Well as it says really. After months of being up and down, seeming to get under some sort of control (albeit on silly amounts of medication) then everything falling apart in no time at all - sometimes minutes - I've been told my asthma is brittle, and while it doesn't 100% fit the type 2 classification, having some aspects of type 1, its the nearest I'm likely to get.
I'm not sure how I feel. Strangely relieved in a way - so many things DO fit - very sudden and dramatic attacks, high Peak Flow in between, reasonably good lung function, even down to the number of times I've been told 'this isn't asthma' or 'you're having a panic attack' (not helped by also being CVA). But also a bit scared too, Im becoming obsessive with my peak flow, 'just in case' its dropping without me realising etc.
So who knows how I feel? And how have you come to terms with it? How does it affect your day to day life? And can it EVER be controlled??? Many thanks, as always.
Patients with brittle asthma pose difficult and complex management problems. Jon Ayres identifies possible management strategies for these patients.
Jon Ayres, BSc, MD, FRCP, is Professor of Respiratory Medicine (University of Warwick) in the Department of Respiratory Medicine, Birmingham Heartlands Hospital, Birmingham.
The term 'brittle asthma' was first used by Turner-Warwick (1977) to describe patients with asthma whose peak expiratory flow (PEF) varied 'chaotically'; a pattern which could lead to death from an acute severe, attack (Bateman and Clarke, 1979; Westerman et al, 1979). Morbidity from brittle asthma is considerable, and this review aims to identify possible causes and management strategies for this group of patients.
Definitions
Since 1977, the term brittle asthma has been used in different ways by different physicians, leading to some confusion over whether such a group is truly separable from other patients at the severe end of the asthma spectrum. In order to try and clarify this area we have suggested a classification of brittle asthma into two types; a feature of both types being a susceptibility to repeated severe attacks resulting in hospital admission.
Type 1
Patients who consistently demonstrate wide peak flow variation (greater than 40% diurnal variation for at least 50% of days), despite maximal medical therapy including at least 1500 µg/day of inhaled beclomethasone or equivalent, are classified as having type 1 brittle asthma.
It is crucial that peak flow readings are corrected for non-linearity (Miller et al, 1992) when calculating diurnal variation in type 1 brittle asthma. These patients are typically female (4:1 in our clinic) and aged between 15 and 55 years.
Type 2
Patients with type 2 brittle asthma appear to be well controlled between attacks which are often sudden in onset (occurring within minutes) and are associated with loss of or disturbed consciousness on at least one occasion.
The patient may not have been mechanically ventilated as a result of the attack but is very likely to exhibit a severe respiratory acidosis in an attack and, if ventilated, needs support for relatively short time periods (Wasserfallen et al, 1990). Type 2 brittle asthma seems to be equally prevalent in men and women.
Morbidity
Type 1 brittle asthma is a cause of significant morbidity associated with frequent accident and emergency attendances and hospital admissions and the resultant use of considerable amounts of medication. Consequently, side effects of therapy, particularly oral corticosteroids, are common, e.g. osteoporosis, weight gain and oesophageal reflux (Miles et al, 1993). In addition, this can result in the development of obstructive sleep apnoea which may remain unsuspected because poor sleep quality tends to be attributed to asthma, even though the symptom pattern is exactly the same in these patients compared to isolated sleep apnoea. Within our clinic 12% of subjects suffer from sleep apnoea and are treated with nasal continuous positive airway pressure.
Risk factors
Atopy
Over 90% of patients with type I brittle asthma are strongly atopic (Miles et al, 1995), despite which over two-thirds keep pets at home, so continuing exposure to aeroallergens may be important in maintaining symptoms in this group, especially as they spend more time at home and indoors.
Food intolerance
Over 60 % of type I patients report at least one food or drink which makes their asthma worse. Double blind placebo-controlled food challenge (Baker et al, 1996) has confirmed a prevalence of food allergy at over 50% in type I brittle asthma with wheat and dairy products being the most important triggers (Table 1).
