Somewhat belated introduction!

I probably should have introduced myself before posting about the woes of my asthma and commenting…sorry :)

I am 17yo, biologically female but identify as male. Which kind of sucks but hey, that's life. I have 'hayfever', eczema and asthma (you would never have known that, would you?), and I suffer from tension-type migraines and cluster migraines. It is suspected that I am CYP2D6 Ultrarapid which in short means it is tough as hell finding medicines which work for me. On the one hand, we have opiates like codeine and Tramadol which put me into respiratory depression or arrest and could easily kill me even at normal doses. On the other hand, we have a wide range of medicines from Paracetamol through to Cetirizine, Loratadine and Clorphenamine (in Piriton) which have absolutely no effect on me whatsoever. Last time I was in the ED with a cluster attack only a few weeks ago they tried to give me IV Paracetamol to bring down my fever and take the edge off the pain but it might as well have been water. We haven't found an Antihistamine that works yet, with the partial exception of Acrivastine (in Benadryl Plus) which helps a bit with the itching but costs about £7 a packet and lasts less than a week!

I've always had hayfever and a bit of a lax immune system and have had frequent respiratory, sinus and ear infections since I was born. During one particularly nasty chest infection when I was 6 I ended up in hospital (again) and was given dispersible Prednisolone (ergh ergh ergh), antibiotics and a Ventolin inhaler (back when they were killing the environment, yk) all of which I hated but at least they helped to clear it up. In September 2013, I started having some little 'attacks' where I was struggling to breathe and coughing and tight. They more or less passed on their own and my spirometry was normal so they gave me a Ventolin 'because we might as well' and told me I didn't have asthma. Until March 2014 I was fine. Then I started having problems. I would get really breathless and tight just doing simple things and I started using my Ventolin more and more. And more. And more. I was using about 6 a day when I went back to my doctor in May to ask for a spacer as I thought maybe I just wasn't quite getting enough in. But I still used it a lot. And I was using it more. And more. And more. A point came in August where I was using about 15-20 shots of Ventolin A DAY just so I could actually get out of bed and do stuff. I made an appointment to see my doc who referred me back to have another spirometry in October.

October came round and my cough was horrible. I sounded like I was a 5-pack-a-day smoker with TB and although I didn't wheeze when I breathed - and still don't as I have CVA - the cough was full of wheezy polyphony. I couldn't do the FEV-6 because I couldn't breathe out that hard for that long. I struggled with the FEV-1 and it just got worse every time I did it. My Sats weren't terrible but they weren't great either, at between 92 and 95%. My FEV-1 was 60% of my normal and the nurse heard my cough and gave me Clenil 100, two puffs twice a day which is pretty standard and made a follow-up for 6 weeks later, giving Clenil time to work.

A few weeks later, I ended up in hospital in A&E. I had a wheezy cough again and was struggling to breathe. My peak flow was a lovely 160, which is <40% of my predicted. They gave me 40mg of Pred. on the spot and we used my spacer (preferring that with my reliever over a nebuliser due to persistent tachycardia) to give me 10 of my Ventolin. I was sent home after a period of observation with 500mg Clarithromycin twice a day and 40mg of Prednisolone once a day for a week. I was told to go and see my doctor the next day to get a peak flow meter so I could track that at home. I also ended up having to get a prescription for more Prednisolone as the doctor in the ED only gave me enough for 3 days but that's a story for another day! A week later, I had my review with the Asthma Nurse and we decided to continue with the Clenil for another 6 weeks as I had been ill so the results probably weren't the best and my peak flow wasn't up very much. Between that and my next review I had two rounds of Prednisolone, both 60mg once a day for a week, back-to-back. I was getting very tight in my chest in the mornings and was unable to do anything when I woke up until I had had a few puffs of my reliever.

When I went back on Christmas Eve, I told the nurse about the tightness and she looked at my peak flow chart and saw that where my afternoon PEFR readings were around 280-300, my morning ones were more like 160-170. She prescribed me Seretide 50/25 and I saw such a huge difference, even just by the next day. I remember waking up on Christmas Day and thinking 'hey, I can breathe…WOAH!' It was pretty amazing for me. I could breathe and after a few days, my emergency inhaler became just that. I didn't rely on it every day. It was just there in my pocket if I needed it. My peak flow variation was only about 20 'points' at most and was usually closer to 10, or even stayed the same from morning to night. Three weeks later, I saw Asthma Nurse and she seemed as pleased as I was. We decided that my asthma was now finally under control and the current regime was working so it was time to put it down on paper in the form of an Asthma Action Plan.

About 6 weeks ago, I found my symptoms coming back. I was getting tight in the mornings again and my peak flow was going back into the 200s. My cough returned. It's not really licensed, but as per my AAP I increased the number of puffs of Seretide 50/25 from two twice a day to two three times a day. I did that for a week but I wasn't any better and I didn't want to OD on Salmeterol, so I went to the doctor. We are lucky that our local practice has a GP who has a special interest in respiratory medicine and prescribing. He suggested Prednisolone again, but I declined that so he suggested Montelukast (Singulair). I already take a few tablets so I was wary, and instead brought to the table something I had seen on a blog I follow, where the girl has two different strengths of inhaler for stepping between zones on her AAP. He thought that was a really good idea and gave me Seretide 125/25, telling me to take it in place of my normal one for two weeks and then to step back down to Seretide 50/25.

