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Good control and inevitable suggestion of lower dose

6 Replies

Hi everyone

I had my dose of inhaled steroids increased in October which took a few weeks to adjust to as I did completely change the medication I was on. Since the change I am on 1600mg pulmicort (inhaled steroid) and i take oxis 6 twice a day as my LABA. (and montelukast too) I also have oxis as and when I need it so I'm no longer on salbutamol.

I was meant to meet my consultant this week but this has been moved to September which is fine by me as I have had good control since around December. The dose I am currently on is the only dose where I have had control since I developed asthma at 17 and currently I can go about my life practically normal (apart from exercise is hit and miss, colds, thunder storms but don't expect to be 100%). My worry is that when I meet my consultant he is going to encourage reducing my medication for obvious reasons but this makes me nervous having not had control at lower levels of medication. I don't want me playing with medication dose to have an impact on my life.

On the other hand, obviously it would be ideal to lower my dose and if I'm ill in future this would give me something easier to step up to. Has anyone else had this worry?

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6 Replies

I think i understand your concern. I personally think my lungs go through patches where they are more twitchy, and once they've had a bit of time to chill out they seem to cope a bit better when medication steps down a bit (currently for me this is all done with pred but same sort of idea i guess). I would explain your concerns to your consultant and if they are good - maybe they would do something like giving you a load of control so if you found stepping down treatment caused problems then maybe he's let you step back up on your own? If you've perviously had difficult asthma they would hopefully be eager to monitor you more closely during a step-down in treatment?

I agree with Soph - I personally step down and step up as required. For example I go between taking 2 puffs of my Seretide per day and 4 puffs per day, and I sometimes take my tiotropium daily, sometimes alternate days and sometimes I'm able to have a break from it.

It's good to be on the minimum level of medication which gives you control - control being defined as no nocturnal symptoms, and only using your reliever inhaler for exercise (without having a full attack) and a couple of times per week for specific triggers - like weather or an unexpected encounter with an allergen.

The 'spiral' goes in both direction - good control -> fewer attacks -> less inflammation can lead to not needing as much medication to maintain that control.

That said, if this is a bad time of year for you, then I'd expect your consultant to take that into account in advising you - it might be better to hold off on any changes until September when the humidity and thunderstorms are gone. If you feel anxious about the changes then do a slow taper - most of our medications are long acting enough that you can do alternate day dosing - eg 4 puffs one day, 3 puffs the next day, 4 puffs the next day.. until you're comfortable with that, then go down to 3/3/3/3 then 3/2/3/2 and so on.

Cx

Thanks for the advice soph and curiouser.

I guess I have already been given quite a bit of control ie if struggling (especially with colds etc at that time of year when changed onto meds back in dec) I have pred ready and also I have option to put my dose of inhaled steriods up. out of curiousity, what is the max dose of inhaled steroids allowed I wonder?

I guess I've not discussed stepping down before with cons properly, I just know its coming. Hopefully I will be monitored if stepping down.

Good advice curiouser re no. of puffs. I am currently on 4 a day so yes that sounds like a very sensible plan.

I wonder if they will suggest removing montelukast instead? I am allergic to cats and dust though and the latter is pretty unavoidable and I know montelukast is good for allergic part of asthma.

I have so little experience with stepping down - only stepping up. I stepped down two summers ago for about two days before I got very ill and thats the only time i've stepped down lol.

oh and ps I was Unigirl and haven't been on for about 6 months and thought change of name was in order since I have finished my degree lol

don't know if it compares to yours but i was once put on qvar 100 4 puffs twice a day to control a flare. Even thought it was the middle of the day I had to see an OOH foctor cos mine was shut and he was one of these no wheeze = no attack

I can't remember how long i stayed on the 8 puffs a day, i think he said something like stay on that until 3 days until the cough was gone then down to 3 twice a day for a week and then back to normal 2 puffs twice a day

In hindsight i probably should've gone to see my own doctor after a few days but i didn't

cici73 profile image
cici73

I understand your concerns. At my last two specialist appointments I've asked if I could still take Montelukast and thankfully they've agreed that ""if it's not broke, don't fix it""

I was very clear about wanting to continue taking it. All you can do is be very open and honest about your fears and reasoning. Good luck.

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