When I was diagnosed, one of the first things my rheumatologist made clear to me (when he could get a word in edge ways around my tears and incomprehensible mumblings) was that this was a manageable disease. That it might take months or years to get it under control, but that I would go on to lead a normal life. Since then, distant family friends have passed on similar messages - a scout leader friend of my Aunt and Uncle who takes part in the scout camps every year; a friend of a colleague who does Zumba classes three times a week and loves hiking. Right now that all seems unimaginably far from what I am capable of (and in the case of Zumba... I'm not sure I would ever want to - I've seen the videos!)
But, although of course we are all different and will manage different things, it plants a seed of hope in me that things that I once thought normal day-to-day activities, wont always seem like such mountainous impossibilities.
There is one thing, however, that was explained to me very clearly on that first day, which I cannot imagine ever being part of a 'normal life', and as a 28 year old female is hugely frightening: that due to the toxicity of methotrexate, planning a family was going to be a very difficult experience. I hadn't yet considered when exactly I would like to try to have children, but to be told there and then in the consultant's room, that I must not fall pregnant on MTX, and were I to want to plan a family I would need to be off the MTX for a minimum of 6 months before even starting to try, seemed to take the magic away.
A few weeks later, during my second stay in hospital, one of the consultants talked to me about a drug they were considering, which had a very high likelihood of making me infertile. One minute I had to meticulously plan any future baby-making, now theres a possibility of no baby-making at all?! What is this terrible disease they've found for me? It hurts, and restricts me and now its taking away my future family! What did I do to deserve this? Send me home, now, forget I ever said anything.
That drug option was never followed through (thank goodness) and, of course, had we taken the treatment, we would have asked to harvest some eggs, to keep the future options open. But as I watch my friends of a similar age fall pregnant around me (in my head this all happens in moments, no waiting, no planning, just as soon as the pill packet is thrown away, conception, pregnancy, baby) I start to wonder just how difficult the experience will be for me. Will I struggle to cope without the MTX in my system? How would painkillers, anti-inflammatories or, dare I say it, steroids affect a baby? Could I physically carry an extra weight of that size without crippling my joints?
No, it is not high on my current agenda, but yes it is on my life agenda. And it frightens me to think that something so natural and wonderful could be made so difficult for me... by my own immune system.
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KatyEvans
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I've just checked my emails and saw your blog, I will reply later, properly and at length (school holidays at the moment and I have two wonderful mini monters driving me insane) now take a moment and read that bit again... I have two children and I have RA. There is hope I promise you. Yes it takes time, planning and at times it feels like the pregnancy is less to do with you and your partner/husband and more to do with the Dr's but it can and does happen. There are lots of mums and dads on here that will, I am sure, get in touch. but have faith!
Keep smiling. Regards Mel
Katy. there are lots of ladies on here that have had babies such as Mel, ,Mandy, Wiliby. to name but a few.. they can hopefully reassure you, Mel is already promising to help.. lots of people will want to help.
It is important to have the pregnancy planned.. it might be worth contacting NRAS to see if they have any leaflets on pregnancy/ RA..
With methotrexate the planning is important.. foetus are not normally viable. which is just as well as any resulting baby would have bad deformaties.
There are some drugs that can be taken during pregnancy. without harm to baby.. you will be supported. advised by your healthcare professionals.. and closely monitored during pregnancy..
You will get improvement in your own symptons with treatment.( may take a few months or slightly longer. and yes It may be you Zumba dancing I hope so xx, then when you are well physically and emotionally. it all has been a terrible shock.. and nothing can prepare you for those words.. you have RA.. I took the rest of the day of work!!, You sound like you have a great lot of family and friends. let them help you as much as possible.. good support makes a difference.
