Today marks day 4 of parting ways with my ‘Frenemy’ Prednisolone. So far, (touch wood), things are okay.
A friend of mine has recently had Prednisolone suggested to her by her medical team for her condition. I laughed and sent her my previous blog post on my Frenemy. That got me thinking about all of the side effects I’ve had over the past 4 months and thought that for fun and giggles, I would do a “round-up” of everything that Prednisolone did to me.
So starting with the ones that made their appearance early on, here it goes:
Severe Insomnia - This was the first one to raise its head. I’ve had this when I’ve been on short courses of Pred for asthma, but that was only for a week or so. I’ve never been a particularly good sleeper, but in all seriousness, I think I had five full nights (meaning more than 6 ½ hours) of sleep in the first three months I was on the Pred. I didn’t get any proper sleep until I dropped the dose to 10mg. As I’ve said in a previous post, sleep deprivation is a form of torture.
Collapsed Veins - Normally, my veins are pretty prominent, especially on my hands and on the inside of my elbows. Several times while having blood taken at the hospital, I’ve had the veins totally collapse. So, they would have to do it again, which leads to the next one.
Bruising and Easy Bleeding - My shins have sported a rather colourful collection of bruises. So has the rest of me, but my shins have really had it, mostly from colliding with table legs when I’m getting up. What would normally only give me a small bruise was giving me whoppers. If I cut myself (which fortunately, didn’t happen often), it bled like crazy, and I normally stop bleeding pretty quick. And everything took ages to heal. The fact that I’m generally pretty clumsy really didn’t help these two.
The Munchies - This one has been a bit in and out with me. Initially, this kicked in for a few days while I was in Paris (it was the smell of cheese every time I walked into the supermarket that did it), but everything I was eating then hurt. And all I could think about was food. That was a very bad combination. Then the munchies went away for a while, and I didn’t have much appetite for a few months. It only kicked back in when I got the dose down.
Unbearable Thirst - I drink a lot of water anyway as my asthma inhalers make my mouth dry. But I was drinking loads. And loads. And loads. Not totally a bad thing, but the thirst was insatiable. And despite drinking that much water, I always seemed to be dehydrated.
Mental Health Problems - This has been pretty well documented throughout the life of this blog. The general mood swings kicked in around the end of week 2, but then it wasn’t long after that the real problems began. To sum up, I’ve had manic energy, “Pred rage”, deep depression, visual hallucinations (which added a new layer to my already damaged body image), obsessive thoughts, severe anxiety, full blown panic attacks, and some very very dark and deeply scary thoughts that even freaked out this slightly-gothy darkling. Plenty enough to have me Sectioned under the Mental Health Act. I’ve fought tooth and nail to regain my mental health. The worst of it was gone by the time the dose was dropped to 10mg, but I think it will be a while before I’m truly in the clear from all of this.
Chipmunk Cheeks - The British tend to say “moon face”, but I like “chipmunk cheeks” because that’s what they looked like. Everyone kept saying how well I looked when this kicked in around week 3. What they didn’t notice that weight was dropping off the rest of my body at the same time. Fortunately, this one is beginning to go now and I’m looking a little more like myself.
Joint Pain - The pain in my upper back has been awful, and at one point around week 4, every bone in my body hurt. It’s hard to know how much of this was the Pred and how much was the Crohn’s, but it hurt way more than my tummy. And I’ve spent a ridiculous amount of money at the osteopath as a result.
Difficulty Making Decisions - This really came in around week 4. Even simple decisions were taxing. This is what eventually drove me off work. I make serious, life-changing decisions with people in my job. If I can’t do that, then I’m not “fit-to-practice”. This didn’t start to pass until I got the dose down to 15mg.
Losing Train of Thought Mid-Conversation - Okay, this is something I do a lot anyway, but I was doing this way more than normal. I didn’t notice that I wasn’t doing it any more until a friend pointed it out to me when I dropped the dose to 10mg.
Muscle Weakness - Granted, thanks to the malnutrition from the Crohn’s, this was happening anyway, but I was really struggling to lift and carry anything. This also affected my legs and between this and the oedema from the Crohn’s, getting up and down the stairs was difficult, never mind walking any great distance. This is slowly coming back, but I’m really having to work hard at it.
Oral Thrush - Nothing like thinking that you’re coming down with something to check the back of your throat in the mirror and have it covered in little white patches of gunk. And it’s not just your throat. It’s on your tongue and the roof of your mouth too. Lovely. Fortunately, my GP gave me some Nystan to treat it, which worked like a charm.
