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APS and IVF

tomekan profile image
21 Replies

Hi, I am new to this forum and am wondering if anyone here are going through or have been through IVF?

I have had 2 negative rounds so far and the fertility doctor says is most likely because of the APS (or Lupus that I suffer from too).

I take aspirin for the APS and was put on Fragmin as well during my rounds of IVF, but it still didn't work out. 

I am desperately looking for some advice from somewhere, or just to hear what has worked for other women with APS during their pregnancy (with or without IVF)

 My neurologists says that Fragmin is the only thing "extra" I could take.  

My husband and I are about to embark on another round of IVF soon and would be grateful for any advice/ comments 

Kind regards

Karin 

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tomekan
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21 Replies
Groovy profile image
Groovy

I've not had IVF but I have APS and am trying and I've been told not to take aspirin (along with heparin injections) until I get a positive test.

Are you taking aspirin before IVF? It probably won't affect anything but just something that's different to what I've been told to do.

I've had 4 miscarriages over the last 3 years- I've not fallen in the last year but I'm not sure why (apart from stress).

All the best with your journey xx

tomekan profile image
tomekan in reply to Groovy

Hi and thanks for your reply. 

Would you know for what reason aspirin is not recommended before a positive test? 

I agree with you, this journey is so stressful. It's almost unbearable.

All the best to you too

Karin

Groovy profile image
Groovy

I think it's something to do with implantation. 

Yes it's so frustrating on so many levels. 

Where are you having your IVF? I went to a recurrant miscarriage clinic in London to get my diagnosis but apart from that there is such little support available.

The news is talking about miscarriage today as they have been able to keep embryos in a test tube for 13 days which is past implantation- this has never been done before. I'm not sure how I feel about it though. It's great that they'll have more research but then at what point do they stop? 

Sorry to go off at a tangent xx

tomekan profile image
tomekan in reply to Groovy

Hi, 

We have produced really high grades embryos, so I am convinced its something to do with implantation. But I guess I can never find out for sure. It's just the gut feeling I have. 

We got a founded NHS go at St Helier hospital in south London in August last year. Went back there in February for a frozen go. In hindsight, I regret going back there, I have now realised how desperate I was/ am! 

Did your gp refer you to the mc-clinic? Was it a long wait to get an appointment? 

I think it's good they are researching but I feel that I will probably be too old when it will be available to the general public. 

All the best

Karin 

Groovy profile image
Groovy in reply to tomekan

My gp was useless and just said it's one of those things and we should just keep trying!

I had private healthcare with Benenden and they referred me to st marys in London. 

I just need to fall now and see if the meds work x

tomekan profile image
tomekan

Thank you 

Elin85 profile image
Elin85

Hello, I have not done IVF but i had 5 very early misscarriages during 2 years when i was trying, the first year nothing happened at all.. I finally got My diagnose APS and i tried aspirin and fragmin but that didnt work so i tried aspirin from the beginning of the cycle and fragmin from positive pregnancytest AND prednisolone from ovulation and i succeded the first time i tried it and i didnt have a misscarriage, now im in week 29 of my pregnancy. I have heard about other people that tried prednisolone during their ivf and they had a good outcome. It seems to help sometimes If you have a autoimmune condition like APS. Ask your dr what he thinks about it. Wish U all the best

tomekan profile image
tomekan in reply to Elin85

Hi Elin and thanks for your reply. My doc took me off the steroids about a year ago. Think I will demand them back!

All the best to you!

Karin

tomekan profile image
tomekan in reply to Elin85

Hi again Elin, I forgot to ask you what dose prednisolone you were on, please? Have you taken it throughout?

Karin 

Elin85 profile image
Elin85 in reply to tomekan

I was on 10 mg from ovulation and at week 12 i started to taper It down and then stopped taking it completely.. 10 mg is a very Low dose but it was enough for me, i have heard that 20 or 25 mg is what many dr's recomends also so that depends what your dr think is the right dose, i really hope this can help you. Best of luck to you// Elin 

tomekan profile image
tomekan in reply to Elin85

Thank you very much, will have a chat with my doctor. 

