I’m all for saving NHS costs, but this biosimilar medication just isn’t similar enough.

Since blockbusting drug Humira’s patent expired in late 2018, a number of biosimilar generics have entered the market, saving the NHS considerable expense. But patients like myself, who were switched to the cheaper equivalent biosimilar Amgevita, have felt let down by the lack of choice, the process of switching, the quality and efficacy of these biosimilars and are fighting to be reverted to the originator medication.

Behold, Humira — the wonder drug

Adalimumab, previously sold under the brand name Humirais an injecting medication for patients with Crohn’s disease, ulcerative colitis, rheumatoid arthritis and psoriasis, amongst other chronic auto-immune conditions.

The advent of Humira made its manufacturer AbbVie, very wealthy indeed. Humira became one of the best selling drugs in the world only 2 years after its FDA approval. This game-changing medication quickly climbed up the pharma charts, making billion-dollar global sales and earning itself “blockbuster” status in the industry.

For many patients like myself, with auto-immune diseases, Humira was considered something of a wonder drug. Prior to this biologic medication, my Crohn’s disease was poorly managed. I spent the majority of my twenties hopping between failing medications, fire-fighting flare-ups with aggressive steroids and struggling to live the normal twenty-something life of building a career, travelling, going out and all those other nice normal things.

I started taking Humira three years ago aged 28 and although my Crohn’s disease remained moderately active it finally gave me the stability to live a relatively normal life.

Back in February of this year, I received a letter from my clinical team advising me that my Humira was to be switched to a biosimilar named Amgevita - a generic equivalent of the faithful drug that I had become accustomed to. However, this letter also came with the glowing news that this switch was going to “save the NHS hundreds of millions”. So as a patient who heavily relies upon the health service and is keen on preserving its future, I wasn’t going to grumble about this minor change to my drug regimen, especially if it meant these funds could be redirected into patient care.

The NHS website also helpfully outlines the recent switch to biosimilar medication in more detail for patients to reassure themselves:

Biosimilar medicines generally cost less than the “original brand” biological medicine, but they’re just as safe and effective. Switching patients from the original biological medicine to a biosimilar could save the NHS hundreds of millions of pounds. And you shouldn’t notice any difference — your body should respond in the same way to the newer version of the medicine.

However, it appears that many patients are noticing a difference, particularly ones who have been switched from the originator Humira to the generic Amgevita — more about that later.

Why are biosimilars so cost-saving?

The typical life cycle of a pioneering drug like Humira begins with biopharmaceutical research companies extensive testings, eventually leading to clinical trials. If successful, the manufacturer presents its studies, applies for FDA approval and the drug is often patented well before it even enters the market. So in the case of AbbVie’s Humira it was protected for around 14 years before its patent was released to other pharmaceutical companies to copy into ‘generics’ or ‘biosimilars’. During this patented period, the manufacturer of the originator brand drug has the monopoly and the price of the drug reflects this at a costly premium.

Once the patent is released manufacturers of generics have comparatively lower costs to contend with because the originator medication laid much of the ground-work in the costly research phase of the drug. Generic companies don’t need to carry out nearly as many studies and that’s why they can be offered at a much cheaper cost, hence offering substantial savings to the prescribing NHS. There is often a race to market once the patent is released, and in the case of Humira, Amgen’s Amgevita was first past the post.

Were patients given a choice about this switch?

The recent switch of many biosimilars has thrown up a number of issues in patient care. I wasn’t personally given the choice to switch to Amgevita, just sent a (non-verbal) letter advising me it was happening.

This recent study published in the pharmaceutical journal finds that “Less than half of patients (47%) were asked for their consent before being switched to an adalimumab biosimilar”

The NHS site advises patients that “you should be offered a conversation with your doctor or specialist nurse before you’re prescribed a biosimilar” but this was not the experience for the majority patients.”

A series of briefings were developed by NHS England and NHS Improvement and published on the Specialist Pharmacy Service (SPS) website. One such briefing published in July 2019 stated:

“Clear, verbal communication is an important element of high-quality patient care and shared decision making. Patient experience is one of the three key parts of clinical quality (alongside clinical safety and clinical effectiveness).” It also stated: “No changes in therapy should be implemented without patient agreement.”

Okay, so I wasn’t explicitly asked to give my consent, but it’s saving the NHS money so that’s great and Amgevita is essentially the same drug, right?

Since switching from Humira to Amgevita in February 2019 I, personally noticed a number of differences. Almost immediately my Crohn’s symptoms seemed less controlled. I was frequenting the toilet more often and my energy levels dipped considerably. Most obviously, I started experiencing visible knocks to my immune system, causing me to contract a string of infections and viruses — from a random outbreak of Cellulitis to a sudden barrage of verrucas, to giant infected finger. Each time a biologic patient is faced with an infection, they are required to pause the administration of the drug until the infection clears. So I’ve been stop-starting Amgevita for the past 7 months and my Crohns disease symptoms have resurfaced.

