Is severe asthma different to asthma?

In my last blog post I mentioned how I met some other people with severe asthma at a BLF-AUK event where we had a conversation about asthma and severe asthma.

It may have the same mechanisms in that it is a condition where the airways become inflamed and irritated causing difficulty breathing but here ends the similarities. The way it displays itself is different. The way it is managed is different. The way it impacts your life is different. There are too many differences to name them all so this is why we came to the conclusion that it needs a different name.

When someone hears  severe asthma they think its that common everyday condition that every second person has. The part they have not heard is the “severe” that went in front of the asthma which makes it very different, but because asthma is so common people are very relaxed so don’t take it too seriously or act urgently when dealing with it. This leads us to become so frustrated. I can think of so many times where I could potentially have not needed to go to ICU if the Dr I saw at the front door when arriving in A&E took my severe asthma for what it is and not treat it just like asthma.

One of the challenges that people with the condition severe asthma face is that so many in the medical profession refer to those with asthma that is not in control as having severe asthma or brittle asthma when they actually don’t. There are so many terms floating around to describe asthma that is not controlled for example

  • brittle asthma
  • severe asthma
  • difficult severe asthma
  • difficult asthma
  • severe brittle asthma

That is just a few. The issue arises is that some of these terms are used incorrectly and we have GP’s or nurses in the GP surgery telling someone with asthma that is not in control that they have brittle asthma when they don’t. They just don’t have their asthma in control at that moment and need some medication tweaks.

The types of asthma such as brittle asthma can only be diagnosed by a specialist asthma consultant at a specialist hospital. Not even asthma consultant at local hospitals can diagnose it as there is a raft of specialist testing and multi disciplinary input to ensure that everything is ruled out before you are diagnosed with this very rare type of asthma like severe asthma or type 1 or type 2 brittle asthma.

This is why I and others have been thinking that perhaps these extremely rare forms of asthma need a different name that perhaps does not even have the term asthma in its name to save us as patients from not being treated correctly. Maybe just then we won’t suffer so much when in hospital.

Another big issue for some with severe asthma is that we can look ok one minute and the next we are fighting for our life or we look ok but actually we are working incredibly hard to breathe but don’t want people to know. You cant see severe asthma unless you are having an attack which makes it so hard for people to understand just how debilitating it can be. How every aspect of your life is dictated by your condition, that even taking every medication that is there for asthma it is still not enough to give you a quality of life. It is hard to think that despite taking 30 different medications each day I still don’t have control of my health or my breathing to where I would like it.

I wish my lung condition could be covered by the term asthma but severe asthma is far more complex to manage, treat, control, and understand. No 2 people with severe asthma are the same which makes the condition so much more complex to diagnose and manage. This often leads to very frustrated patients and frustrated healthcare practitioners because despite everyones best efforts life is not good, hospital admissions are just part of life, even ICU becomes part of life which should never be the case.

This is why I think severe asthma needs to be totally separated from asthma and doing this could be achieved by changing its name to stop people from being complacent when treating you in an emergency situation.

I hate living with severe asthma and hate that it is so poorly understood. Maybe one day there will be a huge break through and suddenly all of us whose life is dictated by their severe asthma is no longer like that. Until then I will continue to try and raise awareness of what it is like and just how serious a condition it is.

Sometimes the hardest pill to swallow is the smallest

IMG_3252

 

The picture on the left is all the tablets I take first thing in the morning when I get up. Other than the prednisilone the next smallest is the tablet pictured on the right. Its my Theophylline. At one point about 8 years ago I thought this was my wonder drug. I had a fairly stable patch when I first started taking it. As I started losing control I was in hospital more requiring IV aminophylline (an intravenous version of theophylline but all from the same family). It works great but has its problems, the biggest one is weaning off and back onto oral medication.

One of the other issues I am having with it just now is establishing a therapeutic dose. Over the last year my theophylline serum level has always been towards the lower end of the therapeutic range and sometimes dipping under. I have tried increasing the dose but then I end up with horrendous effects from toxicity because my serum level is way above therapeutic range. The feeling of nausea, vertigo, dizziness and uncontrollable thirst is torture and there is no quick fix to get rid of it. The tablets are MR (modified release) over 12 hours so your level will only drop very slowly over time. It takes about 2-3 weeks for theophylline to build up in your system to achieve a therapeutic dose so it is just as long to reverse it.

I would normally just chuck all my tablets in my mouth and wash them down with a glass of water or a vitamin C drink but recently I have found I fish out my theophylline and have to almost pluck up the courage to take it because of how it is making me feel sometimes. It works so well on my chest that it is worth taking it but when things are just not quite right and the side effects are bad it is hard to make yourself swallow it down.

You would not think such a small innocuous tablet could make you feel the way it does. It seems to be the smaller the tablet the more potent it and its side effects are. Between theophylline and prednisilone Im not sure what is worse but what I do know is that both of them do work wonders and do fantastic things to my chest.

I guess the point of this post is that no matter how hard it is to make medication as long as you get the benefits from it then its worth having the side effects. I know I would be much worse off if I didnt take it but somedays the side effects are just so strong you wonder if it is worth it.

The beauty with modern day medication is that there are other medications you can take to counter act the side effects. You can end up in a bit of a polypharmacy and taking so much medication you don’t know what is for what, but as long as you remember or write down why you take each thing and check regularly with a GP or pharmacist to make sure you still need the extra meds then you won’t be taking stuff you don’t need to. By doing this I have recently managed to cut out a good few tablets which I didnt really know what they were for or what they were doing but the bulk of my medication I now what it is for and why I take it and how it effects me if I don’t take it.

Its tough sometimes but for me I far prefer dealing with side effects and taking extra meds for it compared with fighting for breath all day everyday and being totally limited in what I can do. Theophylline gives me some more breath back and some control!!!