Tara - Interview 53

Age at interview: 37

Age at diagnosis: 30

Brief Outline:

Following her diagnosis Tara was put on Methotrexate and this controlled her illness very well. She came off Methotrexate after deciding to have a second child. She describes her antenatal care as 'excellent' and felt safe and reassured. She is currently on anti-TNF treatment' Humira.

Background:

Tara is married with two young children. She was diagnosed shortly after her first child was born. She says that she and her husband experienced both parenthood and rheumatoid arthritis in one go. Ethnic background/nationality' White British.

More about me...

Tara's symptoms of stiffness and pain began when her first child was 7 weeks old. She was unable to move and her husband had to stop work and be at home to help look after her and the baby. She found it difficult to walk and had limited body movements. She was unable to breastfeed her baby but expressed her milk and gave it to her in a bottle. She also froze a lot of her milk so went on giving her daughter breast milk for another five months after her diagnosis. She says that her husband has been incredibly supportive and that both experienced parenthood and rheumatoid arthritis in one go.

After her diagnosis she was put on Methotrexate and it worked really well. She was on this medication for two years until she decided she wanted another baby. She was told she needed to be off the medication for six months before conception but it took her two years to get pregnant. After the birth of her second child she had a bad flare up but says that she managed it better than the previous one because she and her husband knew what to do and knew what to expect. She knew she needed to have a steroid injection and that she should stop breastfeeding and start taking Methotrexate again. However, she wanted to breastfeed her newborn baby and postponed taking Methotrexate for two more months. As before, she froze her milk and was able to feed her baby breastmilk for several more months after re-starting her medication. 

Tara speaks highly of the medical care and support she got during her pregnancy. She says that the maternity team and her rheumatologist were in close communication. She was monitored every two months and felt safe.

After her second child she went back onto Methotrexate but after eight months it became ineffective and was no longer controlling her RA. She was in so much pain that they were giving her one steroid injection a month. A consultant referred her to the anti-TNF clinic and she qualified for anti-TNF treatment on the grounds of having bad rheumatoid arthritis. Tara says that Humira has made a great change to her everyday life. She has been on this therapy for four months.

Tara thinks that apart from taking medication things like having a healthy diet, rest and exercise are all very important, but she does not think much of the 'so called RA diet'.

Tara says that it is important to have a good GP, as she put it, 'One that is prepared to fight your corner', and one that is ready to support you and to get you the help you need. She suggests a kind of protocol is needed for newly diagnosed people, which will make people aware of the many resources available for people with RA.

Tara feels lucky to have a partner, family and friends that she can talk to about how she feels. She thinks that counseling is a good idea because RA can make you very angry and affect relationships.

Talks about medication before and during her second pregnancy and managing pain without drugs.

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.

Weeks after her first child was born Tara began to experience severe pain and joint inflammation...

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.

Talks about the antenatal care she received with her second pregnancy. She felt very supported...

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.

Tara managed to breastfeed both her daughters for several months and the use of a breast pump and...

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.

Tara says that 'Googling' for information can give you the worst case scenario. Somehow what she...

Who provided you with the information?

I suppose the information was what I had learnt from my first time around and that was probably more experience. I didn't get a large amount of information from the hospital I must admit. I sort of sent off for a pamphlet really which is a bit poor really. I did a lot of looking on the internet, and being a nurse, I sort of phoned people.

The Arthritis Research Council they are very good. They have got a lots of pamphlets. Is the NRAS that is another one'

The national...?

Rheumatoid Arthritis Society. They were good. And I Googled. The first time I Googled which was really stupid because it is not a very, good cross section that you actually come across on Google. You seem to get the worst case scenario for everything. Which I understand now, you know. 

I remember the first time I Googled rheumatoid and came up with oh within five years 60% of people are disabled or not working any more and I was just ridiculous statistic really. 

But it is funny, when you are in sort of a negative way, because when you are in pain, that is what I found one of the most interesting things about this. When I am in pain I am a different person. Everything is very negative. You can't look at the positive on anything. Everything is a problem. You don't have a very positive optimistic outlook at all. 

So if you find a piece of information about rheumatoid, you are told you are looking for the worst case scenario rather than looking for the optimistic side. It is strange.

Tara says that young adults with RA have different information needs to those of older people...

I look at those adverts on the television, the old ladies showers. I shouldn't say that. That is the one thing I do find hard about rheumatoid. I think people see it as an old person's disease and I go oh no, no, no. It is rheumatoid, it is not osteo, it is rheumatoid. And I have a problem with that. I find it's labeled as an old person's disease and people don't understand as they don't unless they have exposure to it. And even things like the Arthritis Research Council, they have a really good publication and they put a little shopping thing in with it as well, but it is all old lady's things. You know, sort of pants for incontinence wear and stuff like that, and you just think well I don't need to look at that. 

