6 Months On Humira - Or the Art of Spoon Conservation

A few weeks ago marked the six month point in my relationship with Humira. I haven’t talked too much about my experience with this drug, in part because it (thankfully) hasn’t been anywhere near as dramatic as my relationship with my frenemy, Prednisolone. So far.

I wrote about starting Humira back in this post - http://foodlovingcrohnie.blogspot.co.uk/2014/02/here-goes-nothing.html. It was a very difficult and anxiety filled time, and I had to jump through a lot of hoops and have a lot of fights with the hospital (which included effectively firing my consultant) to try this route. Humira is a “biologic drug”, and as the “biologics” as they are often referred to are the new kids on the block, they are horrendously expensive, so the NHS doesn’t exactly dole them out willy-nilly. Unlike Prednisolone, which is so far off-patent that it is cheaper than chips. Granted, they do completely different things, but the difference in cost between these two drugs is the difference between a 1995 Ford Ka and buying a brand spangley new 2014 Range Rover. There is no comparison when it comes to money.

So on 10^th February, I started Humira under the supervision of not one, but two different home visiting nurses to see if I could inject myself properly with the stuff. There is no option for this stuff to come in a pill form as your digestive system will kill it - it’s inject or nothing. They were both lovely, and were especially gentle with someone who was a ball of nerves. It’s not that I have an issue with injecting myself. It’s not pleasant, but it could be worse. But 2 ½ months into being tanked up on Pred, I was frankly, bat-shit crazy, and I wouldn’t have trusted me with something sharp at that point, and I’m not sure they fully did either.

The other reason they send nurses out for your first injections is because there is a very real risk of people having anaphylactic reactions to the stuff. Considering my history of allergies, especially drug allergies, the first nurse expressed real surprise that I didn’t have my first injections in the hospital clinic rather than at home. She said that she normally left the emergency kit in the car on visits, but with me, she came in fully armed with adrenaline shots and portable oxygen, telling me that with my history, she figured this would actually be more of a comfort to me to have it handy rather than it totally freaking me out like it does most patients. She was right.

Fortunately, I didn’t need it. And so far (touch wood), I’m getting on okay with Humira. At the very least, it got me off the Pred, which was the goal, and it seems to be holding things in this biochemical remission steady. And in the grand scheme of the very scary side-effects list for this drug, I’ve gotten off pretty easy.

It has made my eczema a bit worse (especially on my face, bleurgh), but being someone who has had eczema pretty much since birth, that’s quite manageable. As long as it stays as dry eczema (wet eczema is nasty and needs medication), it’s just a matter of slathering on large quantities of lotions and potions, and I’m already on good terms with Epaderm/Aveeno/Shea Butter anyway. 

The injection site bloody hurts. Stings is probably a better descriptor. But it stings like hell. Following the advice of the nurses and various online forums, keeping the stuff out of the fridge for an hour before hand and freezing the hell out of the injection site (the abdomen, in my case) for at least 20 minutes before hand and 20 minutes afterwards helps, but it will continue to sting somewhat for at least a day afterwards, especially if I accidentally inject it to close to where the waistband on my jeans rubs. Ow.

But the biggest problem is that it makes for you feel truly awful for 24-36 hours afterwards. Truly, utterly, bloody awful. Imagine having the flu. Like the proper flu. The “I-can’t-move-off-the-bed” kind of flu where your whole body hurts, even you hair. But take away the fever, runny nose and coughing. Like that.

Bloody awful.

And if you have proper flu, I need to stay far away because Humira is a powerful immunosuppressant.

 

And it makes me cold. When these chills first happened, I was worried I was running a fever. But nope. It makes me cold. This was my temperature this morning around 11:30 –

Seriously. And no, I did not have a cold drink or ice cream first. It’s still stupid hot out and I’m wearing a hoodie and sitting with the heating pad on my back for the muscle ache. Brutal.

The feeling like crap thing is apparently almost universal with Humira users. The side effects leaflet lists this as a “common” side effect, affecting at least 1 in 10 people. A look around on social media or a chat with a nurse familiar with the stuff will tell you that this is pretty universal. I was warned. They were right.

