Pregnancy and arthritis...help!

becky81

Hi all,

I've never used these forums before, but am hoping that the will be people out there who can offer me some advice and support.

I am 31 year old, and have lived with arthritis since I was 17. On the whole it has been pretty well controlled recently by methotrexate and enbrel. I manage to work full time and do most normal things although my joints are badly damaged from the disease and i do have the odd flare up and slight pain most days. I am at the stage where I am hoping to start a family and am terrified about how my arthritis will affect me and any unborn child.

I came off methotrexate in July and felt ok for a few weeks (led to the hope that I was in remission and didn't need the drugs anyhow!), but the last few weeks were awful and I had to resort to having a steroid injection which I really didn't want to do. I have this week come off enbrel. I am worried about how I will feel now, as the enbrel has changed my life. I will need to do a month off this before we can start trying to conceive...and who knows how long it will take then. I feel worried about taking drugs and what this may do to a child, about passing on the RA to the child and about coping in pregancy and after the birth. I am basically just a but unsure about it all, but so want children.

I am just wondering if there is anyone out there in a similar position or who has been through this who can offer some advice and support.

Melrymax

Hi Becky,
I am currently 30 weeks pregnant, although I have OA in hips. I am led to believe that alot of people's RA goes into remission during pregnancy. I have struggled with this pregnancy but all I keep my eye on is the end product. I am under shared care (midwife and consultant) due to my medication as I still have Codeine and tramadol although I only take them when I am at the point of breakdown as I too am very worried about the effects on the baby: the way I look at it is do I be comfortable now and pay for it when I have the baby or do I struggle now and be comfortable when the baby is here. I have opted for the latter (the main risks are that if I was taking tramadol/codeine regularly is baby could be slow to breath at birth, baby could have restricted growth and baby will withdraw- I work with newborns and it's a horrible thing to see a baby withdrawing) it will be worth It in the end though

L1985

Hi hun

Sorry I cant offer much help as I hadnt started on any arthritis drugs when I fell pregnant. Only thing I can say is my arthritis felt really good towards the end of my pregnancy and I hope this is the same for you. I also felt ok for about 4-5 weeks after the birth.

We are wanting to try for another baby in next 6-12 months and im worried about coming off medication and also about taking medication when pregnant. My last pregnancy I also had uncontrolled graves disease (overactive thyroid) and was monitored every 4 weeks at the hospital. It was like going for an interview each month as there was also 4-5 doctors in the room. I have been told that if I have another baby then the same would happen. I had to go with the flow last time otherwise you would go mad worrying about things and trust what the doctors said. Im sure you would be closely monitored once pregnant and the doctors would know whats safe for you to take if needed.

I hope you fall pregnant quickly and your pregnancy goes smoothly

Lulu xxx

elnafinn

Hi Becky

Stlucia was a member of this forum, some time ago and she started a blog in October 2011 re: JIA and TTC/Pregnancy.

http://www.operationuptheduff.blogspot.co.uk/search/label/the beginning

You may like to read about her journey.

I wish you all the very best and hope you conceive soon.

Elna x

tkachev

I had my daughter when I had R.A. I didn't suffer badly it was afterwards it kicked off and very suddenly so be prepared with a pre-booked appointment with your rheummy to keep an eye on any changes.
My daughter was in good health and the arthritis didn't cause her any problems.
Best of luck
Elizabeth xxx

dreamdaisy

Oh, wouldn't it be lovely if we could have everything we wanted in and from life, including cast-iron guarantees about what the future holds. I chose not to have children because of chronic ill-health I experienced as a child thanks to the genetic bullets passed on my both parents (who dodged them). If you want your own child then going without the meds is necessary and there is a chance the arthritis will behave during pregnancy but it's more than likely to return and would you be able to cope? These are big, unanswerable questions because it's all based on guesswork - as are most of life's big decisions. Pregnancy can be achieved, who knows if your child will inherit the arthritis but if they do, then no matter when it strikes, you will have knowledge, insight and understanding about their future struggles. Good luck with it and I hope it all goes well for you. DD

Soretoe2

Hello Becky,
I just wanted to offer you my sympathy and support. I had two babies over thirty five years ago. I managed to stop all meds with my first son but did have to go on back on meds with my second son at about 6 months as I was really poorly and had to be hospitalised for the last 2 months, he had to be born early due to this. He was born a bit floppy but it soon wore off. He was then absolutely fine. They are both now strapping 6 footers with successful careers and lovely families.
It was a very uncomfortable and difficult time for me but my two babies when they finally arrived made up for every single moment of it all.
I now have five little grandson's as well as a bonus. So far none of them have the gene, whch is quite amazing really.
I wish you well and hope that with all the modern maternity care available you are able to have a wonderful outcome.

Hello L1985, I also had graves disease just before I fell for my second son. Had the RAI , carbimazole and propranolol treatment. Then went underactive and have been on Thyroxine for 34 years now. As long as you are monitered ok for your T levels there is usually no problem with pregnancy on that score. If your first pregnancy was ok then there's no reason why your second one shouldn't be.

Best of luck to both of you. Joy.

