Prescribed Montelukast. Feeling a bit down/rant.

[Paradigm]

I went for a medication review and was offered either montelukast or a different combination inhaler (I presume at the same dose).

I was struck for a moment with the prospect of having some days for the new one to kick in and must have pulled a face, so the nurse chose to trial montelukast. It will take a few months to work, but I can go back in a month if it's not working.

I'm just so cross. I'd just reduced an unrelated medication and am on my last week of taper. I've got all my allergy medications.

My asthma seems unwilling to follow typical patterns which makes me wonder if it really is asthma. I've been trying not to use my reliever where possible, but it's just making me tired and slightly uncomfortable.

I did have an attack in December, but avoided going to hospital. I've never done, but have about two attacks a year. Mostly just low level irritating symptoms, mostly my peak flow is okay and not diurnal (often my morning is better). I consistently get symptoms at the bottom two green PEFs. Except a couple of weeks, it shoots straight back up - by the evening after my attack it was normal again. No wheeze. I feel a fraud in many ways.

I've had steroids twice since November but should have got some a further two times.

Nurse has started talking about 'difficult asthma' and says if these don't work then I'll probably benefit from seeing a specialist in a hospital.

I do feel better than November, but I can't help but wonder if I would anyway and if there's any point to be making my prevented at all. (I'm not going to stop taking it because I don't want concordance to be blamed for my symptoms.)

[EmmaF91 Community Ambassador]

Hi sorry to hear you’re a bit down and that your breathing’s playing up atm! Rant away - it’s therapeutic!!!

I’ve been on montelukast before, which helped initially, then seemed to ‘wear off’ so it was pulled from my med list. Just be aware of the potential side effects from it (for me it was vivid, lucid dreams repeating what I watched on TV before I went to bed... ok if it was family guy, not so much if it was game of thrones 😅😂!)

I had difficult asthma, which is now being called severe since we seem to have found a med regime that works (although I still have flare ups so 🤷‍♀️, maybe they’ll still call me difficult).

Assuming that you’re under a local hospital already, it may be worth asking for a referral to a specialist hospital if you’re not 100% sure that it is asthma as they’ll do a ‘difficult asthma’ protocol on you and fully assess it all, so if it’s not asthma they’ll look into what it is! (Unfortunately my protocol fell when I was really well for once so I was diagnosed as having a breathing dysfunction until they saw me bad a couple months later when it was severe asthma).

If you’re not under the local yet, and the referral they’re talking about is to there, then they’ll still do a lung function test/reversibility test to show if it’s asthma or not, and also reassess your meds to get you on a regime that works for you. It’ll also give you more support whilst everything’s going on.

I know how frustrating it is to be just stopping one med, then being put on another (my tail off preds only ever lasted a week before I got put back on... now on maintenance pred). From the sounds of it tho your resp team is being really supportive and proactive with your asthma tho so 🤞 you’ll get the help you need soon.

I hope this helps and that everything calms down for you soon. Don’t forget there’s people on here to support you through anything going on and that we understand the stresses and frustrations this condition can bring!

Emma x

[Paradigm in reply to EmmaF91]

Thank you, it is a very helpful explanation. It can feel very lonely sometimes.

I see a nurse at my GP surgery and then if I need steroids I see whatever doctor is there. (Both were equally good and I can't complain given that they slot me in as soon as I can get there.). So I guess it would be the local hospital's 'respiratory specialist'.

I am a bit worried about the prospect of being well when tests are run - I think I'm far too intermittent for that. It feels like the gaps between flare ups are very small right now, rather than a continuous thing, if that makes sense.

I guess if/when I have another attack I need to make sure I actually get seen so that someone with training can observe what's happening...

[EmmaF91 Community Ambassador in reply to Paradigm]

You’re welcome - I’ve been in the same situation without any support as I didn’t find this site until last year!

Don’t worry about the LFT - I was asymptomatic on my first one and my test was ‘normal’, so they booked me in for a histamine challenge (to try and cause a mild attack). As it was the day of my challenge I was bad so it was unneeded and I just did LFT and reversibility. The biggest changer for me was stopping my antihistamine before the LFT and visiting my brother (and his cat) the day before the test!

I ended up doing a histamine challenge at Brompton tho as they wanted to double check that I had asthma and I was asymptomatic... if this is the case with you don’t worry about it! Histamine challenge sounds scary but it’s just breathing in small amounts of histamine til your lung function starts to drop, them they stop the test give you ventolin or a neb and wait for you to return to normal.

If you go when you feel symptomatic and the LFT doesn’t suggest asthma then they’ll have to investigate the cause of your symptoms anyway! LFT has different ‘patterns’ for different diseases so maybe they’ll be able to identify what’s going on if it isn’t asthma from it anyway! Asthma is an intermittent disease anyway so most resp specialists (nurse/docs/physiologist etc) understand that you can be fine one day and on the floor the next, so if nothing shows the first time they’ll rebook you!

Hope that helps clear things up for you!

[Anniecath]

Hi, sorry to hear about your troubles. I have been on Montelucast for years and for me it has been incredible. I used to get horrendous chest infections every winter until I started on the tabs. Now, I can't remember the last time I had a bad chest infection. However, we are all different. I think it is important to monitor closely how the meds are affecting you, and to be aware that you know your body better than anybody else no matter how expert they are. I wish you luck and hope you get sorted soon.

[Paradigm in reply to Anniecath]

Thank you for your reply! Sorry it's taken me so long to reply, I think I had the browser open and then lost it.

Fortunately, my asthma has been back to it's normal self (briefly triggered when exposed to allergens/irritants but righting itself) since I started taking it. It's hard to say whether this is contributed to by the Montelukast or just an upswing but I've got a cold and a sickness bug and the asthma is holding itself out.

I'm hopeful it will keep!

[Anniecath]

Hi, hope you carry on improving. I get hayfever too and am allergic to mould spores etc so take beconase and eye drops to protect myself. Call it my armour !