Rheumatoid Arthritis
Biologic treatments for rheumatoid arthritis: anti-TNF, anti IL-6, anti B-cell and anti T cell
Biologic treatments are antibodies which are designed to destroy or limit key proteins and cells that drive RA. There are several different types of biological treatments for RA including:
- anti-TNF,
- anti IL-6,
- anti B-cell and
- anti-T cell
These work in different ways.
1. Anti-TNF therapy works by blocking the action of TNF (tumour necrosis factor), a molecule responsible for increasing levels of inflammation in people with rheumatoid arthritis.
2. Anti IL-6 therapy (tocilizumab) blocks another important protein that drives inflammation and is responsible for a lot of the flu-like symptoms that affects some people with RA.
3. Anti B-cell therapy (rituximab - trade name MabThera) removes antibody-producing white blood cells called B-cells which play an important role in inflammatory reactions that can lead to joint inflammation, deformity and loss of function.
4. Anti-T cell therapy (abatacept) stops certain white cells talking to each other and becoming activated and inflammatory.
Most of these drugs are given in combination with the conventional DMARDs already mentioned (methotrexate etc).
There are lots of different types of anti-TNF drugs including: Infliximab (Remicade) etanercept (Enbrel), adalimumab (Humira), certolizumab pegol (Cimzia) and golimumab (Simponi) some are given by intravenous drip and others as injections.
The anti IL-6 treatment tocilizumab (Actemra) is self-injected once a week, although can be given as a drip every four weeks if preferred.
B-cell depleting therapy rituximab is given by intravenous drip in a hospital clinic. A steroid injection is usually given first. Usually two intravenous infusions are given 2 weeks apart. This treatment is repeated at six months and then only repeated if/when there are signs that improvement is wearing off, which can be anything from 6 months to 3 years later.
Anti-T cell therapy abatacept (Orencia) is taken as weekly self-injections or monthly as a drip in the hospital if preferred.
Only a minority of patients with RA will have these drugs, as they are only used when standard drugs are either not tolerated or are not effective and are only given to people who fulfil specific criteria set out by the National Institute for Health and Care Excellence (NICE). These include a person's level of disease activity, as measured by their erythrocyte sedimentation rate (ESR), and non-response to other disease modifying anti-rheumatic drugs (DMARDs)
You can listen to, watch or read Professor Robert Moots introduction to biologic treatments.
Professor Robert Moots explains about biologic treatments for rheumatoid arthritis.
Professor Robert Moots explains about biologic treatments for rheumatoid arthritis.
Over recent years however we've learnt much more about what causes rheumatoid arthritis, and as we've learnt these things we've been able to design new drugs that specifically inhibit important parts of the pathways that cause the inflammation. The first drugs that were developed in this way were the TNF alpha blockers. TNF stands for tumour necrosis factor, and this is an important chemical that causes inflammation and is particularly high in rheumatoid arthritis. What we learnt is that if we inhibit this chemical, patients get better. And there are three drugs that are available at the moment that do this. First of all infliximab, then etanercept and adalimumab. So they're very complicated names, but the bottom line is that they neutralise this inflammation chemical and this can help get people better.
So let's consider these individually. First of all infliximab. This is a protein like the others, but an antibody. And the antibody is made up of a tiny fragment of part of a mouse antibody coupled to a human antibody. And this drug is given by intravenous infusion. So patients have to go in and have a drip gradually going though into the vein over a period of a few hours. And once patients are stable on this treatment, the drug is given every eight weeks. The other drug, adalimumab, is also an antibody, but it's a fully human antibody and therefore people are a bit less prone to develop an intolerance to it, which I'll explain in a minute. The third drug, etanercept, also a protein, is coupled, is a human antibody coupled to the natural receptor for TNF alpha. So adalimumab and etanercept are actually given by the patient as an injection under the skin, a subcutaneous injection. Etanercept is given once a week, and adalimumab is given once a fortnight.
These drugs are also known by their trade names. Infliximab is also known as Remicade. Adalimumab as Humira, which is much easier to pronounce. And etanercept is also known as Enbrel. We know that all three of these TNF blockers work very well. In fact these have become the gold standard for treating rheumatoid arthritis because they give the best results. However, it's important to know that not everybody with rheumatoid arthritis needs a TNF alpha blocker. Patients with milder disease can do perfectly well on simple drugs. And at the moment in the United Kingdom we have to reserve the TNF blockers for people who have got bad disease and who have also not responded to the simple drugs, including methotrexate. But if you're in that situation, you're not responding to the simple drugs and you do have bad disease, then you will be eligible to have this treatment. TNF blockers are given by rheumatologists, and it's important that their delivery is supervised by a rheumatologist from a hospital.