Merryn1

Hey,

My arthritis seemed to calm down when I was pregnant, but to be on the safe side, I ordered some bespoke shoes and those insoles for your feet. Most of my pain is in my feet and back to those really helped. I carried on using them after I had my first baby and they really are great. You can get amazing bespoke shoes from lots of places and the insoles I used were clinical tested to help with arthritis, lupus etc... website was www.insolesbyhappyfeet.co.uk.
The shoes I had made were from Taylors and Son's shoes - you can just google it and it should appear!

Merryn x

L1985

hi joy thanks for the message I chose to have a total thyroidectomy so I'm hoping that the thyroid will be less of an issue this time round .... fingers crossed.

becky81

Thank you all for your comments, it is just nice to hear from other people who have been through it and can understand my concerns. To hear that some of you now have healthy children (and grandchildren) spurs me on.

The tip on shoes is one I'll follow as I have awful trouble with my feet and ankles and am always looking for places to get decent shoes from.

I had convinced myself that as soon as I was pregnant my symptoms would dissappear which my rheumy also seemed quite certain would be the case, but from your reports I see I need to be ready for this not happening. I will keep hoping that temporary remission does happen, but at least it wont be a shock if it doesnt. If we can conceive though, all this pain will be worth it.

Thanks again everyone. Any other tips or advice would be greatly appreciated.

Bx

Soretoe2

Hi L1985, you're very welcome. I'm sure since you had the surgery you will be absolutely fine if you try for another baby.

Hi Becky, today I had a lovely cuddle with my 13 week old grandson, nothing to beat it. All my 'sore' toes are crossed for you to have some good news sometime.

Good luck to both of you. Joy

stickywicket

I'm surprised your rheumatologist implied remission was normal in pregnancy. It happened to me with my first but the second was a whole different ballgame.

andreaH

Hi Becky I have had ra since childhood and been thru one pregnancy, my son is a healthy 3 yr old. I am on metho and enbrel (etanercept). I came off metho for 3 months before (had miscarriage) and i was only told to stop enbrel when i knew i was pregnant, so shocked to hear what you say. I really went into a spiral once off the enbrel, i had steriod injections which didnt do much and landed on taking steriods throughout my whole pregnancy. Cant believe they also said to me i would be in remission, it was so hard and so painful in the beginning, i would not have coped (or been able to walk) without the steriods.
I am thinking of having another baby, so am off the metho, which i am coping with, but one week goes by and i desperately need the enbrel, so really dont know how i will do. dont want to do steriods again but feel i would need something. the doctors arnt that supportive but the nurse was a bit better. i was hoping they would already start me on other pain meds but that has not happened.
dont expect remission, but if you get it great.
how is it going?

andreaH

Hi Becky I have had ra since childhood and been thru one pregnancy, my son is a healthy 3 yr old. I am on metho and enbrel (etanercept). I came off metho for 3 months before (had miscarriage) and i was only told to stop enbrel when i knew i was pregnant, so shocked to hear what you say. I really went into a spiral once off the enbrel, i had steriod injections which didnt do much and landed on taking steriods throughout my whole pregnancy. Cant believe they also said to me i would be in remission, it was so hard and so painful in the beginning, i would not have coped (or been able to walk) without the steriods.
I am thinking of having another baby, so am off the metho, which i am coping with, but one week goes by and i desperately need the enbrel, so really dont know how i will do. dont want to do steriods again but feel i would need something. the doctors arnt that supportive but the nurse was a bit better. i was hoping they would already start me on other pain meds but that has not happened.
dont expect remission, but if you get it great.
how is it going?

jenzie06

Hi Becky!
I'm 29 and had RA and fibro since I was 15yrs. I've also had a baby, though now he is a bouncing 2 and a half year old! He was also the first forum baby, the support from here was brill.

I came off all meds during pregnancy apart from a daily dose of steroids and regular paracetamol. It wasn't easy but I did it. Now contemplating doing it again as Harry (although hard work) makes me laugh every day.

I also worried that I would pass on my RA to Harry and worried about the effect of all the meds I've taken over the years. I was told that there was about a 5% chance of Harry getting RA. I am pleased to say that he is fine (apart from glue ear - now resolved with an operation to put grommets in and he's due to be circumcised in december as he has winky problems - won't be a problem if you had a girl!).
I would say the hardest part is the first 18months physically as there is a lot of lifting and bending. But I received help from my local council through adult social care. I employ a 'parent enabler' who's role is to help me be a parent and to ensure that my son isn't disadvantaged by my disability. Your local council should have something similar but they may deny all knowledge. If you have trouble then get in contact with the disabled parents network (they have a website). Although it might be useful to visit just for other info they have.

The pregnancy was ok, I wasn't working so I could rest as much as I needed. I would definitely take the time to relax because as soon as your bundle of joy arrives then you don't get to relax too often (although in the first few weeks they don't do much but you are usually not able to relax anyway!).

I saw a gynae consultant during pregnancy as I was taking steroids. The only complication was I needed an injection of steroid during the labour. Can still remember the midwife coming in saying that this inj would hurt a lot (apparently I said compared to what?!) I had been having full contractions every three minutes for 12 hours by that point. I was also only allowed to push for an hour as they were concerned I would get tired. I saw this as a challenge and did it in 45mins!
I also managed to breast feed for about 3 months which I was really pleased about. Next time I want to bf for longer.

Hope this helps and feel free to PM me if you need more info.
Good Luck.
Jen x