Ain't Easy Being Wheezy!

So its happened, the time has come to say goodbye to xolair! The MDT all agreed that it clearly isn't giving me any benefit anymore in terms of preventing my flares, so we have decided to stop it. Unfortunately I'm already on all the maximum therapy and don't meet the criteria for any other biological treatments so my team have decided to refer me to Birmingham to hopefully undergo bronchial thermoplasty. Bronchial thermoplasty (BT) is a fairly new procedure ( https://www.asthma.org.uk/advice/severe-asthma/treating-severe-asthma/bronchial-thermoplasty/ ) that involves passing a tube down into the lungs and heating it to essentially burn away some of the thickened muscle. I'm not going to lie, it doesn't sound like a particularly pleasant experience and there are definitely risks associated with it, but surely it has to be better than spending a week of every month in hospital on oxygen and IV medication?! My centre is restarting their BT service but apparently b...

So thanks to the incredibly mild winter my hayfever season has already started! Which means that I got my wish of wanting to see if xolair would help reduce my symptoms in my main allergy period. Turns out the answer to that is a resounding NO! I've had hayfever symptoms for about 2 weeks and so far have had 1 A&E trip and am currently on day 5 of another holiday in hotel NHS! Yet another attack with a silent chest, IV aminophylline, critical care outreach reviews and oxygen for days - still avoiding the dreaded ITU admission, but to be honest I'm getting bored of skirting the line! I think its probably time to give in and call it quits with the xolair, it helped a bit but its really not doing enough and staying on it is just stopping further treatments and investigations from happening. So we're hoping my clinic appointment can be brought forwards (its currently in about 6/7 weeks time) and that we can get everything pulled together and up to date with one consulta...

Current pred dose: 40mg Current weight: 322lbs So it hasn't been the best of starts to the new year. A brief 3 day admission a week or so in following a few allergic reactions led to me catching flu (sadly I was unable to have the jab this year due to my ongoing immune issues and a reaction I had last year!) which, whilst I managed to avoid hospital, did completely knock me out for 10 days or so! My peak flows for this month have looked like a pretty rubbish roller coaster! They've either been at my best, or sat in the red zone at hospital level (ok, so I probably should have been in hospital with the flu, but mentally really couldn't cope with 2 admissions in such quick succession - I did get checked by my GP on day 2 and got some tamiflu though!). So the control I had managed to gain back at the end of last year seems to have vanished once more. And then just as I was getting over that the temperature dropped! So down goes the peak flow again, ending in me walking ...

Current prednisolone dose: 40mg (boooo) New year weight: 329.2lbs (oops!) So 2018 is finally over! I'm not going to lie, its a year I'm pretty glad to see the back of, with 13 admissions to hospital with severe or life threatening asthma attacks and who knows how many further trips to A&E and the GP with it! It was a pretty difficult year mentally because of this, aside from just coping with the admissions themselves I was pretty low functioning in between them so became quite isolated (although my friends and family were all absolutely amazing in making sure they kept me involved in things!), I gained a lot of weight (between low activity levels, high doses of steroids and eating away my feelings I didn't have much hope there!) and had to suspend my studies because of the amount of time I was spending in hospital. Having said that, now that I finally feel like I'm starting to come out the other side I think its made me a much stronger person (every cloud ...

Current prednisolone dose: 25mg Current weight: 321.4lbs (-4.4lbs) Slightly late this week posting as I’ve been knocked out for a few days with a cold that immediately started to irritate my chest! While I’ve been lying around feeling rough and attempting to tweak things to avoid upping my steroids again/stay out of hospital it got me thinking about how I cope with my asthma - something I’m often asked by friends and family (spoiler alert: I don’t!). So, without further ado here are my personal tips that I’ve found help me cope with severe, unruly asthma! (Although most of these can be applied to all asthma!) 1. Have an action plan and know it well This really is so important! Every asthmatic, regardless of how mild or severe should have an action plan in place. It gives a guide on what symptoms to look out for, how you can increase your own medication (for example, increasing your preventer dose) at home and when you should seek further attention (either through your GP or at...

Current prednisolone dose: 25mg!! Current weight: 325.8lbs (-3.8lbs!) Wooooo! So now that I'm actively trying to get down on my steroids I'm also going to try and properly lose some of the weight I've gained - rather than just maintaining, which was my aim during my 4 month xolair trial. Week 1 has seen success in both! Especially surprised I managed to lose any weight this week as last weekend saw me overindulge in the food department massively! I was helping out with some post-graduate medical exams which meant I got to go to the examiners dinner (extremely fancy food!!) and we were well supplied with snacks throughout the day (7:45 till 5:30) so I ate a lot of biscuits... I've also struggled quite a bit with fatigue from lowering my prednisolone dose this week so have spent a lot of it in bed feeling sorry for myself, which means, you guessed it! MORE SNACKS. But without a doubt the thing I'm most excited about is the success I've had in reducing ...

Current prednisolone dose: 35mg Current weight: 329.6lbs (oh dear...) So, we have the go ahead to try and start weaning down the steroids a bit! I’m going to try and post a weekly update with progress on the steroid dose and hopefully some weight loss! Some weeks will just be a random ramble, others may have a more definite topic - but hopefully it’ll keep me posting on here. I had my 16 week review of xolair on Monday and while it hasn’t massively reduced the number of admissions I’ve had, I produced a variety of graphs (which I will add on here later!) to try and show the difference it has made to me! Finally I persuaded my consultant that actually my admissions aren’t lasting as long, I’ve not required an HDU admission and day to day my peak flow is far more stable and I’m needing much less salbutamol. So the MDT has agreed to give me some time to try and get my steroids down to 25mg daily and then from that point we’ll give the xolair another 2 months. It’s always difficult ...