Sorry if this turns into a bit of a moan but I feel like I am at a bit of a dead end asthma wise when I know it should not be this way.
For those who don't know, basically, I have had asthma for over 25 years (since I was 2) and have been up and down the treatment ladder including being on maintenance pred when I was a teen and being very well controlled about eight years ago (Clenil and Bricanyl). Over the past few years, every time I get hayfever or a cold my asthma kicks off and each time it gets a bit worse (I have always struggled with post nasal drip) so my treatment has been stepped up. Since last October, I have almost always been struggling asthma wise and was re-referred to the respiratory cons last January. It took four months for this appointment and I managed to just 'get by' on a lot of reliever and some need for pred.
The problem is that I have had three appointments with my cons during which I have tried and stopped Symbicort SMART, changed to an MDI Seretide (to make sure enough was getting into my lungs), tried Omnaprozale which ruled out reflux and started Atrovent. I have noticed that my diagnosis has changed from asthma to persistent asthma - cough predominant (don't know how significant this is) and tests results suggest allergic asthma. I have also had an appointment with physio which wasn't particularly helpful and am waiting for them to follow this up with a phone call (I have posted separately about this). I have also tried an air purifier and allergy relief from Lloyds as well as taking precautions to avoid triggers. As the title of the post suggests, I feel that each of these changes (and changes to my hayfever meds) have helped but it feels that each time I go two steps forward there is one step back. Last week, I described this as climbing a ladder so that each one gets one step further up the ladder but I am not yet at the top.
I was feeling optimistic about last weeks appointment as I feel that Atrovent has helped and I am not using my Bricanyl as much. My spirometry was normal and I was discharged. At the time I felt quite happy about this (although a little confused) but now the fact that I was discharged has upset me - is this as good as it will get? I have been on holiday from work for the past two weeks and so have been taking it very easy (not going outside if pollen count is high and a lot of sitting doing very easy work) which, on reflection, may have contributed to feeling better. However, yesterday I walked a mile into town and went shopping which really made me struggle so am back up on 12 puffs of Bricanyl, low pf and waking up in the night.
Today I received the letter from the hospital which should have given my GP a list of things to try (Flixotide for extra ICS during exacerbations, Intal, possible referral to immunologists for desensitisation but my history of anaphylaxis may prevent this or consider Theophylline which has constantly come up but they are reluctant to use as I am naturally tachycardic) but is actually quite vague and full of reasons not to try them.
I am not sure where to go to next. My GP said a long time ago that I am out of his comfort zone and many of the other GPs at the surgery are only looking for a wheeze. I have seen my asthma nurse every week for the past month (although not for asthma last week) and she can be very hit and miss. Again I think she is only looking for a wheeze but her attitude when I told her that I had been discharged was well there is probably nothing else they can do. The adviceline nurse thought I had been undertreated with pred and so I printed out the info from the website which she talked me through but the asthma nurse was quite put out by this has my chest has always been clear and SATs normal so I do not need pred (ignoring my low pf). Do I just need accept that in order to become asthma free then I can't be as active as I would like (I am currently doing less that when my asthma was severe and I was regularly in hospital)? The other option is to carry on taking a lot of reliever but this makes my asthma nurse concerned about my heart rate and my cons concerned about it becoming less effective. I am not having major attacks at the moment and have only been recently admitted due to allergic reactions (with a bit of asthma thrown in). I know I need to see my GP but I fear I may be sent away again with no answers.
Sorry for such a long and probably incoherent post (I really don't mean to moan) - just feeling a little unsure/concerned at the moment. Has anyone got any experience/advice on dealing with this type of asthma or how I can approach the GPs? (I have read in a recent post about the benefits of going in knowledgeable so want to give this a try).