Really Confused!

I've had Asthma since I was 7, which has got much worse over the last few years (now 39), and is now classed as ""Difficult Asthma"". I'm taking medication at Step 4, with frequent courses of oral pred to control exacerbations, (all prescribed by a Respiratory Consultant). I've just had a severe exacerbation which landed me in A&E three times in week, (low O2 sats, sky high resp and heart rate), which ended up with ABG's etc and a trip into resus. I was sent home on all three occasions, even though I had already been on oral pred for 5 days, which was not having any effect! Eventually had my steroids increased form the ""standard dose"" of 30mg, which did calm things down. My Consultant then decided to do a mannitol challenge, which was done five weeks after the exacerbation whilst I was still taking oral steroids and was completely symptom free, so not surprisingly it was negative. I also had normal spiro at the same time. I'm now being told that asthma was not the cause of my symptoms, despite A&E being certain that they were due to severe asthma. I'm now really confused as to why I am still taking all this medication for something the consultant has now decided I haven't got! Now back to the usual coughing, wheezing and being breathless because I'm off the pred. Has anybody else come up against this?

6 Replies

  • So, first thing to note is that A&E can't really diagnose anything, if they see wheezing, low sats. sob and tachy, they will likely treat for asthma (even more so in someone with pmh of severe asthma) and so the fact that they have said it is asthma isn't necessarily a definitive diagnosis. Respiratory consultants do a lot more training in specific resp conditions, and so are in a better position to diagnose you. That being said, your consultant did not (presumably) actually see you during the episodes of difficulty breathing, and so it will limit his potential understanding. It is a very tricky balancing act!!

    I am very surprised that you were discharged home from resus following a severe attack (even more so if you were already on oral steroids!) what treatment did you receive in A&E? Were you given an A&E discharge letter? Did they give you any advice? I assume the increase dose was to 40mg, was this done on the third visit? Do you know what the abgs showed? Have you got home nebs? Have you had lots of A&E attendances before these three? Sorry - lots of questions, just helps build up an idea as a fellow asthmatic as to what things are like with you! Hehehe!

    Mannitol challenge and spirometery are usually reasonable predictors of asthma, but they are not completely conclusive. It might make sense to perform a reversibility spirometery whilst you are symptomatic. Do you monitor peak flows? These are obviously less effective than spiro, but can show any variability which can help your consultant to work out what is going on! Clearly, you have some kind of breathing problems, and a lot lf the 'basics' for asthma treatment (salb, steroids, LABAs) are used for the majority of respiratory conditions, which might explain why you are continuing to take a lot of the treatments. It may be the case that if your consultant believes asthma is not the problem then you would be able to step down some more specific treatments (montelukast, theophylinnes, xolair etc) and see what symptoms remain and make a new diagnosis based on that! Did the consultant make any suggestions as to what might have been the cause of your difficulties?

    Have you been back to your GP? If you are more symptomatic having come off the pred, it might be that GP will either represcribe some, or contact your consultant to allow them to consider whether steroid treatment is still appropriate in your management!

    Hope that's a bit helpful! It's very difficult to know what you do/don't already know, so apologies if any of it sounds patronising, or is unclear!! Hope you're feeling a load better soon! This hot weather is deadly to lots of asthmatics!!

  • The consultant saw me 10 days later, and gave me another 4 weeks of pred, which worked, then saw me again five weeks later after the Mannitol Challenge, which she was adamant was done while I was symptomatic, even though I explained several times that this wasn't the case, hence the your symptoms were not caused by asthma. This was followed up with you shouldn't be more than 30 mins from A&E in case you have another attack! I've managed to see the respiratory nurse since, who has got hold of my A&E notes, and is happy that my symptoms were due to asthma, (because of the ABG results etc), she thinks I just need to have a higher dose of steroids in my rescue pack. A&E only increased my steroid dose on the third visit, every other time it was a case of enough nebulised salbutamol and ipatropium to get my PEF high enough to meet their discharge criteria, but nobody looking for the underlying problem when I was already taking oral pred. I've always avoided going to A&E in the past even if I've been really unwell because I always convince myself I'm not that bad. I've been told numerous times by my GP and the consultant that I should go to A&E, but now I feel like I've done the wrong thing by going even though I felt I had no option with a PEF below 30%. Now even more confused by the mixed messages, but not seeing the consultant again until November because of the negative Mannitol Challenge. My IGe is very high, and I've got a severe allergy to aspergillus, tree pollen etc.