6 months on, I can’t say that I’m any more used to it, but I would say that I’m more prepared for it. I pretty much have to schedule things around this 36 hour period to save myself a lot of hassle. Initially, I was having the injections every other Monday morning as that was when the first nurse came. I moved that back to Sunday evenings so that I could at least attempt to sleep off the worst of it. And now that I’m back at work full time, that involves having to re-work a lot of things around it. My manager has fully agreed to me working from home on those days, and I try to work it so that I’m not doing anything particularly taxing on those days, just things like proof-reading my written work, or reading reports. And I’ve learned to make sure that I’ve done as much as I can around the house over the weekend so that I’m not staring at dust bunnies or a dirty kitchen while feeling sorry for myself, because it's enough just to get the rubbish out on Monday night. And I’ve learnt to cook enough food the day before so that all I have to do is re-heat things for dinner, or at most, make rice or a jacket potato to go with it. 

In effect, Humira has forced me into the art of what I call “spoon conservation”. For those of you not familiar with Spoon Theory, go here - http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/. 

A search for "spoon conservation" will bring up pictures of spoon-billed sandpipers. Rather cute, really.

Effectively, I know full well that every other Monday, the cutlery drawer will be virtually empty, and I have to just accept that and work with it. Unlike when I was sick in the full blown Crohn’s flare, at least this has a schedule. And I’ll take it over Prednisolone any day.

Le Sigh . . .

It’s been bloody hot all week. And while I know that most Brits are celebrating continued sun and warmth, I’ve had it. I know it’s rare and I should appreciate it, but I don’t. I don't handle the heat well and I handle the sun even worse (not that I'm a goth or anything). It's not that I burn in the sun, it's the glare I can't handle, even with very dark sunglasses. I often tell people here that I moved away from Canada to get away from summers like this.

One thing that does come about with this kind of weather are bumper crops of summer berries. I have a garden, but don’t like gardening, so the only thing that is growing back there other than untamed grass and some bamboo like tree that is committed to taking over are wild strawberries and wild raspberries. The slugs got this years strawberries. The raspberries, however, are going crazy!

I only got two berries off the plant last summer. This was today’s taking, with more still to ripen.

Of course the problem here is that when you are on a low-residue diet, you aren’t allowed berries. In part because of the fibre, and in more part because of the seeds. Le sigh. The only way I could eat them is if I pureed them and strained them through a very fine mesh. And I’m not sure I can be bothered for a small bowlful.

Any thoughts as to what I can do with them will be appreciated!

So to cheer myself up, I took advantage of a slight lull in the heat in the kitchen this morning (my kitchen window faces west, the evenings have been lethal!) and baked some chocolate chip cookies. Nothing special, just the bog-standard Chipits recipe -http://www.hersheycanada.com/recipes/en/recipe-details.aspx?id=3544&name=CHIPITS%C2%AE-Chocolate-Chip-Cookies

But when I opened a new tub of margarine, I found this.

It looks seriously good! So now I need it to cool down more so that I can make cake!!

Having Your Cake . . .

This past Sunday was the first time since before I got sick last year that I did some proper walking. I used to do a lot of walking, even a bit of hill-walking, but for a variety of reasons, that fell by the wayside a bit. And over the last year, there were two big reasons why I wasn't walking so much. One was the obvious lack of toilets in the countryside, which is a huge issue for Crohnies. The other is that I just didn't have the physical energy to do it anymore.

So this past Sunday, I went to Croome Park, which is a lovely National Trust site south of Worcester. I'm a long standing member of the National Trust (and English Heritage), and can wax lyrical about all of the reasons why I love the Trust so much, but have nice places to walk, that are busy enough where it's safe to walk alone, is one of the big one. And I'm a history geek.

I have never seen the grass that brown before, it shows how dry it has been!

I've been to Croome several times before, summer and winter, but the attraction and reason for the walk was that I found out that the huge estate around this lovely (although still somewhat dilapidated) country house has follies. Proper, "Capability Brown" follies. They don't open them often, but they opened one that day, and I decided I needed to go find me one.

