TTC with rheumatoid arthritis or similat

(18 Posts)
cakesandphotos Wed 17-Feb-16 11:30:19

Hi all. Just wondered if anyone is in the same boat as me. Just started TTC and I've been off meds for 4 months now and my gosh, everything hurts so much! Apparently it goes into remission once pg but for now, ouch! Hoping we conceive quickly!

HereIAm20 Wed 17-Feb-16 11:38:31

Good luck. My friends had to cope with this the other way round though. Husband had to come off his meds. They had 3 rounds of IVF the first child but managed to conceive naturally in the first month of trying with their second. So good luck and wishing you a swift conception x

FuzzyOwl Wed 17-Feb-16 11:39:48

Good luck cakes. I have a couple of autoimmune conditions and, like you, came off meds to conceive. Mine did go into remission (I think around 70% of women do) but it took a few months to do so.

I've my second baby now and I've RA for 30 odd years. Th first pregnancy wad easy, I was young but the second time I tried to get pregnant, man it was tough. There are meds you can take when TTC.. enbrel for example was allowed by my doctor. But the difficulty we had was that my body was in a flare and you will find it hard then.

Talk to your doctor about your needs, eat well,relax and take it easy

wonkylegs Wed 17-Feb-16 12:10:27

Hi cakes I'm currently 28wks pregnant and this is my second baby (3rd pregnancy) with RA.
Unfortuntaly there is no guarentee that you will go into remission in pregnancy - I'm one of the unlucky ones that still has RA throughout.
In my first pregnancy I was on MTX and was told I needed to be off it for 6mths before ttc, we then fell pregnant within the next 6mths. I was on steroids whilst TTC & whilst pregnant which helped a bit, although I hated the moon face they gave me.
This time round I was on Humira & MTX before starting to TTC, once again I stopped the MTX 6mths before but could keep on the Humira until pregnancy was confirmed this really helped especially as this time round it took 2years to concieve (late loss) and then a further year (current pregnancy which is enthusiastically kicking me in the bladder as I type), I'm on steroids again but a lower dose than last time and I think that's down to being under better control up to conception. I am in pain but I see the physio and am having hydrotherapy once a week (heaven for 30mins)
I can honestly say it's hard but once you get to cuddle your baby it's soooo worth it.
Don't be afraid to take it easy, ask for help and look after yourself, pregnancy can be tough, pregnancy with RA can be even tougher. I was told however when I was in labour with my son that I had a very high pain threshold which I guess is many years of RA pain showing how tough you can be.
I'm having an elective section this time round as my hips are shot to pieces and they are worried about further damage so hopefully it will be a bit more serene.
Good luck, it may not be easy but you will be fine.

cakesandphotos Wed 17-Feb-16 13:31:48

Thanks for the replies smile it's great to hear from woman that are doing it smile I am quite Young (27 on Tuesday) so hopefully we won't have any problem conceiving. I'm just desperate to be in that 70% that go into remission. I'm so sorry that's not the case for you wonky sad
The doctors and nurses haven't offered me anything that I can be on while TTC. I take naproxen and paracetamol which is about as effective as a mosquito biting an elephant. I have an appointment tomorrow so maybe I'll ask then. I have the steroid injections but they can only give me one every 3 months and they only last 2-3 weeks.
wonky do you get your hydrotherapy on the NHS or do you have to go privately?
Fortunately I've gone part time so I have less running around to do (I'm a nanny)

thisisbloodyridiculous Wed 17-Feb-16 14:24:20

Hi cakes I'm ttc #1 have ME, JHS & off my meds. It's so bloody hard! Definitely sympathise I am struggling sad hoping I get BFP soon!

thisisbloodyridiculous Wed 17-Feb-16 14:25:57

Oh and I'm with you on the naproxen it's utter crap.. although marginally better than paracetamol on its own hmm
chocolate

I went into remission on first pregnancy when I was 25,I didn't in 2nd pregnancy aged 34 so I wonder if age related?

