Saturday, May 14, 2016

Science behind my asthma

I just found an article that seems to describe my type of asthma. It is Jantina C. de Groot, Anneke ten Brinke and Elisabeht H,.D Bel: Management of the patient with eosinophilic asthma: a new era begins.

I learned from the ASC conference that I have adult-onset eosinophilic asthma. According to the article, this is an uncommon but well-defined asthma phenotype. This asthma phenotype can be identified by "typical symptoms (few allergies and dyspnoea on exertion), typical lung function abnormalities fixed airflow obstruction, reduced forced vital capacity and increased residual volume),typical comorbidities (nasal polyposis) and a good response to systemic corticosteroids." This is me! 

This is the part that convinced me this article was very relevant for me: "Another characteristic feature of late-onset eosinophilic asthma is chronic rhinosinusitis with nasal polyposis[76]. The association between peripheral blood eosinophilia, nasal polyposis and asthma has been recognised for many decades, in particular in combination with aspirin sensitivity [30, 77, 81]. This association has been confirmed in a study in adults with difficult-to-control asthma, showing that severe sinus disease was a strong independent predictor of persistent eosinophilia in blood or sputum [54]. Mucosal inflammation in these patients might extend even to the middle ears. In 2011, a newly recognised middle ear disease, eosinophilic otitis media, was described, characterised by a highly viscous, eosinophil-predominant middle ear effusion causing progressive deterioration of hearing. This otitis is associated with asthma and nasalpolyps, and responds to prednisone, whereas other treatments for otitis media failed [82, 83] Again this is me - my damn effusions that only go away with prednisone - because they are eosinophilic otitis media.

The article then goes on to recommend that patients with this phenotype can benefit from various monoclonal including "Omalizumab (Xolair) is a monoclonal antibody that binds IgE and is, to date, the only biologic therapy approved for asthma." which I already take. However, there are others that show promise. "Lebrikizumab and tralokinumab are both humanised monoclonal IgG4 antibodies to IL-13 and potent inhibitors of its function."

OK - I have to admit, it's all a bit over my head and I need to read it more carefully and discuss it with Mike to figure out what it means. But I think it is a good start to understanding the scientific approach to my severe asthma.

Wednesday, May 11, 2016

ASC Conference

Mike and I went to the Asthma Society of Canada Conference  in Toronto last weekend. Here is the link for a video of each talk plus the accompanying slides.

I thought the most interesting presentations were by Mark Fitzgerald and Param Nair. Dr. Fitzgerald talked about the difference between uncontrolled asthma and severe asthma.

Uncontrolled asthma occurs when people are not taking the appropriate medications. It can become very serious and patients can end up in hospital. Why would patients not take the right medications?
  • The patient doesn't have a GP or never thought their asthma was serious - so never had a diagnosis and hence no medication was prescribed
  • The doctor didn't do enough analysis and prescribed the wrong medication
  • The patient couldn't afford the medication (we need universal pharmacare so everyone can get the medication they need)
  • The patient didn't realize that they had to take their medication even when they were feeling fine
  • The patient simply quit taking the medication to see what would happen - this is more common than you would think and can have frightening results. 
Severe asthma is when a patient is properly diagnosed, taking all their medications and still having exacerbations and needing prednisone. Some people need predniosne every day - other people need it in short bursts to end an exacerbation.  I have severe asthma. This is why I had an exacerbation in March after catching a cold - despite taking Xolair, teva trimel, floconazole, symbicort, spiriva, and pulmicort. But, because I am 100% compliant, the symptoms cleared up with prednisone and azithromycin without ever getting completely out of control. At least that is how I understand it.

Dr. Nair's was given an award by the Asthma Society for his break through work. His talk was very important - but  seemed to be aimed at people who already knew a lot - ie doctors. I The main thing I, as a severe asthma patient, understood was that when our body is under attack, our bone marrow produces different kinds of white blood cells to fight the invader.  In a person with asthma these white cells appear in the sputum. Eosinophils in the sputum are a sign of an allergic reaction and can be treated with corticosteroids and prednisone. Neutrophils in the sputum are a sign of infection and can be treated with antibiotics.  There is a fairly simple test that any lab should be able to perform to determine what is in the sputum. Most doctors do not do this test and they should. Otherwise they will prescribe unnecessary medication or ineffective medication. Lucky for me, my specialist does all this and I think he is as cutting edge as Dr. Nair.  I am trying to get a better understanding of this scientific approach and will post again when I know a bit more.

I was on a patient/doctor panel which was intended to give the audience an understanding of doctors' and patients' different perspectives on the disease. It was very rushed and I don't think it actually worked. However, preparing for it - which I did for hours and hours - did give me insights into my own story. Now I just need to figure out the white blood cell thing and I think I will know a lot more.

The last session at the conference was a panel on the need for fair pharmacare. I will write up my thoughts on that at a future time. It is a tough subject with many emotional, economic, business, societal and  political implications - not to mentions society's view of the purpose of taxation, who should be getting this healthcare movement going (the bean counters or the visionary politicians),  plus the actual impact on individual patients who do not get better because they cannot afford their medication.

Last bit of totally good news - my peak flow hit 500 on Monday! This must be good news.

Wednesday, May 4, 2016

May 4 - Going to Toronto

Here it is - the day before we go to Toronto for the Asthma Society's conference called "Fighting for Breath." I am happy to say that my asthma symptoms are totally fine. I realize it is about 6 weeks since I took prednisone and that is how long a burst has lasted in the past - but I'm hoping I will stay fine from now on. Maybe forever. Who knows - that is the challenge of asthma - it is so unpredictable. Yes, you get hints when it is starting but you never know when that will be. I think i had another migraine a couple of days ago. The Axert seemed to work. I hope that doesn't become a regular occurrence. apparently if you have asthma you are more likely to get lots of migraines - nasty thought,

We are flying to Toronto by West Jet - flying out of Cassidy at 6 am tomorrow morning, I hate getting up early so we have been preparing by going to bed before 10 for the past few nights. I must be in bed by 9 tonight. I am pretty much packed and am only taking the bare minimum. Not even any extra drugs - It's Toronto - what could go wrong.

Not so Fort McMurray which is experiencing a terrible wildfire. Everyone - 88,000 people-  had to leave town with hardly any warning. It's only May but it's so hot and dry with strong winds that the fire is just rampaging through the town - climate change hitting hard right where the fossil fuels are being extracted. Poor people. Thank goodness Rob wasn't there.

Once we get to Toronto, I will be attending the NAPA Meeting on Friday. It will be interesting to see everyone again. We are doing something with our asthma stories to help spread the word  about asthma. I wrote my story weeks ago and think it is good. It is cheerful, to the point, and 600 words long. Hope this all works.

On Saturday Mike and I will attend the Conference. I am on a panel with another patient and 2 doctors. We have to introduce ourselves and  then a moderator will lead us through discussion about such issues as why it's difficult for people to take medication, etc. Seems a little dull.  I have rewritten my introduction about 6 times and it never seems right, I want to be serious but upbeat and touch on at least a few of the issues.