It was a 3-mile walk there, and 3-miles back again, much of which was along a lovely landscaped river, which had many swans, geese and even a heron. And lots of trees. Although these kinds of landscapes aren't "natural" because they've been landscaped, they are very pretty.

This summer has been unusually hot and dry for England. One of the reasons I was able to contemplate this walk was because it was the first overcast day in ages. Not that it was cool out, it was definitely hot, but at least there was no glaring sunshine. I don't handle the sun well, and never have. These sheep had the right idea hiding under a tree. Of course they kept their distance from me, they knew that I was looking at them and thinking about what tasty things I could make with lamb!









Just how dry it has been this summer was well shown when the footpath went through a wheat field. This would normally be mud.


One of the other things that stopped me from walking last year were stiles, like the one below. When the oedema got really bad last winter, I could barely climb the stairs, never mind swing my swollen legs over one of these. On Sunday, this was an easy climb, not least because the designer of this stile of stile understands that some of us have short legs. I have had the misfortune more than once of climbing over stiles that were clearly built for giants.

 

I came across some cows in the next field. Only one looked suspiciously at me, and only after I took her picture (she must have known I was thinking of steak!), but you can see the top of the folly stick out behind her.

And this is what I was aiming for -

A fake ruin! It looks real. It ain't.

It was very trendy in the 18th century to have a "romantic ruin" on your property to show off to your friends. If you didn't have one, you had one built. Apparently, these were often used to train apprentice stone-masons, because if they messed up, no one was likely to notice too much.

The opportunity was there to climb up the folly. So, of course I took it. But it was a bit of challenge. I needed to climb a ladder just to get to the door! Earlier this spring, I turned down the opportunity to climb down into a cold war bunker because it involved a ladder, and I couldn't have imagined hauling myself back up with the state of my back. I had no problems getting up this one, clearly my osteopath is right to be happy with how my back is now!



The stairs going up were some of the steepiest, narrowist and dark ones that I have ever been up, even worse that some cathedrals I've visited. I needed a head torch to see in there! And the last part of the climb involved coming up through this -


I seriously banged my shoulder on that glass door! And so did the person coming behind me. But it was worth it for this -

The view from the top overlooking the Malvern Hills. Never mind the view across the rest of the park.










You can't see the country house for the trees, but you can see other landmarks in the park, like to Rotunda.

You can see the house on the walk back. It has a rather interesting history, having been the house of the Earls of Coventry for many years, and also having been an RAF base, a residential school and was the one-time home to the Hare Krishnas!

The Hare Krishnas left their mark on the dining room

 And of course, the other reason why I love the National Trust is cake!

A visit is never complete without cake! And I don't care if there were seeds in the jam of this Victoria Sponge making it not low-residue compliant. After 6 miles of walking in the heat, I bloody earned it! 

 #fuckyoucrohnsdisease

Put More Pork on Your Fork

Sometimes recipe ideas present themselves when you aren’t looking for them. This one came about, in of all places, my osteopath’s waiting room. The waiting room usual requisite supply of out-of-date magazines, and a nice change from the usual “rag mags” one gets, the selection there is usually a little more interesting as there are often options like English Heritage’s magazine, Classic FM’s magazine and Saga’s magazine. I found this recipe leafing through an old copy of Good Housekeeping and wrote it down as I happened to have the required ingredients in the cupboard.

Whether or not it counts as low-residue is up for debate because of the spicy-ness, but I’m going to call it low-residue/low-fibre because I ignored the part of the original recipe which involved a side of some kind of Bulgar type grain (hello fibre!) and kale (hello yuck!). So I stuck with the beasty part of the recipe and did my own side.

This is for a pork tenderloin, one about 400g or so.

On a piece of baking paper, mix the following -

2 tsp of smoked paprika
1 tsp of all spice
1/4 tsp of sea salt
1/4 tsp of fresh ground pepper

My spicy interpretation of a pig?

Spread it out on the paper (and if you fancy, draw some pictures in it), then roll up the meat in the mixture in the paper.

It tastes better than it looks

Wrap tightly in the paper and put in the fridge for about 40 minutes.
 

Looks like something suspicious from the butchers

Preheat the oven to 200C. In a large frying pan, heat 1 tbsp of olive oil , then brown the meat on all sides.