  • Is your concern that the consultant thinks the issue is anxiety/panic rather than a different respiratory condition? If so i guess I can see why that would be confusing!

    Even if done while asymptomatic the mannitol challenge wuld normally cause a reaction (and so still show a positive result) because the point of the mannitol challenge is that it is supposed to trigger a certain degree of bronchoconstriction and therefore even if you have no symptoms at the start you would expect an asthmatic to be symptomatic by the end. The reaction would be slightly supressed by high doses of pred (although again - most people would still show sufficient reaction to get a positive result on pred) and so I would be surprised to see a consultant ignore a diagnosis of asthma based on a mannitol challenge done ON steroids!

    I guess given that you only required nebulisers, it is a little more understanding that they discharged you - but even then, i'm a little surprised that they did it after more thanone A&E attandance! The normal protocol for A&E discharge would suggest that a recent A&E attendance would be sufficient to ensure that you'd be better at the very least being monitored overnight on MAU! If you have to attend A&E again i'd make sure they have a clear plan for what is going to prevent you continuing to experience difficulties.

    40mg of pred is not an unusual dose (especially for an adult) and so it would not be unreasonable for your usual 'emergency' dose of pred to be 40mg. Personally my'rescue' dose is whatever takes me to 50mg for that day, and then if i'm not admitted i go to 40mg for three days and during that time contact GP or consultant to make a plan to get down to 10mg as fast as possible! If i'm admitted they tend to be especially cruel and make me do a few days of 60mg :-( or IV steroids!

    I'd see your GP, and if they are concerned they can get you to see the consultant earlier, and can at the very least make a plan to keep you feeling well until november!! Did you come off the steroids after over a month all in one go? or did you do a taper? IF it isnt an asthma issue then one potential reason for you feeling really dreadful is steroid withdrawal!

    What is your current medication??

  • The steroid course was tapered off, but I seem to spend at least half the year taking pred, the last time was in Feb after an encounter with mold in a damp holiday cottage!

    Currently taking: Salbutamol, Seretide (500mcg b.d), fluticasone (500mcg b.d) so 2000mcg a day, spiriva, monteleukast, theophylline and Azithromycin, the consultant wanted to start Xolair, but my IGE is much too high. I'm usually reasonably well controlled on this, and I'm wondering if the exacerbation was caused by the huge amounts of beech pollen about at the time. I'm usually pretty confident managing my asthma, and I've never been told that I shouldn't have used my rescue pack of pred, but I'm really doubting myself now and wondering if I'm imagining the symptoms.

  • I'm sure that if your consultant felt that you were imagining things then he would not have you on such a high level of treatment, and wouldn't even give you a rescue pack of pred to use! And remember, it wont do you any harm in the short term if you took a dose of pred, went to GP who then decided you didnt need it. Damage from pred comes from long term use, not short term. The consequences of not breathing are much more sudden. I am always told 'if in doubt, up your steroids'!

