Preparing for pregnancy

LignumVitae

Hello everybody,

Sorry I haven't been around for a while and sorry I haven't replied to messages. I normally get email notifications of PMs but haven't done.

Anyway...preparing for pregnancy means coming off your meds and that is inevitably very very hard. I tried twice, the first time was a disaster in more ways than one, the second time was a resounding success!

I came off methotrexate with the help of an exceptionally good Rheumy nurse. She explained my options and I kept her up to date with where things were up to. I think that really helped me so if you can, I really advise you to get in touch with your team and have a point of contact like that.

I relied on IV steroids, kenalog (I think) suited me best and I had them at 4-6 week intervals. I also used paracetamol and was on Celebrex until a fortnight before I started trying to conceive. I managed a three month withdrawal and it was hard, so hard but so worth it in the end.

I think what I learned from my first attempt is that something had got to give. You can't expect to carry on as normal while you are unmedicated. I tried hard the second time to give me plenty of time out sitting in front of films, in the bath, anywhere where I could stop rushing around or force myself to relax and stay still. I also made sure I ate very well and got to know my cycles very well. I tried to see the time I had to wait in a positive light to be as prepared as possible that way for trying to conceive. It's important too that you are fully supported, Mr LV and I kept it secret from everybody (so be ready to tell lies about your condition if needs be, nobody could understand why I was suddenly declining at a rate of knots). Mr LV was a star, loads of support and understanding even at the most random teary moments!! What I guess I'm saying is be kind to yourself and ask at least your other half to give you that same kindness (and maybe be brave enough to tell you when you are doing too much or expecting too much of your body).

I really hope this helps and answers some questions. I'll try to get back on again if you have any questions etc.

I think being as positive as possible and keeping your eye on the prize is so important. I say that as somebody who did sit at the top of the stairs sobbing one night because it all hurt so much and I felt so tired but be ready for that and for picking yourself up. I also think it's important to remember that you will have to make allowances for what you can do or how well you can feel without meds is vital for getting through the withdrawal. I had tricky times when pregnant and also when arthritis reared it's head after birth but none have been as bad as the withdrawal period and yes, it was so so so worth it!! I won't be doing it again though- two little crawling monkeys is plenty for me and I don't want to risk triplets!!

Much love LV xx

villier

Lovely to see you LV, it is so kind of you to take time out of your busy schedule to post your experience, I am sure this will help the members that would like to try for babies. Hope you and the bubbas are doing well.................take care.................Marie xx

Starburst

That's so kind of you to share. I wonder if this could be made a 'sticky'?

Hope you and the lovely girlies are well. xx

barbara12

Lovely to see you LV, there have been a couple of people asking about starting a family recently, so I am sure this will be very helpful and very kind of you to go to the trouble and having to looks after the twins.
xx

lisacook315

Thank you so much for taking the time to post.

I'm 29 currently 11 weeks off meds and in a heap of flares. They started at week 9 and haven't stopped. Just got back from the GP and have a course of oral steroids to start. I was on Humira so have 5 months to wait before ttc (11 weeks down, 11 weeks to go)!

I was in remission pre withdrawal so it's all come as a bit of a blast from the past for me. You really have inspired me to keep going. I said to my GP today I don't know if I can keep going but I'll keep my eye on the prize!!

My Rheumy team and GPs are amazing, being referred to a dietician for diet advice, started reflexology and stopped the alcohol as it adds to the flares. I'm getting a good nights sleep but work is hard...the fatigue is getting to me but don't want this to affect my job!

I need to take stock of things, stay positive and focus! I can do this, it's for the greater good! I'm so glad it all worked out for you, I'm hoping I conceive quickly but who knows what Mother Nature decides! I had a big sob last night and Mr Cook was amazing, he had to wash my hair and dry it last night bless him. His Mum asked if he had to blow dry it into a style which made me laugh!

Thank you LV, it's so nice to hear from you xx

stickywicket

Hey, lovely to see you again Give the girls a cuddle from me. Oh OK - and Mr LV

Cariad71

Hi LV and thanks so much for taking the time to post, nice to hear from you.

It really is an inspiration hearing from someone who did it successfully.
I saw my rheum consultant today to discuss options as oral steroids not controlling things well. He injected my foot joint with steroid because its been quite bad. We discussed options but in terms of DMARDs I have very little options really, even if I was happy to take them during pg. I can't have sulfasalazine and hydroxychloroquine isn't really effective for what I've got. He said azathioprine is given in pg but only really when benefits outweigh risks such as in lupus or crohns where flares are actually harmful to the baby. So his advice basically was - get on with getting pregnant! I've been off the mtx more than a year so im safe to start trying, it's just it wasn't good timing to start now for other reasons but I'm going to have to get my priorities right and realise I can't plan it all perfectly like other people do!

Lisa - I defo know what you mean about blast from the past because I was so well controlled before this! I'd forgotten what a bad flare was like and I feel like I'm sort of having to accept that I've got a chronic disease all over again!

Work aren't being very sympathetic at all which adds to all the stress and makes it so much worse. when I struggled in today after my appt hardly able to drive or walk because of the combination of SI pain and my foot having just been injected, I made the mistake of expecting a tiny bit of sympathy/understanding! I Was supposed to be working all weekend and didn't go down too well when I told them I need to rest tomorrow and can't work! They sort of said 'oh well could someone drive you in?!' Erm, its not just about the driving, I'm in agony, exhausted from not sleeping due to pain and fatigue and stressing about this and I'm working 12 days in a row! They just have so little understanding of the whole thing :roll:

Going to give my husband the news when he gets home that his services will be needed sooner than he thought! I think he'll be pleased because I could tell he was disappointed when we discussed putting things off for a couple of years. So the journey continues....

Cariad71

Ps. Lisa what dose of pred did they prescribe? I hope they work for you, they took a while for me and seem to be wearing off a bit now but I think most people have a better response from steroids than me, fingers crossed for you xx

lisacook315

Hi Cariad,

Work need to be understanding for you.... I work in HR, you'd definitely be covered by the equality act so they'd need to make reasonable adjustments for your condition. It's the lack if sympathy that's the upsetting thing though! Why can't people just be human and understand. How comes you work 12 days straight, are you in shift work?

I'm prescribed 25mg prednisolone for 1 week then back to my Dr next Friday. Glad today's app gave you some direction and hopefully some relief with the steroid injection. We can keep going!!

So happy you are going to ttc, how exciting for you xx

Melrymax

Ahhh lv! I wish there was a post like this when I was trying and pregnant with number 3! We'll done xx