Moan and advice

[Janeye]

Hi all

I've not been on here for a while as I've been so up and down over the past few months. I'm currently off my regular Enbrel meds as I am trying to conceive. As a result I've been having on and off flares. On top of this I miraculously conceived first attempt but sadly miscarried just before xmas. As you can imagine this was a terrible ordeal for my husband and I as we were both so happy that it had happened so quickly for us.

I want to try again but need to wait a few more weeks and am having a bad flare of my knee and hands despite being on a low dose of steroids. I'm starting to consider going back onto the Enbrel for some respite but at the same time am desperate to get pregnant and have been off the meds for so long to try and get to this point that I don't want to give in. I'm very stubborn so it's hard for me. I'm in a horrible situation and just don't know what to do.

I was wondering if anyone has been in a similar situation to me?

Hope you are all in a brighter mood than I am today x

[Hidden]

So sorry about the miscarriage Jane. I can't help you with advice but I can say that it too us a long time to conceive our first two babies and then the third one came along without us trying. I didn't have RA then but I was covered in eczema and had to be very careful what drugs I took for it. I do remember coming off steroids while trying to conceive the first two ( it took a year for first son and two and a half for second son) and being desperate to conceive partly so I could get a break from the eczema. Ironically it got much worse for the first pregnancy but I was just very unlucky as most people find it improves. Big hug and hang in there - it will be worth it in the end I'm sure. Tilda x

[Janeye in reply to Hidden]

Thank you for your kind words. I have to be on the low dose of steroids otherwise the RA goes haywire. I'm thinking of trying accupuncutre to see if that helps. My rheumy is great and really supportive. He has advised giving it until the summer and if I haven't conceived to go back on the Enbrel. Not sure I would be able to hold out that long so will see how things go over the next few months. I'm just tring to keep focussed on the end goal and in the meantime eating well, getting some exercise and no stress.

My rheumy has high hopes that when I do conceive that the RA will settle from around the 12 week mark when thet look at weaning you off the steroids completely if you are on them. I'm hoping and praying that this is what will happen for me.

[earthwitch]

I'm so sorry you lost the baby. That must have been awful for you, and particularly if you are also feeling bad from being off enbrel.

It might be worth having another talk with both rheumatologist and obstetrician about keeping on enbrel during pregnancy and while trying to conceive. I think the jury is stll out about whether it causes significantly greater risk to the baby. If you can find a doctor who will have a really frank discussion with you about it you might find that you could be better off taking it than stopping it because it could possibly keep your body in a better state to go through with a pregnancy. Here are a couple of articles for a start that you could print and take to the doctor to start the discussion. I know my cousin had that issue with Lithium (which has a fairly high risk of birth defects) but it was far more risky for her to stop taking it and she was prepared to take the risk (and lucky enough for it not to do any damage).

otispregnancy.org/files/ada...

enbrel.com/HCP/faqs.jspx

[Janeye]

Thank you for yout response. That's great news about your cousin but I have had several conversations with my rheumy and he has said that he wouldn't want me to stay on Enbrel as there's not enough evidence for the effects on pregnancy. I personally wouldn't be comfortable about being on it. I'm going to hold out for a few more months and see how things go but will read the articles. I've come so far I don't want to give up now. We can't let this damned illness rule our lives and dreams and my dream at the moment is to hold my baby in my arms. x

[Victoria-NRAS Partner Moderator NRAS]

Hi Janeye

So sorry for your loss and hope that you have a successful pregnancy soon.

I see that Earthwitch sent you a link to an article on the OTIS website, but it appears to be their ingo on Humira rather than Enbrel, so here's the correct link in case it is of interest:

otispregnancy.org/files/eta...

I appreciate that you do not want to risk the health of an unborn baby when the evidence is unclear, but I think it may be worth considering. They obviously cannot do trials on pregnant women, so information comes as and when women get pregnant while on these drugs, and it can therefore take years before a drug would be considered relatively safe to take during pregnancy.

I also wonder if some of the older drugs like sulfasalazine and hydroxychloroquine, which are used more commonly during pregnancy might be an option for you?

Our article on pregnancy and RA, which includes information on medication might be useful:

nras.org.uk/about_rheumatoi...

Kind regards

Victoria

(NRAS Helpline)

[earthwitch]

Its definitely your decision to make, and if you feel it is worth going right off drugs, and can cope with that, then that's really great.

The problem with assessing "medical evidence" is that it can take quite some time before enough evidence is gathered, especially on relatively new drugs, for doctors to be able to definitely say what the risks are. This isn't such an issue when negative effects show up in studies quickly (because then its quite easy to see that a drug may be risky), With something like humira or enbrel they just haven't recorded enough case studies to make a statistically significant judgement on a lot of the risks. In plain language: if you look at ten people and one has problems, that seems like quite a high percentage. If you do a lot more studies and look at a total of 1000 people and the only one that had problems was number 9 in that first study, but there weren't any more in the rest of that 1000, then its very much lower risk than they might have thought first off.

Thats the kind of statistics they had for things like anti-tnfs triggering cancers so they had to err on the side of caution and suggest that the risks were much higher at first. The more studies done, the more they realised that the risks are actually quite low.

There is also the general medical viewpoint that any drug is risky in pregnancy until proved otherwise, so even if quite a lot of studying had shown that there was a low risk, it wouldn't become standard medical practice to accept that until it really had been shown to be virtually zero risk. Thats where good information and patient choice comes in.