As I've mentioned, these drugs give the best chance of responding if your disease is bad. But also, like any drug, there is always a risk of a side effect. The side effects that we know about which are likely in some patients on a TNF blocker re
Anti-TNF and B-cell treatments
Some of the people we interviewed were currently on the 'biological' drugs (including four who took part in the original clinical trials) and others were considering it. In those who were using it their quality of life had improved - less inflammation and stiffness, less fatigue and in some cases less pain, so giving them greater mobility, energy and strength. Some people said they had had only minor flare ups of their RA since starting anti-TNF.
Sandra was not responding to treatment and her symptoms were getting worse. She describes how her...
Sandra was not responding to treatment and her symptoms were getting worse. She describes how her...
Talks about why they changed her medication to an anti-TNF treatment and the changes it has made...
Talks about why they changed her medication to an anti-TNF treatment and the changes it has made...
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.
The effects of anti-TNF often begin very soon after the first treatment (unlike DMARD treatment) and people felt the initial benefits of reduced swelling and increased mobility within 24 hours or a week. The full effects can take several months to develop, but generally enabled people to plan things in advance and know they would be able to participate. One woman felt it had increased the length of her active day because she was less tired.
She was almost housebound because of her RA. Doctors started her on etanercept (Enbrel) and...
She was almost housebound because of her RA. Doctors started her on etanercept (Enbrel) and...
The reason I started that because everything else wouldn't work the, I've been on various different medications and none of them worked, or they would work for a small period of time and then it would just, just slide back down again, and, I started in, it would be about September of last year, and, the previous six months that was when I was particularly bad, and we'd booked a holiday actually which we had to cancel due to it 'cause it's just, I just couldn't go and the doctors had said, “You're just at the point where nothing else is working so we're gonna put you on this medication.” and they explained that it lowers your immune system and, so it's combating the over-activeness of your immune system that causes your joints to flair up and that, and I was given quite a lot of information actually and they do, make you understand how it works and what the side effects are and, because you have to be quite careful if you get a cold or anything you have to, you have to stop taking it because it can, because it lowers your immune system, you know, you can't just carry on taking it 'cause you'll just make yourself ill. So there, there's quite a lot of information that you have to have and you do have to understand it and how it works 'cause if you don't you can, you can make yourself ill yourself by taking it when you shouldn't, so the information was quite plentiful really and it, what was explained and I think they make you understand it because you need to but then when they, I think, they do, they didn't try to say, oh it's gonna be an absolute miracle cure because they don't want to sort of get your hopes up luckily it did it completely, completely changed me life, going on it, but they said, “Look this is the situation a lot of people have been on various sort of medications and nothing's worked and they've tried this and it has completely turned around,” which it did do, luckily [laughs].
Which drug are you taking?
It's etanercept.
About it was, it, was about six months before I started and I couldn't, I couldn't walk very far I was, mostly sort of housebound really 'cause my partner works so obviously he wasn't, you know, I was sort of in the house really and I'd, very severe pains in my feet so I couldn't walk very far, very stiff, swollen knees, hips, I needed help off the chair, and help in and out of the bath and, just, you, I couldn't do anything really I would try to get up and about as much as possible because I knew that if I just sort of stayed in bed or, I'd sort of sat on the sofa all day it just made it worse so I did sort of try and get up as much as possible but, you know, you, I couldn't do anything that you would normally do, I couldn't go out shopping or I couldn't, [sighs] go out for, I mean I tried to sort of go out for small walks but, even that was quite difficult as well and that was for about six months and I had to stop work completely and not do a lot during those six months. and then, when I started taking the anti-TNF drugs it was about two weeks and I felt better, and, less tired and just, just generally better and then, four weeks later, no it's about six weeks later and we'd, we went to America and we did, well we went to Disneyworld and I walked round Disneyworld for two weeks without any problems, so in, within a space of about six weeks I was completely different, so it really, it's a good [laughs] very good drug [laughs].
Felt the effects of Enbrel straight away and has less inflammation and more strength.
