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Rank: Member
Groups: Registered
Joined: 12/4/2009
Posts: 10
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Hi everyone,
I'm new to the forum so sorry if this is an old one.
I was diagnosed a little over a year ago, i'm currently on 25mg of mtx weekly injections and also on 400mg daily of Plaquenil. My RA is pretty much under control I would say after a horrid 18 months but i'm pleased it now stable. My last flare up was only 3 weeks ago but was the first for 2months so if it stays like this, its a blessing.
I'm getting married next year and we want to try for a baby as soon as we can, but i want to do it after the wedding as I can't be doing with having bad RA leading up to the wedding and during it!
So i guess my question is, well its more of a concern that i might not be able to conceive. At the moment it's all i can think of. I am seeing my consultant in early april where we plan to talk about our baby plan. I plan to come off the meds early May, and after 3 months i'm going to come off the pill to give my body a break from it, then 3 months after that i hope to start trying for a baby.
I'm scared that when i come off the meds it's gonna be too hard to ignore the pain - and i'm pretty sure there will be some, my consultant says my RA is very active. I'm scared i won't be able to get pregnant.. and generally i'm just scared.
I hate having RA, and i hate it even more knowing it might prevent me from having a baby. Every female's nightmare is knowing that you won't be able to have a baby, it would be nice to know that my RA is going to add to that, but I'm realistic, as my doc told me, I could have problems.
I try to remain positive but at the moment i'ts all i'm thinking about, i'm doing my own head in and i haven't even started trying yet! I am a nightmare, lol.
Anyway, appreciate your advice and knowing what you have experienced with this situation. I'm 29 years old and I'm pretty healthy.. could be fitter but couldn't everyone? hehe.
Thanks again, oh - and Merry Christmas
D x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi D,
Sorry can't offer advice on planning to conceive but welcome to the forum. I'm sure there will be someone on here who will have some knowledge or experience of your situation.
Julie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi D,
Welcome to the forum!
I'm well past the TTC stage so can't help you with that, but there are people on here who have conceived with RA, some more than once, so I'm sure they will reassure you .
I wish you every success with it and look forward to getting to know you.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi D
Welcome to the forum and loads of good wishes for your wedding!
I can't help with ttc but Jenni, Em and Alison are the experts as they have done it!
I'm sure they will be on as soon as they pick up your pose.
Love Jeanxxxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 351
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Hi D, Don't be scared, it might prevent you from conceiving! I was 29 when I had my first child. I've had RA since age 6 and had been on MTX and Indometacin for 10 years or so beforehand. I had to stop both drugs for 3 months (this time lapse is longer now I believe), before trying, but could take Naproxen and Paracetamol instead. Luckily, I fell pregnant soon after 3 months and everything was fine. My RA improved after around week 18 and I only took Naproxen. I gave birth naturally with one shot of Meptid. I did it all again at 31 when I had my daughter but it was harder that time as I had my young son to look after and couldn't rest as before. Everything was fine again, I felt much better after week 18 and my daughter was delivered naturally. RA came back with avengeance about 6 weeks after each birth, but I stopped feeding and went back onto my usual drugs. I'm glad I didn't wait until I was older as I started to be menopausal at 42 which is probably due to RA. Good luck! Carol
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Hello and welcome to NRAS
I am Jenni, 33 and have 3 children. I have very severe RA (with some other things added in for good measure ). I adopted my older 2 because (of lots of reasons but also...) I have severe RA and at the time I was well controlled on the anti tnf trials and you couldn't TTC on those meds.
when the anti tnfs were no longer a goer, I took other drug options. I did ask about ttc then, whether it was worth a try etc and really they said no, my ra was too severe. I needed to wait until I had had a period of time where it was well controlled.
After almost 10 yrs I was not controlled, never had a spell when it was controlled, had a wash out treatment from the leflunomide and MTX and thought we could try, we had fertility tests through the GP under special circumstances and were told that as a couple we had less than 3% chance of conception.
