:25

I find this quite interesting.

When I was pg with DS (who's now 3) I injected with Fragmin from 6 weeks until he was 3 months old. It was fine, no side effects and we were both healthy.

A year and a half ago I found I was pg again and this time got put on Innohep Tinzaraprin. Within 3 days I started to feel unbelievably ill, and miscarried. I thought I'd just been really unlucky, fell pg again a couple of months later, went onto Tinzarparin again at 7 weeks, and had an identical reaction a few days later, and miscarried in exactly the same way as before. Both times the timing was identical following starting on Tinzaparin.

I went to a lot of effort to try to complain/find someone who'd believe me, but everyone closed ranks and denied it could possibly be the drug that had caused my miscarriages.

I felt so strongly about it that I registered my concerns via Yellow Card (the organisation that helps to make medicines safer by logging side effects).

emilysarcos Sat 07-Feb-09 22:49:22

Gumbo, I feel that the Tinzarparin caused the miscarriage. I was the same, no body believed me, or they where not interested in the matter. I did try and complain, but was ignored.

Carrie06 Sun 08-Feb-09 17:25:57

I'm sorry you've had such a bad experience with it. I've only taken it for 2 weeks and injected it into my stomach and the worst I had was small bruises. It may well have contributed to some of the events you had (e.g. bleeding) but some of them are so frequent in pregnancy that it would be very hard to attribute it to the drug e.g. problems feeding.

I hope your daughter is ok but I think it's very unlikely that the Down's syndrome is drug-induced. Please don't think I'm being dismissive of what you have gone through but I think some of the problems you have described such as problems feeding, low birth weight and Down's syndrome can all be related to each other and not necessarily drug-induced. Cx

MrsMcJnr Mon 09-Feb-09 16:27:02

Emily, sorry to hear your story sad I have Factor VII prothrombin disorder and this is my 2nd pregnancy on clexane and aspirin. I lost my first baby as I didn’t know about my condition and so consider clexane a miracle worker as it gave me my perfect DS and I am now 25 weeks with my next baby smile I have always injected into my stomach, yes, sometimes I get those lumps and bruises but otherwise I’ve had no ill effects. Like a previous poster said, when I first started clexane I had my blood tested weekly to check I had no adverse reaction to it. I BF my DS until he was 7 months so no issues there either. Both times I have injected daily from 3 weeks pg and then until 6 weeks after DS’s birth and for the same period after this baby’s birth. I am also now in a different country from where I had DS and the treatment has been exactly the same. I wish you a safe pregnancy smile

MrsMcJnr Mon 09-Feb-09 16:34:34

I have just read that net doctor piece and just wanted to comment:

At one part it said “It is not known if this medicine passes into breast milk. Mothers who need treatment with this medicine should avoid breastfeeding their infants during the treatment. Seek further medical advice from your doctor.” Two consultants told me that the medicine does not pass into breast milk and that it is perfectly safe to breastfeed when using clexane.

It also said “Osteoporosis (a reduction in bone density leading to bones which may fracture easily) has occurred after long-term treatment with a similar medicine called heparin. It is possible that this could happen with Clexane.” I read that the only time that we lay down calcium on ours bones as an adult is during breast feeding and therefore any amount of breast feeding can help counteract the risk of osteoporosis caused by taking clexane.

joyfuleyes Mon 09-Feb-09 16:55:15

Only a tiny amount crosses the placenta & it is perfectly safe to breastfeed while taking clexane.

Southside187 Mon 23-Jun-14 09:18:12

Every website that I have seen says Clexane & Asprin is a big no! No! :/ I have been taking clexane for 4months 100mg daily. No fun at all especially with the lil lumps n bumps on your tummy :/ it's a very safe drug, the biggest danger is internal bleeding cause you blood is so thin, & other drug interactions so please look into mixing drugs!!! You'd think something simple as Asprin wouldn't do anything, these doc's just prescribe, prescribe. I get so mad sometimes. Take care everyone ;)) go have a look? www.drugs.com/drug-interactions/enoxaparin,clexane-index.html?filter=3&generic_only=

squizita Mon 23-Jun-14 18:51:56

Southside what have you been reading? Please don't trust "Dr Google" ... Clexane AND Aspirin are the standard cure for recurrent miscarriage and for all women who have Hughes syndrome when pregnant. Thousands take both. It is not rogue, it is not new, it is prescribed responsibly.
Please read the Hughes Syndrome Foundation page and the Miscarriage Association page.
If you are reading this and take aspirin and clexane, DO NOT JUST STOP it places your pregnancy and YOU at risk. Seek medical advice for clarification.

squizita Mon 23-Jun-14 18:58:41

Also just clinically - a baby over 6lb is NOT underweight, Down's Syndrome is a chromasomal disorder which occurs at conception... neither of these are medical issues caused by clexane.

sydneybeachgirl Mon 14-Jul-14 02:10:26

I cannot speak on the topic of Clexane and pregnancy but I was given Clexane as a precautionary measure for a 26hr long flight. I followed doctor's order and administered it every 12hrs. I wish I had not. About 2-3hrs after taking Clexane I had an adverse reaction. Every single time. I went into a half-baked anaphylaxis. Short of breath, chest pain - heart palpitations, lightheaded, unable to sit up straight, heavy breathing and dehydrated to the extent that even drinking 1 litre of water within 30mins I was still with dry mouth that felt like Sahara. I survived the 26hrs of flying because I was in business class so having a bed meant I could lay down. Not sure what would have happened had I been in economy...As soon as I landed I had to go to ER as I was so weak I could not even lift my carry on luggage -had no issues with it when boarding and prior to Clexane. In the hospital they asked me to take Clexane again so that they can observe the effects - at first they claimed it was just "anxiety attack" which made no sense as I am a very frequent flyer. When my nose started to bleed for no apparent reason they finally agreed to allow me stop taking Clexane on the grounds of "severe adverse reaction" and tried Heparin instead. Had no adverse reaction to Heparin whatsoever. My advice is - if you have been prescribed Clexane and feel tired, dizzy, lightheaded etc 2-3-4hrs after taking Clexane then go and see your doctor straight away. This adverse reaction is extremely rare but happened to me during the 26hrs of flying Clexane was supposed to make safe and comfortable -my kind of luck. But don't write these simple signs off as "tired" etc you don't want to end up like I did - in hospital for 3days and recovering at home for 2 days - just trying to get my energy level back up. I am hoping this helps

frankiebuns Mon 14-Jul-14 08:22:31

Thankyou for the warnings guys, I have factor v leiden and I'm on celeaxane for a week after dd due they did mutter 6 eeks i m on 75mg of aspirin atm but baby tiny etc

efeslight Mon 14-Jul-14 10:20:02

I took clexane and aspirin for my second pregnancy, as my first baby was delivered at 28 weeks at 1lb 11oz as the placenta was failing. He is fine now, but still small. I also really struggled to bf.
My second pregnancy was incredibly stressful, huge bruises and pain, constant testing, always waiting to see if the same problem would happen - well it did, but to a much lesser degree - she was born at 37 weeks, at 4lb 11oz- growth/weight gain had stopped at about 32 weeks, and then she stopped moving at 36 weeks. The placenta was small. Again, bf didn't get going. So for me, the clexane and aspirin worked very well.

LineRunner Mon 14-Jul-14 10:26:13

Not pregnancy related, but just wanted to say that I have had a bad experience with a blood-thinning drug (warfarin) and nobody medical believed me. My family knew it was wiping me out, though.

I was so glad to get off it after six months.

Clexane on the other hand was fine, but I injected into the sides of my abdomen/stomach area.

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