Anyone got any advice for coming off Beclomethasone? I’m was on 800mg a day after contracting COVID about 18 weeks ago but been completely symptom free for months now so keen to reduce the dosage
Asthma nurse is supportive and I’ve already reduced down to 700mg
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Dance103
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Whilst I’m categorised as being asthmatic I’ve not had any issues or problems or needed medication for about 15 years. However everything really flared up after having the coronavirus
In that case, if you're not already, it might be useful to measure your peak flow twice a day to see if there is any dipping happening as you reduce the beclometasone. It's not the only thing to look for of course, and in some people peak flow isn't necessarily helpful, but it's something to track maybe?
I hope that the gradual reduction goes smoothly for you and that you can get back to your control.
Following with interest as I'm in the same position. I had Covid19 or similar 18 weeks ago when there was no testing, was started on Beclomethasone 800mg twice a day in April, and was told by my GP that I could stop any time without weaning. When I tried to miss one morning's dose, I knew all about it by the evening!
I haven't managed to see anyone though, so I don't have an asthma nurse to get advice from.
How many puffs are you on? Can you reduce them rather than cut them out? You might have done that bit anyway of course. If not, I'd try that and try say 1 puff am 1 puff pm (if you were on 2am 2pm before). If you've done that bit and cutting further isn't working, or you can't cut without cutting out, I'd try and see your GP. Say cold turkey didn't work and what you've tried/the effects. It may be you do need some of it still but if on a lower amount of your current one, they could maybe try a lower dose inhaler.
Yes, I live in hope of being allowed to actually see someone instead of just phone calls. They’re gradually opening up, so hopefully it won’t be too long now.
I’ve been keeping a peak flow diary and it’s consistently lower by about 40-60 in the mornings than evenings, even though my chest feels tighter as the day progresses. Is that typical?
They should be able to have such discussions with you over the phone, although I know sometimes it's easier in person. I do wonder if they'll only see people where necessary and stick to the phone otherwise - but I suppose every surgery will find a different way!
It's difficult to say regarding peak flow - what is your best/what was it before starting to wean? However variation between morning and evening is common.
Not including 111 calls, I’ve had 12 phone consultations with 7 different GPs since April. No video call, no physical exam. I get it, they haven’t been able to. But I can’t help feeling that a physical exam could have cut out a lot of the meds experiments.
My peak flow best is 460, worst is 360. Mornings are now about 390-400, evenings 440-450 before Qvar. When I missed the morning dose the evening reading was 390.
It's quite possible it wouldn't have stopped the meds roulette as, if it is post-covid issues or they suspect that, then they're at a bit of a loss anyway. But you're right that it's really hard not being able to be physically seen - and the calls you've had have been by so many GPs too. I hope you can be seen in person soon even if it just helps you to know they're not missing anything.
Peak flow wise, your current worst of 390 is still 85% of what would be your green zone, meaning everything is ok. Some people use 80% or more as green zone (which would be about 370 for you) but others use 70 or 75% as the line between green and yellow. That will hopefully be reassuring to you although you probably know that pf isn't the only factor and whether you're symptomatic at that level is another issue.
Yes, I'm definitely not in the danger range, only uncomfortable.
But what is the correlation between PF and tight chest? Mine is the wrong way round. My PF is lowest in the mornings when I'm feeling best, and higher in the afternoons and evenings when my chest feels tighter. Could I just be one of those people for whom PF is not an indicator, or does that mean that this isn't asthma at all?
Pf being lower in the mornings is more common (than in the evenings). I don't know if this is true but it seems to me that makes sense as by the evening I've had a day of meds which would increase pf. But that could be complete rubbish!
It may be that the tight chest isn't asthma related but maybe linked to anxiety (even in a working out what's going on way, not necessarily a big "attack") or to a breathing pattern issue which would be quite common after a nasty virus or other infection and weeks of having breathing issues.
That makes sense. My uncle was diagnosed with asthma after a virus years ago, and he said that his pre-treatment PF chart showed a "saw-toothed" pattern (low in the mornings, higher in the evenings) which he was told was a typical asthma pattern. But he felt tighter at night and when he woke up and better later, and I'm the other way round.
It could be a breathing pattern issue. I've sung all my life, and am used to diaphragm breathing. But with the virus I couldn't do that, so for 4 weeks I had to breathe with my upper chest. My broncheal areas have become very sore, possibly from the reflux as well as extra effort, and I've been trying consciously to make sure I breathe with my diaphragm again, but there simply isn't as much space in my lower lungs as there used to be. Maybe I need some physio advice? This is why I need to see someone. Ugh.
It's all useful post-illness stuff for others to read though.
At least when you are allowed to see someone you'll have a good grasp of how you feel, how things have changed (both comparing pre this to now, and the differences since things have been rubbish) and where you feel the instinct might be.
This is good for breathing techniques. It was recommended to me by a chest physio - you may well know some of it anyway or at least it might be familiar with the breathing you do anyway. It's free to sign up and remembers where you've got to!
Last year I had a bad flu and ended up on Medrol due to asthma exacerbation. Even with a very slow weaning off, I had horrible symptoms, headaches, sweats, nausea, I would truly advice a very slow reduction of any meds with cortisone. I am constantly on Symbicort, I took at that time 2pufs twice a day and I could barely sleep through the night. Slow!
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