Did you have to make any changes when you were trying to get pregnant or when you became pregnant?
I had to stop all drugs. I was only allowed on Brufen Retards maximum dose and, and painkillers when I was trying for a baby but I was told I didn’t ovulate so eventually I went back on to the drugs because I was so bad, I, you know started to deteriorate again and then after about 6 weeks of being on Penicillamine I actually found out I was pregnant, on the drug and it, I think Penicillamine was quite a newish drug at the time and they said, I spoke to my gynaecologist, he said you ought to contact all the pharmaceutical companies sharp and find out because he wasn’t sure if I could actually keep him or not and within three days, it was a long three days, but three days later they said that the tests they’d run were on, I can’t remember what they said but it worked out that the amount I’d had in my body compared to what they had done in the testing, I should be OK and he was fine, yeah he was fine, so I had to stay off of the drugs for the whole time that I was pregnant.

The Brufen I was allowed to take up to a certain amount of weeks and then I had to change and then I just had painkillers and things until he was born.

But the further into my pregnancy the better I got and after I think it was about the sixth month it was wonderful. It was, it was absolutely wonderful, it was like I had the best drug that there was and I said then, ‘Can’t you make this hormone that you produce when you’re pregnant’ because you just feel so good.

It took a long time to work and it was gradual, then all of a sudden it was amazing and I was really good so I enjoyed my pregnancy which was good but then once [son] was born on about the fourth or fifth week it hit me pretty hard again. But it was good for the time I had it.

So did you go back on to the drugs then?
I went back on to Penicillamine but the problem was that for some reason, whether it was a hormone change in my body, it didn’t actually work for me when I went back on to it the second time so then I had to change on to something else from there.

So that was quite good ‘cos we were able to ask all the questions we, we needed to. So I mean the drug I’m on apparently wouldn’t be a nightmare if I got pregnant but obviously it, it wouldn’t be advisable so kind of we, we openly told the consultant that we didn’t want to just have the one child, we did want to add to our family at some point. But we were thinking a three year age gap anyway so that kind of worked in fine really ‘cos you need to be on the drug for about nine months to a year. So it’ll probably work out that I will be on it a year so, my next consultant’s appointment we’re gonna discuss that and see what, see, ‘cos I, ‘cos you have to kind of wean yourself onto the drug so I’m assuming that you just don’t stop taking it. So, so it’ll be interesting to hear what he says really.

And so, you know, that’s what you’re thinking about now is, is whether to come off it or not?

Yeah. Kind of well when I went off, when I went on it we kind of discussed that I would be coming off it, kind of a year later which will be coming off it in the spring really. I kind of think that’s, must have been when I started taking it, so that will be, that will be about a year so. And then hopefully, and he said the ideal thing would be to to come off it and then get, get pregnant the very next month. Obviously, the, from the arthritis point of view that’s the best possible scenario but obviously real life’s not the best possible scenario so we, we shall see how long it takes and how bad my mobility, how much my mobility deteriorates ‘cos obviously I’ve still got to carry on with life, you know. Having another baby is not the be all and end all of life really. So we shall, we’ll see, see what happens. I mean it, it hasn’t, it didn’t take very long last time but kind of nothing’s a foregone conclusion really.

And have, and have you sort of thought about other op, you know, other options if, if your arthritis does, you know, sort of become too much and you’re not pregnant?

Well, I mean, at, at some point we kind of, I think probably before, before I come off the tablets I think my husband and I need to sit down and kind of seriously discuss how bad we let my mobility get because once you start trying kind of there’s all the, ‘Oh well, I might already be pregnant,’ kind of emotions really, kind of, you kind of, you get lost in the trying for a baby bit and kind of you forget reality really. So, I don’t know we, we haven’t had those kind of conversations yet.

As, as soon as you’re, when you’re pregnant though it goes into remission so it, once I’m pregnant it sh, shouldn’t be too much of an issue. But, I mean, I think if, if I hadn’t gone on the drugs at all I can’t see us of having another child because I wouldn’t have, I was in so much pain to then have, be carrying a, the baby as well. It kind of, I think it would have been a silly idea , So, but I mean I’ve, one of the things that was suggested was that I lost quite a lot of, I lost some weight and I have actually lost a lot of weight so actually I’ll be in a better position this time starting a pregnancy than I was last time so which is quite good.

