The change was following a recent consultant appointment. Basically at my previous appointment the docs said they are reluctant to increase meds as they think that I not only have asthma but something else hiding behind it. Since then I have had an exercise test. My breathing and heart was fine during/0, 5, 10 mins after. Then 15 mins after my breathing dropped by 13% which he said was significant and a clear sign of asthma. After gaining this new evidence and analysing everything I have already told him (i forgot preventor once and was very ill next day, allergies to cats/dust, pf drops in winter and pf drops with bad colds).
He described me as being on the edge of a cliff - this means that the slightest thing can tip me off edge (in summer I had a terrible 3 week stint and don't know why) and then it is really hard for me to climb back up. He has doubled me dose going from 200/6 symbicort to 400 pulmicort. Also have oxis as extra preventor and reliever. still going to carry salb just in case i am really bad, i know i would be nervous without it until I gain some confidence in oxis.
he also said that this combination of meds should be better for my heart - i get a lot of palps that keep me up and i am assuming this is due to meds. If heart doesnt improve may look into heart defects more.
only started taking last night and I did not sleep well but that may be due to the change in weather?
I'm glad that your cons has been able to give you some answers.
I had Pulmicort and Oxis when I was younger but can't really remember changing so can't be much help I'm afraid! It is interesting about how using the seperate inhalers can be better for your heart - is this to do with not taking Ventolin? I find that Ventolin makes my heart go wild and although Bricanyl, Symbicort etc seems to increase my heart rate, they are so much better than Ventolin. My asthma team are always worried about my pulse but my cardiac cons doesn't think it is a problem (I do have a heart condition though). Even though I don't normally take Ventolin, I am still advised to carry one and a spacer as a turbohaler can be difficult to take during a bad attack (in which case being tachy is the least of my worries!) Perhaps this is something to discuss with docs if you are still worried.
After a good few weeks, my asthma has started to play up the last few days. It is cold here but the weather has been changeable and the bonfire/firework smoke hasn't helped!
hi Kayla,
I think its more the switch off symbicort that will help. I am doubling my meds and so far heart has been fine. But when I had to take that much symbicort during a brief period when I was very ill my heart was going crazy, felt quite painful actually and couldnt sleep because of it. and putting on oxis as it is a longer lasting inhaler which i can use as preventor too(alongside pulmicort). so overall am on more steriod and less beta-antagonists overall.
i have also been carrying my salb around too as i have confidence in it as it has helped during many attacks. not had one since med change (woo)
my asthma is playing up too but im putting it down to the sudden med change. also cold weather is my enemy so cant expect to pick up much now til next year.
hope you are well.
I have been on Pulmicort 400 and Oxis 12 for a long time after trying most other combinations of steroid and LABA's and find this is the best combination for me, so I hope they are good for you, but as everyones asthma is so individual you may find they are not for you, but don't give up as I'm sure there are others you can try.
I don't use Oxis as a reliever though as with it being a turbohler I don't have enough puff to use if I'm wheezy/sob so still have ventolin inhaler and nebs.
Fingers crossed for you x
fb, do you remember how you were after starting on the two inhalers? im having a rough week but this could possibly be due to the weather change. also i understand that new inhalers can take time to kick in. i havent had the worst week ever and have still been in uni but today i had to leave as i felt very rough, inhaler helped but i was so tired after that i had to go home and sleep. i havent been like this in a few months and it is annoying to be back here.
however considering this is the highest dose ive ever been on and considering anything close has given me terrible heart palps., my heart has been rather happy this week. littlle bother and not been racing like crazy, yay
oxis was good as a reliever today but it was a very tight chest not a full on attack so not sure how i'd be in attack. will ask nurse about this next week and see if i should carry salbutamol just in case.
thank you for your reply
Hi, just thought I'd jump in here heheh.
I was put on pulmicort and oxis after my heart was giving me trouble on symbicort 400. Pulmicort and oxis were also the strongest inhalers I had ever been on and I found them absolutely fantastic! The freedom of being able to change the oxis around without affecting the pulmicort really helped me find a combination that settled both my heart and my breathing. However, I always carried a blue reliever inhaler around as well (terbutaline for me as it stopped my shakes). One thing I would say, though, is that although these inhalers made me feel lots better, the oxis gave me very shaky hands and my breathing was not perfect on them. I was also at uni when put on these and they really helped me manage my course for as long as possible.
Like you, my consultant thinks I have another underlying condition that is masking/being masked by asthma. I have also had an exercise test but, unlike you, my breathing was totally normal but my heart rate went through the roof! As a result, I am now off all inhalers while they do further tests to work out what is going on.
