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Original poster

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:
Original poster
DorritoPaws · 09/08/2019 17:37

Spoke to my dermatologist this morning, who in turn spoke to the pharmacist. He advised that according to the leaflet, women can't get pregnant within 4 weeks so technically it's fine, but couldn't guarantee.
Then went to my GP this afternoon who told me that his advice would be to wait 3 months, textbook states 4 weeks, but we shouldn't go by that. His opinion is that there is still a small risk, but that a termination is drastic, and that there's just not enough previous cases to call it one way or another. GP advised to go to an obstetrician privately and wouldn't refer me.

I'm astounded that there is no clear advice or guidelines that I can follow. I just want someone to say it's 100% ok, but they can't. I've honestly no idea what my next steps are.

OP posts:
fergusthefrog · 09/08/2019 17:51

The reason there are no clear guidelines to follow is because guidelines would be based on trials and evidence and no one could ever run any trials looking at women who get pregnant following taking roacc because it's just too risky and therefore unethical...it's unfortunately a no mans land because they know it's dangerous so it's avoided which means when it does happen we just don't know what will happen nor what we should do. I hope that makes sense

I'm so sorry you're in this situation and other than seeing the obstetrician like the GP advised I'm not sure what else you can do except keep your fingers crossed and wait Thanks

LatteLove · 09/08/2019 21:58

I suppose there’s never any guarantees in pregnancy anyway (roaccutane or not) so I guess they wouldn’t want to say everything will be OK just in case, even if something occurred not related to the treatment.

Am sure it’ll all be fine given you adhered to the guidance of the specialist x

Evilmorty · 09/08/2019 22:02

Please do be very hot on the symptoms of pancreatitis, my friend got it after taking roaccutane and was very seriously ill. Not saying you will get it obviously as it’s rare (but definitely possible as it’s a known side effect) but just keep an eye out and don’t discount it if you get symptoms. Good luck OP Flowers

MyDcAreMarvel · 09/08/2019 22:03

GP’s are not great on the affects of medication in pregnancy at all!
It’s been longer than four weeks it’s definitely is fine. ( sister in law is a pharmacist)

Evilmorty · 09/08/2019 22:05

Additionally accutane is dna changing so I don’t think the half life is an accurate judge, you’ll really need a specialist on this one.

Evilmorty · 09/08/2019 22:11

Advice from the British association of dermatologists says one month. You’ll be fine x

www.bad.org.uk/shared/get-file.ashx?id=2314&itemtype=document

NoSauce · 09/08/2019 22:23

Is a private obstetric an option OP, just for your peace of mind and an expert in this area? I’m sorry you’ve not had a definite answer, I know it must be a worry.

Original poster
DorritoPaws · 09/08/2019 23:05

@MyDcAreMarvel thank you. Did you ask your SIL? Thanks for the link to mother and baby, I read that last night and it somewhat helped but now with both dermatologist and GP being very vague, I'm back to panicking again!

@Evilmorty thank you. I know, roaccutane is one hell of a drug. The dermatologist indicated that it's a serious medication before treatment, but never really went into details. I'd advise anybody looking to take it to do their own research and ensure they're entirely comfortable. Thankfully I came out the other side with little side effects other than the normal dry skin etc but it can have terrible consequences for some x

@nosauce Yeap, I'm going to go private and see if I can get a second opinion to finally put my mind at rest. I'm hoping to get an appointment early next week as I'm away with my family the week after and know I'll be a misery guts if I don't have an answer by then! I'm in Liverpool - can anyone recommend a good obstetrician here?

Thanks to everyone for posting links. I've passed them to DP who is now absolutely brimming with positivity that it'll all be fine! I'm yet to get there myself, being a natural worrier but hopefully the consultant can put my mind at ease. God knows what state I'll be in if not!x

OP posts:
Original poster
DorritoPaws · 09/08/2019 23:12

Also if I do find a difinitive answer to this then I'm going to find a way to broadcast it to help others. Surely other women experienced this too and the lack of definite guidance is astonishing. I understand that there's lack of data due to ethics and low probably of this happening but they must have done trials to understand how long it takes for the drug to be completely out of the system and could create guidelines around that.

OP posts:
MyDcAreMarvel · 09/08/2019 23:18

@DorritoPaws yes she said even four weeks is just to be cautious, roaccutane will have left your bloodstream well before then in the vast majority of women.

MyDcAreMarvel · 09/08/2019 23:22

The Women’s has a private maternity dept with a good reputation you could try there. I really would not worry, but talking to a specialist should put your mind at rest.
I hsve been under the care of Mark Clement Jones in the past,although not privately as I take strong medications in pregnancy due to my disability.
I would recommend him if you can see him privately.

