Like a lot of “Crohnies”, I’m currently on Prednisolone. “Frenemy” is the only way I can describe the stuff. I know it’s a life-saver. But it’s bloody pants.
This isn’t first time I’ve had it. As an asthmatic, I have had a few times (four to be precise) in the past when I’ve needed oral steroids to control serious asthma flare-ups (all of which were related to chest infections or influenza). As someone classified as having “moderate asthma", four rounds with Prednisolone in your lifetime isn’t really bad going at my age in the grand scheme of things. But with asthma, they tend to give you moderate levels (30-40mg a day) for a short blast (5-7 days), it clears your chest, and you’re done. You get some of the side effects, but you’re not on it long enough to get the worst of them.
But in the world of Crohn’s, I’ve discovered that Prednisolone is a whole other ball of wax.
I had one other round of Prednisolone before this one back in September which was given to me by my GP. Two rounds of antibiotic Ciprofloxacin did a partial job at treating what turned out to be Crohn’s symptoms, but as soon as I was off it, I was very ill all over again. And I was losing an alarming amount of weight. The referral to the GI doc happened at this appointment after I brought up the family history of IBD. Knowing it would take 4-6 weeks to get into the GI doc, then another 4-6 weeks to get the tests needed, he decided that a course of Prednisolone wouldn’t hurt. I had 9 days at 30mg. Lots of insomnia and random bruising, but overall, it worked, and I had a month of not being ill. The GI doc was a bit perplexed about a GP doing that, but as far as I’m concerned, the GP bought me time, and I am eternally grateful for that.
This time round, I’ve been given a much bigger course. I was given 40mg a day, with the intention that I “taper” off it by 5mg each week for 8 weeks. As this thing "has teeth" (as a friend put it), the IBD nurse has extended this, so it will probably be 14-16 weeks. Eight vials of blood and two weeks later, I started on Azathioprine, with the intention that this will take over the job of the Prednisolone in getting the inflammation down. So far, (touch wood) I’m getting on okay with the Azathioprine. As for the Prednisolone . . . . bloody hell.
The first thing you notice about Prednisolone when you get it is how long the patient information leaflet is. The list of potential side effects is incredible. When I’ve had short courses for asthma, I only really had problems with insomnia, random bruising that takes ages to heal (the fact that I’m somewhat dyspraxic and clumsy doesn’t help) and a wicked case of the munchies. All of that is certainly happening this time round, although the “munchies” issue is rather problematic with a bad stomach. I’m very happy that it has brought back my appetite, the fact that I can’t stop thinking about food (hence this blog!) and I keep craving things that I really shouldn’t be eating while trying to get this flare under control, is not good.
There are bucket loads of long term risks as well, the big one being an increased risk of osteoporosis. I'm already at risk for this with post-hysterectomy-perimenopausaul ovaries, but it is a risk that I need to take. Hence the high level calcium tablets at the breakfast table. And everyone who says that I have more weight back on my face now? No dear, that's just the "chipmunk cheeks" from the Prednisolone.
What’s really thrown me though are the mood swings. I found the following meme on the Mind Your Body blog http://opbmed.blogspot.co.uk/ a few days ago, and it rather sums it up.
The patient information leaflet has loads of warnings about the potential effects Prednisolone can have on a patient’s mental health. Having never been on a long course before, I never really had problems with this (other than sometimes feeling a bit hyper with the insomnia), but this time round, I’m getting the picture. One minute I’m fine, the next minute I’m a crazed lunatic, the next minute I’m hyper to the point of confusion, the next minute I’m bursting into tears at Christmas dinner. This stuff seriously messes with your head.
I’m not generally a publicly emotional person and the randomness of the mood swings is driving me crazy. And it’s way worse two to three days after “tapering” the dose down. Two days after going down from 40mg to 35mg, I was called into a meeting at work with a very senior level manager, and I completely bollocked her. I either just set myself up to get sacked or left one hell of an impression. Yes, I can be direct and blunt, but I’m usually a lot more tactful (although I still know I was right!).
