Pregnancy and biological treatments

Cariad71

Thanks again Sarah,

From a search on here of old posts I can see I'm certainly not the first and won't be the last person facing this (although it feels like I am sometimes!). I don't feel I can openly discuss it with anyone in 'real life' though, except maybe my husband.

I think I'll try to order the book I've seen others recommend, 'pregnancy arthritis and the road to parenthood' by suzie Edward may, its got very good reviews. I'm just scared it will arrive in the post with the title all over the packaging or something, and knowing my luck be handed to a neighbour! :oops:

I'd like to have kept the whole baby thing quiet and spontaneous like so many others manage to, but with all this planning needed my family all know what's going on and I'm sure my boss and colleagues are suspecting things as they wonder why I'm allowing a flare up to continue for so long without restarting the meth!

Ahh well...

buffycat

hi....

i have two little ones.....age 4 and 2. I came off my MTX in 2006, and started to try for a baby 6months later. I had 3 miscarriages before my eldest was born in Nov 2009. I've always wondered if the mtx had anything to do with the miscarriages. Whilst i was off mtx, the pain was awful....i had steroid jabs and painkillers constantly. It was not easy.

I didn't go back on the meds as was feeding, and then fell pregnant when no1 was 20months. I fed my youngest until she was 2....this helped to keep the symptons away, but had to go back on mtx in Nov of last year.

I love my girls so much, but being a mum with RA/PA is really difficult. Take care....

luv
x

bluefish

Hi just a quick one to say I have RA and was on humira and prednisalone throughout pregnancy and breastfeed for a year. There was another girl on here who did a similar thing. It was a tough old road (lots of fertitlity treatment too!) and deciding to go back on anti tnf after trying for over a year with no meds wasn't easy but I just wanted to say I did it. Advice then (3 years ago) was that it was theoretically ok and it seems like that it is still going that way but understandably when it comes to meds and pregnancy it will never be a green light exactly! It was such a hard decision to come to and has to be down to the individual but wanted to say good luck to all of you x

Cariad71

Thanks bluefish and buffycat for sharing your stories, I'm sorry buffycat I've only just noticed your post on this thread xx

smileymicrobe

Hi I have just stumbled across this post. I have sero-neg RA and am on Humira for over a year.

I am wanting to start a family and spoke to my consultant who said I need to be off the Humira for 3-4 months before trying. I came off it in January and already I am wanting back on as I can't cope with the pain. But I havr come this far no point turning back.

I am just apprehensive about the road ahead of me and what may be. I am glad to see I am not alone and there are lots in similar situations xx

Cariad71

Hi smileymicrobe (great username!)

Nice to meet you. You're definitely not alone it seems there are more people out there than I thought in the same situation right now, and its so nice to be able to share stories and support each other!

How old are you and when were you diagnosed with it? I'm also sero neg inflammatory arthritis but I'm lucky to have not needed anti TNFs yet so I've only had to come off methotrexate. Are you on anything to help at the moment like steroids and/or NSAIDs? If you stopped humira in January then you've done 2.5 months so don't give up now! Hopefully we will all be lucky and (a) conceive quickly, and (b) be in the 75% or so group who experience remission in pregnancy that sounds so wonderful!

Keep in touch xx

smileymicrobe

Hi Cariad71

Thanks for replying sorry I've taken awhile to reply my emails went to junk folder so I thought no one had replied.

I am 29 will b 30 in the summer. I was diagnosed in 2008 when I was 23. I was put in methotrexate but when they increased my dosage it gave me blurred vision and migraines, I was then switched to Arava but again it didn't help much and high doses had side effects I was put back onto lower dose only to have vomiting and diarreha for a full year (not pleasant plus it takes 2 years to go out of ur system for conceiving)

I haven't been taking any NSAID's for bout 4-5 years as they don't agree with me and have damaged my stomach so basically I am on co codimol for pain refief but may as well take smarties lol.

It would b great if everything goes to plan and conceive quickly. The sooner I'm on humira again the better. But I don't no if that will happen for me, I was on depo injections for contraception and have been off them nearly a year now and I'm still waiting for periods etc to return. They said it could b 18 months to 2 years so basically a waiting game.