Felt the effects of Enbrel straight away and has less inflammation and more strength.
I can actually feel the bones back in my wrists again where the inflammation is just going down so quickly'. And he's seen such a difference in me in four weeks that I'm thinking another four weeks on 'This could be great!' I just want it to work so badly [laugh]. So I'm looking forward rather than backwards. I'm hoping that it's just going to get better. I hope.
I was told that it's, they call it, like, the miracle drug and as much as I wanted to think 'Yes, next week, I'm going to be walking further than I've walked for years', but I also, although my fingers went down the next morning and people were saying 'How do you feel? How do you feel? Do you feel really good?', I was like 'Oh, I feel alright, I feel the same' because I could feel the difference but I had this thing that if I admitted I felt the difference, I would jinx it, it would go wrong. Something would go wrong somewhere.
So although I'm feeling, I am feeling a lot better and so much stronger, I, I frightened myself the other day when I picked [son] up from the floor. I have never done that since he was born. I've always had to have him at arm's, like at hand level, and I actually lifted him from the floor. He fell and hurt himself and I lifted him up and before I realised what I had done I had actually lifted him up. And he weighs a ton and I was amazed [laugh]. Yeah, shocked, cos that's, it's given me a strength that I didn't have, I haven't had for such a long time.
Sometimes, the benefits of anti-TNF therapy were experienced as gradual and subtle rather than in a swift and observable way. Sandra indicated that she noted the benefits of Cimzia after about twelve weeks but it has not made a significant impact on her lethargy.
Emma talks about the benefits she has experienced since using Cimzia and describes the...
Emma talks about the benefits she has experienced since using Cimzia and describes the...
Taking the anti-TNF medication
Infliximab is infused through an intravenous drip over about 2 hours in hospital as a day patient. One woman enjoyed these sessions in a 'lovely environment' and liked meeting other people with RA. Another now received it every 7 weeks as she noticed the effects wearing off and her symptoms were worse in the last week before her next infusion. When taking part in a clinical trial for Simponi, Pat was selected to have the drug in injection and later in infusion form She experienced side effects when having infusions and also she felt uncomfortable with the lack of privacy in the hospital.
Pat preferred Simponi injections to infusions because the latter gave her headaches. She found...
Pat preferred Simponi injections to infusions because the latter gave her headaches. She found...
Well, obviously I, she said, “You’ve been chosen to have the fusion,” and I thought… I didn’t like that very much, not for any particular reason, it was it was just a ward in a hospital and it just wasn’t, it was just really dreary.
A nurse teaches patients to do the subcutaneous injections of Enbrel, Humira, Simponi or Cimizia and most people find injecting easy and not painful. A 37 year old woman's husband gave her the Enbrel injections twice a week. Another woman injects Humira herself in a similar way but checks carefully because one batch she had been dispensed was out of date. Pat couldn’t do the Simponi injection herself and asked her husband to do them for her.
Her husband helps her by injecting the Enbrel twice a week.
Her husband helps her by injecting the Enbrel twice a week.
Right, so, he, how often do you have to have them?
Twice a week, in the tops of the legs and it's, it's really good, you get a complete pack with everything in it that you have to do, but the unfortunate thing is I can't crack the tops off the needles, I can't take the tops off the little bottle that you have to use the syringe to put the stuff in so, it was agreed that [husband] could do it for me. So he makes this up for me on a Monday and a Thursday and then injects me with it and he's loving it [laughter]. He can inflict some pain on me.
Injects Humira Anti-TNF into her leg every two weeks but one batch she was given was out of date.
Injects Humira Anti-TNF into her leg every two weeks but one batch she was given was out of date.
It was funny, I had it all ready, just about to inject and I checked the expiry date 'cos I remembered the rheumatology nurse saying, 'Always look at the date, look at the name and look at the date and make sure it's the right thing you're putting in your leg'. So I looked at the date and I thought, and it was something like the 30th of the 4th 03. And I thought, 'That's fine'. And then I thought, 'Wait a minute, it's the 5th'. And I thought, 'Well, I don't know what to do. I don't know, do I take it?' I looked in the fridge, that's all I had. And I thought, 'Do I take it? Do I leave it?'
So I phoned up to check and my rheumatology nurse said, 'Don't do it. I'll phone the pharmacy.'
