Stopping clexane - what is your experience?

[Skittles11]

Hi If you took clexane (or blood thinners) during pregnancy, can you tell me when you were advised to stop?

My clinic have said I should be taking it all the way through pregancy due to an increased risk of thrombophilia. I have the MTHFR heterozygous c.1286A>C variant (which I understand is very common and not necessarily a danger). But I also have the PAI-1 4G/5G heterozygous mutation.

The problem I have is my clinic, despite telling me the recommend me to take it all the way through, won't support me past week 12 - so they won't prescribe it. I am having a hard time convincing the NHS to support me, according to their risk factors I do not need it.

Any advice? Please share your adcice / experience. I am literally terrified of anything going wrong here due to 3 previous losses and 5 years TTC!

Also could anyone suggest a private GP who helped them in situations like thia one? X x

[XOXO13]

Hello,

I took it until 36 weeks of pregnancy with the twins, and the clinic continued to prescribe my medication. Can you clinic write a letter to your midwife or GP to advise you take it if they won’t prescribe it themselves? Xx

[Skittles11 in reply to XOXO13]

Hey, thanks for replying. Do you mind me asking, did your clinic continue prescribing it privately then even though your main care had been taken over by NHS? X

[XOXO13 in reply to Skittles11]

They did, although my care was always private. I swapped over full time care to my private gynaecologist who delivered my twins, and so he was very aware of my IVF journey and the medication I was taking. I had to stop taking the clexane at 36 weeks as I had a bleed and that was advised by my lead consultant vs the clinic. Xx

[PRAYINGFORTHISTOWORK]

hi if your clinic writes a letter stating what you should be on then your nhs doctor should prescribe it, however I think it’s not very helpful of your clinic to say they won’t prescribe it to you, I would maybe put in writing to them that you are very disappointed that they will not do you a prescription to cover you for your whole pregnancy and ask the reasons behind it as if they are saying you need it then you need it, it’s no cost to them as you will be obviously paying for the medication x

[Skittles11 in reply to PRAYINGFORTHISTOWORK]

Thank you for replying. I am quite frustrated that the clinic are stating I need something but not willing to support me to obtain that thing I need. Makes no sense to me. I have a few options to try and press forward with at least so will have to try and get on the front foot early next week x x

[butterfliez]

Hi I am still on clexane ( 35 weeks now) which was originally prescribed by my fertility clinic during my ivf . When I had my 12 week scan/app with the ante natal I mentioned that I need to stay on them & they got hold of a consultant for me who prescribed them for me for the whole duration. If you can get assigned to a consultant you will have a good chance of getting them prescribed especially with your history. Hope you can get this sorted out , will be one less thing to worry about Xx

[Skittles11 in reply to butterfliez]

Thanks lovely and I hope you are doing okay. I am being overseen by Fetal Medicine and my midwife spoke to the consultant there who has said they won't prescribe it! Which left me a little surprised as they know all about my history which is why I'm being seen by them in the first place. I feel I'm a bit stranded with this one x x

[butterfliez in reply to Skittles11]

That’s terrible , I’m sorry they aren’t being helpful even though your under fetal medicine , I don’t know if this will help but maybe explain how anxious you are and would want to continue the clexane. I expect you already have done this. It doesn’t do any harm to take them. This was one of my worries when I was discharged into antenatal care. Xx

[Skittles11 in reply to butterfliez]

Thank you lovely. Yes I will try again to explain my worries. I am not really understanding the reluctance on the part of the doctor when they know my history and I explained the risk factors. I will just have to keep trying but it is a stress I could do without as each day I see my medication dwindling more and more x x

[Krystal_43]

It’s ridiculous that your clinic didn’t write a prescription. Like the other poster said, I’d write a letter to get their reasons documented.

I’ve found some consultants are quite dismissive of recommendations by ivf clinics - you could ask to see another one? Alternatively try the private GP route

Hope it gets sorted.

[Skittles11 in reply to Krystal_43]

Thank you for replying. It's just adding unnecessary stress at the moment, I was under the impression I'd be getting this prescribed for the whole time and it's only an email today which has indicated otherwise. So am pretty frustrated and pretty gutted as I feel I don't know where to go from here. May have to try private GP as you've mentioned and hope they will help me x x

[Lana89]

Hi lovely I was on blood thinners till 12 weeks then put back on them at 26 weeks and stopped 4 days before due date a doctor put me on them at the hospital when you go for midwife check up hope you ok I know how scary it can be stopping meds I was having twins lost one at 9 weeks and couldn’t have a d&c because of the other baby had to wait for my body to absorb it so when it come to stopping meds I was shitting myself but all was fine thank god when you get to see a doctor they will ask you has anyone in the family had blood clots then if so they will put you back on them if your on aspirin you can take them till 4 days before your due xxxxx

[Skittles11 in reply to Lana89]

Thank you for responding, this is useful to know. I'm really quite anxious about coming off them because my clinic have said to continue but that's not very helpful when they won't prescribe. It makes no sense to me. X x

[Lana89 in reply to Skittles11]

Hi lovely your welcome that makes no sense to me either so I can understand how your feeling can you not get a letter of the person who said to stay on them and go to your gp and just say all this stress is not making you feel well at all until then I would take aspirin you can just get them from the shop they come in 75 mg take 2 they say to take 150 mg and drink beetroot juice it’s a natural blood thinner it doesn’t taste great I just necked it down quick . Have you had your midwife appointment yet at the hospital they might be able to sort something out for you I know how anxious I felt all the way through my pregnancy lost count how many private scans I had it only went away after I had given birth and then I burst out crying because I couldn’t believe I had done it we have all been through so much just to get to that point xxxx