When I reported my concerns about the efficacy of Amgevita to my clinical team, I was met with some scepticism by both my doctor and my IBD nurses. My doctor insisted that many patients have found the effectiveness of the drug to be equal. And the nurse, in an email correspondence, explained:

“Amgevita is essentially the same drug. Similar to buying various brands of paracetamol.”

This oversimplified, rather patronizing comparison to other generic medications doesn’t accurately reflect the complexity of biologics, like Adalimumab, which are carefully made from human cell antibodies.

The website Arthritis Health rather more accurately outlines how biosimilars compare to other generics:

“Biologic therapies cannot be made using a simple chemical reaction, such as mixing ingredients together in a laboratory, the way conventional drugs are made. Instead, biologic therapies are made using living organisms, such as bacteria, yeast, and even mammalian tissue and cells. Even small differences in the manufacturing and packaging process — as well as storage and administration — of a biologic can affect a drug’s ability to work.”

So on the matter of drug administration, how does Amgevita compare?

Just like Humira, Amgevtia is administered via a self-injecting pen on a fortnightly, or in my case weekly basis. The round needle tip end of the pen needs to be pushed down into the stomach or thigh muscle at ninety degrees, and a button at the base of the pen is depressed to sound a click and a ten-second pause is advised to release the medication into the patient.

In the initial formula of Humira, many patients reported a painful sting followed by irritated raised skin around the injection site. Having listened to patients, Abbvie modified their formulation to remove the citrate buffer and reduced the injection volume in an attempt to reduce the incidence of injection site reactions.

In spite of being citrate free, the biosimilar Amgevtia now carries this sting, setting patients back to a familiar discomfort from past drug versions. In addition, the contact tip at the needle-end of the pen rather unhelpfully contains latex, which has caused allergic reactions in some patients who were not appropriately advised or aware of this material.

However, the majority of concerns are about the quality of the pen itself. In my three years of injecting Humira, I never once experienced a faulty or defective pen. In just six months of Amgevita, I have had to report 4 failed pens. The button release is often stunted or jammed, the click sounds but the needle remains precariously fixed and other patients in my support group have reported the same.

These faulty pens are likely costing the NHS in wastage and certainly costing in patient confidence.

So painful and badly made injections pens aside, my team assure me the drug is practically the same, so am I just unlucky with my experience?

Seeking out answers, I took to the internet and discovered Amgevita Support Group on Facebook. In spite of being told by my clinical team that Amgevita is the same as Humira — there appeared to be numerous patient experiences expressing the contrary? While Amgevita is indeed proven effective for many patients, there seem to be plenty of ‘switchers’ who’s difficulties read similar to mine.

“My son was switched from Humira (with no side effects) to Amgevita for his Crohns in February 2019. Firstly he found the Amgevita incredibly painful compared to Humira. We had two faulty pens that wouldn’t inject out of 6 delivered. Then there were the symptoms. For the whole two months my son was on Amgevita he experienced the following side effects: Sore throat constantly, swollen glands, mouth ulcers, skin conditions such as fungal infection under his armpits, ringworm on his forehead and eczema and impetigo on his chin, fatigue, headaches, nausea, tummy ache. Our GP felt it had totally run him down and lowered his immune system too much. He was in remission on Humira but felt absolutely terrible on Amgevita. After two months he refused to have any more injections and I had to beg his consultant to switch him back to Humira. They did and he is really well again now, back to where he was before.”

“I started Humira in September 2018, it worked perfectly and I was healthy on it. I switched in Amgevita on the 1st April and started going downhill. By mid-May, I had a full Crohns flare and by the end of June I was back on steroids. I had an appointment yesterday and they feel that the injections have failed, I feel it’s been going downhill since starting on the Amgevita.”

“I started Humira in April 2018 for Ankylosing Spondylitis and recurrent Uveitis switched to Amgevita in February 2019. I had hot flushes after the first injection which quickly turned to mild flu symptoms which then turned to severe flu symptoms. Finally leading to muscle weakness, random twitches, and patches of burning sensations on my skin. I felt completely drained of energy, body like lead, throbbing pains down both legs, severe pain in both feet -can’t walk flat-footed at all, sore gums, loss of appetite, severe constipation, hot flushes every half hour, dizzy light-headed and completely wiped out. I’ve honestly never felt so unwell”

“I was on Humira for 3 months and it began to work for me. I have Crohn’s disease and my toilet visits went from 4 times daily to once a day. I was then switched to Amgevita and my toilet visits are now 2/3 times daily so it’s definitely not working as well as Humira.”

