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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Pregnant Roaccutane

72 replies

DorritoPaws · 08/08/2019 22:24

Hi everyone, posting here for traffic as I'm freaking out and hoping some of you have been in a similar position.

I was taking roaccutane for 7 months to help with cystic acne. Roaccutane causes serious birth defects in babies, so during the course of treatment I had to use contraception and have regular pregnancy tests.

At my last visit with the derm, he advised that I should wait 6 weeks before TTC. I finished the course on the 8th of June and low and behold became pregnant exactly 6 weeks later.

I'm absolutely freaking out here, worrying that the baby will suffer birth defects. I called my GP and can't get an appointment until next Thursday.

Has anyone else become pregnant so close to finishing roaccutane? I feel so utterly stupid!

OP posts:
ODFOx · 12/08/2019 15:17

His opinion is that the leaflet states pregnancy is safe after 4 weeks, but that there's not enough data or research to guarantee that timeframe.

Roaccutane has been used in thousands of people over the last 20 years. The packet insert would be updated if any of the information showed up as inaccurate: this isn't a cancer treatment; it's a treatment for acne, so the safety limits are really high.

namechangerreloaded87 · 12/08/2019 15:22

Hi OP, please listen to @ODFOx. These drug companies will not state the timeframes they do without sufficient evidence that it is safe. It will be a conservative estimate at that. Your GP and any obstetrician will not say it is ok, as they won't with any pregnancy. Similarly the doctors should be wary of telling you they would advise 3 months (or whatever their preferred timeframe is), it is based on nothing and is causing you distress.

I understand how awful this must be, but every pregnancy carries risk. You have abided by the guidelines of a huge drug company. These are facts. Everything else is opinion.

Yeahsurewhatever · 12/08/2019 15:25

I was told best to leave it a year
But then when I came off it they said ok just be extra careful for the next month don't get pregnant and then you're fine after that.

Honestly try not to worry, see any experts you can, but if they recommend one month in literature if say 6 weeks is perfectly fine.

Is it 6 weeks until pregnant or 6 weeks until you discovered?
I imagine it's low risk regardless, if you're not actually still taking the medication.

Hope you're feeling better x

ODFOx · 12/08/2019 15:42

packet insert from Feb 2019

When I had my DC we were advised not to eat nuts or eggs: that advice no longer stands as it was proved to not make a difference. Things change and the advice changes as e learn more.
When I had my youngest roaccutane was on the market and the advice was much stricter than it is now (possibly where some of the pp are getting 6 months from).

DorritoPaws · 12/08/2019 15:50

Thank you @ODFOx I really needed to hear that. I have the exact dates as below:

Finished roaccutane: 8th June
Normal Period: 8th - 12th June
Normal period: 7th July - 11th July
Conception: 20-25th July

So it looks like conception was exactly 6 weeks since taking my last roaccutane tablet. I was on 60mg per day for 7 months, if that makes a difference? Thank you so much

OP posts:
DorritoPaws · 12/08/2019 15:58

I absolutely appreciate that the doctors can't guarantee the pregnancy will be risk free and I am more than willing to accept the risk that all women have to go through, but I would just love for someone to say that I'm back to baseline statistics, not necessarily linked to roaccutane. I would be happy out, dancing around the living room if so!

Thank you to everyone for posting. You are making me feel so much calmer and bringing me back down to earth! You have no idea how much I appreciate this support. I've nobody to talk to about this IRL other than DP as I live away from family.

OP posts:
ODFOx · 12/08/2019 16:10

Forgive me if I'm over simplifying here but I want to be very clear for you: I'm putting in the worst case dates from the ranges you have provided:

Period dates 8 June/7 July indicate 30 day cycle.
Thus ovulation likely to be 14-16 days after last bleed: ie 21-24 July, which coincides with your thoughts.
Implantation takes place 6-8 days later. (27 July - 1 Aug)

  1. stopped taking roaccutane on 8 June 2019.
  2. earliest implantation date 27th July.

Minimum difference = nearer 7 than 6 weeks, and the (peer reviewed and constantly updated) guidance is 4 weeks.
Maximum difference = 8 weeks.

60 mg/day is a little less than 10x a maximal endogenous concentration for retinoids (700ug/day is a supplement dose), so we need to calculate when the amount in your bloodstream is decreased by that amount to put your mind at rest: less than 6 days

So the other 3.3 weeks is belt and braces for the pharma company to be sure.

Congratulations Flowers

DorritoPaws · 12/08/2019 16:25

@ODFOx THANK YOU, THANK YOU, THANK YOU! You have no idea how much you are helping me right now.

Yes my cycle is generally very stable at around 29/30 days and ovulation was definitely on 25th of July. I tested positive with a first response test on Friday 2nd of August.

