My dog Brutus is remarkably patient when I talk to him about steroids!
Sometimes, just sometimes I use my blog to sound off so forgive me but today is one of those days. We all need to let off steam some days and today is my day to do it.
For those of you that have read my previous blogs will know that I take low dose steroids for an auto immune disease, they help with my joint pain, they help with inflammation and they to a point, enable me to hold down a job and live my life to a fairly good standard.
I take 5mgs of prednisolone and that 5mgs has become far harder to wean off than I could ever have imagined or believed and it has become the most important drug in my medicine box.
I used to take high doses of steroids many years ago for asthma which would see me suffer terribly from the side effects and I am well accustomed to the weaning process so when I say it is harder now than it was then, I am not joking.
I am torn between a state of needing the steroids because I know that they work and hating the steroids because I have suffered extensively from their unpleasant side effects.
From experience I know that getting below 5mgs will see me cold, unwell, weak, weight loss, confused, falling asleep at inappropriate moments such as on the toilet, at work or even while talking to someone.
At 4mgs I get stomach cramps, anxiety, nervous, sound/smell reactive as in everything is too loud and smells overpowering. As for 3mgs – well let’s not go there because I believe it is just a pipe dream.
Once I get below 5mgs; it does not take long for a relapse for the original illness that I take them for to occur and then my adrenal glands proceed to have a party with my immune system and I am not invited.
I can almost envisage my adrenals chatting to my joints and saying ‘Let’s make her joints hurt like a bitch today and tomorrow we can make her mouth dry and flare up the rash on her face’, while my joints happily agree and I pay the price in the most harshest of ways – my own body attacks me from all angles.
Each morning I wake up and my bottle of prednisolone 5mgs are waiting for me by my bed silently taunting me to take them, which of course I do at 7am every morning.
‘How hard can it be to come off these, after all I am only on 5mgs and you can’t be reliant on that dose surely?’ I have said to myself on several occasions which has led to futile attempts to wean off and then run back to the steroid bottle with my tail between my legs apologizing to myself for being so cruel to my own body.
‘I shall never do that again, come to Samantha you beauty’ I would say to the bottle of tablets on my bedside cabinet in a grateful voice and then wash a 5mg tablet down with a cup of Yorkshire tea.
Once back on my 5mg dose, all is well in my world except for intense feelings of shame and ‘steroid guilt’ that I have fallen off the wagon and am back on my full dose. I feel almost dirty for giving in, a bit like cheating on a diet with a large block of Dairy Milk.
‘I hate this drug, how can I possibly need them this badly?’ I ask myself and then make a vow to try and wean off again in a few weeks time.
Because my friends willpower is in abundance when you are getting the benefits of your steroid dose but you don’t realise just how much they do for your medical condition until you try to wean off them – and so the cycle continues.
It really is a ‘love-hate-loathing-need’ kind of relationship that I have with this drug and a very unhealthy one that is often made worse by other people and their total inability to keep their enormous, nasty and somewhat toxic mouths shut.
‘It’s a shame you are on steroids, you would have quite a nice face’ or ‘The steroids have made you so fat, will you EVER lose the weight?’
Or my personal favourite ‘I would never go on steroids, not after seeing what they have done to you’.
What on earth gives people the right to even say that? Think it by all means, say it to their friends if they must but to say it to my face kind of makes them look like they have escaped from the ‘house of anus’.
But hey that issue lies with them and not me but as I say ‘house of anus’ and all that.
Synacthen test and those damned adrenal glands
Of course when you take prolonged steroids, there is a chance at some point your adrenal function will need to be checked and mine needed to be checked when I became very unwell when I started to reduce my dose. This was done in the form of a Synacthen Test.
I have recently had my second Synacthen Test done to see if I am producing enough cortisol and in less than a 12 month period since my last test, my cortisol results have reduced considerably which kind of makes sense when I think of how unwell I have been feeling lately.
It appears that as well as having an auto immune disease, I now have fairly severe adrenal insufficiency for which I have been told is unlikely to get better as there is a possibility that my immune system has been attacking my adrenal glands.
So now I not only take steroids to keep my auto immune disease under control, I now have to take them because I am not making enough cortisol for on my own and have to supplement them with oral steroids.
Why do I hate steroids?
‘If they help you then why do you hate them so much?’ I have been asked a few times, well I shall tell you.
I hate them because my tolerance line between sanity, self control and boundaries has been blurred when it comes to steroids and now a dose of 10mgs can make me hate the world and everything in it – yes I am THAT sensitive to them.
I hate them because although I need just 5mgs for my disease, it is a dose that is not without the long term risks associated with steroids.
I hate them because if I have an asthma attack, the doctors will automatically reach for the steroids and give me a huge dose with zero regard to what the drug does to me in high doses. This is usually rationalized by medical staff advising me that ‘you have to be on huge doses for years and years before you get side effects’. Which of course anyone that has taken prolonged steroids will know this is utter rubbish.
