Anti TNF and pregnancy

[Janeye]

Hi

I've not been on here for a while but have been on a few times with pregnancy related questions. I've been trying for the past 10 months for pregnancy and sadly had a miscarriage and several flares as well as knee surgery.....not too much then!

I'm at a point where I think it might be time for me to go back onto Enbrel which has worked so well for me in the past. At the moment I'm on a cocktail of sulfasalazine, hydroxochloroquine and a low dose prednisolone. The only thing that seems to be helping is the prednisolone but I don't want to stay on this due to long term side effects. My rheumy reassures me that being on the dose I'm on and my age they shouldn't pose too much of a problem but that doesn't mean I want to stay on them.

I dream of being back on Enbrel and feeling as well as I did but also know that I can't be on it whilst trying for a baby. My question is, has anyone been on anti TNF treatment whilst trying to conceive? I would obviously stop it as soon as I fell pregnant but know that this is something that rheumy s advise against. I've read lots of stories about people staying on ant TNF drugs whilst trying with the go ahead of their rheumy but don't know anyone directly who has done this.

I am hoping to hear from my rheumy team on Friday and wanted to ask this question in the meantime as I am keen to see if there are any other options for me before giving up my dream of having a family.

Many thanks

[LavendarLady]

Janeye, I am so sorry to hear of your troubles. What an awful thing to happen and flare ups as well. I can't answer your question about trying to get pregnant whilst on Enbrel but I do know from the blurb that comes with it, that you should stop taking it whilst trying to conceive. I do think you should be guided by your rheumy team who know best. Is it possible you could delay trying again for a few months, go back on the Enbrel and see how you feel before you come off it again? I don't know how old you are or whether time is running out for you but don't give up your dream of having your own family just yet. There may be other drugs which will help and as I said, be guided by your rheumy team who will have come across this problem before and will have the answers for you.

Good luck. LavendarLady x

[Janeye in reply to LavendarLady]

Thank you for your comment. I know I need to listen to my rheumy team as they know best. I'm 34 so I feel time isn't on my side which is why I'm so desperate to have a family. I know that feeling stressed doesn't help the situation. As you say it may be worth going back on for a few months and then trying again, I just hate the thought of having a big flare if I were to come off again and going through the same thing. It's such a difficult decision. I'll keep you posted.

[wiliby]

Hi Janeye,

I wish I had the website I came across with some info on this but I will tell you what I remember. Please remember I am not encouraging you and of course you should follow medical advice, I was even unsure whether to answer but I understand how difficult this must be for you.

So, I'll get to the point! 2 months ago I missed a period, the only time this has happened resulted in my 2 children so I was very concerned and did some researching. I found a report basically saying there were NO negative effects on women who fell pregnant on Enbrel and the Enbrel was stopped immediately. If I remember correctly the data was taken from around 200 women.

But, like you, I'm on Enbrel and before I was aloud to go ahead I had to sign a form to confirm I was taken contraception so I understand getting pregnant was a huge NO.

I'm not pregnant but have a delightful ovarian cyst making my body think I am!

I don't think a consultant would support this and probably rightly so. I will try and find the info for you. Maybe your Consultant has awareness of this report and maybe not completely against it. Hopefully as LavenderLady suggests there is an alternative.

It did give me peace of mind, if I was pregnant then baby would/should have been okay.

Take care, would love to hear how you get on x

[wiliby]

I found it!

''Can taking etanercept during my pregnancy cause birth defects?

Etanercept use during pregnancy is not well studied. In a survey sent to rheumatologists, the doctors reported no increase in birth defects or miscarriage in 417 women exposed to etanercept or another TNF inhibitor during pregnancy. About one third of these women continued to take the medication throughout pregnancy. Also, three studies looking at 20, 25, and 100 women taking etanercept in the first trimester found no increased risk for a pattern of birth defects...''

pregnancystudies.org/...pre... (then put in Enbrel in search box)

and this shows a report with a woman who continued throughout her pregnancy;

rheumatology.oxfordjournals.org/content/49/11/2225.full

Sounds quite positive, If I were you, I'd be taking this along to next Rheumy appointment!

[Janeye in reply to wiliby]

Thank you. I think I have seen this web page before and thought it was interesting. I'm expecting a call from my rheumy team tomorrow so will see what they think. I'm pretty sure they will say that it isn't a good idea so I will just have to go from there. Thank you again for your input.

[Victoria-NRAS Partner Moderator NRAS]

Hi Janeye

This is definitely a difficult situation. I cannot help with putting you in touch with someone who's been on this drug and become pregnant, but like you, I have read of positive cases. New drugs tend to advise against taking the medication while trying to conceive, because they have obviously not been able to do trials on pregnant women, so they have to be cautious, but further down the line the guidance may change. I know this isn't what you asked for, and that you've read a lot already, but I thought the following might be helpful:

OTIS are a very useful organisation based in the US, who provide information on medication and pregnancy:

mothertobaby.org/otis-fact-...

The following is a study which produced positive findings on pregnancy/conception while taking anti-TNF drugs:

onlinelibrary.wiley.com/doi...

I hope this information will be useful to you and potentially to your healthcare team.

Kind regards

Victoria

(NRAS Helpline)