The Return of Humira
Well, I have had to take my meds.
A couple of months ago, I had a pretty rough time. After the euphoria of seeing my consultant, playing mind games with her registrar and officially coming off my medication, I was feeling amazing, confident, bouncy, full of myself and ready for a drug free ‘rest of my life’. The reality, however, is that I’m not cured.
Bugger!
My daily log tells the story. From the start of February, things started to take a dive and I was feeling more unwell every day.
Unlike me, I started to worry. I tried to be patient and give it another day, and another, and another. But, it just wasn’t happening.
In the early hours of Thursday 14th February, after being unable to sleep, I hobbled out to the garage (where I keep the fridge for my drugs – there’s food in there too, I don’t just have a ‘drug fridge’) and injected. This was a big thing for me.
I’ve said before that I’m lucky, in that Humira establishes itself readily, so I was quickly feeling better – as the following days in my log show.
I was, however, quite disheartened because I had been clean.
But, really thinking about it, while I had been very clean with the food I was eating, I hadn’t stopped drinking. Well, I can’t resist a gin and tonic or six now and then! Who can? Well, I suppose lots of people can, but I do have a constant battle with my willpower – constant.
The news of my demise was greatly exaggerated – by me. It did elicit some interesting opinions from my family, though. My wife said, “Did you really think that you were cured?”
This took time to sink in. My wife has been my greatest support. She was the one who handed me the book ‘The Paleo Solution’ and said, “You’ll never read it”. She has been hugely encouraging and is the steadying force when I’m feeling down or reaching for the bread. She has stopped me from giving in lots of times. She is a formidable woman. Intelligent, tenacious, splendid, sharp, clever, quick, funny, brilliant and gorgeous. I am her biggest fan.
But, really. Honesty at this level. It took me by surprise. And it made me think. Did I REALLY think that I’d be cured? To be honest, yes.
No.
Yes.
Truth is, I don’t know. There was a small part of me really hoped that I’d be well and truly off the drugs. I was disappointed.
Then, I was having a chat with my eldest daughter. She said the same thing! “Dad, did you really think that you’d be cured?” She said this with a kind of ‘Dhuh, stoopid!’ look on her face. She’s a teenager after all.
So, a bit of deja vu and a reality check from the women in my life.
In the space of a few days my family had brought me back to earth and made me wonder if I really would/could/should come off the medication. It took me a week or two to get over this, which surprised me. I’m pretty upbeat, positive and optimistic most of the time and this set me back. I couldn’t get it off my mind. This was not a comfortable space for me to be in.
It’s a big cliché but being positive is essential for life with a chronic condition – or even without one. Life in general can be a bit shit. I have often been in lots of pain or constant discomfort. I’ve had painful operations and spent months recuperating. I’ve had wound infections, been catheterised more than once, had a feckin’ big needle stuck in my groin to aspirate fluid from my hip and had all sorts of other tubes of varying sizes thrust into bits of me.
Everything I’ve been through has been an experience and I have tried to treat everything as just that – an experience. I do think that attitude has a lot to do with wellbeing.
So, after my reality check my positivity has returned. Hurrah! Since taking my drugs at the beginning of February, I have felt the need to inject again – two weeks ago. But, the difference is that I have accepted that I MAY, that’s MAY, have to have a helping hand now and then.
I’m not giving up. I’ve gone ten and a half to eleven weeks between my last three injections and I’ve been feeling pretty good.
The experience leading up to the 29th April (my last injection) was nowhere near as severe as the build up to the 13th February, as you can see from this excerpt of my log. The difference this time is I have only taken Humira – I’ve left the Methotrexate out of the equation for now, just to see what happens.
This is all still an experiment and I’m still learning what I can tolerate and what I can’t. It’s all about the choices I make. As my wife keeps saying, “Is having a drink now and then something you’re not prepared to give up? You know it’s not Paleo. You need to make a choice.”
She’s right of course. Just like Neo in The Matrix Reloaded, it’s all about choice.
And making good ones.
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Arthritic Drummer 
Hi Scott,
I was pointed towards your blog by Carole, we all went to the same High School a hundred years ago.
Your blog is great, such a well written (must be that good High School!) and honest account of your health issues. It sounds like you have a great support network with your family, you’re a lucky man.
I hope you continue to manage your health and the good days outnumber the bad.
Julie
Hi Julie, blimey it has been a long time!
Thanks for having a look at the blog. I’m trying to write as much as possible but I’ve been a bit lazy in the last couple of months. Knowing that people read it, however, gives me the push I need to keep it going!
I was at your old place a few months ago, playing a gig at the Laurel Bank. It’s changed a bit since the 80s, but every time I’m there or drive past, I always think of you.
I haven’t spoken to Carole in ages either. I hope you’re all well and life is treating you well.
Scott
Hi Scott!
And I’ve been pointed in your direction by a work colleague, Jono Lee (Jo’s husband who I believe is a distant cousin of yours). I was (eventually) diagnosed with psoriatic arthritis just over six years ago and have run the gamut of various drugs ever since. I had a good year on Enbrel/Etanercept but have been in pain since that wore off in Dec 2011. I’ve now been on Humira/Adalimumab for five months now with no improvement whatsoever so now they want to put me on Azathioprine as well. So that will be TWO carcinogenic drugs I’m on then. I’ve decided to try and sort it through diet, hence Jono telling me about your blog. I’ve cut processed food, sugar, dairy (I’m vegetarian and almost vegan anyway), the nightshades, alcohol and just about anything else that’s nice! I’ve got three weeks before they call me back for the results of the TPMT test so I’m hoping for some kind of ‘miracle result’ before then, if I’m lucky. Yes, please do keep posting – your blogs are incredibly helpful and inspiring!