I hate them because on high doses I am aggressive, unreasonable, twitchy, constantly hungry, I ache, I hurt, I can’t sleep and not only do I scare my husband with my 0-60 on the temper scale, but I also scare myself because quite simply it is like having a hostile and abusive lodger within my body and head when I am on this drug and I cannot evict them.
I hate them because they have forced me to be aware of my own endocrine system which is something I have never had to before. Now the thought of diarrhoea or vomiting can leave me quivering in my boots and catching the flu is not up for discussion as that will involve stress dosing when in fact a normal healthy body copes with stress all by itself without the need to take extra steroids to compensate – except my body is not normal and it certainly isn’t healthy.
I hate them because due to my adrenal insufficiency, I walk a very fine line between just being able to function to being completely exhausted, fragile and hormonally incompetent in the cortisone department.
And finally I hate them because for the sake of survival, to not take them is simply no longer an option.
Steroids – you totally have to be on them to ‘get them’.
Addisons Disease and Adrenal Insufficiency
Samantha Rose (C) Copyright August 2015
I get you! I got adrenal insufficiency after taking steroids for severe asthma for years. Now my asthma is better so Prednisolone has been changed into Hydrocortisone.
Wishing you all well, secondary adrenal insufficiency is a bitch as we still have to deal with the original illnesses plus failed adrenals…
I would say that the adrenal insufficiency is by far the hardest health issue I have had to face. If I am running low on cortisol my anxiety goes through the roof and it is totally out of my control. 😦
Thank you for your wonderful and personal comments. I am facing this myself as well as the destruction of my career which I fought hard and long to build. No one except those that go through it are aware of this struggle we have within ourselves.
Very true Simone, I firmly believe that even though doctors study steroids and adrenal insufficiency, they don’t truly understand unless they have the disease and take steroids themselves.
Samantha Rose stay strong my friend. Do you need someone to talk to I am here. I would be willing to check with you via iMessage if you have an iPhone iPad or Mac. Also would be willing to chat via email. Your friend
thank you so much Chelse, I think this is when we discover our true strength when it comes to taking drugs like steroids xx
Stay strong and if you need someone to chat with let me know. I’m always comfortable turning by email or by text message.
I could have written this blog. It is difficult and many days I have to force getting out of bed. Then my PMR returns and increase prednisone to twice the dose. The patience with hubby and others is awful. Noise and smell are intensified. You know it as you said it so wonderfully. Thanks for your blog.
My specialist said that he has never heard of the heightened sense/noise of smell before. This makes it very difficult when a doctor says that because I do not believe this condition is limited to what a doctor studies in medical school. More to the point, if they believe that they know everything about the endocrine system, then what hope is there for the future if they truly believe there is nothing left to learn because after all, you learn from the patient because without the patient and their new symptoms, you really have nothing.
This is scary. I came to your blog by accident. You describe so well my love/hate dance with Prednisone. After one year on the stuff, I am suspecting that my adrenal glands are not producing enough cortisol. It seems the moment I go below 5mg I’m in trouble. The doctor is starting to look at me strange, as if I am manufacturing my complaint, but I can feel the body wanting the stuff as my left knee inflames. Will it come to a point that I accept Predisone as another companion in my life? Having rheumatoid arthritis is enough. Don’t know… Regards, Richard. PS: cute dog.
Richard have you asked your doctor for a Synacthen test to see if your body can make its own cortisol under stress? I would be asking for that. I am not accepting of this yet but I have a feeling that it may be permanent with me.
I get very specific symptoms when my cortisol is low, in particular a headache and pain over my eye that painkillers wont touch but a small dose of steroids will. My adrenals are not making enough for survival but they are trying to wean me in a final effort to wake them up. I have gone from 5 to 4mgs in 4 months and I am feeling dreadful. Yet I know this is the only way of finding out.
But yes you are right, our bodies seem to tell us and only we can understand it. I would be asking your doctor though for that test.
I Samantha. I have just been diagnosed with Addison’s disease today. It is a relief for me as I have been struggling with what I thought was chronic fatigue for 9 years, so having an answer makes me know I’m not a fraud anymore. So I’ve started my 1st dose of blood pressure tablet, salt tablets and cortisone 7.5mcg. So my story is just beginning at 55.
Isn’t it sad how we are often made out to be frauds or putting it on and then when we get a diagnosis apologies are thin on the ground. Take care of yourself Louise, hope the medication helps you.
My new specialist is going to try and wean me again, they think that SAI caused by steroids is always reversible. I have been trying to wean for 4 years or so and am now going again from 5mgs to 4.5mgs for two months – and then again to 4mgs for two months and then changing to cortisone acetate. Here’s hoping for a miracle.