Tremors - The mental health stuff was bad enough, but this was when the side effects started got really frightening. My hands would shake uncontrollably that I struggled to write and sometimes to even use a spoon. This was when I had to give up driving for a few weeks. It was a brutal way to learn what people with Parkinson’s live with every day. Fortunately, this went away when I dropped the dose to 20mg.
Ovaries Shut Down - Despite having had a hysterectomy, I still have my ovaries, and usually still have phantom periods every month. Those stopped with the steroids and my ovaries seemed to go for a three month long sleep (at least part of me was sleeping!) And my boobs shrunk, and not just from the weight loss. And I mean, they really shrunk. When I dropped the dose to 10mg, my ovaries started waking up. At 5mg, I had a phantom period. Ow. And my boobs suddenly came back. So much so that I’ve had to buy two new sets of bras within 4 weeks, which cost me a total of £112. Double Ow.
Acne - I had really bad acne in my early teens. I mean, really bad. To all those well meaning adults who told me I would grow out of it, I’m now in my late 30s and I still get it. And when the dose was dropped to 20mg, it came back with a vengeance.
Nails Growing Like Weeds - My nails grow fast anyway, much to the disgust of women who wish they could grow theirs. But I was pretty much having to cut them off completely every week they were growing so fast. And they were breaking easily too, and normally the only nails this girl breaks are steel.
Hair Loss - My hair started coming out in clumps by the time I had been on the Pred for 3 months. And I mean big handfuls every time I washed it. And even more when I combed it. And I keep finding hair everywhere in the house. Fortunately, I have a lot of thick hair, but it’s all falling out of the top, which made it look a bit odd. So not only is my hair falling out, my lovely hair dresser had to cut a lot off the length to make it less noticeable. In fact, it is now about half the length it was when I started on the Pred. But at the end of the day, it’s only hair.
Unwanted Hair Growth - So while the hair is falling off my head, it’s growing in places I don’t want it. Up the side of my neck, down the side of my face (which fortunately is only noticeable in very strong sunlight), and joy of joy, up my back, which I only found out when my osteopath looked at my back and made a slightly disconcerting noise. “What?”, I asked him. “I’m not sure you want me to tell you,” he said. “Oh, go on,” I said. Then he told me what he saw. I had a good look in the mirror. All I could do by this point was laugh. It’s disgusting and I’m self-conscious about it, but really, it’s the least of my problems. If it doesn’t fall out, I can always get it taken care of.
The only main side effect I didn’t get was weight gain. I had the opposite.
On the up side, it treated my eczema!! A rather extreme way to do so, but my skin didn’t trouble me all winter. Now that I’m off the Pred, it’s back with a vengeance. At least that’s a return to normalcy. And strangely, I’ve not had a Raynaud’s attack all winter. I know that it has been very mild this winter, but I still find this odd as my fingers have gone white when the temperature is 10C. That may or may not have to do with the Pred, but it’s strange all the same.
And to be honest, as truly horrible as these side effects have been, the reality is that my ‘Frenemy’ saved my life.
A friend of mine has recently had Prednisolone suggested to her by her medical team for her condition. I laughed and sent her my previous blog post on my Frenemy. That got me thinking about all of the side effects I’ve had over the past 4 months and thought that for fun and giggles, I would do a “round-up” of everything that Prednisolone did to me.
So starting with the ones that made their appearance early on, here it goes:
Severe Insomnia - This was the first one to raise its head. I’ve had this when I’ve been on short courses of Pred for asthma, but that was only for a week or so. I’ve never been a particularly good sleeper, but in all seriousness, I think I had five full nights (meaning more than 6 ½ hours) of sleep in the first three months I was on the Pred. I didn’t get any proper sleep until I dropped the dose to 10mg. As I’ve said in a previous post, sleep deprivation is a form of torture.
Collapsed Veins - Normally, my veins are pretty prominent, especially on my hands and on the inside of my elbows. Several times while having blood taken at the hospital, I’ve had the veins totally collapse. So, they would have to do it again, which leads to the next one.
Bruising and Easy Bleeding - My shins have sported a rather colourful collection of bruises. So has the rest of me, but my shins have really had it, mostly from colliding with table legs when I’m getting up. What would normally only give me a small bruise was giving me whoppers. If I cut myself (which fortunately, didn’t happen often), it bled like crazy, and I normally stop bleeding pretty quick. And everything took ages to heal. The fact that I’m generally pretty clumsy really didn’t help these two.
The Munchies - This one has been a bit in and out with me. Initially, this kicked in for a few days while I was in Paris (it was the smell of cheese every time I walked into the supermarket that did it), but everything I was eating then hurt. And all I could think about was food. That was a very bad combination. Then the munchies went away for a while, and I didn’t have much appetite for a few months. It only kicked back in when I got the dose down.