The one, I would say the one thing really that we do tend to sort of look at is obviously starting a family. Not, it’s not so much from the, from the treatment, it, it’s from the point of the view that, she, she’d have to come off treatment, full stop. It’s the thought of, you know, going back to how she was, it’s, you know, something, well I’d, I’d feel really guilty, I mean, obviously it’s, it’s, it would be her decision at the end of the day if she wanted to go through with it but we do talk about it and it’s, it’s one of those things that is at the back of the mind really sort of, it’s a bit of a nagging thing. I think that’s the biggest, biggest worry we’ve got at the moment, so.

Yeah, it’s a big thing really, isn’t it?
It, it is really. I mean, you, you haven’t got just, you’ve got, I think it’s six months beforehand you’ve got to just wash out all the, all the drugs anyway so you’ve got that six months and then obviously, excuse me, the, the time of pregnancy so that’ll be a long, long, long time to go without, I mean, yeah, going back to how it was, that would be a scary thing, really.
Have you been able to discuss that with anybody?

We, yeah, I mean, it’s, it’s something we’ve spoken at the hospital because, you know, we, we have talked about a family sort of in the next few years. They put it straight they just said you would have to come off the treatment, you’re going to have to take a hit on it in that sense so it’s, it’s, it’s a, there’s two big things to weigh up really. At this point in time, there’s, there’s no easy solution so it, it’s, it’s something that I am concerned about more so for my partner than me, because, you know I can do, I’m just gonna have the one but you know pregnancy’s a bad enough thing on its own but when you’ve got that, it’s a double whammy really.

My main worry is the fact that I still haven’t had any children yet, and I’d like children although I’m getting on a bit [laughs]. I’m ageing. And a lot of the drugs, well, the drugs that I’m on, I have to be off for at least nine months to a year before I can try for children.

Which, I considered before I went on them, anyway, but it’s a slight concern and that, you know, after that time maybe, I wouldn’t be able to fall pregnant anyway. And also what would be controlling the pain, and the arthritis when that happens. I’ll have to go through even more pain. At the moment, I’m on my painkillers, as well as the methotrexate, to try and control the pain that I’m getting.

And about pregnancy, what would you need? What, what would you have to do? Have you talked to, or discussed with nurses about it?

Not really because we’ve not reached that point yet that I’ve really seriously thought on about giving it up and, you know, I know I can go and talk to them about it. There is also a phone line that I can ring whenever I want any help, a rheumatoid phone line, which, they do get back to me within twenty four hours of me leaving a message on there.

Which is very helpful, you know, if there is a problem between appointments, there is somebody there that you can ring. But at the moment, I’ve not reached that point of saying, ‘Okay, let’s try for a baby, you know, or let’s give it up.

Although I do know that time is not on my side [laughs] at the moment. So it’s something that I have to think about seriously. But, yeah, I know that it’s at least nine to twelve months I have to be off it before. And then, like I say, I just worry about how much pain I would have to endure in the meantime so.

And then found out I was pregnant and it started to ease it was lovely, wonderful, a nice respite. They were worried about it at first because they thought ‘Mmmm you’re not going to be able to’, because they didn’t realise that when you’re pregnant it went away, or they didn’t at the time and so I got all these special treatment and care and everything and, but it just disappeared, it was wonderful.

The swelling was still there but not the pain so I kept, you know, it would be wonderful if it could be like this, and then my daughter was born and it came back with a vengeance ‘Wham’, it got a lot worse, but she was really good, she was like a little monkey and shed hold on, and cling on, but I couldn’t pick her up like that, I had to pick her up differently. But we adapted round it, you have to, still sort of determination ‘it’s not going to take over my life, so, just went on like that. We decided I wouldn’t have anymore children because it wouldn’t be fair on them keep going in and out of hospital etc having different treatments and things, but I did.

We had my son he was planned, we did plan him eventually he was planned. It was totally different then, then they had found out about the fact that it disappears and I helped them with research too, which is somewhere frozen on ice are all my samples and things because they didn’t get enough to actually do anything, enough participants to do anything about it, so because then again, it disappeared again while I was pregnant, but came back even worse, and it steadily got worse as times gone on, so.