[Skittles11 in reply to Lana89]

I have asked them for a letter via email for the attention of the GP, they didn't send a letter and instead just replied to repeat the guidance they already told me (which was to take those things to term). Usually my clinic has been super helpful so I've been really surprised that they don't seem to get the difficulty here. So I will now have to chase for a letter and hope someone will listen to me. I really don't need the additional stress at this time. I will do as you suggest re the Aspirin and the beetroot juice - thank you. I had a midwife appointment 2weeks ago but at that time I was under the illusion I would be getting clexane on private prescription throughout so although I did mention it I didn't labour the point as I wasn't stressed about not getting it at the time. No further appointment for another 6 weeks and I will be well run out by then x x

[Lana89 in reply to Skittles11]

Hi lovely there not making it easy for you my clinics abit like that the hospital and doctor and her team are great but my coordinator is hard work and with my clinic being in north Cyprus she’s my port of contact till I get over there last time I wasn’t given enough Lubion and steroids to get me to 12 weeks she said to ask my doctor but he wasn’t giving me nothing as my treatment was out of the uk the thought of dealing with her stresses me out more then the tww you think these people would get what we have been through we are not asking for much we are trying are best not to get stressed we just won’t the right meds we need and we can relax hopefully on your next midwife appointment you should get it sorted if you don’t get any joy out of them say your not feeling great and would like to speak with a doctor until then I know aspirin will thin your blood enough to keep you going 6 weeks with your beetroot juice I know it’s easy for me to say because I felt the same as you do when I stopped meds but try not to get to stressed you doing great I had to find something to distract me other wise my head was doing over time keep me posted how you get on and if you ever need a chat you can dm me lovely xxxx

[Backagain987]

I had an absolute nightmare with this too, legally IVF clinics can’t prescribe you drugs after 12 weeks as that’s when their supplier ‘ends’ contractually. I tried everything to get them to help but they just couldn’t. My first FMU appointment wasn’t until 17 weeks so I couldn’t get them to help. In the end I went to my GP as an emergency appt, cried a lot and explained my history and the significance of where I had got to in terms of the pregnancy, and they (after a lot of persuading) gave me a months worth to cover me but only after my IVF clinic had provided them with a letter saying they recommended I have it. Such a palaver.

Obviously I felt very awkward taking an emergency appointment etc but seeing as my little one is now 15 months and I think probably wouldn’t be here without blood thinners (I took them to 6 weeks post partum) I am so pleased I fought for them. Good Luck, I know how stressful it is xx

[Skittles11 in reply to Backagain987]

Hi, hope you're okay and thank you for your message. You mentioned that your GP helped in the interim between the clinic and FMU. Is this Fetal Medicine Unit? At the 17 weeks did they just help you no questions asked? X x

[Backagain987 in reply to Skittles11]

Yes. At my appointment I said I needed it and explained why and the consultant prescribed it immediately xx

[Wishinandahopin]

hmm that is tricky. I would definitely take it the whole pregnancy in your situation. My hospital were happy to carry on prescribing it for me but I was generally fairly high risk anyway. I took them till 6 weeks after baby was born!

could your clinic do a private prescription for you to continue it on?

If not you’re going to have to be very forceful with the doctors team- tell them that you don’t want to experience miscarriage only for them to prescribe it next time, ask to speak to a different consultant, get upset to them if needs be. I know we all don’t want to be that ‘difficult patient’ but we need to advocate for ourselves strongly sometimes.

Good luck!

[Crie1983]

Hi, I also have the MTHER c.1286A>C gene mutation. I stopped blood thinning injections at 12 weeks. My clinic told me to check at my 12 week scan. I’ve been taking 150mg of aspirin since 12 weeks. Xx

[Skittles11 in reply to Crie1983]

Thank you for sharing this. Most people seem to have continued and I have to be realistic that there is a chance I won't be able to get this medication prescribed as much as I might try. So it is reassuring that you stopped at 12 weeks, thank you. I will get some aspirin too X x

[Crie1983 in reply to Skittles11]

Good luck. It’s such a worry isn’t it, on top of everything we’ve been through to get here.

I was and if honest, still am, worried that I’ve come off the medication. Especially when you read that lots of others have continued. I’m trying to learn to trust the medical professionals and my body (which isn’t easy!). I’m going to book a reassurance scan in a couple weeks and check in that everything is looking ok still 🤞. Xx

[Toffeepudding99]

Hope you don’t mind if I drop in here. I can see you were prescribed clexane for a reason. I’ve also been on clexane. My IVF clinic said to speak with my midwife about clexane as each hospital has its own ‘pathway’.

At my booking in meeting with NHS I explained to the midwife all the drugs I’ve been on and she said I didn’t meet the NHS markers to continue clexane - that I should check back in with my IVF clinic. I did and they said I can stop at 12 weeks and continue on 75mg aspirin.

I didn’t have any investigations to see whether I “needed” clexane. I had a miscarriage last year and was referred to the implantation clinic but due to finances I basically said I’d like to put that money for the clinic into a third round if needed and went ahead with transfer. I asked if there were any additional drugs I might have been prescribed from implantation clinic tests and was told clexane and steroid - steroid for NK cells which they would prescribe as no determination and to take it not needed is more detrimental. So basically I took it on advice but not because it was ever said or diagnosed that I needed it. My last one is today - but now I see there’s a lot on this feed prescribed past 12 weeks - was this for diagnosed reasons- thanks x