People commented on the features of prefilled syringes and how important these are for people with painful and restricted mobility on their hands. Christine, Sandra and Emma have noted that the Cimzia prefilled syringes makes it easier for someone with RA to use and control with either one or two hands, depending on grip strength and control.
Christine finds the Cimzia prefilled syringe very easy to use. To some extent, it was the...
Christine finds the Cimzia prefilled syringe very easy to use. To some extent, it was the...
Cimzia was described as a ‘thick liquid’ and painful to inject but people found that taking the injection out of the fridge at least thirty minutes before injecting helps.
Christine leaves her Cimzia injection out of the fridge for well over half an hour before injecting.
Christine leaves her Cimzia injection out of the fridge for well over half an hour before injecting.
Some people have described Cimzia as being a very thick liquid…?
Emma finds it too painful to inject herself so a colleague at the hospital does the Cimzia...
Emma finds it too painful to inject herself so a colleague at the hospital does the Cimzia...
Anti-TNF clinic
Patients on anti-TNF and B-cell therapy attend a special clinic; the anti-TNF (or biologics) clinic where the medical staff monitors the person's progress on the new drug, discuss any problems, and try to spot possible adverse effects of the medication. The occasional extra clinic visit is needed because detailed forms have to be completed on each patient to enter details on to a national registry which is a requirement from NICE for these drugs to be available. People on the new treatments said that on average they attended the anti-TNF clinic every three to four months in addition to going to the rheumatologist clinic. They pointed out that they tend to see the same health staff at both clinics (with the exception of the anti-TNF nurse). (See also Regular Monitoring of RA and other diagnostic tests.)
Sandra talks about how often she is seen on the anti-TNF clinic and describes the care she...
Sandra talks about how often she is seen on the anti-TNF clinic and describes the care she...
Pearl describes the quality of care she receives at her anti-TNF clinic.
Pearl describes the quality of care she receives at her anti-TNF clinic.
Talks about her hospital appointments, including her anti-TNF clinic and the type of tests she...
Talks about her hospital appointments, including her anti-TNF clinic and the type of tests she...
Do you know what they are checking with the blood test? What are they looking for?
It's the change in your white blood cells isn't it? [laughs].
They check for your, I don't know what the count is, the rheumatoid factor?
So when, before I was on anti-TNF drugs, I had a rheumatoid factor of about a hundred and twenty and, obviously when you, you've start medication it starts to work that will go down so they can, they can tell by that how, how bad you are feeling 'cause it does reflect I mean in some people it doesn't but it's, in a lot of people it does reflect 'cause I could tell when I was feeling rubbish by looking at my rheumatoid factor [laughs] 'cause it was always very high so, they, they'll look for that and monitor that as well, but they, they ask you as well when you go for going to the hospital they, you know, they check all your joints regularly and see if any are particularly inflamed, and they'll also tell you how you ask you how you are feeling generally as well so that's always monitored.
In which way?
Sort of how, how you're feeling in terms of sort of tiredness or just, just general wellbeing as well.
They'll check all your joints and, and, and see whether they're inflamed but and, they'll ask you about how you're feeling but no other tests no.
If you have any questions or if you need any advice can you ask, can you phone anybody?
Yeah, you can phone the hospital whenever you want. Yeah so, and you can speak to, I can speak to the, the person who I see at the hospital any time I want so.
That's your consultant or your nurse?
The nurse, if I want to I, if I wanted to speak to my doctor I could do as well so, you know, help is there if you, if you need to ask any questions or anything and you can just speak to someone straightaway, so.
Information and advice
Knowing the implications of taking any new treatment was important for interviewees. Many people pointed out that rheumatologists and nurses did their best to ensure that patients understood all the facts about their new drugs before they started on them. Several people also visited the site provided by the drug manufacturer on the Internet and found it very useful and informative. (See also Finding information about RA).
Information and access to specialist advice is very important to people on the 'biologics' treatments. As part of their action these treatments do modify the immune system (which is why they work in RA), and some of the people we interviewed indicated that they experience more frequent colds and infections than before. Several people said that judging whether or not to take their medication when ill was most important. All those on biologics treatments said that they have been given a helpline number by their anti-TNF clinic. They feel reassured that, if needed, they can have access to specialist help and advice but several said that it is not always easy to speak to their nurse/doctor on same the day.
She was 'amazed' to be given lots of information and advice about her anti-TNF medication. Says...
She was 'amazed' to be given lots of information and advice about her anti-TNF medication. Says...