So, sadly, we drew a line.
I was on steroids and was waiting to see the consultant to say I need further drug options as TTC is not an option. we had 2 lovely children and this was clearly our lot.
I then got poorly and went into hospital. the tests came back and told me I was diabetic. the next tests came back and they showed hormonal abnormalities. I thought GREAT! early menopause! thats all i need!
But no!
I was pregnant!
I had Bernice 8 mths later. I was very poorly at the end. but there are many times I have been very very poorly and come out worse than when I went in- but that time I had a Bernice with me!
She is now 2.
You can take certain meds when TTC inc sulphazalazine, gold, hydroxycloroquine, steroids, azothyaprin. Obviously you will need advice.
I took celebrex until the 3rd trimester. Rheumatology were warey about giving steroids. this is because there is evidence (now old) about cleft palate deformities within the first 12 wks. So I didnt take them until the 2nd trimester. Actually gynecology were pretty fine about the steroids- they took me to 60mg when I delivered (c- section).
Bernice was 1 in 1000 babies born with a codeine withdrawal and spent some time in neo natal unit, she had a few probs as she was 6 wks early and very low blood sugar. I was very upset about this as I had been so careful with not taking co-codamol, reduced my dose and took minimum morphine twice in the whole time I was pregnant. They explained it is just one of those things and a stressed mother would have been far more danger than the little doses of codeine I did have every day. Bernice, is 100% normal 2 yr old and full of happy, joyful, 2 yr old ness!
Most of the hairy scarey stuff was due to me having diabetes and now know I have a rare condition called addisons disease (auto immune again) which caused much of the multiple prbs.
For myself. I think u have to be determined ABSOLUTELY that this is what you are going to do. I wont lie to you, it hasnt been easy- for other women it can be easy peasy or tricky to TTC but most do not have an auto immune disease to contend with and you do so it will be more frustrating and difficult because of thinking round things.
I hate having the RA too- personally- could do with giving it all up but after 14 yrs, I have come to a little more acceptance everytime I have a mountain to face (and cry over the loss of my past life) then I get on with things.
I do hope I havent been too negative. None of my life has been plain sailing really- it has certainly never been BORING!! Please PM me about any more, well, private kind of stuff you may wish to discuss.
Lots of love and all the best.
Jenni xx
PS. I got married nearly 6 yrs ago and we had a fantastic day all of us together- hope your day is very special- have you picked a dress?how to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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if you look at my avatar you will see the angel who caused all the trouble! (and great delight to everyone she meets) how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 585
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Hi D
welcome to the forum
where you will have all the help and support you need
take care
Mary L
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi welcome to the forum all best for your wedding i got married 9years ago with RA uncontrolled lol,no kids yet but hoping 2010 be our year. lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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I got married 3yrs ago and we decided to go down the route of TTC 4mths after. I was under the care of a consultant obstetrician because in my previous marriage I'd had a miscarriage (due to still having methotrexate in my system) and a suspected ectopic... I had a laparoscopy which sadly showed blockages in my tubes. There was still a very small chance of being able to conceive naturally but we discussed the other options with the consultant. For us to go down the IVF route I was told I needed to come off my medication.... once I had conceived then I could go back onto certain meds. At the time I was only on anti-inflammatories because my arthritis had been in remission for about 18yrs so started reducing them over 6mths before finally coming off them. Unfortunately I ended up flaring quite bad and had to go back on them... and then in September this year my arthritis came out of remission. I'm now on hydroxychloroquine along with my anti-inflammatories but I understand that hydroxychloroquine is safe in pregnancy. The only time that I believe its not is during breast feeding. We'll still try the natural process because even if nothing happens, the practicing is fun...  