Are you Scandinavian?

Karin

Elin85 profile image
Elin85 in reply to tomekan

Yes do that. I really think it can help the embryo to implant. Yes im from sweden, where Are U from? 

tomekan profile image
tomekan in reply to Elin85

Jag är oxå från Sverige. 

Jag tyckte att Elin lät väldigt svenskt!

Elin85 profile image
Elin85 in reply to tomekan

Hehe Karin lät väldigt svenskt med så misstänkte det med! Ivf Falun har jag hört ger prednisolon om man har någon autoimmun sjukdom..

Tlove profile image
Tlove

Hi, my story is kind of similar to Groovy. Was hypothyroid and had to get this under control before I could conceive. Then I was diagnosed after 2 miscarriages, then took aspirin and heparin after an early 6 week scan on my 3rd pregnancy but I lost that one too. I think they left it too late to start the anticoagulants and the recommendation then was to start them from a positive pregnancy test and also take high dose folic acid. Well, it was taking ages to get pregnant again when I hadn't any issues before (my 3 losses were all within a year) so we were referred to a fertility clinic. They discovered my amh levels and therefore egg reserve was also low and this may have been a factor. I did IVF last Oct and have been on aspirin and heparin since positive test. They gave slightly conflicting advice and said I could either start 10 days after transfer or when I got my positive test. I started from positive test and will continue until due date. I had been on high dose folic acid for about a year previously and continue to take that too, I'm 30 weeks tomorrow.

I have seen some reports about aspirin helping with implantation but again, there is conflicting information out there on it. 

So try not to worry, it can happen if you're well looked after. I've been told that despite all my issues, my current pregnancy is like a 'normal' pregnancy now. I still have a few weeks to go but feel very positive about it all. There are many success stories on this forum from women in similar situations.

tomekan profile image
tomekan

Thanks for your reply and wishing you the best of luck

Karin

Tlove profile image
Tlove in reply to tomekan

Just to mention that steroids were part of the IVF treatment, I was on medrone from egg collection for about 4 days or so. I think it's standard to get it as part of IVF, regardless of APS. They will also give you progesterone for a few weeks to help the pregnancy progress.

Sev132 profile image
Sev132

Hi Karin,

I have had numerous miscarriages too. My most recent was a 21 week old little boy. Unfortunately my placenta was riddled with clots, even though I was on clexane and aspirin daily. Ihave recently started seeing a reproductive immunologist (in Sydney Australia)

His protocol it clexane, aspirin, and prednisone daily. I also have to have IVIg treatment every three months til I fall pregnant and every month once I fall pregnant. I will continue with the prednisone til about week 34 or so. He explained that both the prednisone and IVIg will work as a barrier around baby and placenta so that the placenta can continue working properly.

I take extra folate and will also have to have extra progesterone once I fall.

Hope this helped :)

atiajanssens profile image
atiajanssens

I've been through 2 rounds of IVF, 2 early miscarriages and 2 unsuccessful attempts - my sister has APS and I asked my doctor to check for it the first time i had a miscarriage, she didn't, she said "this is normal". so now i've had the second miscarriage and will ask her again to make a blood test. is it more likely that I have APS if my sister has it? Am I making myself unnecessarily crazy...?

tomekan profile image
tomekan in reply to atiajanssens

Hi,

I am not sure if APS is hereditary, demand a blood test from your doctor, just to make sure.

Also ask to be referred to a miscarriage-clinic where they might give be able to run some test. Are you in the UK?

K

Lure2 profile image
Lure2 in reply to atiajanssens

I should say it is more likely you have got APS if your sister has it. It often runs in families. You must know that even if you do not have positive antibodies when you test for APS, you may have our illness. Talk to the Specialist your sister has and also learn the other symptoms we have. Perhaps you do not have APS as it is difficult to tell at the beginning.

Important to talk to a knowledable Specialist of autoimmun illnesses as I hope your sister has got now.

Remember you are not at all crazy!

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