Hi -I am a 29 year old female, who was diagnosed 4 years ago and recently found it hard to cope with flares every 3-4 months. I always try to carry on, fitting everything in like i used to, but it's not always easy and i hate to disappoint anyone.
I have literally just found this site after deciding that I need to meet people in the same situation as me and hope to find a local support group. I wish I knew about it ages ago!!
Main worry i have now is babies- I have ecently got married, and we plan to start a family in 2 years, one of my main concrens is the range of information about the effect methorexate has on fertility? Also cant imagine how hard it'll be raising children and being I'll. Every source i look at is conflicting...x
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ciyoung
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there are some young mums on here who will chat to you.. do not try to get pregnant whilst taking methotrexate.. it would cause horrid birth deformtities.. assuming and foetus was vaible.. you would have to speak to your consultant re this issue! by virtue of trying for a baby almost all medication would have to be stopped paracetamol after first trimester is safe, and I believe in exceptional circumstances steroids can be used in pregnancy(oral)
methotrexate in its own right does not afffect fertility but if taken and a child is conceived the results are as my above answer.....
Hi I am 23 and in the same situation I am looking to start a family in the next 3-4years and my consultant has informed me I have to be completely free of MXT for 6 months before trying to conseve and I am also on CIMZIA there is no evidence to state it can harm the child but its not worth the risk and this also has to be stopped approx 5-6 month before conseving.
They reasurred me that I am not the only one in this situation and they have it all the time and not to worry as you will be seen nearer the time to discuss this. I also enquired as it if this affects fertitlity and was told there is no evidence to state any of the drugs will harm your chances of having a child. But if in doubt speak to your consultant or a nurse specialist. Hope you find this helpful
Kelly x
Hi ciyoung
I really feel for you, but as Alison says there are lots of mums and new mums on here who will be able to help and support you. Have you tried the NRAS site as there is some information on there too, both in the forum and other places. I wish you all the very best and sorry I am not much use because I am a 55 year old mum of 23year old who was only properly diagnosed last October.
Keep posting, I am sure you will get the help and guidance you seek.
Thanks everyone - I know you're body needs to be 'clean' fir 6 months before - not quite sure how we're supposed to work during that time though!! Seeing consultant in 3 weeks so will let you know what he says Kelly.
Think I'm going to look for a local support group just to share experiences with people like us, who really understand!
CIMZIA is really good started to notice improvement about 8 weeks into treatment, at the moment im doing really well, CIMZIA is great as you only have to inject every 2 weeks and I feel great. Had a review with my consultant recently and the results show i am 36.7% improved in 3 months, its changed my life and i would recommend it to everyone!!
I thought I would share my experiences of pregnancy and being a mum with RA. I am 35 and have 2 children (5 and 20 months).
I was diagnosed with RA a year after the birth of my first child. I wanted another quite soon so didn't start methotrexate (but I believe as others have said you need to wait 6 months). I started on Hydroxychloroquine and Sulphasalazine as it is safe to conceive on these. However hydroxychloroquine didn't agree with my stomache!!
I was told by my consultant that most women go into remission when they are pregnant as your body suppresses your immune system so that you don't reject the baby. However I was one of the exceptions and continued to flare all the way through. I continued to take Sulphasalazine all the way through - it is not licensed for use in pregnancy but my consultant said hundreds of patients have taken it and there are no known side effects - it is only an ethical thing about testing a drug on healthy pregnant women that stops it getting a license. The only thing about taking a non-licensed drug is that you need to be under the care of an obstetrition but I found this to be a positive thing as I had loads of ultra-sound scans and loads of free pictures (in our NHS trust you usually only get 2 scans and have to pay £5 for pictures). I believe that hydroxyxhloroquine is licensed for use during pregnancy because it is also used to treat malaria and so has been tested in africa. I also had several steroid injections. There is no problem with these as they exactly the same as they use routinly in twin pregnancies. The only effect on the baby is that it matures the lungs earlier so if by any chance they were born prematurely they would have a better chance of survival (hence why they give it to twin pregnancies where the risks of premature birth are greater).