    You are on a very high dose of fluticasone, and that couples with the pred will mean your adrenal glands are likely to be suffering (I can no longer take any fluticasone as it is the most adrenally surpressing inhaled steroid, and I am trying to coax my adrenal glands into doing something more proactive than just sitting there ignoring my brain!!) It might be worth discussing a refferal to an endocrinologist to look into your adrenal function. Adrenal crisis can and will make you feel a very special kind of ill, and can also very temporarily make your lungs MUCH more twitchy. When i go into crisis I almost always have an asthma attack within 48hrs. If you have usually been much more controlled, and are having sudden short bursts of hyperresponsive airways, then it might be worth investigating your adrenal function. If it is the case that you are adrenally surpressed, then a low maintainece dose of pred (about 5mg) or the equivalent in hydrocortisone (20mg in three of four doses) will make a huge diference. Obviously it isnt the case with everyone, but for me an improtant part of my asthma management is controlling my steroid dose properly, if i am ever NBM or vomiting and havent had my injected dose of hydrocortisone then I feel utterly terrible, not only with the wheezing and breathlessness, but generally feel flu-ey, tired, hungover, sick and in pain!!

    Has your consultant got any other ideas as to what might be going on? Other than asthma? or did you get the impression he felt it was a panic or anxiety issue? I think unfortunately a lot of respiratory consultants imagine themselves as fully trained pyschiatrists and like to diagnose panic in anyone that is difficult to explain! My mum deals with it professionally all the time! SHe is a physio and was working with a patient who had a very atypical siezure, however they undeniably went fully rigid, fell to the floor, soiled themselves and drooled excessivly, whilst biting through their tongue. However, because immediately afterwards they were coherant the doctor who arrived immediately after the siezure said it was either an anxiety episode or a behavioural issue!!! Its mad! Mum just stood their and said ""i think you mean - i dont know what happened, rather than its an anxiety issue!!"" I eventaully agreed to be reffered to a [psychiatrist who fortuantely saw me the same day while i was an inpatient, and she then told them that mentally i was absolutely fine and whilst i obviously found attacks scary and stressful, if i didnt ashe would be more concerned that i didnt value my life, and undoubtedly the asthma triggers and fear, rather than anxiety triggering the asthma! it was a very helpful letter!!

    If you are so significantly affected by things such as pollen - do you take double dose montelukast? and do you take an antihistamine? those are things that are commonly helpful in very allergic asthmatics? Have they made sure your theophylinne levels are theraputic?? i spent ages with my consultant (ex) telling me that i was already on a higher than normal dose of uniphylline and so should be fine, when my new consultant saw me the first thing he did was increase my uniphylinne as it turns out i need a much higher dose than normal to get me into the correct theraputic range! He then went on to have an actual shouting match with my cardiologist which was very amusing for me and the juniour doctor wh were listening at the end of the corridor at them scream at each other - but thats another issue!!

    Another possible thing that it could be worth suggestion is looking into GERD type things. Reflux can be a significant component of some severe asthmatics, and oral steroids, theophylinne (and possibly azithromyocin - but dont quote me on that) can worsen reflux. Reflux can trigger immediate bronchoconstriction, as well as cause aspiration leading to serious lung infections. It can also occur with nothing other than respiratory syptoms in some people. Just giving you suggestions that are commonly overlooked and could be useful to discuss if you experience ongoing difficulties and your consultant is short on inspiration!!

    I take it the salbutamol is an inhaler? have you tried different inhaled steroids and LABAs??

  • Thanks for the info. I know the last time my Theophylline levels were checked, which was in January, they were sub-therapeutic, but nobody has checked them since or changed my theophylline dose. I'm fairly certain my adrenal function has never been checked despite multiple long courses of pred and high dose inhalers, and the symptoms you decribe sound like symptoms I've had in the past, so I'm going to persue that via my GP. Have also discovered via the repiratory nurse that I had very low potassium levels in A&E which should have been corrected because I was at risk of heart faliure, (glad I only found this out afterwards), and probably explains why I felt so lousy for weeks afterwards!!!! Have just been listed for surgery on my nose, due to persistant sinusitis, so had to see the anaesthetist, who had discussed my meds etc with the repiratory consultant; the respiratory consultant had said I had severe asthma!

    I've decided the repiratory consultant is losing it not me, and beginning to wonder if she was even looking at my notes! I wish some doctors would think about what they are saying and the effects it can have on their patients.

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