Best wishes
Sue Stelfox
Hi Sue, gosh, I’m so sorry I haven’t taken the time to reply to you until now.
It’s been ages since I posted anything but I’m in the process of getting my act together now. Life has been a bit hectic in the last 9 months or so, which I’m going to talk about when I next post (probably next week). Thanks for reading the blog. For me, it’s a good way of keeping myself up to date with where I am and what progress I’m making, or otherwise.
I’m sorry you’ve had such a rubbish time with the medication. I respond well to Adilamumab and I do still take it now and then, but I’ve got it down to around 4 times a year! It is possible but it’s not all plain sailing and I suffer greatly from my own lack of willpower. I do agree with you that it feels like you’re cutting out EVERYTHING nice but I have found that my taste for food has changed dramatically over the last 3 years – I’m much more likely now to go for something savoury than sweet, although I do lapse and gorge on sweeties occasionally!
I hope your consultation in July went well. It would be great to hear how you’re getting on. My doctor’s reactions have ranged from “Well done” to “I don’t believe it” so it would be great for me to hear how other medics have responded.
I hope you’re well and, if you are sticking to the diet, keep it up. It does make a world of difference!
Cheers,
Scott
Hi Scott
Good to hear from you! A quick update on me … Twice last year, I managed three weeks of clean/elimination diet (vegan, no processed food, no sugar, no nightshades, no alcohol, no fun) and each time the (really bad) arthritic pain had gone. Both times it came to a halt as I had to go away and the diet was virtually impossible to keep to away from home and work, so it would end with a pub meal of pastry, cheese, chips, ice cream and wine. Both times I could barely move my hands the next day and the hip/knee/foot joint pain was back. I also became covered in hives! I’ve now got some antihistamines in case it happens again. My GP sent me to an Immunology specialist and I had the run of allergy tests but nothing showed up. But he said that that doesn’t mean that something I’m eating isn’t aggravating the arthritis. After these two positive experiences of the clean diet, I wrote to my consultant to say I wanted to come off Humira and Azathioprine as neither had had any effect and then mid-November saw a nurse who basically said it was my body and I could do what I liked, so I’ve been drug-free since then. My rheumatology consultant wrote back to say he would still like someone to see me at six-monthly intervals and I’m due to see a nurse again on 17 Feb. (After the first attack of hives, I was taking antihistamines but was unhappy taking all my other pills as well so came off Co-codamol and there was absolutely no increase in my pain level so I haven’t taken a painkiller since.)
Mid-December I started the clean diet again but this time the effects weren’t so amazing. No wonderful recovery after three weeks unfortunately. But I do keep playing with diet (I even just had juiced veggies over the Christmas holidays – far too much washing up to be able to do it in the working week! – and I did feel much better for it) and I think I’m pinning it down to gluten. As you say though, it’s down to willpower. I can be doing so well on avoiding stuff I shouldn’t have and then it’s someone’s birthday and the kitchen at work is full of cakes and cookies. I would say though that I feel tons better in myself for just coming off the meds. The brain fog I’ve had for the last five years has lifted and I feel ‘me’ again. And another positive ‘side effect’ – I had put three stones on since I started with arthritis (numerous courses of steroids, inactivity etc) but I’ve lost over a stone since I became drug-free.
And I’ve just seen you’ve posted again so I’m off to have a look …
Very best wishes
Sue
Hi Sue, I hope this finds you well?
I’ve been very quiet blog-wise as life has been quite tough of late but I’m back. It’s interesting looking back on your e-mail about vegan food reducing the impact and pain of your arthritis. I have just had an amazing experience with cleansing and raw vegan food – it’s a new post on the blog just out today. I’m feeling rejuvenated and confident about the next 30 years.
Would love to hear from you.
All the best,
Scott
Hi Scott – good to hear from you!
By a bizarre coincidence, I’m going on a raw vegan/yoga weekend retreat at the end of this month. Mine’s in Derbyshire so I doubt we’ll have your sunshine! Fantastic to hear how well you’ve done. I honestly believe food is our medicine (Hippocrates, I think) and experiences you and I have had just go to prove it. I’ve managed vegan for a couple of weeks at a time over the last couple of months and each time I feel lighter, brighter and calmer. Then it’s somebody’s birthday at work, we have cakes and chocolate and it all goes downhill from there. But your post has made me determined to do it properly and I shall go vegan (again) as of this minute. I’m doing it for ethical reasons, so any health benefits are a bonus. And hopefully my weekend away will nudge me further along the right path. I’ve read so many books on raw vegan, but it’s getting your finger out and doing it. Do keep us posted on how you’re doing and I’ll do the same.
Best wishes
Sue
Wow, spooky. I have been inspired to post more often and I’ve made some big changes at home to help me with my change of direction – in terms of food.
I hope your weekend is great fun. I had never heard of raw vegan food before going to Spain, so the whole thing for me was a bit of an epiphany. I totally get the ‘cakes at work’ thing, but so far I’ve just been stoic. I am a sugar addict, so it’s a tough one, but it’s my health ultimately which will suffer, so I’m trying as hard as I can!
Good luck, I’m sure you’ll do great!
Scott
Hi Scott
Keep up the good work! My favourite websites are
Rawfreedom.co.uk
Therawtarian.com
Also by coincidence, next week (Monday to Friday) at 7pm on BBC2 is The Retreat with Nick Knowles. He goes on a 28-day vegan yoga retreat in Thailand so that be worth a look.
Take care
Sue