“Amgevita flared my skin up and also gave me bad eczema. Also been feeling very run down and tired. My consultant explained how they are both similar biometrics but do have differences and she has seen several people reacting badly to these differences.”

And these are just a handful of stories shared in the facebook group.

So the patients in my support group are now being reverted back to Humira, so why can’t I?

Other patients who have experienced side effects or decreased efficacy with Amgevita are being given the option to revert back to Humira. But following an email with my IBD nurse I was told:

“It’s physically not a possibility for us anymore, Humira is not on our pathway of approved drugs. So, unfortunately, this isn’t something our trust can do. Other parts of the country may be different, but the North Central London pathway doesn’t have it on at all I’m afraid.”

It seems unacceptable that a patient can be taken off an effective drug, replaced with one that is less effective and of much poorer quality in terms of administration and then refused to return the drug, which was proving to be effective and especially unacceptable when other patients are being given this option.

It’s disgraceful that I am having to seriously consider switching hospitals just to be re-prescribed Humira. Surely all patients should have equal rights to medication, no matter their location or hospital, otherwise, isn’t it discriminatory and essentially postcode lottery in patient care?

This medical review on biosimilars concludes that listening to the experience of patients is a crucial element in reviewing the efficacy of biosimilars:

“As with…biosimilars already on the market, real-world data and pharmacovigilance studies are critical to developing long-term evidence to provide assurances on efficacy as well as safety.”

This notion of shared decision making is not something I have experienced with my team.

Having shared my experiences and concerns about Amgevita with them, the only option being offered is to start an entirely new biologic drug, unrelated to Humira / Adalimumab altogether. Starting a new drug is an uncertain process. It can take up to 6 months to give a new medication a fair chance to work and of course, if it doesn’t it’s wasted time and will have costed me another year of unsettling life limbo. My wishes to plan my honeymoon and start a family continue to be halted while I wait to see which drug awaits me next.

Something about that doesn’t seem right or fair at all.

It’s Not Always Plain Sailing

It’s easy, as a blogger to get sucked in to the warped mentality of needing to behave like some shining example or beacon of idealised solutions to your and everyone else’s problems. But in reality, things remain just as challenging and certainly don’t go to plan, even when, and especially when you’re writing about them. I’ve always wanted this to be a warts an all sort of blog, about the honest ugly challenges, physically and emotionally that go with being a Crohns sufferer.

It’s taken me some time to sit and write this post, as I have been trying to make sense of things and be a lot easier on myself about these recent weeks. But what better way to process things, than to spit it out right here.

As readers will know, I have been working on an elimination protocol with a nutritionist, Molly. She’s been excellent, and despite the distance: London to Toronto, she always has my back when I am feeling less motivated. This new way of eating is about rebalancing my plate, and the foods I nourish myself with. It’s about giving my digestive system a rest, to heal and recover from the numerous traumas it has experienced, from flares, bleeding, heavy meds, viruses and anxiety. It’s also about trial and error of foods in my diet. During this process, I have cut a lot of food groups out. At times it’s been really difficult to make the right choices, but I muddled through regardless and as many have pointed out, it’s a big achievement that I stayed so disciplined all this time.

Three weeks ago, I moved home and so packed up my kitchen for a weekend. During this time, my partner had some good news worth celebrating with a fancy meal. The next few days we both felt exhausted from the move and craved a quick meal while still not having proper use of a kitchen. These tricky moments, lead us astray from our carefully planned out nutritional protocol that we had been so strictly keeping to and so – we broke a few rules.

It was amazing how immediate the results of this slip up were. Within a day of eating a little sugary dessert, some take away chips and some dairy likely thrown in somewhere – I felt the worst kind of hangover. I was a rotten, depleted, head-ache ridden mess and I was mad at myself, for messing it all up for the sake of a few moments of short lived yums.

I quickly contacted Molly to come clean about this. But her response surprised me. She saw the experience as a good one. She told me that slip ups were frankly to be expected during a tumultuous time like moving house. But more than that, recalling how crumby I felt the next day would be a powerful memory to help me reason why I’m doing this. She was right, and I have since got right back on my game, eating well, cooking whole foods and taking my supplements.

But this is where I must be honest and jump ship from the plain sailing boat, into my rickety canoe with just one paddle. Despite, my continued strict efforts, and conscious changes – lately my Crohns has gone a little off course. Since we moved, my bowel motions have loosened, I’ve seen blood in the toilet, and have even had cramps. Admitting this out loud when people ask ‘how’s it going with the diet?’ has been tough. Instead I have an internal monologue, where I tell myself I have failed somehow at proving that I can feasibly help myself stay on top of this illness.

