Desperate for advice

[Janeye]

Hi all.

I'm beginning to get to my wits end and really don't know which way to turn. I've been on here a few times asking for advice and need some more please. I've been trying for a baby since last October, managed to fall pregnant straight away, sadly miscarried and am back to trying again. At the same time I'm having a really bad time with my joints particularly my knee which is really having a massive effect on my day to day life due to the synovial lining being so inflammed. I'm on a low does of steroids but they aren't touching it and can't be on my regular enbrel whilst trying to conceive. Another option is to try sulfaslazine which I took many years ago when I was first diagnosed but didn't have much effect and made me feel very sick. You can take this whilst trying to conceive but it can take a few months to get into the system.

I'm at a point where I don't know what to do and think it could be time to give up trying and go back on enbrel to try and get some control over my life. At the same time the thought of not trying for a baby makes me so sad as it's what I really want. I feel so angry that this illness is having such a huge impact on my life and feel like it's stoppping me from having what I want and this stage in my life. I'm 34 and know that time is ticking by.

If anyone has been in the same boat I would love to hear from you as I don't know where else to turn.

Wishing you all a pain free day x

[claireyj]

Hiya read your blog and feel so sad for you ....I really don't know what to say apart from just hang on a bit longer keep trying, so many people say when you are pregnant all the pain of RA goes only temporarily but at least people can enjoy pregnancy ...I really would grin and bear it and perhaps just try the Sulphasalzine you might be ok this time and it has to be worth a try especially if in the meantime you get pregnant . Sending you a big hug and loads of luck Claire xx

[Janeye in reply to claireyj]

Thank you. I'm going to see how I get on this month and speak to the nurse again to get some more advice as I'm so miserable at the moment. I'll keep you posted.

[Josie2]

Oh how awful for you.

As claire said just try and hang on in there and i really hope you fall pregnant soon.

Its awful when this dreaded disease stops us from doing the things that should come naturally.

Take care

Jo

Xxxx

[Janeye]

I'm going to try. Hopefully this month will be my lucky one. I'll keep you updated.

Thank you for your message x

[selina]

Sorry, no answers but wanted you to know how much I hope this all works out for you. Here's to the future - and be kind to yourself x

[Sophie123]

Hi I'm like Selina. Just wanted you to know I'm thinking of you and so hope all works out for you.

X

[HelooB]

Hi. I don't normally post on here but totally empathise with your position. I was on no proper treatment for my RA for 4 years while trying to conceive + pregnant with my two daughters. I resisted the pressure from the rheumatologists at the time to stop trying and go on mtx and so glad I did - I now have 2 beautiful daughters and wouldn't swap them for the world. I managed on Kenalog injections every 2-3 months and hydroxychloroquine. It wasn't great and I have extensive damage in my wrists as a result - they are pretty much fused - but like I say it was worth it. My youngest is now 1 and I'm on leflunomide.

Good luck with whatever you decided. Helen

[Victoria-NRAS Partner Moderator NRAS]

Hi Janeye

Apologies if I've sent you this link before, but some women have stayed on Enbrel successfully during conception/pregnancy. Unlike some other drugs, Enbrel has not been proven to be unsafe during pregnancy (in fact people have had successful pregnancies while on the drug) but currently not enough is known to be able to say that it definitely IS safe to take, which I know can be worrying, but this is stil something to consider. The OTIS website (a US site) has an information sheet about this:

otispregnancy.org/files/eta...

I wish you luck with whatever you decide.

Kind regards

Victoria

(NRAS Helpline)