Hope you r keeping well, how r u findng it off methotrexate? Hope your not suffering xx

Cariad71

Hi again,

It sounds like we've had similar stories as far as diagnosis goes; I'm 29 this year and was diagnosed with sero negative inflammatory arthritis at 21 which was in 2007.

It must be hard for you not being able to take NSAIDs, does that mean you can't have steroids due to the stomach too? I ask because I think most people who come off meds to conceive rely heavily on steroids before and sometimes during pregnancy as they're considered the safest. Have they discussed steroids with you if you're suffering?

I've actually been off mtx much longer than I needed to, since dec 2012. I started coming off it very slowly over a long time, partly because I was doing so well and my symptoms had changed to being mainly spinal/ sacroiliac and I thought it wasn't doing much for me anymore. I also knew I'd want a baby around this age and wanted to see how I did off it. It's only in the last 6 months I've been suffering without it and having a prolonged flare, which has proved that the mtx was doing something! Ive been trying to manage with NSAIDs and steroids in various forms but nothing is really getting it controlled. I dont have severe RA and i feel lucky for that, this impacts on my life enough! I'm now ready to get pregnant but like you worry it will take a while, which is bad enough for any woman who wants a baby but with the added worry of how you'll cope off meds and the damage you'll do your joints in the process, it becomes so much more stressful! I stopped the pill about a month ago after being on it 12 years and I'm worried it will take a while to get my cycles back, so far I haven't had a period . It's good you've been off the depo a year. Hopefully things will settle for you soon. Have you seen your GP? I don't know much about it all but I've heard there's something they can give you to kick your periods back in, and I've been wondering if they would give it to someone sooner than usual if they understand we don't have time on our side due to the arthritis. I haven't been off contraception long enough to go to the GP yet but I probably would if I hadn't had a period after a few months.

I ordered a book called 'arthritis pregnancy and the road to parenthood' by suzie Edward may. She lives in Australia and is a woman with RA who wrote this book because she felt so alone when she was embarking in the journey and found there was no real help out there. It arrived this weekend and I highly recommend it as have others on this forum who've done this before. You can order it via her website if you google her, I just paid via PayPal, I think it cost about £22 with postage.

Xx

jenzie06

Hi
I'm currently 26 weeks pregnant with my second. I've done both pregnancies on steroids (I have had RA since 15yrs and now 31yrs) although I've needed more with the second pregnancy.
Thankfully we got pregnant quickly with both our boys but I found that the rheumy's didn't really know about the drugs. With my first baby my rheumy wanted me off the drugs for about 6 months plus having a wash out (horrible drink which binds to the drugs then gets them out of your system) whereas with the next baby it was a few weeks.

There is a certain amount of grinning and bearing it with being pregnant with arthritis. But with the first pregnancy you can certainly get more rest! I'm now having to keep up with a 3 year old as well as being a lot bigger quicker.

I did have a flare after having my first baby, about 6 weeks in. I wanted to breastfeed for as long as possible but had to give it up so that I could go back on the meds.

Being a mum certainly puts things into perspective and I have to say that I put up with a lot more with regard to the RA. I managed to cope with having my thumb fused while looking after a 2 year old for instance. Though we do do a lot of playing on the sofa or watching dvd's!

I also received help through Direct Payments through Adult Social Care from my local council. I employed someone to help me with the heavy duty aspects of baby care, such as lifting or cleaning. It's not something I am looking forward to with this baby as I enjoy being a 'normal' mum and coping by myself and I don't really want a stranger in my house but it's a necessary evil and I would definitely recommend looking into getting it. Don't be put off by incompetent adult social care if you ring up and ask about it (I had to tell them that they ran the scheme when I rang up a few weeks ago - had a complete numpty on the phone).

Jen

Cariad71

Hi Jenzie,

Thanks for sharing your story with us, I have noticed your name on past threads in the forum when I was searching for 'pregnancy' to see what others experiences had been.

It's nice to hear from people who battled through and did it all successfully, as I'm sure you know you do start to doubt your decision at times when you're suffering without the meds!

I hope you're doing well and looking after yourself xx