With best wishes
Alison xx
Oh Mel you must be feeling like poo. But there is a big light at the end of your tunnel. So it might not be like you feel "natural", but it will be your way "natural" . It is possible and it can be something on your life agenda, just needs a little more forethought. My baby was planned down to the last minute - well not exatly minute, but there was no way I was going to have a "mistake" I had a friend whose mother and father constantly referred to her as their mistake, and unplanned but they loved her anyway, of course. But you know she once said to me I know my Mum and Dad love me, of that she had no doubt, but she just wished shet hadn't been a mistake or unplanned.... Your baby will be planned and loved and wanted, that's all that counts...
Hi KatyE, know how you are feeling as I went through all this 3 1/2 years ago (minus the pregnancy worries).
It does get better and the drugs are very effective at keeping RA under control. I am sure your consultant is used to people weeping over him - I know mine is as I have wept over him several times over the last few years. He is very good at handing the tissues!
I believe the blurb which comes with MTX (and anti tnf) has something in it about getting pregnant and planning for that. Have a chat with your GP as well as well as your Rheumy. If these things have to be planned for, not a problem. It's amazing how the body copes and adjusts so try not to worry. (I don't think you will be doing Zumba or 20 mile hikes just yet though!). Good luck to you. LavendarLady xx
Hiya,
Although I have only been recently diagnosed (like yourself) and don't have the experience of having to stop these meds before planning having a family, I do have a 8 month old baby, My first signs began just before I became pregnant and as the pain progressed my doc/midwife put it down to hormones.
When I reached 4-5 months I was completely pain free which I believe is normal with RA in pregnancy (the immune system supressing itself to protect baby) this lasted until a few weeks before baby was born.
By the time the pain came back I was able to take stronger pain killers without causing baby any harm. But if I knew then what I knew now there are many things I could of done to help. I'll leave that for when you do decide to go for it!!
Strange as the morning I went into labour, the pain went away again for around 6 weeks, then I was hit with my first flare in Jan followed by a diagnosis in Feb this year. I had around 6 weeks waiting for consultant appointment without any steroids ect, so during this time was although very hard, having baby Amy just made impossible to get down about it all....
Soon as I was diagnosed, given a steroid injection and now 6 months later, I'm feeling 70% better!
Because your Doctor ect is aware of your RA, you'll be treated without delay.
I know this must be so very hard for you but further down the line and hopefully with your little bundle of joy you'll know it was the best thing you've ever done.
You and I are lucky in regards that we are both newly diagnosed with better medications available, hopefully under control before any permanent damage.
I could give you tons of tips on how to cope with baby but as I said,plenty of time for that....
Normal activities; I'm just back from a lovely cycle and now plan to get a baby seat attached to my bike, maybe I can't walk for any long distance (yet) but a cycle is much better fun anyway
Sorry, I'm waffling now, take care, don't let this stop what could be the most wonderful thing that ever happend to you xx
...little darlings are all tucked up in bed, so I can sit and actually hear myself think for the first time today!
I developed RA a short time after the arrival of my first child and when I was told I had RA I was also told that it made the chances of having another child very low due to the damage from medication- This is wrong and NOT true! Yes it is harder and involves lots of conversations with GPs, consultants etc - so I'm afraid it does reduce the possibility of just having a bit of fun with your husband as and when you feel like it, it needs to be timed carefully!!!
There are medications available to you that you can either stop taking and then try for a baby and there are some that you can continue to take. When I wanted to try for my second child I was told that I could continue taking sulfasalazine and Diclofenac as they are deamed as safe for use during pregnancy, I stopped all medication though as I did not want any drugs in my system (that was my choice and my choice only it does not mean I was right or wrong in making that decision)
I was closely monitored and had more than the normal amount of hospital visit (which is one benefit as you get more wonderful scan pictures and the reassurance through out the pregnancy that all is ok)
You need to make sure that you communicate to your consultant that you wish for your treatment to leave the option for you to have a child. It is normal for any RA consultant to treat in this way for a women of child bearing age.
I'm not going to go on for ages about this, but if and when you decide to go ahead and try I promise you all the effort is well worth it when you look into your little bundles eyes for the first time.