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.
Pearl indicates that since starting on anti-TNF therapy she has more frequent colds and has to...
Pearl indicates that since starting on anti-TNF therapy she has more frequent colds and has to...
Sandra was advised by her anti-TNF team to avoid sunlight exposure and to seek medical help if...
Sandra was advised by her anti-TNF team to avoid sunlight exposure and to seek medical help if...
They warn you about sunlight as well… and certainly I have found that if the sun is out at all, I’m not talking about going on, on holiday to a really hot place but just in this country, if the sun is out and there’s the slightest bit of warmth in the sun, it feels like my face is absolutely on fire so I usually wear total sunblock now and if I go out in the sun it’s for very, very short periods with total sunblock or I sit in the shade and I do need to keep covered.
Pregnancy and biologic treatments
Young women commented that doctors and nurses at their anti-TNF clinic routinely remind them of the need to avoid a pregnancy while on the anti-TNF and B-cell therapy drugs. Moreover, those women also taking methotrexate were told that they would need to 'wash' this drug off their system before conception. Several women said that they have a very difficult choice to make between being taken off drugs which are controlling their RA and having a child.
Professor Robert Moots advices and informs about biologic drugs and pregnancy.
Professor Robert Moots advices and informs about biologic drugs and pregnancy.
First of all, if a woman wants to become pregnant it's important to get the disease as well controlled as possible. And this might involve using a TNF blocker. Once the disease has become well controlled, then it's probably safe to try and get pregnant. But clearly during the pregnancy we want to try and avoid taking drugs where possible. So we tend not to recommend having a TNF blocker during pregnancy. But on the other hand, there are many women that have got pregnant on a TNF blocker and who've ended up staying on the drug through pregnancy without any problems either to them or to the baby. So whilst we think it probably will end up to be okay staying on these drugs through pregnancy, it's clearly premature to say that it really is safe. So we would recommend that you'd stop the drug either as soon as you realised you'd got pregnant or ideally just before you conceived. If you end up getting pregnant whilst taking it, then clearly it's important you discuss this with your rheumatologist.
For rituximab it's probably a similar situation. But as we don't have quite the same experience we would tend to recommend that women don't get pregnant when they've had a cycle of this until it's washed out of the system. I think the other thing that's very important to remember is that all of the biologic drugs work even better when they're given together with methotrexate. Now methotrexate is a drug that we clearly want to avoid in pregnancy. So that's another reason why if you're wishing to get pregnant it's important to think about in advance, and I think ideally to plan this with advice from your rheumatologist, who'll be in a good position to help you.
At every opportunity, her consultant raises the issue of the importance of not getting pregnant...
At every opportunity, her consultant raises the issue of the importance of not getting pregnant...
Yeah my, my doctor always mentions it [laughs] every time because she's petrified of people getting pregnant but she mentions it every time I go over the like, 'No I'm not having children.' but yeah they always talk about the risks of getting pregnant and anything so they say when, if you do want children obviously you need to let them know first and then they can plan, she'd always said, 'If you, if you wanted to have a child you need to plan it and they would take you off the medication and they would plan a course of what to do and, during that period.' So, they do explain that that's quite an important thing that, that you shouldn't' mmm.
And you are taking contraceptives any contraception?
Yeah.
Okay, and do you have any kind of plans to, to have a child?
No, no. Because I'd, I don't wanna come off the medication so [laughs] that again far outweighs the coming off the medication, I'd rather not so, I don't want to have a child because of that reason, and it's not a major thing for me I don't particularly crave for having a family anyway so, but it, you know? It would be, if someone wanted to have a child it would be quite difficult. I would suspect be, a decision to make because obviously, you can't be on that medication whilst you, whilst you're pregnant, so'
I think that would be a difficult situation.
Is this something you have discussed with your partner?
Yeah, yeah we've discussed it, but I mean it's never been, he's not, he doesn't want children and I, not, I'm not particularly that fussed I've never been, desperate to have children so it wasn't a big, a major decision to make but if for someone who wanted a family I would suspect it would be, so.