Before your second child you were two years off methotrexate?

Yes.

What were you taking then?

Just, actually I was just taking non-steroidals. And I did really well I mean there was a degree of remission. So I did really, really well. I can’t actually remember that much about it. I think it was because my Mum had died so everything was a bit up I the air.

Yes, I was just on non steroidals. I was on the Naproxen then. Which was, and then I got pregnant, and I think you can go into remission can’t you when you are pregnant. Unfortunately I didn’t. So that was a bit rough.

Tell me about that time?

Well obviously when I was pregnant. As I say, you can go in remission. But I didn’t. So basically I had quite a lot, not full flare, it wasn’t like that. I couldn’t have hacked that, but just large amounts of pain really. And all I could take were paracetamol. Because you can’t take non steroidals when you are pregnant. So it was a bit rough.

But you know, I did it. We did it. And you know, I managed to stay at work. And I had a bit of time off sick. But I did really well actually. But I am never, ever, ever doing it again.

But knowing that there were some other women go into remission, I think the majority that do. I was just unfortunate really.

So you had to cope with pain for nine months?

Yes, but since’ I am getting quite an expert at pain actually. It is strange because you think oh it is just painkillers that can alleviate it. And it is, but there are other things as well. I exercise a lot more since having rheumatoid. That helps. I swim. Icepacks. That sounds ridiculous. Bags of frozen peas on your joints. Wonderful, you know, and also the importance of rest. I didn’t quite get that. How important it is to rest. I am really good at resting now, even though I am sort of quite, I am very well controlled. So yes, it is amazing what you have learnt.

I was diagnosed with rheumatoid in 2001 when I was 30. I’d’ my daughter, my first daughter had just being born and when she was seven week old I woke up one morning with a really stiff neck and I didn’t think much of it and the following day I woke up and I couldn’t actually moved very well and I went to see my GP whom said start on some Ibuprofen and we’ll refer you to the rheumatologist and then, four and a half months later they finally diagnosed me and I started on the regimen then, the drug regimen, but in between me having a stiff neck and been seen by a rheumatologist was quite a long time and it was horrible, I couldn’t move, I couldn’t walk. My husband had to stop working and look after the baby because obviously she was tiny. I had to stop breast feeding, it was miserable, absolutely miserably.

So your husband had to give up?

Yes and he was, he is a contractor so he doesn’t get sick pay so it was a really horrible period of time actually, because even though I didn’t know, I didn’t have a diagnosis I had kind of found out enough through pamphlets to really diagnose myself. And when I found out the diagnosis I thought I well I know it is rheumatoid, it is quite classic. And then they started on the treatment and the treatment went really, really well. Absolutely fantastically.

Tell a little bit more about your symptoms and how you felt physically at that time?

At the time, I mean as I say I couldn’t walk very well. Movement was a real problem. I had very swollen joints, very red, inflamed, enlarged joints in all of my joints except my spine. I was incredibly tired. It just felt like I had been run over by a bus. You know, child birth is nothing compared to having rheumatoid I can tell you. Very, very depressed. Not eating. It was oh just an awful time.

I mean it was mainly the pain and immobility that were the, and the tiredness that were the worst things. I mean, look at me now, and I can’t quite believe it really.

And the painkillers I was on obviously did try and alleviate the pain, but, you know, it was Iboprufen and I wasn’t, I really needed something a lot more. And on reflection I really should have had a steroid injection much earlier but things were a little bit. People were a bit na’ve I think, and I ended going for about two months just on Brufen and it was just hideous. Absolutely hideous. And then I finally got a steroid injection and it was wonderful and then they started me on Methotrexate which worked really, really well. I responded fantastically to it.

Yes. But my husband. He was just fantastic, then. I can’t imagine going through that without him, without his support. Because he was very scared as well. I was petrified, because I thought, I can’t live with this pain, definitely not, and you know, what it is like after having a baby. Your hormones are all over the place anyway. So it was actually quite a dark time. Really, very horrible time actually. You know, I can look back and think ooh [shivers] God. And I do remember it.