But then it occurred to me by internalising those anxieties, that fear of failing, that need to prove something and that dread that I’m running out of options and going to get sick – i’m likely making myself feel more unwell. Instead I’ll continue to ride upstream in my canoe and choose to acknowledge these fears and proclaim that It’s okay that I don’t have the answers yet about what works and what doesn’t, but I’ll continue to ask questions and to keep adventuring against the current.

After all, that’s the reason I’m blogging. It’s the reason I’m trying things. Since I decided to treat my experiences with Crohns as a research project instead of an affliction, I’ve felt more empowered and purposeful than ever. So, if the truth be told, I’m not feeling great right now, but I know it doesn’t invalidate my efforts so far. So I’m going to keep the faith like I promised in my very first blog and keep paddling.

love Gutsy.

Optimistic October

After a pause to think a little, here’s a belated winter update on things with me.

As you will likely know from reading other posts – I was all set to begin my Humira treatment in October.

My last Crohns flare provided a familiar feeling of pure desperation that every Crohn’s sufferer will know all too well, and I saw out the summer grappling for solutions from my consultant. I just wanted help, anything to stop the bleeding and the fatigue. I was ready to become a patron of the self titled Quick Fixers Club, because I couldn’t turn the situation around by myself, or get a handle on what had caused it to get so bad again.

After a two month stint of heavy duty steroids, I was just waiting, (pending funding approval) for the pricey wonder injection – Humira. With the funding swiftly granted, and my appointment letter sat in my lap for my initial “loading dose” of four belly and thigh injections, something in me was resisting again and it was more than just my needle phobia.

I was surprised to discover that by Autumn; having weaned my buzzy bod off the steroids, I found myself feeling healthy, energised and even my poops were solid miracle nuggets of promise. I wondered, what if I could continue to ride this semi-simulated health wave that the steroids had left me with? Maybe I just needed to try a little harder to understand and overcome my triggers. Perhaps this time it could be different.

I felt pretty optimistic after lots of reading and blogging, discovering the incredibly encouraging health movement of functional and integrated medicine; and being part of a Facebook group of like-minded patients. I found that educating myself in the ways of auto-immune issues, cell health, gut dysbiosis and permeability, gave me a non-toxic faith injection which felt wonderfully potent. I couldn’t ignore all I had learned. I finally felt empowered by a better understanding of my disease, where before I had just felt clueless and at it’s mercy.

I called my IBD nurse to postpone my treatment. Predictably she wasn’t massively interested in my recent reading and perspective on auto-immune diseases. She, in the nicest way possible, made me feel like just another new age and sweetly naïve kiddo for suggesting that I might like to re-assess the environmental causes of my bodies confused immune system. She simply said ‘well if you feel well and in remission, we don’t need to start the Humira right now, the funding lasts 12 months’. So since that chat, I have been wishing on every loose eyelash I find, that I can overcome this thing and make my remission last an entire year without giving in to the heavy meds.

Since that conversation, I have doing a lot more thinking about the steps I need to take to stay well. I know that beating Crohn’s is a complex medley of things, and a recipe that varies from person to person. But every ingredient is essentially required, it must be measured and often takes a lot of discipline and awareness to see it through.

My current slow cooked recipe for survival, up next.

Auto Immune Is A Fascinating Thing

When people ask me how I feel about going on Humira, I should probably just respond with ‘it’s complicated’. When I tell people I have been refusing the drug for close to 5 years because instinctively it doesn’t sit well with me, they look puzzled. Perhaps it’s time to explain my logic at this time when unfortunately it looks as though I have run out of options and am on the road to beginning Humira in just a few weeks.

Before I explain what Humira is; let me explain a little more about Crohns; as an auto immune disease.

Auto-immune means the body’s immune system appears confused and attacks it’s own healthy tissue creating an inflammatory response somewhere in the body; like bleeding, rashes, pain etc. This response can be seen in diseases like Crohns in the bowel, Rheumatoid Arthritis of the bones and MS of the nervous system. But it can also be seen more commonly in conditions like Psoriasis, Alopecia and Eczema. In all of these instances, GP’s often prescribe some form of steroid treatment, be it injection, ointment or oral medicine. Steroids are powerful anti-inflammories which lessen the reaction to the auto-immune response but cannot put a stop to the response reoccurring. To put it simply, modern medicine doesn’t seem to be interested in educating it’s patients to question what triggers an auto-immune response, which is often very personalised to each patient and can be noticed and managed with careful consideration. Instead, they will prescribe a quick fix bandage and the patient will go away, feeling like they have been seen to, and often the problem will re-appear as it was never truly dealt with in the first place.