With regards to your situation, it did take me about three weeks of being on pulmicort and oxis to really feel the effects of them and start getting better. I also think you're right to remember the time of year, especially if you usually struggle more in cold weather. I'd definitely bring up getting a reliever aside from oxis at your next appointment as I felt much safer having terbutaline with me, too, but all in all, as long as you're not severely ill I'd say maybe give it a couple more weeks on the pulmicort and oxis to give them a chance to work? As I said, it took three weeks for me to really feel an effect from them. However, if you're struggling then don't hesitate to go to a GP! Hehe.
I really hope things get better for you soon!
thanks for your reply music geek.
if you were on such high dose of inhalers how are you coping now you are off them? for me if i even try and lower it has terrible effects.
what do you mean by ""the freedom of changing oxis round""?
i still have salbutamol precribed from other times so should be OK for now, have been carrying it around, just want nurses opinion too.
I am going to persist with them, im just thrilled my heart is doing OK
hope you are well too
Hi unigirl,
I'm not coping brilliantly off the inhalers haha, but my breathing has been very bad for a year now. I am currently living at home with my parents so I don't move around too much or go anywhere, so I manage my symptoms at home ok without the meds, though I would much rather be on them! My consultants are testing me for various things and once they are satisfied that I definitely have asthma then they should put me back on the inhalers.
Sorry, I should have been clearer hehe. I used to take 2 puffs twice a day of Pulmicort 400, and with the Oxis I would take 1-2 puffs twice a day depending how I felt. This meant I could change around my dosage of Oxis - for when I was feeling bad I would take 2 puffs twice a day, when a bit better 1 puff or not at all etc. Of course that was advised by my doctor, you may not be the same, but for me it meant I could be much more flexible with the dosage than I was when on Symbicort 400. Hope that makes sense!
Glad to hear you have your salbutamol as well, good idea to talk it through with your nurse hehe, and I'm very glad your heart is doing well! I hope these inhalers keep working well for you, I know they were brilliant for me.
To be honest I don't remember how I was when I went on pulmicort as I have been on it such a long time-since early childhood. I used to have it nebulised until I could cope with a turbohaler and am on 400, 4 puffs bd. I have tried all the LABAs along side it as they came on the market and eventually was best on oxis 12 , 2 puffs bd.
As I have always had difficult asthma, then diagnosed with brittle at around 19/20 years my consultant was always keen to try new drugs as they came out so was put on flixotide when it was new-last 4 days at home before admission!! So, back to pulmicort and the story has always been the same with what ever different drug I tried!! Although did last a good few months, maybe a year on serevent with the pulmicort until oxis came out.
As musicgeek says most steroid inhalers need 3-4 weeks before you can see their full potential as to whether they suit you, so if you can persevere, do.
What were you on before symbicort? Do you take anymore meds along side the inhalers?
Fingers crossed for you x
oh know i hope you get back on the inhalers soon musicgeek if that is what you need.
well with the oxis i take one puff morning and night (only been a week) and then pulmicort 2 morning, 2 night. then oxis is used for relief. been good this week so far as relief. i seem to be having one good day one bad day. for ex yesterday i played netball for half hour and felt fine. today my lungs arent very happy and im still tired despite 11 and half hours sleep.
fb, i was on qvar 50 at first (this didnt agree with me) then qvar 100 was bit better, then seretide 250 and then a combination of seretide and qvar. as i only developed asthma when i was 17 at first i didnt need preventor as it was only just developing. it went worse until i was about 19 and has now leveled out (am 21 now). symbicort (200/6) was definitely best so far but i still had terrible times whilst on it.
oh dear a whole 3-4 weeks is a long time to wait, lol. will have to calm down and rest more i think.
i take montelukast and anithistamine (for cat and dust alllergies) as well.
Wow UniGirl, you do sound very similar to me! I was 14 when I was diagnosed and wasn't on preventers until I was 15. I was on Qvar at first but when I was 16 was put on symbicort which worked really well until last year, which is when I was put on Pulmicort and Oxis. I know 3-4 weeks is a long time and it's extremely frustrating when you just want to be better and it doesn't feel like it's working! *hugs* hang on in there! lots of resting is always a good plan and be nice to yourself. If you're finding that being active one day keeps you tired for the next, I'd advise as much rest as possible haha, though I know that could be very frustrating. I hope the inhalers start to work for you soon!
Musicgeek, the asthma nurse at hospital seems to think it is a weird combination but she was happy that it seemed to suit me
Also I am feeling better already thank you starting to kick in. Only thing is I dance for an hour every Tuesday only this week I only managed half an hour before I packed it in. Cons thinks I may be over breathing but usually I am fine... wants me to try and do PF if this happens again but will be annoying to do in the middle of a class (although its a casual class). i'm still keeping everything calm in general, not doing too much.
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