Unbearable Thirst - I drink a lot of water anyway as my asthma inhalers make my mouth dry. But I was drinking loads. And loads. And loads. Not totally a bad thing, but the thirst was insatiable. And despite drinking that much water, I always seemed to be dehydrated.
Mental Health Problems - This has been pretty well documented throughout the life of this blog. The general mood swings kicked in around the end of week 2, but then it wasn’t long after that the real problems began. To sum up, I’ve had manic energy, “Pred rage”, deep depression, visual hallucinations (which added a new layer to my already damaged body image), obsessive thoughts, severe anxiety, full blown panic attacks, and some very very dark and deeply scary thoughts that even freaked out this slightly-gothy darkling. Plenty enough to have me Sectioned under the Mental Health Act. I’ve fought tooth and nail to regain my mental health. The worst of it was gone by the time the dose was dropped to 10mg, but I think it will be a while before I’m truly in the clear from all of this.
Chipmunk Cheeks - The British tend to say “moon face”, but I like “chipmunk cheeks” because that’s what they looked like. Everyone kept saying how well I looked when this kicked in around week 3. What they didn’t notice that weight was dropping off the rest of my body at the same time. Fortunately, this one is beginning to go now and I’m looking a little more like myself.
Difficulty Making Decisions - This really came in around week 4. Even simple decisions were taxing. This is what eventually drove me off work. I make serious, life-changing decisions with people in my job. If I can’t do that, then I’m not “fit-to-practice”. This didn’t start to pass until I got the dose down to 15mg.
Losing Train of Thought Mid-Conversation - Okay, this is something I do a lot anyway, but I was doing this way more than normal. I didn’t notice that I wasn’t doing it any more until a friend pointed it out to me when I dropped the dose to 10mg.
Oral Thrush - Nothing like thinking that you’re coming down with something to check the back of your throat in the mirror and have it covered in little white patches of gunk. And it’s not just your throat. It’s on your tongue and the roof of your mouth too. Lovely. Fortunately, my GP gave me some Nystan to treat it, which worked like a charm.
Tremors - The mental health stuff was bad enough, but this was when the side effects started got really frightening. My hands would shake uncontrollably that I struggled to write and sometimes to even use a spoon. This was when I had to give up driving for a few weeks. It was a brutal way to learn what people with Parkinson’s live with every day. Fortunately, this went away when I dropped the dose to 20mg.
Acne - I had really bad acne in my early teens. I mean, really bad. To all those well meaning adults who told me I would grow out of it, I’m now in my late 30s and I still get it. And when the dose was dropped to 20mg, it came back with a vengeance.
Nails Growing Like Weeds - My nails grow fast anyway, much to the disgust of women who wish they could grow theirs. But I was pretty much having to cut them off completely every week they were growing so fast. And they were breaking easily too, and normally the only nails this girl breaks are steel.
Hair Loss - My hair started coming out in clumps by the time I had been on the Pred for 3 months. And I mean big handfuls every time I washed it. And even more when I combed it. And I keep finding hair everywhere in the house. Fortunately, I have a lot of thick hair, but it’s all falling out of the top, which made it look a bit odd. So not only is my hair falling out, my lovely hair dresser had to cut a lot off the length to make it less noticeable. In fact, it is now about half the length it was when I started on the Pred. But at the end of the day, it’s only hair.
Unwanted Hair Growth - So while the hair is falling off my head, it’s growing in places I don’t want it. Up the side of my neck, down the side of my face (which fortunately is only noticeable in very strong sunlight), and joy of joy, up my back, which I only found out when my osteopath looked at my back and made a slightly disconcerting noise. “What?”, I asked him. “I’m not sure you want me to tell you,” he said. “Oh, go on,” I said. Then he told me what he saw. I had a good look in the mirror. All I could do by this point was laugh. It’s disgusting and I’m self-conscious about it, but really, it’s the least of my problems. If it doesn’t fall out, I can always get it taken care of.
The only main side effect I didn’t get was weight gain. I had the opposite.
On the up side, it treated my eczema!! A rather extreme way to do so, but my skin didn’t trouble me all winter. Now that I’m off the Pred, it’s back with a vengeance. At least that’s a return to normalcy. And strangely, I’ve not had a Raynaud’s attack all winter. I know that it has been very mild this winter, but I still find this odd as my fingers have gone white when the temperature is 10C. That may or may not have to do with the Pred, but it’s strange all the same.
And to be honest, as truly horrible as these side effects have been, the reality is that my ‘Frenemy’ saved my life.
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