Having taken many hundreds of milligrams of steroids in my time, and causing my poor bones some hefty damage in the process. I have now been offered a different type of drug; Humira – a biologic. For many, this drug seems to have offered up a miracle. It has allowed chronic sufferers of arthritis and Crohns to experience relief and normalcy. But for me, the way the drug works, yet again overlooks each patient’s personal auto-immune triggers and merely blocks a crucial cell protein that is designed to take care of that patients immunity.

Humira is called such, because it delivers human cells in a neat little injection into the patients body. These cells are called TNF blockers as they wander along to the part of the patient’s cell with the naughty over-reactive immune proteins and bam! Block it – put a bag over it’s head and grip it into a tight headlock, so it stops being overdramatic and upsetting the chemical peace. Now that it’s blocked and silenced, the patient won’t have their pesky auto-immune response anymore, but rather unfavourably they won’t really have much of an auto-immune response at all. So the likelihood of getting something nasty and not being able to fight it, is increased. This includes little nasties like viral infections and the big nasties like cancer. So maybe you can begin to see my reservations?

A trainee doctor friend of mine, very kindly tried to reassure me about Humira by making me consider that Crohns is purely genetic. “It’s a genetic mutation whereby your cells are over stimulated to fight. You can’t reverse the cause or get to the origin because your DNA is constantly making new cells that have the same issue. So you need to do damage control.”

This made sense to me briefly, I am indeed predisposed to IBD because my father had it, and his father likely had it. And the gene pool I belong to; with my persecuted European Jewish ancestry intermarrying right left and centre was not exactly known for being very large. But although my genetic disposition doesn’t help, there are other triggers and factors to the disease, and similarly ways of avoiding flares.

It’s certainly cannot be a co-incidence that Crohn’s prevails in Western super-sanitised cultures, but in countries where hygiene is more compromised, and immune systems develop to be strong from birth – no Crohns exists. This to me highlights that Crohn’s is not merely genetic, but environmental factors and the intestinal microbiota – our guts complex tapestry of bacteria good and bad, has a very large part to play in our recovery. After all, our gut health accounts for two thirds of our immune system!

So when you ask me, how I feel about Humira, 700 words later – you too, may feel “it’s complicated”. But it’s only complicated because I am not, and never will be a passive patient. I will always seek to question the causes, and not just the affects of my body’s malfunctioning immune response.

Let Go

It started with a conversation. Sat on the sofa, in my reflexologists dimly lit basement studio  – after a long treatment. We discussed the timeline of my illness, the recent unending 5 year episode that seemed to be stuck on spin cycle. A flare, career disruption, time off work, resorting to steroids, a new lease of life, new energy to try new regimes and methods of eating, exercise, healing, a period of remission and then – a relapse. I had been relapsing for five years, the last five years of my supposedly wild and adventurous twenties. Realising at that moment that I was experiencing my Crohns on repeat was a shocking revelation to me, and it actually ended up being the catalyst for this blog.

Although on paper I am a proactive ‘sufferer’ in my efforts towards regaining health; I seek opinions, read articles, explore diets and new regimes. After doing this for a long time; I no longer wish to tread water, I feel it’s time to question the cause, as well as focus on their effects. I feel I have to ask not just the how is this happening to my body and how can I prevent it, but the why. What caused me to have five years of perfect health at college and university, a complete inertia, and then poof – a seismic wave of fluctuation year, in year out.

During this conversation with my reflexologist she recommended me a book. She suggested I question the emotional turbulence at that time in my life and question what bearing it had on my health and wellbeing.

Now, you may be reading this thinking it’s utter nonsense to suppose that a disease can be made worse by upsets and problems; it’s a disease after all. But if you really struggle to see the connection between how we feel physically and emotionally; then question the phrases ‘I am feeling a little run down’, ‘under the weather’, ‘I’m not feeling so good’. Because our feelings are part of our beings.

I ordered the book online then forgot it was coming. When it arrived, it made very little impact. In fact, looking at the questionable cover artwork made me consider sending it back from whence it came. But I decided to pick it up and take it on the tube, I read only the first chapter. The book didn’t move me, the writing didn’t inspire me – but it spoke to me quite matter of factly and allowed me to shift focus to the beginning of my troubles.

The book’s blurb explains; The physical body is seen as a mirror of the consciousness within, and specific tensions on the physical level are seen as reflecting correspondingly specific tensions in the conscious about specific issues in the life of the individual experiencing the symptoms. 

This translated to; it’s time to process the things now, that you didn’t process then. Because however I managed those feelings, it hurt me more and it’s no coincidence that the most traumatic break-up, ending of a chapter i’ve ever experienced was the same year my Crohn’s troubles really began.