I got a lot of support from my rheumatology nurse and luckily for me my consultant obstetrician had an interest in rheumatoid arthritis so understood the concerns from conception to labour. As you're probably aware, methotrexate is a definite no-no for pregnancy.... not only is it a form of chemotherapy (although for arthritis its a much smaller dose), its one of the main drugs used in terminating pregnancies. You also need to allow enough time for it to come out of your system along with the pill... Depending on how long you've also been on the pill for, it may take a little longer for your body to get itself back into a rhythm. I found a couple of forums for TTC'ing ( handbag.com or Damsels.org) but not all of them are set up for women with other medical conditions, and I'll be honest in that sometimes if things do take a little longer it can sometimes be hard reading others good news. One piece of advice I would definitely give is enjoy TTC.... approach it with the notion of que sera, sera... Whatever will be, will be... Sometimes you can be so set on wanting to conceive it gets a little clinical and adds to the stress, which can then affect TTC... so just enjoy it, have lots of fun..... and enjoy the honeymoon  Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopeland Read my blog - Helly Copeland
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hi D welcome to the forum, im Sophie 35 have Ra and Lupus had the Ra 14 years and dx with lupus 6 years ago, i was ttc for 4 years eventualy after having lots of tests discovered that although i was having a regular period i was not ovulating so was put on the fertiliy drug Clomid , got pregnant with in 3 months but miscarried at 12 weeks think this was to do with the Lupus. tried the Clomid again and 6 months later pregnant conceived while on holiday at the time i was on Prednisone, Sulphazalazine and Naproxen had to stop the Sulpha straight away , had extra scans and seen consultant every month through my pregnancy Ra was really good through the pregnancy until i was admitted to hospital with severe sciatica could not sit or lie down could only stand up and was exhausted was put on an Opium based drug as nothing else would stop pain and relax me, was in hospital for six days then home for 3 days and went in to labour my son was born 1 month early, because the pain just felt like i had an upset stomach i stayed at home until i had a show and then rang my mum , partner and hospital , was told to come in straight away, could only have gas and air as i was too far gone, my son was born about 25 minuets later and the midwifes could not believe i had been on my own all morning, think its because i have been use to pain and he was not due for another month that i didn't think i was in labour Lol, had a normal delivery but was very tired after it all, Ra was fine for about 8 weeks after son was born then it went terrible which i had been told could happen, my mum came to live with us and had to help my partner with the baby as i could not move in bed, not going to lie it was very hard, but because i had lots of help we were was able to some how we got through it, my son is 5 next April and in my opinion although some times it seemed like hell especially when all the drugs i have stopped and started since the birth and none have worked and my Ra has caused a lot of damage in my hands , i also had to have a knee replacement last July but it was all worth it , when im down or fed up my son is what keeps me going and i know i am so lucky to have him,
Sorry if i have waffled on a bit.... good luck in ttc and hope you have a wonderful Wedding day
Sophie x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Hi,
I really hope none of these posts will scare you and I am sure you are aware that each and every one of us is different. Our RA will be different and so will the pregnancies, so PLEASE don't be frightened.
Of course you already know that MTX is very dangerous for pregnancy and so you will come off it for at least 3months. There is no guarantee that you will flare but it is likely as the meds are controlling the disease.
In many pregnancies (up to 80%) the RA will be suppressed by the pregnancy itself - I have experienced this five times!
It is much better to enter pregnancy with the RA as controlled as possible....I know this isn't always possible but there is less chance of the disease flaring so quickly.
There will be a window from about 5/6 weeks (maybe longer) after you cease the mtx until 3/4 months pregnant so you may need to take other meds which are considered safe in pregnancy, although no medication os the ultimate goal! (There are a few meds, like Hydroxy, SLZ, Imuran and of course low dose steroids).
I was much younger when I first became pregnant, 23, and the RA was very well controlled and I wasn't on mtx either. In all the pregnancies the disease was exceptionally well suppressed....this is a good outcome and there are many who don't have this ease so one never really knows how the RA will react the body. In between my babies I have flared on and off, sometimes badly and others not at all, and it followed no pattern (as RA often doesn't!). I was able to breast feed my first baby for only 6months but my 3rd and 4th babies for over two years! (bliss!)