Concerns
Both people who were taking the 'biologics' drugs and those considering it, had concerns that it is relatively new, with little yet known about possible longer term side effects. Side effects after the infliximab infusion that one woman mentioned were indigestion, feeling tired and having a 'very low mood' for the first two days and about two days of itchiness the following week. Those on Enbrel and Humira mentioned a red mark or rash around the actual injection site that could last up to two weeks. One young woman reported a headache the first time she injected Enbrel. Pearl who is on Simponi injections had headaches that have now disappeared. Pat also reported headaches after Simponi infusions and nausea when injecting it. Sandra has noted that since on Cimzia she needs to used a sun blocking cream when going out otherwise, her face feels really hot.
Several people were more concerned about the side effects of methotrexate than that of their anti-TNF medication because they were experiencing severe side effects like nausea, sickness or hair loss. Two young women have decided to stop methotrexate and continue with their anti-TNF drug alone. Christine was on methotrexate for a relatively short period but has developed severe breathing problems that she attributes to this medication.
She couldn't cope with the side effects of methotrexate and stopped taking it. One of her...
She couldn't cope with the side effects of methotrexate and stopped taking it. One of her...
You were sick every day?
Feeling sick every day. And then there were times where I was actually sick. I also felt that my appetite was very suppressed on methotrexate. And just, in general, didn't feel too well.
The only thing I'd say about the Enbrel, is that I've heard it's very common but I permanently have a sore throat. Sort of get blocked nose and things which, it, for a while I feel like I've got a cold coming on. You know, it, it's just some part and parcel of the drug and I'd rather suffer with minor side effects like that, than have the full swing of the arthritis so.
I'd much rather deal with that every day than not having the drugs, so.
And were you given anti-sickness [coughs] sorry, anti-sickness tablets, or, did they help?
I've had anti-sickness tablets but I've never noticed a difference with them. I, they've never helped. I had folic acid with the methotrexate as well and I never noticed a difference with that either. So, I've no, they've never made a difference.
And when you told your consultant that you were not happy with taking, with taking it, what was his or her response?
A lot of the time it's depending on which consultant I've seen. Some consultants have sort of scared me a bit and said, 'You know, your arthritis will spiral if you don't.' Because methotrexate works very well with Enbrel. They work very well together. Which I got confused about, because when I was originally told about Enbrel, I was told it was this wonder drug, in fact, they've known cases of people to have done anything between four to twelve injections and it's almost like blasted it out of their system, and they've been fine.
And then you obviously hear about people who've been on it for a long time and. I'd sort of argue back and said, 'Well, if it's such a good drug, why does it need backing up with something else?' You know, and yes, I agree, it does help if you take it but, at the same time, I've made that decision that I can't deal with the sickness and the headaches every day. It interferes with my day to day life too much.
So I think it depends on what consultant you see. The, the last one I saw, he was very good and sort of said, 'You know, it's your decision. If you're happy to live with the degree of swelling and activity that's going on with Enbrel at the moment, then that's up to you. That's absolutely fine.' And he was very good about it.
So I've decided to stay off the methotrexate. Just for my own, just help me feel better from day to day really.
So how long have you been off the, the drug?
I've been off it for about six weeks now.
Six weeks.
And it has shown in my blood test results, the activity's a little bit higher, but I have sort of a line where, there's what I can deal with and there's what I can't deal with and this level of swelling, I can deal with, I will learn to cope with it. And I'd rather cope with that t
She is more concern about the side effects of methotrexate than the anti-TNF drugs. Besides she...
She is more concern about the side effects of methotrexate than the anti-TNF drugs. Besides she...
Its no because with the anti-TNF medications they're not' I mean I've taken the, the two already. I know all the side effects and to me the side effects of the anti-TNF aren't as bad as what you can get with say obviously methotrexate. And so with me side effects are this big thing, like if I see something on the side effects list that says like a sickness and stuff. I'm going to get that, that's just me. I get it into my head, 'I'm going to get that.' And obviously I'm probably worried like I could take methotrexate again now and I might not get any side effects, like I did before. So I research a lot. But I'm not really concerned about it because obviously I'm at the stage now, where I will try anything, just to see if it works, because anything is better, than being in pain constantly. So obviously if it doesn't work, then there'll be other options. But I will just, I mean I'm not going to be stubborn and say, 'No, I'm not trying to because I've research and this it says blah, blah, blah on the you know, information packs or whatever.' I will try it at the moment just because anything is better than like I am now.
Several people worried about still taking a range of other drugs and one woman had been able to reduce her painkillers, steroid and sleeping tablets since starting anti-TNF treatment. Those who had not been receiving anti-TNF treatment for long still hoped to reduce their other medications over time. Sandra, however, has asked for the reduction of her other medications to be postponed because she feels anxious that her stiffness and pain will come back.
