Another question from me...It's been suggested to me that I could add a Flixotide 250 to my medications, which is currently Symbicort 200 (MART but I still use a lot of Salamol during flare-ups) and Montelukast.
To me, this seems weird (and would that be a High Steroid Dose?) so I'm wondering if anyone has any experience of having more than one preventer inhaler on the go at once?
Thanks in advance!
Sounds bonkers. I only know about Flixotide as was swapped onto it coz Clenil & Qvar actually gave me asthma. Worked brilliantly for me. 👏 Occ. have to use Ventolin, afraid allergic to my darling cat so have to spend less time with her next to me. ☹️There has to be a sensible solution for you, suggest you chase it? 🤞
Hi porthos06
I use Qvar alongside Relvar 182 to bump up my steroids instead of going strait to pred… I find it helps and although means I take a really high dose of steroid sometimes it’s not as bad as pred!!
Hope that helps…😊👍
Thanks! I've never come across Qvar - is it a completely different medicine to Relvar?
Hi
Qvar is a steroid only inhaler - beclometasone with (supposedly) ultra fine particles. So it’s not a combination but just adds in on top of the steroid fluticasone from my Relvar. So two steroids really…
Hope that helps!
😊👍
I take Fostair and Cicloneside inhalers and I have nebulised Pulmicort. It does help to stop the massive amounts of Pred I was taking. I would see how you get on, you can always stop it.
I'm on both Fostair 200/6 and Spiriva Respimat inhalers as well.as Ipratroprium nebules if I need them ☺️. If your Symbicort isn't meeting your needs, then they will step up your treatment to see if it helps. Trial it and see how you go. Yes, I'm on high dose inhalers and still need short courses of pred but I couldn't do without them.
I was on Symbicort 200/6 and one consultant decided that I should try the MART regime, after a heated debate I agreed to try it for 6 months, so I used Symbicort as my rescue inhaler instead of Ventolin as well as the preventer. I could take up to 1000mcg pd, so 2 extra doses. My asthma did not do well, but I persevered. At my next consultant appointment, it was agreed that I was not suitable for the MART regime and was reverted to 800mcg of Symbicort plus Ventolin as the rescue inhaler.
Fortunately, I was signed off by the hospital team which allowed my GP asthma nurse to change my meds. At first I took Fostair 100/6 (400mcg in total a day), plus Becotide 200 twice daily, so a total of 800mcg pd of inhaled steroids. That didn't have the desired impact so I went onto Fostair 200/6, a total of 800mcg pd. That did the trick.
So increasing the inhaled steroids didn't work for me, but a change in the combination inhaler from Symbicort to Fostair worked very well. Sometimes it takes trial & error and a bit of time, to establish the best possible meds that suit you as an individual.
In addition to changing combination inhalers, your doctor/asthma nurse could consider prescribing a LAMA inhaler (long acting muscarinic antagonist). Spiriva is the usual choice. It works in a different way to combination inhalers, but helps open up the airways for about 12 hours, so taken twice a day and is taken in addition to your combination inhaler (Symbicort).
Whatever changes are made, if you don't feel any benefit after 8 weeks,or if your symptoms worsen, then go back to the GP or asthma nurse so that they can consider another course of treatment.
Thanks 🙂One of my main problems with the MART scheme is that you're so limited with how many doses you can take in a day. As soon as my asthma starts playing up, I increase my dose of Symbicort (as per instructions!) but that means I'm needing to supplement it as soon as it continues to get worse, which it invariably does until I get oral steroids 😕
I think I was on Fostair very briefly a couple of years ago, but it made me shake so much I had to stop!
Just coming out the other side of a flare-up, it feels like changes need to be made - I will just have to cross my fingers that it's something which will work for me!
For some people it works to add in extra inhaled steroids, but others may benefit from add-ons that aren't steroid based (like montelukast, or tiotropium (Spiriva, as mentioned by Poobah). I'm not sure going all the way up on inhaled steroids before trying other add-ons is always the best idea, but it may work for some people.
To be honest you should really be under a consultant at this point. I seem to remember you were referred and they immediately discharged you saying you were fine, but you're still struggling? I would ask your GP to refer you back again - maybe not to the same hospital though, if there are any other options. Or if it has to be the same one, the GP should emphasise that they discharged you for being stable when you clearly *aren't* (to be honest the GP could say that anyway). Was it the GP suggesting the extra steroid inhaler?
I can't remember whether you've talked to the asthma nurses here, but it may be worth giving them a call to discuss this: 0300 2225800 or WhatsApp 07378 606 728 Monday-Friday 0915-5pm
As an FYI, I'm on 4 different preventers: Fostair, montelukast, Spiriva, and theophylline (5 really, if you count Fostair as two since it has both steroid and long-acting beta agonist (LABA) in it). All mine are different drug classes from each other though, and only one is steroid, which works for me especially because I'm not that responsive to steroids, including pred.
These posts may help to get an idea of what's out there: healthunlocked.com/asthmauk...
healthunlocked.com/asthmauk...
Thanks 😊 Yes, I'm a bit traumatised by my consultant appointment 😬 Unfortunately where I live basically precludes me from having any options in terms of medical care at hospital level, so I would end up back with the same consultant.
My GP suggested Theophylline last year a couple of times during flare-ups but the side-effects terrify me.
One of my biggest problems is that I can go months without having any asthma symptoms at all because my main trigger is colds etc... But every time I get ill now, it sets off my asthma, and I'm finding the subsequent flare-ups are worse each time...
I will try calling the asthma nurses on the helpline - they have always been super when I've called in the past.