But I was really lucky. I had lot so of good friends, a good family, and supportive husband and you know, I am very grateful really it is all over.

Right well that would be 1982 when I’d just had me first daughter, she would have been about 6 weeks old and I kind of woke up and just couldn’t move any, me arms or me legs and so after a few days, I went to the GP, a man GP, who said, Just being a Mum, it’s just this, it’s just your nappies, cos we had to wring the nappies out then , just all these things, pushing your pram and me sister had rheumatoid arthritis, you see probably as worse, worse than me and I did say all this but he said, No, nohe said, it’s not hereditar and just gave me normal inflammatories I think which went on and on and on and I think deteriorated more and more and more and then eventually I got , I went to see a Professor [name], I think, in the Royal Hospital in [city] and he just said, Yes, I had one thing which was slightly going really bad by this time and you’ve just got a mild rheumatoid arthritis and I don’t think I should give you any of the, the stronger drugs, you know, the Gold or anything like that So that was it, went on a few more weeks, really, really ill and I went back to my own GP and she referred me back to Dr [name] at the [name]Hospital, I was probably 28 at this time probably gone through two and a half, three years of just being told it was just being a Mum and this, that and the other, so anyway, Dr [name] immediately, he says, You need the proper treatment and he put on Penicillamine (DMARD).

They were fine about it actually. I thought they would really veto it. I thought they would be, ‘Oh that is a really silly thing to do. I think some one muttered something about well methotrexate doesn’t work very well the second time around. And it didn’t. But that is fine, you know, it is manageable. There are other options aren’t they. No they were, they good. And I don’t know because of where I live but the care I had from the obstetrician, the gynae, what am I on about. What am I trying to say, the prenatal care I had was fantastic. Yes, a lot of liaising between the hospital, the rheumatology and obstetrician. That worked really well. I had fantastic care then.

Can you tell me a little bit about that?

It just seemed to work, you know, I got referred up there because I was, they call it Silver Star, you get special treatment and you get seen regularly by one of the Professors, one of the consultants, you get seen each time by the midwife. I think it is about every two months or so, if not a bit more. You know, regular blood tests. We have all the sort of physical side of you know monitoring. But also you have that time to talk to someone about your concerns. That is really, really important. And that worked out really, really well. Because I found that obviously the rheumatologist had had experience of women being pregnant, but probably not hands on, because everything got referred to, you know, the obstetrician. So I actually found it really a sort of strangely comforting time, because I felt very supported, able to ask anything and I remember really wanting a water birth, and you know, this is, it is going to be, can I have a water birth and they were fine about that, you know, that understood that was the right option for me, and they were trying to, they were helping me along with the, try and keep as active as you can during your pregnancy, that was important and I did. I kept very active, and you know, trying to, trying not to lie down too much when you are giving birth and all this stuff. So it was actually a very positive experience actually. And in the end I didn’t have the water birth, I nearly had my baby in the car park because I left it so late. [laughs] Before going up to the hospital. But it was a very holistic experience which I can’t really say, that is the first time I have come across a holistic experience. They wee great. Really, really good. Very positive.

And how did they manage your rheumatoid at that time? Did you have I don’t know, more tests?

They just kept an eye on obviously my, you know, my CRPs and my ESRs and my joints and whatever. And as I say I wasn’t in remission, so I was quite sore. But I remember cycling up there, cycling up to the hospital. And the husband went, ‘Oh you can’t cycle up there, ra ra ra ra. I was pregnant. I wasn’t ill and it is quite good exercise.

They monitored me for my rheumatoid from the point of view, up at the maternity hospital. But they kind of, knew what to look out for, I had a few incidences where I thought my hip was going to fall off, because I had such horrendous, tender pain and I was like oh my God it is sceptic arthritis blah blah blah blah. And I got seen immediately and that’s, I kind of think why can’t it be like that, why do I just have to have a baby in order to get this level of care. I felt very supported. So, yes, it worked really, really well.

If I say, cos I breast fed my daughter for a while for quite a while and I would say maybe about two or three months old she was when it really couldn’t get up in a morning, the aches and pains are back, very stiff couldn’t move very well and that was it really just bam! It was back and it was back worse that it was before. So I don’t know why.