Please know that you will be monitored well by the rheumy and we're all here to help and support. Do e/mail me if you'd like to chat about anything...
Love,
Amanda
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Rank: Member
Groups: Registered
Joined: 12/4/2009
Posts: 10
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Hi everybody,
Happy new year to you all.
Firstly, thank you for being so welcoming. This forum really is a brilliant place. Thank you so much for all of your replies, it really helps to hear everyones experiences and different views. I know everyone is different so it's not an easy one to answer. I'm going to be positive and try and get my body in the best possible shape in preparation.
I showed my fiance all of your responses and he was generally touched by the amount of replies and also thinks it is brilliant there is somewhere for us RA sufferers to chat and also find out what other people are going through.
Many thanks,
Dx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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ahh well thats so speical to here that! glad he feels so to. and yourself. yep me same get body good shape all very best. t care melly  cuddly cats make my world seem so much more fun
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Make sure your iron levels are top notch and you take folic acid.
I need extra iron to compliment the diet we follow as i am always anemic.
Love,
Amanda
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
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Ohh i am too old to get preg now ..Hay would,nt it be loveley if you got preggie after your wedding with no trouble  i wish you well and good luck love Christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Newbie  Groups: Registered
Joined: 3/27/2013 Posts: 5 Location: Swansea
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Hi everyone. I've just joined the site and this is my first post. I was diagnosed with RA and under-active thyroid in August 2012, so not long ago. It took ages for anyone to figure out what was wrong with me, the doctors said that it was all in my head :( Anyway, I'm getting married this September and we want to start trying as soon as possible. I spoke to my rheummy nurse today and she said that I have to come off methotrexate three months before we start trying. I am so worried about coming off the medication. I don't cope well with pain (childbirth should be fun then!) and my work are not supportive at all when it comes to my flare ups. I'm scared that when I come off I'll be in so much pain that I won't be able to work and I'll be fired. I have had a lot of time off work since August because of this already. Along with this I'm worried about not being able to conceive. I've been wanting children since I was 4 and got my first doll. I'm trying to remain positive as I know that being worried and stressed won't help at all but I can't help it. I think this forum is going to help me so much. xx Mrs A since 14/09/2013[/size]
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Katie Welcome to the forum but sorry you had to have RA to find us. There are lots of "mummies" on this site who also have RA and I am sure they will be able to offer you all sorts of advice. I must admit that having to come off the Methotrexate is going to be scary for you and with the stress of a wedding and work you are going to have your work cut out. Decent pain relief is a must and lots of rest is essential. Keep positive as I believe this plays a big role in how you cope with RA. I had my Daughter 17 years ago but at that point had not been diagnosed even though I have possibly had RA all my life. I did have trouble conceiving and spent three years on infertility tests and treatment. They could find nothing wrong with either of us. In the end we stopped trying at the right time of the month, stopped worrying about conceiving, and decided to make the most of our lives albeit without children. Three months later I was pregnant. I have spoken to so many people since who have gone through a similar thing. It is easy to say but try not to put you or your new Husband under pressure to conceive to a timescale and hopefully you will find a little miracle is on the way before you know it. Keep posting and we look forward to getting to know you. Jackie xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Welcome Katie I've just popped on the thread here to say that there are alternative meds that are safer during prg Steroids Hydroxycloroquine Gold Azothyaprin Sulphazalazine Some consultants will even allow women to ttc on humira (but at the moment the evidence is sketchy there) So you won't be left with nothing You can have the (revolting tasting) wash out treatment so can start ttc earlier if you didn't want to wait the 3 months. Sorry your work are rubbish How will they take the maternity leave things? Perhaps sorting work out and being less stressed will help you in general and ttc? Sending support Jenni xx how to be a velvet bulldoser
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