Andysbestadventure · 09/08/2019 23:45

My friend's dermatologist said 6 months too Flowers

movingontosomethingnew · 09/08/2019 23:46

I was told a month

Evilmorty · 10/08/2019 00:25

She had stopped the medication for about 3 weeks when she got pancreatitis DorritoPaws, so althoigh you’ve stopped, please do still take care x

Original poster
DorritoPaws · 10/08/2019 12:15

@evilmorty thank you. I'll be extra cautious. Really sorry to hear about your friend. Is she doing ok now?x

OP posts:
Evilmorty · 10/08/2019 13:00

Thank you. She’s not really. Being honest, she wants to get pregnant but is worried her health will let her down so she’s waiting a while to try. I think it’s mostly mental now, she’s overly worried because she remembers the period in hospital and doesn’t want to repeat it. She wasn’t in the best of health when she started roaccutane though.

I hope you get a solid answer x

onanothertrain · 10/08/2019 13:13

In my area they do a final pregnancy test 5 weeks later and say contraception for a month after stopping. The 6 months is for waxing and dermabrasion.

Original poster
DorritoPaws · 12/08/2019 14:49

Hi everyone, hope you're all well this Monday. I thought I'd give an update here for anyone interested or those in a similar position to me.

On Friday my GP referred me to a private obstetrician, but after lots of frantic phone calls this morning, it transpired that there are no private obstetricians in Liverpool!

I managed to speak to a different doctor at the surgery this morning and he advised that in his opinion the risk is low, but there is still a risk and referred me to Liverpool Women's for an early scan to pick up on any physical abnormalities. He did say that the scan won't pick up on any developmental issues, and that nobody could really guarantee it's ok and his advice would be to wait 3 months after stopping roaccutane also. 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.

Called the Women's and they don't have any appointments for early scans for at least 2 weeks. It's heartbreaking to say but I'm seriously considering a termination now. I've always wanted children and this should be one of the happiest times for me, but I don't see how I can cope with the possibility of developmental or learning difficulties, particularly when I've directly caused it. DP is onboard with whatever I decide, but I feel devastated for him too as he's getting older now and has always wanted children. It's such a difficult decision.

OP posts:
NoSauce · 12/08/2019 14:54

Oh OP, I’m sorry you still don’t have a definitive answer you so desperately need.

Is there anywhere else you could travel to for a scan?

Original poster
DorritoPaws · 12/08/2019 15:03

Hi @NoSauce, unfortunately not. I'd be happy to wait the 2 weeks for an appointment in the Women's if they could tell me definitively that baby would be ok, but according to my GP, they can't pick up everything.

I'm incredibly angry with my dermatologist for telling me it's safe after 6 weeks, and then totally going back on that now that it's too late. I'm also angry at the multiple health professionals I've had contact with over the past week, in that not one of them can give me a scientific answer. Lastly, I'm most angry with myself for moving too quickly after the roaccutane, I should have just waited that extra couple of months.

OP posts:
GiveMeHope103 · 12/08/2019 15:12

Oh no op, I can imagine how stressed you are as well. I remember my dermatologist also said 6 months but I was on a high dose and for a long period. Do you think your derm advised based on your dose? Awful that he is now backtracking.

ODFOx · 12/08/2019 15:14

OP.
Take a deep breath.
I am not a doctor. I'm a person who (used to) review the evidence that goes onto drug packet inserts.
I can tell you that the guidance time for avoiding pregnancy on the packet insert will be based on evidence from animal (non-clinical) and human (clinical) research.
The GPs will cover themselves and say that you can't be sure, and that is true, (because some people's babies have abnormalities without taking roaccutane at all) but if you became pregnant 6 weeks after stopping treatment there would not be enough roaccutane in your system to cause a problem.
Honestly. They can't give you an absolute reassurance because even without ever having taken the drug there is a chance of abnormality, but what they should be able to do is tell you what the blood levels would be compared to the dates.

When you say that you fell pregnant exactly 6 weeks after stopping treatment, are you able to provide more details (stopping day =day 1 etc) as between implantation delay and the way pregnancy is calculated it may well be that there was no implantation for even longer than 6 weeks.
Don't do anything you may regret. You are panicking, probably unnecessarily at this stage.

NoSauce · 12/08/2019 15:15

There does seem a lot of variation on the answers given to you, I totally understand why you feel so angry. Would it be worth looking further afield to see someone who specialises in fetal health? So sorry you’re going through this.

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