So did you then go back onto your drugs again, or had you gone back on them after the baby was born?

No because I couldn’t because I was breastfeeding I couldn’t go straight back onto the drugs anyway and whilst ever I wasn’t feeling anything then I didn’t have to take the drugs, I thought ‘oh great it’s gone you know, it won’t come back. But it did and they had to work things round so that I could have a certain amount of things that wouldn’t harm my daughter through breast feeding, but then I had to stop breastfeeding anyway because it did get too, too bad and I had to go back onto the medication so, but yeah it, cope without it, I suppose it needed the medication to try and get it back under control again, so maybe that’s why it seemed worse because I wasn’t on anything, I wasn’t taking anything to ease it and daren’t take anything to ease it cos I didn’t want to harm my daughter.

And what happened after the birth of your son?

It just came back the same really I breast fed him as well, so I can’t remember if it was exactly the same amount of time, but it didn’t come back with a wham, that was more gradual although it did come back in more places and sort of severe, but I knew more or less what to expect anyway, so wed gone to the doctors regularly anyway.

So I just worked it through that way. Wed started adding drugs gradually, I didn’t breastfeed him for quite as long as I did her anyway. So I was able to go back on the things and the injections that I was having worked quite well so that was alright. I mean obviously I couldn’t have them whilst I was breastfeeding but, no it was, having gone through it once, it was easier to think right yeah, the signs it’s coming back, straight to the doctors, and although I was visiting the doctor anyway to keep a check on it, monitor it, but it came back and it’s still here.

Okay and were you breast feeding at the time?

I was initially, I was initially, but now I couldn’t move so I kind of expressed actually, I expressed with a breast pump so that I could carry on giving her milk, because I felt so guilty and then when I went on methotrexate obviously I had to stop. But I had had so much breast milk in there, in the freezer I managed to keep on probably for about five months.

And for those two months when you were breastfeeding her. How were you feeling?

Pretty rough. Again my husband had to stop working. He was getting used to it. He knew actually, I will say that, he stopped, he knew with the second one that he would have to stop work anyway. Because he knew what would happen. So he gave up work probably about three months and helped me with the children. Because it wasn’t just my baby, it was, you know, my five year old as well.

So those two months they were quite rough again. It is just when you got back into the pattern of, I remember this, I remember this, unable to get up stairs, the not eating, feeling very tired, you know, again a horrible time, but it was almost of my making because I refused to give up breastfeeding. But the steroid injections worked really, really well. They make you feel so much better.

So in actual fact it was more manageable, much more manageable. And also I knew what to expected. It wasn’t like it came out of the blue and I didn’t know what was happening, unlike my first one. I knew exactly what was going to happen and how it was going to happen and I knew what I had to do in order to stop it. I knew who to contact. I knew what to ask for and so I was a lot more wiser, because I had been there before and I had the information really about it.

Yes. I was in hospital three days later I could feel the stiffness in my fingers coming back and it was like, oh God no, not again. And it was very similar to how it had been before. And it is strange actually, because I knew what I had to do. I knew I needed to get some steroid injections which I did. And I knew I needed to stop breastfeeding and go back on the Methotrexate. But again I had this mental blocked where I didn’t want my disease affecting my children. So I wanted to give them my breast milk. It sounds ridiculous now. Because you think the most important thing is I am healthy and happy. But’

So it was a couple of months before I agreed to stop breastfeeding and go back on the Methotrexate. So I know it is ridiculous when you say it. You think oh why didn’t I just stop breastfeeding, but it is, this is my disease process. I don’t want it affecting my children’s health in any way. And I kind of think breast is best. So but it is slightly mad when you think back on it.

But I mean she is great, she is happy, she is healthy. And’ but I am never having another child again. That is it. No more.

And you also expressed milk?

I did. I brought this brilliant pump and it was like an electrical pump and it was fantastic. You could just be like a cow. Like a sort of, I probably fed most of SCABU actually because I gave away a lot of milk because I was producing so much. And it worked really well. Really, really well.

So you put it in the freezer?

I put it the freezer here for Lucy because I knew that she would be wanting it later on and I gave the rest to SCABU because they give them to the special care babies. And I wasn’t on methotrexate then obviously so I could give it.