You’re wondering what I did next? That deserves a blog of it’s own.

A Brief Hiatus

A few weeks back I started to feel a strange sensation. With every gulp of tea, or swallow of a hot meal ; I felt an overwhelming burning in my chest, right behind my breast bone.

I put up with it for a few more days. Without noticing, a week had gone by during a chaotic period at work and the burning stuck with me like an aggressive splinter. It seemed to be getting worse each day and I was even struggling to swallow my morning cuppa – which is a dire situation at the best of times.

One Friday evening I got home from work, exhausted, and by this point was in full throes of a flare up, so just making it through the working week felt like such a victory and I was just about ready to pass out. But the burning seemed to be rising in my chest, up my throat and between my shoulder blades. While Aimee drifted off to sleep I sat bolt upright in bed knowing this felt wrong and began to worry.

After some late night Dr Google self-diagnosing I started to get agitated, wondering if I had developed that rare form of Crohn’s that is listed on every leaflet, wiki, advise page – and is somehow unspoken, rare and terrifying. What if my Crohns was spreading along my oesophagus, into my upper digestive tract?

Without further hesitation I rang NHS 111 for advice. The lady on the other line listened to my description and despite making it clear that ”I have Crohn’s” and it feels like a digestive sort of burning – she sent an ambulance for me. It arrived flashing outside immediately and the paramedic came up to my flat, into my room and we chatted while I sat on the bed, feeling like THE Princess and the pea. He explained that any signs of chest pain have to be checked out as a matter of urgency and I shouldn’t feel like I am wasting anyones time. And actually, who was I really to disagree, with both my dad and my maternal Grandpa suffering from heart conditions.

He took me inside the beepy ambulance and stuck pads on my chest to perform an ECG, to reveal very chirpily that I was not currently having a heart attack. He checked out my blood pressure, which seemed a little low, and insisted I come to A&E for a definitive check over as if nothing else I looked pale and anaemic – which no doubt I was after all the blood I had been passing in the bathroom. I politely declined his offer of a ‘free ride to the hospital’. As any experienced Crohnie knows, it’s a bad idea to admitted or seen once it turns weekend o’clock, least of all in A&E on a Friday night as the booze related incidents roll in and the skeleton staff of doctors drift about the place. He agreed that is was likely to be a gastric pain, and suggested I tell my consultant, who I was seeing the following week in clinic.

After a few prudent chews of Gaviscon and some painkillers, I fell asleep in my own bed.

Sure enough, my consultant took the whole episode pretty seriously and booked me in for an endoscopy. Within a few weeks I have having a camera shoved down my throat to reveal I had something called a hiatus hernia. This is apparently very common, particularly among the usual suspects of hernias; older people etc. But also for Crohns sufferers, particularly those who have dabbled in prednisilone. I sure had. So here I was, with yet another diagnosis to add to my CV. But I felt relieved to have it, because as long as my Crohns only lurked in my small bowel and no place else – I could sleep soundly again.

Prednisolone, Friend Or Foe

There comes a time in every Crohnies life, when things seem to be going from bad to worse and managing basic social functions like going to work, or leaving the flat, become problematic. For me, that time is now – my flare up has begun to take hold, bound by fatigue I feel useless and my pathetic attempts to help out around the flat have just become embarrassing.

When you feel like this daily, you crave nothing but your old self back – your energy, your normal poops, your painless belly, your confidence to go out or travel to work. Thankfully there is a wonder drug on hand to help with these times, Prednisolone, or known more commonly as ‘steroids’. A powerful, quick-fix drug that comes in the unsuspecting form of tiny red pills, that you take daily for around 6-8 weeks, lowering the dose by a pill every week.

A typical response to the revelation that I take ‘steroids’ by friends or colleagues is a weird smirk or a comment like, “Well, at least you’ll be hench!” (cue flex of biceps). Initially presuming I’m taking anabolic steroids, with becoming a body builder, a convenient and amusing side effect. In actual fact, Prednisilone is a corticosteroid and has no link with the steroids taken by athletes for beefing up muscle mass.

So if steroids are a wonder drug and help Crohn’s sufferers to feel better, then what’s the big deal in taking them? Well, for me steroids are very much a two-faced drug. On one hand they allow you to operate and regain a sense of normality, getting you back to a place of average wellness. But that sense of normality isn’t really a normality at all; steroids take me to a state of hyper self.

When I take steroids, I feel strangely wired and completely unable to relax. My emotions are muted, and I become almost robotic, having only logical, cold, rational interactions. I experience a strange creative euphoria, which often leads to overproduction of ambitious ideas and projects, which I cannot sustain. My sleep is affected, staying awake with a noisy head for most of the night, yet I’ll still spring into action like I’ve drunk 7 espressos the following morning.