I had to cut it in two to fit it in the pan

Then transfer to a baking dish and cook for 30 to 35 minutes.

Meanwhile, wash and de-steam some baby spinach and steam that for about five minutes. Boil the kettle to make 3/4 cup of chicken stock with a stock cube. Once made, add it to 2/3 of a cup of couscous (that happily served two with some leftovers) and put the lid on for 5 minutes until the water is absorbed. Fluff with a fork, mix in a bit of basil, then mix in the spinach.

When the meat is done, cut up the meat  . . .

 .... and serve with the couscous.

Voila! Tasty piggy!!

Okay, not that kind of piggy!

It was rather nice, but it was a bit spicy, and I probably could have left out the black pepper and still had it be rather tasty.

And Now Back to Our Regularly Scheduled Program . . . Sort Of

I have posted in earlier posts about how much I love my slow cooker. And how much I love bambi . . . I mean venison. And I devoted a whole post to my love of beer, which I am only just beginning to get reacquainted with. And it has been ages since I combined all three.

I used to make this recipe a lot, especially during the winter. But with beer being off the menu as a drink for so long, I stopped cooking with it too. Very sad days. As I can’t drink wine (I’m allergic to grapes. Seriously!), cooking with beer in place of wine became one of my cooking specialities. I have loads of ways to cook with beer, and several cookbooks devoted to it. Alas, this whole Crohn’s thing threw a spanner into that, but I’m slowly easy back to things I used to make.

Although it was a ridiculously sunny day, even by British standards, I had a crazy day ahead on Saturday and decided it was better to put dinner in the slow cooker before I went. I had a pack of venison that I had defrosted, and it had a date with my slow cooker and a bottle of Jennings Cumberland Ale.

The question was how to deal with the low-residue thing, as onions are an important part of any casserole. I am getting truly sick of cooking with onion powder. I resent it every time I take that jar out of the cupboard. The dietitian suggested that I could pop an onion in the pot whole (peeled, of course), then could fish it out again before I dig in, allowing the flavour to get in there without adding the risk of “stringy bits”. So that’s what I did.

So, to make this lovely bambi casserole, here’s what I did.

I took 1lb of diced venison (this pack was cut from the shoulder) and browned in a frying pan with 1 tbsp of olive oil and 1tbsp of margarine. Venison is very lean, and it really needs to be browned in a good amount of fat, hence the two types of fat in the pan.

Meanwhile, I peeled and chopped two carrots and put those in the slow cooker. I peeled half an onion, and put that in the slow cooker without chopping it. I also boiled the kettle and made about 150ml of beef stock with a stock cube.

When the meat was browned, I added a heaping tbsp of plain flour to the meat and coated it. I let that suck up a bit of the liquid. I then transferred the meat to the slow cooker with a slotted spoon.

After that, I poured the beef stock into the hot frying pan, and deglazed it, scrapping all of the bits off the pan. I then poured that into the slow cooker.

I then added 2 tbsps of malt vinegar and 1 tbsp of brown sugar to the pot. Then I added 3 bay leaves, 1 tsp of allspice and ½ tsp of cloves to the pot. Then I added ½ pint of ale.

Venison is best paired with a medium body ale, like a best bitter, rather than a stout or porter (save that for beef). The recipe I adapted this from was actually to go with Daleside Crackshot Ale http://www.bdfpa.org/recipes/UaeVHAa7tj6N.pdf, but I find that it works well with anything similar, like Cumberland or Adnams Broadside. A blonde or golden ale just isn’t strong enough (save that for poultry). I can go on for hours about pairing beer with food, but I’ll leave that for another time! And if you don’t want beer in your food, you can always increase the beef stock to the same amount of the beef stock and ale together and should still get something tasty.

I gave it all a good stir, making sure that the meat was below the liquid line (a must in a slow cooker) and put the lid on and left it to cook on high for six hours.

When I got home just before dinner, my home smelt properly like my cooking again.

I fished out that onion and served it up with some focaccia, but it also goes nice with rice or potatoes. And the other half of that bottle of Cumberland Ale.