I have a guest blog post coming up soon from a good friend of mine who like me has brittle asthma but has recently had her life turned upside down due to the medication we rely on.
Everyone has heard of steroids and the majority of people will think there is only one type of steroid. The bad steroid, the anabolic one that the body builders abuse and that you hear about when athletes have failed drug tests. But these steroids are not the steroids which most people with asthma will depend on.
Unless you are newly diagnosed and on the first step of the Asthma Management Guide where you would only require a short acting bronchodilator then every asthmatics will be on some sort of corticosteroid. It will most likely be inhaled where the corticosteroid can be inhaled into the lung and will act locally in your airways rather than effect you systemically. This is why inhaled therapy for asthma works so well because you can get the medication to work directly where you want it.
However there is the odd occasion when you are climbing the steps on the asthma management guide and have the SABA, ICS at varying doses, LABA, antileukotrines, theophylline, nebulisers, antibiotics, antihistamines and you are still not getting any control. Your consultant may then be forced into using long term oral steroids. A short burst is great. A chest infection or asthma exacerbation 40mg of prednisilone is no bother and really won’t cause you much harm. It will do more good than harm. Your breathing will feel better and 5 days later your off them feeling great. But what happens when a short course turns into lots of short courses which turns into permanent long term steroids and then you find you have a maintenance dose and finding the lowest dose you can get to which can then become your maintenance- those 1mg drops when FeNo is ok is a great thought as its 1mg less you have to take of the ‘dreaded pred’.
You may have gathered already that I am not a fan of steroids. Others who have severe asthma or uncontrolled asthma will have lots of different names for steroids. The medication name for the oral steroid used most commonly in asthma in the UK is prednisilone (US readers its like prednisone but is not metabolised by the liver), however it has a lot of nicknames and nicknames surrounding some of its side effects.
Nicknames for prednisilone included: dreaded pred, devils tic tacs, asthmas happy pills, pred.
The main reasons prednisilone gets such a bad rep when you have to take it long term is that as great as it is at helping breathing it is a killer on the rest of your body but hey they fact you can breathe better is worth the extensive list of side effects which have also earned themselves some great little nicknames like:
predsomnia: insomnia induced from being on long term prednisilone
predmunchies: the extreme hunger associated with long term prednisilone and the craving for carbohydrate or chocolate. Fruit and veg just won’t satisfy the predmunchies
moon face: the stereotypical shape your face goes when you are on long term steroids. How does everyone face end up the same shape- prepred you could all have totally different face shapes but predface you all look the same!
Over the years I have had a huge love hate relationship with prednisilone and prednisilone was responsible for my somewhat dubious compliance when I was younger. (I did stand up and talk about this in a room full of Asthma UK employees and the likes of Adel Mansur, Ian Pavord to name a few of the pioneers in asthma management and treatment who were in the room-it was a little nerve-wracking confessing). As I told the room I saw why prednisilone is needed to treat asthma and get on top of it but what happens when you have constant bad spells and keep being put on prednisilone, it makes you better and almost lulls you into a false sense of security because rightly the Drs don’t want you on it long term but when they take you off it your back to square one Whats the point in taking it in the first place to feel better for the time your on it for it to be taken away and you feel awful again. So I really didnt see the point of even taking it. I then got a new consultant who actually treated me as a person and understood me and my feeling towards steroids etc and we got a good balance and the compliance was no longer an issue (to note the dubious compliance was only with the prednisilone I always took my inhalers, anti histamines and other meds).
I still feel conflicted taking prednisilone even now. Me and my consultant disagree somewhat on it but I am of the opinion my work is important to me and I am all to aware I won’t be working for long unless there is a miracle so if pred means I can work then pred wins!!! It won’t be forever but doing FeNo I can see the good effect it has.
But with all the good and the easy breathing with it there is the fear that I think all consultants, asthma nurse specialists will have. For all the good pred does there are some devastating side effects which go with it. I won’t write much as it is explored in the next guest blog post but just briefly for me long term prednisilone has caused: osteopenia, adrenal insufficiency, immunosuppression, optic nerve neuritis, amenhorrea, thin skin, altered healing, reflux, myopathy, fluid retention, mild depression, insomnia. The list is fairly large and require medication to counteract some of the sideffects but I guess being able to take medication for the side effects of the prednisilone beats not taking the prednisilone and not being here.
Look out for the next guest blog coming up at the end of the week!