Ugh I get you with the consultant appointment! Is there literally one consultant though? If you have to go back to that clinic, you could see if you can ask to see another one in the clinic (may not worth, may be worth a go).
A friend in a similar situation (she has to see the same guy she complained about when she's admitted) has found that talking to PALS is surprisingly helpful - he knows it was her, but he behaves himself a lot better now he's been essentially told off for it. I wonder if it's worth you contacting PALS and saying what happened? It is a fairly 'objective' situation in that he said you were ok and didn't need to be there, and you clearly are not ok and should be under a consultant. I know other people who've had success with them too. I only haven't done it myself because they successfully made me feel like it was all me anyway, I was just imagining my illness, and that no one would believe me if I told them what they said to me in appointments (which has included telling me that no one else knows what I'm really like, and about a millimetre away from telling me not to go to A&E for asthma ever).
I entirely get the scariness with theophylline, and felt the same, but I've been on it nearly 10 years with no problems, except when I briefly had to switch brands because of supply problems. That brand, Nuelin, made me feel sick, but Uniphyllin at max dose doesn't, even though both are theophylline (it's one of a few drugs that has to be prescribed by brand). The way my brain works, I decided I didn't care if it was dangerous, I just didn't want to feel sick!
It is very much what I call a 'Marmite' drug though - some people absolutely love it and get no side effects at all, some people have a lot of problems. You do get monitoring though, you go up slowly, and sometimes people can find it effective at slightly below the official 'threshold' for it to be effective. I specifically asked about side effects in an appointment because my consultant dislikes it on principle (he's very rigid). He and the registrar admitted that unlike pred, theophylline basically causes side effects or it doesn't - bad if it does, but you don't have to worry about 10 years' time.
How are you with caffeine? It's not at all a formal test here, but caffeine is chemically related to theophylline (and also to theobromine in cocoa). If you get jittery and your heart races after half a cup of white coffee, then you might possibly not do too well on theophylline.
Actually, has anyone mentioned biologics to you? Or done any tests, like for your IgE or eosinophil levels?
I do think there might only be one consultant – and the hospital is around 120 miles away so there’s not even flexibility with that! To be honest, I have put in a complaint about the consultant to the health board, having come to the realisation that there’s no way I should have been discharged and then been sent by my GP to A&E at the end of the week for my asthma…
I haven’t contacted PALS though, although full credit to your friend for keeping going to see the same consultant she complained about! That’s a bridge I’m not looking forward to crossing if/when it happens!
Since the appointment, I’ve had moments where I feel like just giving up on the asthma meds because no one ever seems to believe me how much it ruins my quality of life during a flare-up. I’ve mentioned in a previous post, but I get to the point where I’m questioning whether I even have asthma…
That’s really interesting about the caffeine - I’m not too bad with it, so maybe Theophylline would be fine. But it’s also the regular blood tests which terrify me because I have a completely debilitating needle phobia… 😱
The consultant mentioned biologics but only as a “these are for people with much worse asthma than you” sort of way. I turned down my gp’s suggestion of oral steroids twice last year so I wouldn’t have had more than one course within six months (I think this was why my asthma was so out of control for quite a lot of last year, so it may not have been a good decision on my part!) but have had two four week courses (one week doesn’t seem enough once I’m into a really bad flare-up) in the past year. A lot of the criteria seems based on oral steroid courses and I have no idea whether a four week course counts as one or two.
As far as I’m aware, I’ve never had IgE or eosinophil levels tested – no idea what the bloods they took at A&E were for as they just come in, do the job and leave 😂
Ahh, guessing rural Scotland or Wales? That does narrow it down (though if you have to travel 120 miles anyway, is there an option an equal distance the other way? A specialist hospital you could make it to for a second opinion if eg you have friends nearby?)
My friend is NOT happy having to see that consultant but she doesn't get a choice when she's admitted sadly and it's a small hospital. The other one used to be very supportive but has gone odd.
I have to admit I don't have blood tests for theophylline levels that often - but I probably should!
I totally get what you mean with the quality of life and questioning yourself - I still do it! I don't think I would trust this cons to know about biologics. If it's a small hospital they probably don't see many severe asthmatics and aren't used to us. You're right that the criteria are mostly based on oral steroid use - either continuous (not sure how long that needs to be) or short courses. Or it can be hospital admissions/A&E trips.
I find it really frustrating that severity is still assessed by oral steroid use. They don't work for me, I'm not sure they ever did so no flare I have counts unless I have a hospital admission. Which the consultant doesn't count unless I have the markers he sees as asthma (he's totally not in line with actual evidence that you can't have asthma attacks without them but he doesn't care, he's the clinical lead of a severe asthma clinic and what he says goes).
A&E will check for eosinophils most likely as part of a complete blood count which is pretty standard - so you may have those numbers if you ask for them. Bear in mind that the eosinophil range where you qualify for asthma biologics is technically within normal range for the lab, so won't be flagged. Probably they won't test for IgE though.
Hey lovely,
I am on Fostair 200/6 2 puffs twice daily - preventer, Fostair 100/6 up to 6 times as reliever, Spiriva Respimat and Montelukast. Montelukast took my PEF from 450 to 570, literally changed my life. I am a severe asthmatic though and was ventilated for 10 days due to resp failure back in 2017, from an asthma attack. On the more extreme end of the scale, but yes, I too have a heavy regime xx
Oh, that sounds like it was a really scary time for you! I hope things are better now! No one has ever discussed "severe asthma" with me since I was a child (when it was really discussed more with my parents) as I had a similar experience when I was very young.
This is why I have such a fascination with attempting to understand my condition, I think.
Inhalers
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