cakesandphotos Wed 17-Feb-16 15:44:34

ridiculous it's all going to be worth it in the end!
The doctor also gave me tremadol which is good but obviously I can't take it while we're TTC (at least I don't think I can…)
mountain how did you manage the pain through your second pregnancy? I'm 27 next week so if it is age maybe it'll work for me! smile

wonkylegs Wed 17-Feb-16 15:46:33

Yes my hydrotherapy is on the NHS but I suspect it's rather trust dependent - the nhs trust I live in has aquanatel sessions in the local pool but no specialist hydrotherapy. The bigger regional hospital where my consultant is and where I'm having my section has a rehab pool and specialist physios.
I'm on oral prednisolone rather than steroid shots - started on a low dose and ramped up as I needed more. For me I have so many joints affected a more generalised approach works better. On first pregnancy I was on 30mg a day, this one I'm just about managing on 12.5mg, although this recent cold snap + hitting the 3rd trimester has floored me a bit. I'm trying to keep the steroid dose down as its given me gestational diabetes which is just another PITA side effect and means I'm having to watch my diet too. I'm craving a jammy doughnut right now which is the ultimate GD sin (carbs + sugar) - I've been assured it'll go once babys out - so I'll be having a celebratory doughnuts & G&T then 😄
I was 29 in my first pregnancy I'm 37 this time, my RA flared more first time but I didn't have as much joint damage that time round.
Once you get to this stage in pregnancy you can't take any AIs as they can affect the baby's heart so it's just paracetamol and steroids - some days I think I could swap the paracetamol out with smarties for all the good they do.

dynia Thu 18-Feb-16 14:03:15

I have SLE and am on hydrocloroquine which is safe for pregnancy but am a bit concerned about adding to my pain levels and fatigue.

FuzzyOwl Thu 18-Feb-16 19:02:46

Cakes when I was ttc and during pregnant my doctor was ok with me taking codeine, hydroxychloroquine, amitriptyline and steroids. I am ttc again now so trying to avoid meds, but it is difficult when everything hurts so much.

cakesandphotos Thu 18-Feb-16 20:59:45

I saw the nurse today and she said some things are ok to take if you've been on them a while but it's not wise to start anything now. I think for my own piece of mind I'd rather not take anything really.
How do you find managing your RA and a baby?

wonkylegs Thu 18-Feb-16 22:09:25

I found having RA with a baby was a bit like life really, sometimes you need to find what works for you rather than what other mums did.
My friend suggested a sling which really helped when I found carrying him difficult. I chose my pram because it was light to carry, easy to collapse but also was sturdy enough for me to lean on.
We didn't bathe DS everyday because I couldn't safely do it on my own so needed DH to be home, so we developed a different bedtime routine.
I combi fed (breast, expressed/ formula bottle) so that when I was struggling DH could easily take over and I could go back to my drugs when I couldn't cope any more.
I had changing stuff set upstairs and down so I could change baby easily without moving far. I had lots of clothes (cheap) so I didn't have to do loads of washing and it could wait til weekends when DH could help.
We didn't use stair gates as I couldn't open them, we used cupboard safety locks with magnets as the catches we too fiddly for my hands, I have a good lockable medicine cupboard which fits my sharps box in away from inquisitive hands.
I spent a lot of time on the sofa having cuddles. The nice thing about small babies is that when they are tiny, apart from sleeping, feeding and changing you don't HAVE to do much.
We chose to have a big gap as I couldn't have coped with a baby and a toddler.
I wish I had been more accepting of help when he was little and I will this time round but that's partly my personality.
Just remember with most things you will find a way to muddle through but don't be a martyr, accept help when it's offered and don't get caught up with the right way or wrong way. As long as you and baby are happy and healthy you'll be fine.

wonkylegs Thu 18-Feb-16 22:13:15

You might want to check out this book , I got a copy because I contributed to the research for it www.suzieedwardmay.com
Some of it is common sense but also nice to see how others cope and also that your not alone.

JellyTipisthebest Fri 19-Feb-16 05:22:52

This is a great blog .
I was on salazopynine when I had my second but it made morning sickness worse so I had to come off it, wasn't able to go back on it until baby was not being fed any more.

I would set a time limit of how long you will stay off the drugs, not being able to move is not going to help you get pregnant. You could then tell you consultant that you putting trying on hold until you get sorted again but could you be put on something that if you accidentally got pregnant it would't be the end of the world.

I had to sell my travel system and get a new one at one point as i couldn't work the car seat handle. There are lots of good seats and pushchair that are easy to use. I had a d ring sling that I used to get the baby upstairs so I had two hands free.

cakesandphotos Fri 19-Feb-16 14:29:20

Ive been off my medication for 4 months now and I've worked as a nanny for all that time with kids from 13 months up to 7 years so I'm not massively worried about being able to pick baby up etc. I guess I'm concerned about the breast feeding and that the doctors say if you go into remission it usually comes back with a vengeance about 6 weeks post delivery. That's the bit that scares me!

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