And I do think that there needs to be more emphasis on for the younger people because it really knocks you when you suddenly get this arthritis. I am 30. What on earth have I got arthritis for. It does knock your confidence in who you think you are, your sensibility I think, because you think you are old. And when you do have a flare you do feel like you are old but'

And your information needs are different also?

It is very different. And I am not, no way I am dismissing what it must be like to be old and have rheumatoid because it just must be twice as bad, because you know, you are old. But it is and it is different needs, and also that, I was young, I wanted another child, was that going to be possible? You know, all the things that you might not think about at the time, but later on you think oh I wish I had asked them that, I wished I had asked them that. But I have learnt a lot from that, I write a lot of things down when I go to see them at the hospital, because you forget. So yes, I think it is different, very different needs aren't there, from say someone who is 60 to someone who is 30. No one's needs is greater. It is just different isn't it? You know.

Tara thinks that having a young family restricts one's social life anyway. She has learnt the...

I definitely rest once a day. At the moment when my daughter goes for a sleep that is it. I think well I should be doing this and I should be doing this. But do you know what? I am not going to. Because I find if I don't have a rest in the day. I come to about six o'clock in the evening and I just want to lie on the floor. I am so tired. So it is just a way of managing it. And it works. You know, that is what I probably find quite hard about being at work. Eight hours on my feet and I come home and I have to sort the children out. That is quite hard. But it is only a couple of days a week. 

But what other limitations? There is not so many actually. I think most of it is probably the fact that I have rheumatoid but I also have two children. Yes, that is probably a bigger limitation. No I don't think so. I don't think it stops me from doing things. I suppose thinking of how I am now. I can do anything. I suppose there are limitations when I have my flare ups. Of which I have had two really bad ones. I mean well I can't do anything. But that was because my disease wasn't being managed. Well now it is. So I don't think I do have any limitations.

It would be interesting. You could probably ask my husband actually he might be able to find a few more. But no I think where I think oh that is not fair if only I didn't have rheumatoid I would be able to do this or this or this. I sometimes think I would like to work a bit, you know, have an extra day at work. But I think I would be too tired. So perhaps that is probably the only limitation. On the whole it is quite positive really. Yes.

Do you need to sort of learn to discipline yourself by going to bed early and having plenty of rest?

Yes. And that has probably become a way of life. Things you don't really think about. I don't do late nights. I don't do late nights because I have got a two year old that is going to get me up. Or my husband. So yes, we are probably both quite disciplined by that. But I think it is probably more the fact that we have got children rather than' I don't cope very well with tiredness. I get quite grouchy. If you probably asked my eldest daughter. She would agree. I do get quite ratty. So yes, we don't do large amounts of late nights. Probably we can't get baby sitters more than anything.

Do you think that you get more tired than people your own age with small children? 

In some way I think I do. But then in many ways I think I manage it so well that sometimes I look at people think hmm well you could probably do with sitting down for an hour or two rather than running yourself ragged, which I think especially women with small children do' And a job. They feel they have to do everything. So I am quite good at leaving things.

So you have developed this attitude then?

I think it is that attitude of actually I am the priority. My well being is a priority so if sitting down is part of it then I will do it. So I think, sometimes I look around and think oh I wish I could do this, I wish I could have a bit more energy to do this, but then I look around at other women and think I have got more energy than you have, so I think it does depend. But on the whole I think I do very well, but as I say the resting is a priority.

At the hospital they emphasised the importance of contraception when on methotrexate to which...

God I can tell you, people, I remember them saying to me when I was on Methotrexate, 'It is really, really important that you know you talk about, you know, you have contraception.' I say, 'The best contraceptive we have are children, shift work and rheumatoid arthritis.' Because that is the ultimate contraceptive. Obviously when you are in a flare up the last thing you can think about is intimate relationship I mean if it is like anything, if you broke your leg it wouldn't be the first thing on your mind, and sometimes it is not just the pain, it is the tiredness. It is probably better to be awake during it isn't it, really? [laughs] So obviously when you are in flare then no chance but otherwise I think, you know, everything is pretty hunky dory. It is like anything, if you have a chronic condition that causes tiredness and pain, then unless those two things are managed there is no way you are going think about having a sex life really. I know that sounds a bit draconian but you are not are you?

I know I think my husband was hoping that I would say, 'Well go off and get yourself a mistress.' 

And on top of that you have two kids also?

I can't see that ours would be any different from anyone else with small children to tell you the truth, but I think, yes, again, perhaps that is something different with being a young person with rheumatoid and an older person, you know. 

Obviously and it is something they do talk to you about, or they do mention it to you. At the hospital, and it is like in a cough, cough way, because you can't conceive when you are on Methotrexate. You know, it is really important. And they do ask you what contraception do you use and that is why I said [laughs] joking aren't you? 

