I’ve only been diagnosed with asthma recently and as I wasn’t using a preventer previously my symptoms were out of control and I was prescribed prednisolone. Initially this was only for 5 days but I struggled to come off them and so was put on them for a longer period. After speaking to a consultant (only on the phone due to Covid) I was put on symbicort 200/6 two puffs twice a day and told I’d be able to come off the steroids.
I was taking 6 tablets a day and reduced by one a week on a Friday. By Tuesday the following week I would experience a flare up and have to use my reliever for about 3 days but this usually calmed down and I continued to reduce weekly.
One and a half weeks ago (fri 18th) I reduced from one tablet (5mg) to zero tablets. As per the pattern I started flaring up the following Tuesday. However it’s lasted much longer this time and I’ve had to use my blue inhaler every day for the last week (initially as much as 20 puffs in 24hrs). It has gradually improved but I’m starting to worry that it won’t stop. Has anyone else had similar problems coming off prednisolone? I did speak to a GP on Saturday who just told me to take 3 puffs of symbicort at night (which doesn’t seem to make a difference). Any advice welcomed
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Plantobsessed
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Steroid inhalers like Symbicort can take 8 weeks to kick in properly/be properly effective so it may be that more time is needed and that it kicking in and reducing steroids was just too much all at once. It would be unusual to simply have problems reducing after a short initial course. So maybe just keep an eye on your ventolin use and hopefully it will decrease in time?
Are you monitoring your peak flow? Has this improved since starting the symbicort?
Also, as an aside, you're lucky to have been put under a consultant so soon after diagnosis - some people have to wait ages and that's usually after having all sorts of GP input!
Thanks that’s good to know. I have been doing peak flow everyday and it’s improved since being on symbicort which makes me think it is working...so not sure why I’m reacting so poorly.
Also yes I know I am lucky, I was referred by my GP in September and got an appointment for Nov. Although I’m not sure how useful it was as we had a 10 min phone conversation where he said ‘sounds like asthma’...now my GPs are not convinced by the diagnosis as he didn’t examine me!
To be honest at the moment it's probably better to treat as asthma and backtrack if they need to (but things improving with the medication is one indicator that it is). Yes normally they can do spirometry but, in asthma, it's variable according to how someone is on the day - a normal result doesn't necessarily mean not asthma. So symptoms, talking to you and stuff like peak flow and response to meds will be just as helpful.
It's promising things have improved - maybe you'll need add-on treatment alongside the symbicort but some progress is hopeful. It might be worth doing your peak flow when symptomatic before using your blue inhaler, then again 15 mins after using it. Not every time but now and then. That should show whether the ventolin is helping at those times. It's possible that part of the symptoms are your body protesting having reduced steroids but not actually the asthma. It may also be that you can't manage without the steroids at the moment.
Are you able to speak to your GP (as opposed to a random one)? Or is there an asthma nurse at your surgery you could speak to? The Asthma UK nurses are very good but think they're off for Christmas right now. A nurse or good GP might have some suggestions about adding in medications or something?
Yes it certainly does seem like asthma judging from my circumstances and response to asthma medication. The problem is that I am part of an online GP surgery so I end up seeing different GPs every time. They do have physical clinics which I’ve been to semi-regularly. I think I will try and make an appointment with them ASAP. I like the idea of speaking to the Asthma UK nurses too, will try that if things still don’t improve.
Having people to talk to here certainly eases my mind a bit in the mean time so thank you. Hopefully my body will start to adjust to life without steroids soon!
From someone whose body does not like steroid drops....welcome! 😅
Asthma UK's helpline is 0300 2225800 Mon-Fri, 9-5. But they're closed until Mon 4th I think. But they'll definitely be able to go through with you what sounds normal and maybe what to ask a GP about.
In case it helps, I know some people end up on a short course of steroids when changing inhalers due to the delay in the new one becoming effective (which is ideally why a flare should be sorted first/stabilised before changing to a new inhaler). So it could be that, your asthma not yet being controlled because it's all new, them reducing the steroids was too soon. But as always, if meds could hurry up and work quicker it'd be great!
I would add, remember to have a pen & paper handy for the details. The nurse may be using terminology you've never heard before, which may sound a bit daunting, but just ask questions. It may sound like I'm stating the obvious but I'm forever making calls to folk and then realising I can't take notes. Good luck.
Hi Plantobsessed - sorry to hear about your struggle. I have a lot of experience with Symbicort for over 10 years. It has helped me stay on track, though I still do have bouts that require prednisone (usually after a cold has gone into my chest). Sometimes I will be great and exercise strongly and then other times I experience what you are going through. Stick with it though, because it can take time for your asthma to get in check. If you are on the oral steroids for longer than a few weeks, taper down slowly. One Important thing I want to note is that you said you were advised to take Symbicort 3puffs once a day. I'm very surprised to hear that as that is NOT how its intended for use (see package insert). Always 2 puffs twice a day (separated by 12 hours). Be careful. Adverse events can be more likely if not used properly. Challenge your GP on this! Good luck.
I read it as she was asked to increase the night dose to 3 puffs, rather than only at night. But I could be wrong of course.
However, it's not always only 2 puffs, my consultant told me to take 3 puffs twice a day, and I used to be on 2 twice a day but with extras between. Might depend on which Symbicort strength of course.
But once a day would definitely be a dosing I've never heard before!
Well, as someone who has worked in pharmaceutical R&D for >30 years, I like to follow the dosing recommendations based upon clinical trial and real world experience and that points to not exceeding 2 puffs twice a day,,,probably not only because it can increase chance for adverse effects but I also don’t think it was shown to provide greater efficacy (at least they didn’t think the benefit/risk warranted it). So just lookin out for my fellow asthmatics out there....
However symbicort 200 is also licensed for MART regime. That means you can have more than 4 puffs a day. Some people are on 400 2BD, but you can have up to 8 puffs of symbicort 200. The absorption limit for budesonide is 1600 a day.
Plantobsessed doc wouldn’t have suggested increasing the dose if they didn’t think the benefits would outweigh the risks.
For some people the MART regime really works, however it doesn’t for everyone.
Hi Ted, thanks for your reply and encouragement. Just to bring some clarity- I do still take two puffs in the morning and was advised to take 3 puffs at night as well until my flare ups calm down. The doctor reasoned that 400 strength was available and so it’s not dangerous as Emma has pointed out. Hopefully I won’t need the extra puff long term and can go back to the 4 puffs a day.
Plantobsessed and Emma - thanks for your clarifications. First thing is definitely follow GP advice first and foremost. I should have been more careful. I am in the US and referring to Symbicort registered as low (80/4.5) and high (160/4.5) budesonide/formoterol. The package insert etc are different than for the 200/6 that you referenced. The issue here would be if you are on the high, you don't want to over-medicate, and if you are on the low, the increase in the formoterol becomes more of the potential problem. Next time I will be more specific. Anyway, wishing you good luck with it.
I have been on symbicort for a little while now and find it effective in controlling my asthma. I only need steroids if I have a chest infection in which case my asthma will be all over the place but it does settle back down. I find I may also need my blue inhaler during this time. I haven’t had any problems for a year now (touch wood) and that is from sticking to taking the symbicort. Hope it helps you too.
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