Kind regards Mel
Hi Katy, I tried ten years to conceive and along the troublesome route suffered miscarriages ectopic pregnancy and then a failed ivf, eventually though I did conceive naturally but also developed RA.Although I wasn't actually diagnosed properly until after giving birth. I had an horrendous time during my pregnancy, I though I was at the happiest time of my life carrying the child i had always longed for. I refused any form of medication and like Mel it was my choice. That was over 16 years ago now and I promise you things are completely different. Your consultant will help you all the way putting you on the right medication to suit you in order to conceive, I have also heard of others taking certain drugs to help keep their RA under control whilst trying so it's certainly not a case of coming off everything unless of course you choose to.
i would firstly recommend and I think your consultant would too to get your RA under control first for a certain amount of time before trying.
When i had my son over 16 years ago I was then left to get on with things as there was not much that could be done other than spending every other week in hospital, which i did and found it very difficult to bond with my son. Now though more is being done to help mothers and consultants have learned a lot through research that attacking the RA soon after giving birth is a must for most women due to the hormone changes.
Please try not to worry as long as the consultants now that you are considering a family sometime in the future they will help you all the way by putting you on the right medication.
Whatever your going through at the moment having a child is the most wonderful experience ever and you will get there I'm certain, but look after yourself at the moment you need to be as fit and healthy as you possibly can be to conceive and raise a child.
Take care and try not to worry, take everyday as it comes and be positive and strong.
So much good advice and kind thoughts. I'll keep you posted when the time comes and no doubt be asking it all over again (daily) through the entire experience! You guys are a godsend :-). I've been looking for a creative channel for a while, I love to write and as you all know sometimes other pastimes are not as easy as they used to be. Please don't ever think of me as big old whinge bag, I'm just getting it all out on the modern equivalent of paper!
Hi Katy- I am a newly wed 29 year old on mxt and hydorxchloriquinne for last 4 years, all your fears ring so true with me. In fact, o put a blog on here a few months ago with the exact same fears and got an amazing resPonse from everyone, as you have.
Yes we do need to plan our family carefully, we need to be super careful and not get pregnant, yes people not in our situation will never understand the frustration of it. But we can still get pregnant. As Isaid- I wad terrified about this just the other month, but after speaking with my consultant- we felt much better. There is a real plan in place before, durinf and after pregnancy and if you have a good consultant, they will be a huge support.
In the meantime, we have decided to delay pregnancy for a couple of years, until I feel I'm in the right head space to get off the drugs and we're going to make the most of married life and enjoy ourselves until we embark on little ones.
Listen to the advice of mums on here, they are amazing and really helped me just a few months ago when I felt exactly what you're feeling.
Big hug
Charlotte xxx
Apologise for typos- trying to get used to iPhone!!
Reading your post is like you have gone into my head an written down all my thoughts! I'm a 29 year old female and was diagnosed with RA in Feb this year. I've accepted RA as part of my life and however worried I am of what the future might hold I know I will cope with it. The only part of RA that I am really struggling to get my head round is the issue of babies. My whole life I have known that I will one day be a mother and never once before my diagnosis did I ever consider this would be anything but easy. Now when I think of having a baby all I feel is scared! I'm scared about stopping my meds for a period before I can even start trying to conceive (I'm also on methotrexate) , I'm scared that I won't conceive quickly and that I might not be able to cope off my meds whilst trying, I'm scared about how long I'll manage off my meds after giving birth as I'd really want to breast feed, I'm scared about how I will cope with a baby and pain. Earlier this year I became an auntie and it really brought it home when I couldn't even pick up my nephew, and when I did I was frightened of dropping him, because my hands and wrists hurt so much. What if I have a baby and I can't pick them up and comfort them properly? My partner always tells me that we'll manage, that he'll be there to help me, and although I know he is right I can't help but be scared that I am not going to be able to be the mum I want to be.
Sorry for waffling and not leaving you a particularly positive reply! I just wanted you to know that I think I understand exactly how you're feeling. Reading other peoples replies goes to show that although the thought of getting pregnant/having a baby with RA is incredibly daunting, it is far from impossible!
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