When the time came to step down, however, I only lasted two days before stepping back up simply because within 24 hours of being back on the 50/25 inhaler, I was really tight and really breathless and coughing a lot. A few days after that, I got hit with this multi-system multi-stage infection that seems to have cropped up this year. I missed steroids initially at the UCC but two days after that I was back on Pred. 25mg a day (1 tablet instead of 8! Yay! People wouldn't think I was overdosing!) and Amoxicillin 500mg 3 times a day for another week. About a week ago, I ran out of the Seretide 125/25 just as I was getting a bilateral ear infection and a throat infection (must have been the same virus. Either that or I was really unlucky this month) so I stepped back down and the same thing happened. Within about 12 hours I could hardly breathe and had to use loads of my reliever (now Salamol). I made an urgent appointment and got some more, as well as some Clari again to help clear up the infections.

Early March signalled the start of hayfever season for me, too, which involves tight chest, wheeziness (unusual for my CVA), rashes, hives, itching incessantly, 'allergic shiners', flushed face, lightheadedness and a runny nose which makes me sneeze constantly. As I am CYP2D6 UR we have been unable to stabilise my severe hayfever and all we have so far is Benadryl Plus to help a bit with the itching, my reliever inhaler, and a Mometasone nasal spray which helps quite a bit with my nasal symptoms.

I also play ice hockey and sing, and while singing doesn't trigger my asthma, getting frequent chest infections and having asthma that isn't well-controlled both affect my singing. My asthma is brought on by exercise and cold, dry air so while neither of those bring it on particularly badly I still have difficulty keeping up at ice hockey.

This week, I was going to see Asthma Nurse to talk about why I can't seem to step down again, but my mum talked with me and we have cancelled that appointment in favour of an appointment with the GP to ask about a referral to an allergist. Hopefully we can work out why my medicines work for a bit and then stop working and sort out regimes for my ice hockey, chest infections and hayfever.

I'm lucky in a way, as my best friend in the whole wide world has asthma and, technically, we are both on the same meds (she is on Flixotide and Serevent as separate inhalers whereas my Seretide is the single-inhaler version of those two put together) and for a while we were on the same dose. While I have only had 'proper' asthma for a year, she has had it literally all her life and our families are pretty close so my parents can learn from hers and my friend and I can have lung-to-lung chats :P


My discontinued asthma/allergy meds:

- Ventolin 100mcg

- Clenil Modulite 100mcg

- Bricanyl turbuhaler 0.5

- Cetirizine

- Piriton

- Loratadine

- Benadryl

- HayMax

- Seretide 50/25

My current asthma/allergy meds (* = as-needed prescriptions):

- Salamol 100mcg

- Seretide 125/25

- Mometasone nasal spray

- Dermol 500

- Prednisolone*

- Clarithromycin/Amoxicillin/Erythromycin (rotate)*


Alongside the health stuff, I am an avid ice skater and play ice hockey. I sing in a world-renowned youth choir in which it is my 5th year currently, I got my Grade 8 distinction (135) in Voice just before Christmas, and I am working for Grade 8 on Cello and Grade 5 on Piano. I do my Piano and Singing lessons at the Junior Saturday School at the RNCM every week and have done for 6 years now. I have sung with my youth choir in the Royal Albert Hall three times (will be five after this summer!), so far have recorded 5 CDs with them, sung at countless concerts inside and outside, busked at Christmas each year, sung in wind, hail, sleet, snow, rain and sub-zero temperatures at one particular concert, and toured in Scotland, Cornwall, Belgium and most recently Paris, where we sung at the top of the Eiffel Tower as a guy was proposing to his girlfriend (spoiler alert: she said yes) and the twinkly lights were on and the song we sang while that was happening was Duruflé's setting of 'Ubi Caritas'. We also got to have a full day at Disneyland which was awesome! I also love reading, writing (especially poems and songs), art and cycling. I also like to raise awareness for rare conditions such as Neuroendocrine Cancer (I had a small T1 NET removed last year which thankfully hadn't spread) and Non-Asthmatic Eosinophilic Bronchitis which caused my mum to cough all day, every day for over three years but is now stabilised on high-dose Flixotide and occasional bursts of Prednisolone. I also like raising awareness for often-stigmatised diseases such as Type 2 Diabetes (which runs on my mum's side), asthma, and so-called 'easy' cancers like breast, prostate and ovarian which are all hormone-mediated, all run on my dad's side, and all have taken the family members who have had them. Thumbs up to my genes which officially suck.

I always try to remember that there are people who have it far worse. I try to be fair and I try to accept and love everyone and I am a Liberal Christian who believes that the only things that matter to true Christians are the things God himself said i.e. the Ten Commandments and the Highest Commandment (""Love one another as I have loved you""). I am not homophobic, and I am not against abortion, and I am all for gay marriage in loving relationships in the same way that I am all for straight marriage in loving relationships, and seriously don't believe that God has anything against gay people or what they do. And what they do behind closed doors or out on the street is as much anyone else's business as what any straight person does. I am not racist, I am not transphobic (well, duh), I am not ableist, I am not fascist in any way, shape or form. I believe that addicts deserve our compassion and help and treatment on the NHS, not vilification and imprisonment. I believe that people can be reformed. I believe that mental illness is as physical and real as any so-called 'physical' illness. I believe in truth and honesty and fairness without judgement. I believe that life is precious, even though I do not believe in Creation. I believe, above all, that everyone is equal and deserves to be treated as such.

I have a couple of questions which I will ask over separate posts so I apologise in advance for posting a lot but I'd rather that than putting all my questions into one big long spiel that nobody will read! :P

So yeah, that's me.

Hiya :)

1 Reply

  • Hey, it's my blog you are talking about :) I remember you commenting on it!

    I am glad the seretide 125 is helping... My asthma nurse has actually changed me from Flutiform 125 to Seretide 125 so we are on the same inhaler... SNAP! So I just wanted to say welcome to the board, I don't post frequently on here but when I do I always get good responses... Also don't forget that you can phone the Asthma UK nurses anytime you have a question about anything :)

    Jenni x

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