This kind of over-energised feeling in many respects gets a lot done. One time, I moved house on steroids. I didn’t just move house that day, immediately after unloading all the furniture and boxes, I hired a man and van to drive me to the other side of London and back to collect a second hand Futon, followed by a trip to Argos to buy various flat pack bits, followed by an evening assembling said flat packs and unboxing everything into its rightful place. I was a machine and nothing could stop me, my partner was terrified, yet I couldn’t see the problem. Bizarrely, when I am on steroids, my need to tidy the space around me becomes obsessive, a side of me that isn’t normally there at all.

Aside from these strange personality effects, the physical changes are gross too. My face becomes enlarged, chubby with swollen cheeks – known commonly as ‘moonface’. My already hairier than usual face becomes covered in fine excess dark hair. I tend to eat more than usual as my tummy feels numb and my sense of fullness disappears. I therefore gain weight, swelling from all angles.

These side effects will last around 3-4 weeks, while the dosage remains high. Once the drug is tapered down, I come down like a deflating balloon to earth, and to normality. When I first experienced taking steroids, the come down effect caused me to have a mild identity crisis. I wasn’t sure who I was, what I was into, even how I wanted to dress. It was like my circuit had been sparked and reset.

The doctors will warn you about the insomnia, the appetite changes, the weight gain, and the moonface. But nobody ever warned me about the shift in my character, the new persona I would experience. Even now, few doctors will acknowledge those side affects, and just a few articles and message boards online, allowed me feel comforted learning that they were indeed linked to the drug. But when I was 18, and experienced this monumental shift in my character for the first time, it rocked everything around me – and my most significant early relationship broke down when my then girlfriend couldn’t understand or relate to my behaviour, and didn’t believe it was linked to the steroids. That was a really difficult time, and I quickly learnt the steroids were nothing but a false friend that I didn’t want to trust again.

I am lucky now that my partner Aimee knows what to expect from the drugs. She knows I will get panicked heart palpitations from the surge in adrenaline, that I’ll be a roidy bitch and say cold, cutting things that I don’t mean. She knows to let me go on a cleaning frenzy, that I’ll probably start a new art project and will lack awarenss or empathy towards her during these times. It’s amazing what she puts up with. But it’s incredibly reassuring that she knows what to expect and does a great job of reminding me, “It’s the steroids – not you”.

Now, whenever I begin a course of steroids, I say a little goodbye to Aimee. I warn her and tell her I am sorry for the way I am probably about behave, and the changes in me. She always laughs and comforts me, knowing it’s not permanent – and it’s the sacrifice we make to get me better. She is my rock during these times.

So here I am now, flaring again. Faced with a prescription in front of me for an 8 week course. Perhaps you might understand my reservations, sparring with a desperation to just feel better.

Knowing if and when to take prednisolone is a predicament I’ve come to know very well. We have become regular acquaintances over the past 5 years, after many episodes resisting and eventually giving in to it. But pred is certainly not the sort of acquaintance you want to spend very long with, or come to rely upon. It turns your bones brittle, increases the likelihood of heart failure, causes fluid retention, and for me temporarily hijacks a sense of self. But no matter what it puts me through, prednisolone is a seedy old lover I just keep crawling back to, and here I am again.


Keeping the Faith

Today’s episode if my life, rather perfectly resembled a surrealist painting of the ongoing feeling of being torn, between two worlds, two rocky paths, or two old quarrelsome friends who claim, to be right, in believing they can help heal my Crohn’s disease.

On one rather well respected side, we have the IBD doctors, the hospital and their medicines designed to treat the effects of my Crohns – a disease not fully understood; versus the alternative camp; dietary adjustments, healthy supplements, exercise and de-stressing to help treat the environmental factors that play, in my view, such a key part in staying well.

I think any reasonably intelligent IBD sufferer, or a sufferer of any chronic illness with a few healthy inquisitive cells will at some point find themselves querying the course of action suggested by their consultant.

For me, it’s been a conversation that plays out routinely every 6 months, every time I find myself flaring. My consultant has been insistent that I consider the biologic drug – Humira. A drug that although proven to help a lot of moderate Chronies like me, frankly terrifies me. Not only because I am a needle-phobic nincompoop and desperately fear jabbing my thigh flesh on a fortnightly cycle, but because it comes with some pretty sizeable warnings. Cancer; lymphoma being the prominent one. Aside from my more rational reasons behind refusing the drug – my emotional association with a drug like Humira has always felt like admitting defeat somehow, and instinctively (if I’m allowed to have those) it’s always just felt such a big decision, and the wrong one for me.