The fact that the “tapering” for me also seems to bring on absolutely brutal migraines doesn’t help. I so rarely get headaches that I describe them as an “event”. I’m writing this with one now, but really just want to crawl into a dark room and not re-emerge for several days. And when I’m like that, I become apathetic about food, which is not good when you’ve lost so much weight. It’s part of the reason I’ve been doing so much cooking this past week and putting things in the freezer. (The leftover sweet and sour meatballs did re-ignite my appetite tonight though!)
However, as awful as the side effects are, I need to remember the most important thing. Prednisolone does exactly what it says on the box. It saves lives.
This isn’t first time I’ve had it. As an asthmatic, I have had a few times (four to be precise) in the past when I’ve needed oral steroids to control serious asthma flare-ups (all of which were related to chest infections or influenza). As someone classified as having “moderate asthma", four rounds with Prednisolone in your lifetime isn’t really bad going at my age in the grand scheme of things. But with asthma, they tend to give you moderate levels (30-40mg a day) for a short blast (5-7 days), it clears your chest, and you’re done. You get some of the side effects, but you’re not on it long enough to get the worst of them.
But in the world of Crohn’s, I’ve discovered that Prednisolone is a whole other ball of wax.
I had one other round of Prednisolone before this one back in September which was given to me by my GP. Two rounds of antibiotic Ciprofloxacin did a partial job at treating what turned out to be Crohn’s symptoms, but as soon as I was off it, I was very ill all over again. And I was losing an alarming amount of weight. The referral to the GI doc happened at this appointment after I brought up the family history of IBD. Knowing it would take 4-6 weeks to get into the GI doc, then another 4-6 weeks to get the tests needed, he decided that a course of Prednisolone wouldn’t hurt. I had 9 days at 30mg. Lots of insomnia and random bruising, but overall, it worked, and I had a month of not being ill. The GI doc was a bit perplexed about a GP doing that, but as far as I’m concerned, the GP bought me time, and I am eternally grateful for that.
This time round, I’ve been given a much bigger course. I was given 40mg a day, with the intention that I “taper” off it by 5mg each week for 8 weeks. As this thing "has teeth" (as a friend put it), the IBD nurse has extended this, so it will probably be 14-16 weeks. Eight vials of blood and two weeks later, I started on Azathioprine, with the intention that this will take over the job of the Prednisolone in getting the inflammation down. So far, (touch wood) I’m getting on okay with the Azathioprine. As for the Prednisolone . . . . bloody hell.
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| Breakfast of champions? |
There are bucket loads of long term risks as well, the big one being an increased risk of osteoporosis. I'm already at risk for this with post-hysterectomy-perimenopausaul ovaries, but it is a risk that I need to take. Hence the high level calcium tablets at the breakfast table. And everyone who says that I have more weight back on my face now? No dear, that's just the "chipmunk cheeks" from the Prednisolone.
What’s really thrown me though are the mood swings. I found the following meme on the Mind Your Body blog http://opbmed.blogspot.co.uk/ a few days ago, and it rather sums it up.
I’m not generally a publicly emotional person and the randomness of the mood swings is driving me crazy. And it’s way worse two to three days after “tapering” the dose down. Two days after going down from 40mg to 35mg, I was called into a meeting at work with a very senior level manager, and I completely bollocked her. I either just set myself up to get sacked or left one hell of an impression. Yes, I can be direct and blunt, but I’m usually a lot more tactful (although I still know I was right!).
The fact that the “tapering” for me also seems to bring on absolutely brutal migraines doesn’t help. I so rarely get headaches that I describe them as an “event”. I’m writing this with one now, but really just want to crawl into a dark room and not re-emerge for several days. And when I’m like that, I become apathetic about food, which is not good when you’ve lost so much weight. It’s part of the reason I’ve been doing so much cooking this past week and putting things in the freezer. (The leftover sweet and sour meatballs did re-ignite my appetite tonight though!)
However, as awful as the side effects are, I need to remember the most important thing. Prednisolone does exactly what it says on the box. It saves lives.
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