Many people felt that this new treatment was their best option - having not responded well to other medication or suffered unpleasant side effects. They chose to 'live for today' with a better quality of life rather than worry about potential problems in the future. One young woman said that now she feels more positive than before about life in general, because she is on a treatment that is controlling her RA.
Says that the benefits of her treatment outweigh any concerns she might have about side effects...
Says that the benefits of her treatment outweigh any concerns she might have about side effects...
I did have questions about it because obviously it's quite a powerful drug so, but I think, when you're in a situation where you can't do anything and someone says to you, 'Well this is, this is one option, and it's been it, you know, it's been trialled with people and where it hasn't work, where other drugs haven't worked with them it's been very successful.' You do have questions, but at the end of the day what you're thinking in the back of the mind is actually if it works, you know, the side effects are irrelevant because you can't actually have much of a life anyway if you don't have it, so you do have quite a lot of questions but they're only as a sort of matter of course if you know what I mean? You like [laughs] you're so desperate to take something that's gonna work that that actually that far outweighs any kind of doubt in your mind about what other side effects are and, and things so, you, all you're thinking about is I want something that works [laughs].
If you're in a situation where you, you can't go out and you can't do things and, even the littlest things take hours, and, you know, you would take anything, you know, the side effects are, you, they're immaterial really because if you don't take it then you'll just end up housebound so, it doesn't really, the side effects are not really if, a major concern [laughs].
But did they talk to you about that?
Yeah, yeah they went through the side effects
Says that she has a more positive outlook on life since starting on Enbrel because she knows her...
Says that she has a more positive outlook on life since starting on Enbrel because she knows her...
There is I mean, I'm the same as anyone else. I do get my down moments where I think, 'Why have I got this?' And I do feel that I have my teenage years robbed of me, because I, I'd never stepped foot in a club. There's a lot of things I haven't done that normal teenagers have done.
But I'm certainly more positive now than what I used to be, and I do believe that's because of the drug I'm on. Because although it's there, it's not in your face as much and so I've had that. I can go out and do things more now that I want to do. I have my limitations but I can do them, whereas before, I couldn't do them in the first place at all. So I'm certainly more positive now that what I was.
I do find if there's a situation that's cropped up that's upsetting, or something, I tend to get more emotional maybe than somebody else, so someone will have to go, 'Boo.' And I'll probably cry. You know, I do cry at things a lot more which, I've been told is when I've been to hospital you get given questionnaires when we go, and they ask you a lot of questions about how you feel emotionally, especially from day to day.
And admittedly, I'll admit I can get down about things quite quickly but when it comes to the arthritis, I feel quite positive that it's being managed now and my outlook is better than what it was. I'm very positive compared to what I was before. So I, like I say, I think myself lucky compared to what it could have been.
And I, you know, if I'm having a down moment I think to myself, 'There's people out there far worse than what you are.' You know, cancer patients and things like that. You know, I think the same goes, arthritis can ruin your life, but it won't take your life or something like that, you know. And, well I don't even know if it will ruin my life, motto, that gets on with it [laughs].
I try to anyway.
So what have you done within these last three years that you were unable to do before?
I've been holding down a part time job, at this farm shop. But it's the general mobility from day to day that has changed the most. Something so simple as getting in and out of the car which, you know, admittedly still is a struggle now, but before it would take ages to get in and out of the car. Getting out of the bath.
The only thing I'll say that I can't do still to this day, is squat or bend or kneel on my knees. I haven't been able to do that for about eleven years, or since I was diagnosed actually. And it's amazing how something like that can really affect, you know, you think about it, if you drop something on the floor you'd think, 'I can't squat for that. I have to bend my whole body.' But I do work round that but it just general mobility, getting up in the morning, not being as stiff and as swollen and everything else. It is far better than what it was. I can also go out for longer periods of time.
I mean, when my arthritis was particularly bad, this was just before I was put on the Enbrel, I couldn't walk by myself. I was either supported by my mum and dad. I couldn't even use the crutches because my elbows were swollen, so I couldn't even use crutches to get around.
People who started to use anti-TNF drugs as part of a clinical trial were initially uncertain about their chances of securing funding to continue using this therapy. This was particularly difficult for people whose quality of life has been significantly improved by anti-TNF therapy.