But today I found myself in an all too familiar position. I am currently going through a flare up, feeling desperate to resolve it; as feeling exhausted, pained and passing blood really does wreak havoc with your career and social life, not to mention your will to remain positive. Over the last 5 years, I have experimented with so many diet and lifestyle shake-ups that it’s hard to even know what has worked, and why if it did, it didn’t last.

Today I had a meeting with my new consultant. I changed hospitals as my last consultant’s Humira bashing agenda become tiresome, along with his regular cancellation of clinics to accommodate his voyages across the world. I was nervous to meet my new one, and spent the morning collecting all my hospital letters and notes for them. I found myself plotting a little chart to help me remember the timeline of illness and wellness over the past 5 years which had become a total blur. I wanted to be prepared, in case typically, they weren’t…

Surprisingly, she was everything I dreamed she might be. Thorough, interested in my case history, my life, my interests, even my feelings on the proposed drugs. And even better – more than willing to book me in for every kind of test going to get an accurate diagnostic picture on my current state of IBD health before making any treatment decisions. I went along with my mum, who was nodding along and practically danced out of the clinic.

Feeling positive, with blood forms, stool pots, and CT scan appointments in hand, we agreed to meet again in 6 weeks to review the possibility of Humira or Infliximab, something I have never before agreed to.

So why did I agree to it? Plotting my little graph today really helped me realise that I had lost 5 good years of my twenties, battling this monster of a misunderstood disease. I’ve been dragged through hospitals, swallowed thousands of steroids; hooked up to IV’s, put on excess weight, lost sudden masses of weight, paraded my embarrassing moon face around regularly, felt like a horrible angry person with a beard, and struggled to help employers understand or empathise with any of it. Not to mention all the stress I put my partner and our relationship through. I realised, this morning, that these regular flares had become my normalilty. Maybe it was time to give up on the alternatives, the paleo meal plans, the downward facing dogs and endless supplements and admit that it was time to ‘just get that Humira in your leg!’ as my last consultant so tactfully put it.

That should be the end of the story. But it wasn’t. In a strange turn of events, heading home from hospital – we found ourselves walking in a naturopathic chemist, looking for something iron based to help me with my anaemia and tiredness. The assistant suggested we join the queue to speak to a naturopath who, lucky for us – gives free advice on Wednesdays. I was feeling so weak after giving 11 phials of blood that I didn’t mind a little sit and wait.

So after ten minutes, a doddery Asian man in a stained white coat invites mum and I inside a tiny pre-fab booth, constructed out of old display boards. He asks us to sit down, in the stark but messy looking room complete with posters about impotence and heart disease plastered on the walls. He reaches for my arm and checks my blood pressure using a gadget, next to it’s open cardboard box that looks borrowed directly off the chemist shop shelf. After my BP reads fine, he takes my wrist to feel my pulse. This quiet man has said hardly any words until this moment, just some gestures to sit here, give my arm etc. While holding my wrist tightly between his thumb and forefinger, we pause. He confidently chirps ‘you had a shock when you were a young girl, that is the cause of this’.

Instantly I felt my eyes roll and I engulfed the room with a cynical sigh. Today I didn’t feel like being a vulnerable believer, I had completely lost the faith in these people and felt angry that I’d wasted all these years trying to believe I could heal myself.

But my mother pressed him; ‘a shock? How can it be, what do you mean…a shock?’.

‘Don’t get over-excited, let me explain’ he replied at an uncomfortably slow speed. He started drawing questionable diagrams, explaining that because my nervous system got a shock, the peristalsis in my gut wasn’t working correctly. And because of this I had rotten matter in my bowels and I wasn’t able to absorb energy effectively. He wrote a lengthy list of foods I should eat, and shouldn’t and then prescribed me a tonic consisting of all sorts of naturopathic remedies and capsules to take daily.

Looking over at my mum, her expression seemed to have changed from weary cynic, to thankful and converted as she later happily filled the basket to the tune of £86 worth of remedies. I insisted, she didn’t need to bother, and we could just leave. But she firmly asked me, ‘what do you have to lose? What’s one more try? If it doesn’t work, then you’re back at the hospital in 6 weeks anyway’. I couldn’t argue with that.

This all happened in one afternoon. The medical action plan by my consultant, and the naturopathic guru named Mr Mistry and his strict regime of supplements and diet. On the train home, laden with a hessian bag of remedies in one hand, and a pack of ‘Biologics and you’ leaflets stuffed in the other. I felt like the perfect illustration of a confused IBD patient.

And that I suppose is why I decided to write a blog like this one.

love Gutsy.