I also had 2 miscarriages between the 2 children - after the second my rheumy consultant decided to do some blood tests (normally you can't get any tests for miscarriage until you have had 3 successive ones) because she said occaionally there is a link with RA. The tests showed that I did have (slightly) 'sticky' blood so I took low dose aspirin throughout my pregnancy. I don't know if it is possib;e to get these blood tests done before you start trying to conceive but it might be worth asking.
I breastfed my son until he was 13 months and continued to take sulphasalazine and had some more steroid injections. I was told there was only one reported case of a baby developing a rash and when they stopped breastfeeding it went. Therefore my consultant said she was happy for me to breastfeed and take sulphasalazine as long as I was aware to look out for a rash. We had no problems! As for the steroids my consultant said that only very minimal amounts would pass through in the milk.
As for being a mum with RA it is fine. You just need to be a bit creative how you do things. CHildren and babies are very adaptable and can be quite independent. As soon as my son could crawl I stopped carrying how up and dwon stair - I let him crawl and follow behind to make sure he doesn't fall. I pick him up by putting my arms under his arms and he clings on. My main advice would be make sure you test lots of different pushchairs. You need to find a lightweight one which easily folds and make sure you check how easy the straps are to fasten and undo.
Hope this helps to reaasure you. DOn't hesitate to contact me if you want any more support.
that is a fantastic supportive answer. that is. good news about sulphasalazine in pregnancy.. methotrexate however is not a viable option during pregancies..foetus usually not viable.. they have had literally one or two survive to birth with horrific deformaties.. it is tetragenic/ mutagenic drug
Hi there,I too like Becky had RA through pregnancy but I hadn't actually had a proper diagnosis they did at first thought I had Lupus. Eventually I did get a diagnosis of ra but it was around 12 mths later and too much damage had already been done to my joints.
I had already been trying to conceive for ten years prior to RA so as you can imagine suddenly getting pregnant after many problems of miscarriages and an ectopic pregnancy my world was turned upside down with this awful disease. I didn't take anything throughout my pregnancy only the odd paracetamol, bearing in mind of course I hadn't had a diagnosis so they didn't now what to treat me with not as though i would have taken anything after all those years of trying to conceive I told my consultant my baby came first and I didn't want to take anything to risk my pregnancy.
Having said all that it was 17 years ago and things have changed dramatically now you can tell just by reading Becky's reply above.
Your consultant will do everything he can to help you along the family route, but I would say that getting your ra under control first is a must. take things one step at a time. When you do have a family you will cope you will learn how to adapt what to look out for .when buying new stuff, and like Becky said letting them crawl when they can using your elbows to pick them up. These are things you will learn as times goes on.
You can read through my bloggs I have written many on family life and how I coped with RA.
Hi. You have had lots of info from everyone. I just want to wish you well. As Julie says, lots of great information from NRAS and if you join the forum you will have lots of people to talk to who really know what you are going through. It is effectively an online support group
Sheila x
Hi
Welcome to Health Unlocked and NRAS!
Local groups are great for support and information. Not sure where your nearest group is but here's the link to the website page nras.org.uk/help_for_you/nr...
Hope you can find a group nearby. They are open to all including non-NRAS members. If you join NRAS, very worthwhile, you will have access to the onlne forum support group as Sheila and Julie mention.
I have had two pregnancies with RA and brought up four children whilst having the disease. It's hard, but rewarding and worthwhile. You adapt, you cope and every day is special. Be positive - stay positive.
Thank you so much everyone for sharing your experiences and advice with me. I really appreciate it all, so pleased to have found this site, so good to talk to others in the same situation,
I live in Windsor and have found a general arthritis support group that I am off to meet on Thursday.
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