So yes, I mean you can, you can have a fulfilling sex life. As long as you are managed, you know, because if you are in pain and you are tired, it is last thing on your mind isn't it? But yes. There is probably as much as I can say about that really. 

Talks about why they changed her medication to an anti-TNF treatment and the changes it has made...

I was put on anti-TNF about four months ago. I had gone back on my methotrexate after my second child was born. When was that, probably about four months after she was born and I thought great, you know, back on the methotrexate. I understand that is going to work. And it did work. It was really strange. It worked well for about eight months and then I just suddenly, I started to get a flare up and I couldn't quite understand it, and joints swollen, very tired. You think oh no, here we go again. 

Went to my GP. Got seen by the hospital and they increased my methotrexate and it still didn't work. And it is awful, because you think well this is my lifeline. This is my drug that always works. And in actual fact it took me a while to be seen. As my symptoms got worse and worse, I was off work. I was off sick, because I couldn't move very well. And I think you have go through certain criteria don't you to qualify for anti-TNF because of the cost, so they had to basically test me on the other two. DMARD isn't it. So methotrexate wasn't working so they added Leflunomide and Hydroxychloroquine. They didn't do anything, except that my hair started to fall out. 

And then eventually they referred me, after, I must have had about five steroid injections because I was just so inflamed yes, about five steroid injections over' I used to have one a month. I used to be begging for it. And yes, so five steroid injections. Tried the other two DMARDS. They finally referred me to the anti-TNF clinic. 

There was a really, really brilliant registrar at the hospital who referred me. Who I kept seeing. She was wonderful. And anti-TNF, yes the anti-TNF people in the clinic and they sort of did my tender joint count, when they see how many limbs are inflamed. It was funny because I actually had steroid cover. I still had steroids on board when they saw me and I thought I was doing pretty well, but obviously I was still very inflamed. So I qualified for it on that level. And I started it so it is Humira or adalimumab. They seem to give them really strange names. And it worked fantastically. It worked within two weeks and I have been on it ever since.

And so it has made a change to your life, your every day life? 

Absolutely. I am able, because I don't think there is anything, I do remember with me, each time I have had my flare ups I have always got small babies, which is a nightmare. And I can't get on the floor with them. I mean, it is the basics, before I wasn't able to get on the floor with my baby, you know, trying to get onto the floor was just impossible. You know, playing with her was impossible. And anti-TNF has, you know, has enabled me to have a normal life. You wouldn't really think there was anything, anything wrong with me. It is, I mean it has made a huge difference.

She was 'amazed' to be given lots of information and advice about her anti-TNF medication. Says...

How much information they gave you about the Humira?

Quite a lot actually. I was amazed it was so different from the Methotrexate where you get sort of this, you know, you get like a photocopied sheet don't you with things on it. You know, information on it. But with Humira I suppose because, you know, it is a big company, big bucks, you get, you know, everything sort embossed and you know, you get a little calendar when it is due and yes, I got a lot of information actually and it was easy to understand as well, you know.

As usual I Googled and I you know, I started looking at the disadvantages of it, but then I worked out that I don't really have a choice, because if I want to get on with my life, then this is the drug I need to take. You know, there are side effects with any drugs. I mean look at the side effects of paracetamol. So, yes'

And what did you find out regarding sort of side effects?

I mean I suppose the biggest one is you increase your risks of other infections. And if you catch infections they could be a lot more long lasting so you have to be quite astute at thinking hang on I have had this cough for two weeks now. I need to go down to the GP's, perhaps start some antibiotics. Rather than before you would have just got over it. I noticed that. It is niggly things but nothing major. 

I think there is an increased risk of lymphoma isn't there? Which is fun. But I think it is about 1% or something, you know, I am more probably at risk of getting run over by a bus really, so' You have to take it in context. It is, it sounds dramatic, but it has actually given me my life back. You know, the fortnightly injection is enabling me to have a really good life and I have reduced my analgesics as well. Halved those, so' yes. It is good stuff.

Okay so it seems that you are not terribly sort of concerned about long term effects? Would you say that? Or have you put it into perspective?

I think I have put it in perspective. Because I am concerned. I think sometimes if you find me [coughs] if you find looking through the BNF about the side effects of everything. And I do sometimes think oh God I don't want this, that and the other. But you have got to get it in context. If I am not on it I am not going to have a life. You know, the Methotrexate is not working and Methotrexate has, you know, side effects. They all do. But you have to get it in context. I mean, I think I look quite well. I think I have' you know, my friends can't believe how well I look, and one of my friends said to me a couple of days ago, 'Oh you look as though there is nothing wrong with you.' Which I thought was great. But no the anti-TNF is wonderful stuff.