How do I go about calculating the amount that was in my bloodstream? I did look at half life before, but my GP advised that because it's in my DNA and taken over a longer period that half life isn't accurate? My BMI is 22 and I'm 32 (this month) if that helps?

OP posts:
ODFOx · 12/08/2019 16:32

Its an artificial Vitamnin A and is definitely not in your DNA. I think that perhaps your GP wasn't entirely clear or there was some kind of misunderstanding there.
What your GP possibly meant is that the pharmacological effects may linger on in tissues after your blood levels are clear.

This is true: but as you haven't implanted while there was any roaccutane in your blood stream, any placenta (all new after 12th July) will not be affected by roaccutane. Any residual pharmacology can not affect the blastocyst.

You were well outside the recommended wait. There is no reason why your chance of a problem is any higher than anyone else's.

ODFOx · 12/08/2019 16:34

If ovulation was definitely on 25th July (and you did a test) then the earliest implantation is 1st August: everything is making the situation better!

DorritoPaws · 12/08/2019 16:57

Thank you @ODFOx

You are amazing! You've cut through so much crap and gave scientific, metric based guidance that my GP couldn't. I think I'm may change GP's after this debacle - he's a lovely man, but has obviously caused me alot of distress with this. I will still always have a niggle in the back of my mind, but I feel much more confident now.

OP posts:
NoSauce · 12/08/2019 17:01

ODOFx amazing info for the OP Flowers

OP really glad that you’ve had some reassurance from ODOFx, it must give you some peace of mind.

DorritoPaws · 12/08/2019 17:04

Thank you @NoSauce you've been a wonderful support too. I'm honestly so humbled by how thoughtful and empathetic you ladies (and gents?) are here, such a wonderful source of support. I'm going to pay it back ten fold by giving my (questionable!) advice where I can.

OP posts:
NoSauce · 12/08/2019 17:08

MN can be such a brilliant place for practical and emotional support at times, I’m so glad that you received it during this time. Keep us updated how things go OP x

ODFOx · 12/08/2019 17:09

I would just love for someone to say that I'm back to baseline statistics, not necessarily linked to roaccutane. I would be happy out, dancing around the living room if so!

Happy to help. There are no guarantees in life and doctors will never tell you that everything is OK. I can tell you though that you are back to baseline statistics, and there is no reason to believe that your previous roaccutane use will impact on your pregnancy.

I hope this helps and you have stress free pregnancy here on out. Flowers

AnchorDownDeepBreath · 12/08/2019 19:48

@ODFOx You're amazing 

@DorritoPaws I'm so glad ODFOx was here to help. The GP probably helped as much as he could, but did more harm than good... I've had a kidney transplant and it tends to happen with that, too. I guess they deal with so much, that the unusual stuff is tough.

All the best, and congratulations Thanks

LatteLove · 12/08/2019 20:01

Aw I hope you can relax now OP, you seem totally lovely and deserve a nice uneventful 8 months or so!

Mrsgogginsthe3rd · 12/08/2019 20:38

I’ve just read the last few posts. Why your GP is even giving advice on something they aren’t even allowed to prescribe is beyond me 🙈. This is a controlled drug, you should only be taking advice on it from the specialist who prescribed you it.

The DNA thing rang a bell with me though. There is a really serious/strong drug for eczema that is dermatologist prescribed that has similar precautions to Accutane (but is a completely different drug) I.e serious tetrogenic, controlled prescriptions etc. But this can have some sort of effect on your DNA (if I remember correctly) and the time you have to wait is much longer. I have seen someone on a forum confusing the two before and there was a flurry of posts about how this was an eczema drug. Sounds like your GP might be getting confused.

@ODFOx ‘S post is brilliant.

MamitaSi · 14/08/2019 00:23

Ok so Isotreintoin (the drug in Roacutanne) can cause birth defects and therefore it's best to wait so it's completely out of your system.

You have to wait for your 12th week scan and your birth defects test.

MyDcAreMarvel · 14/08/2019 00:42

and therefore it's best to wait so it's completely out of your system.
Which the op did!!!

DorritoPaws · 14/08/2019 10:36

Thank you @MyDcAreMarvel

@MamitaSi I followed my dermatologists advice to the letter and waited 6 weeks, but I was worried as I managed to fall pregnant exactly 6 weeks to the day after finishing the course.

Once I got my BFP, I called the dermatologist who was then very vague about guidelines and couldn't give me a guarantee that I was safe, even though he said I would be previously. Following that I had an appointment with my GP who was zero help and actually made me more anxious! But thanks to the wonderful ladies on this thread I now feel safe and happy to continue this pregnancy, there will always be a niggle in the back of my mind, but I'm going to try keep my positive head on :)

OP posts:
Sumebs · 08/09/2020 20:55

Hi DorritoPaws

Just wondered how you got on following your original post?
Did you get the reassurance needed, how did things go?

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