Table 1: Positive Food Challenges in Brittle Asthma
Food % Positive Response
Dairy Products 50
Wheat 50
Fish 37
Citrus 34
Egg 34
Potato 26
Soya 23
Peanut 16
Yeast 13
Psychosocial factors
Psychosocial factors are important in type I brittle asthma (Garden and Ayres, 1993), with a high incidence of depression and frequent evidence of broken relationships and physical and sexual abuse in our experience. Just as common are abnormal coping strategies for managing deteriorating asthma, where panic frequently supervenes (Miles et al, 1997). However, it is difficult to be certain whether brittle asthma is associated primarily with personality disorder, or whether the threat of severe asthma induces psychological instability.
Steroid responsiveness
Patients with type I brittle asthma are usually treated with high doses of inhaled/oral steroids, yet their asthma often remains poorly controlled suggesting that there may be a degree of resistance to the anti-inflammatory effects of steroids (Barnes and Adcock. 1995).
Management: Type I brittle asthma
These patients are, by definition, extremely difficult to manage. Many of them have fallen out with their doctor, who perhaps understandably. has run out of ideas and, often, patience. Management should be holistic, trying to approach all areas which impact on an individual's symptoms. This involves identifying causal factors and dealing where possible with psychosocial factors, before attempting to wrestle with polypharmacy. Trying to identify psychosocial factors and dealing with them (including help with Disability Living Allowance, for instance) can help significantly, and group therapy has been of some use in patients who are able to meet on a regular basis, by providing an auto-support network.
Allergen exposure
Removal of animals and determined efforts to reduce house dust mite exposure would seem logical but there is no evidence to suggest that such control measures are effective in this group. Indeed, given their psychosocial problems, these patients invariably believe that their animals are more reliable than people, and suggesting that their animals should be removed is invariably greeted with blunt refusal.
Where foods are identified as allergic triggers they should be avoided. In some cases such avoidance can be remarkably effective while in others the benefit is limited, but compliance with what is often a difficult diet may not always be good. Good dietary advice and support is crucial as Baker and colleagues (1995) have shown that the diets of these patients are very often deficient in minerals such as selenium and magnesium and in the anti-oxidant vitamins A, C and B. This is probably because their diet lacks food that they are avoiding because of intolerance and a desperate need to lose weight with consequent reduction in calorie intake.
Compliance
The most important factor to identify is compliance with treatment but it should be remembered that these patients appear to have wide variations in peak flow and symptoms before they opt not to take treatment as we would wish. Non-compliance is not a cause of the severe asthma itself. Where identified this should be openly addressed with the patient and their carer.
Drug therapy
The BIS guidelines (British Thoracic Society et al, 1996) are of limited help in these patients. They are already taking large doses of inhaled steroids leaving an increase in, or resumption of oral steroids as the next therapeutic step when symptoms deteriorate, which many resist because of side effects. Consequently, many patients simply increase their beta-2 (1-2) agonist use (Miles et al, 1997) in an attempt to avoid oral steroids and hospital admission. Whether alternative immunomodulatory treatment, such as methotrexate or cyclosporin, will be effective is not yet certain but is worth trying in individual cases.
Subcutaneous §2 agonists
Type I patients with brittle asthma can be treated with long-term continuous subcutaneous infusion of §2 agonist, usually terbutaline (CSIT) (O'Driscoll et al, 1988; Ayres, 1992). Using this technique, around half of patients with type I brittle asthma show marked improvements in symptoms, variation in PEF (Figure 1) and use of other asthma medication, including oral steroid use. Around 25 % show some improvement in symptoms but less improvement in PEF while the remainder do not respond. Chronic steroid-dependent asthmatics without intrinsic PEF variability do not respond to this form of therapy.
Figure 1: Peak flow readings (before and after bronchodilator) in a patient with type 1 brittle asthma
Before Subcutaneous Terbutaline
Salbutamol Inh.x n
Prednisolone 5mg
Salbutamol SR 8mg b.d.
Uniphylline 800mg nocte
Pulmicort ii q.d.s
Intal 5 iii q.d.s
On Continuous Subcutaneous Terbutaline
Salbutamol ii p.m.
Pulmicort ii q.d.s
Intal 5 ii q.d.s
On Terbutaline subcutaneously in 4 daily divided doses.
Salbutamol ii p.m.
Pulmicort ii q.d.s
Intal 5 ii q.d.s
The infusions are given through a battery-powered syringe driver (such as the Graseby MS26, Graseby Ltd, UK) which need to be provided in successful cases on a long-term basis. If provision of a pump is not possible then the daily dose can be delivered by divided doses, albeit with slightly less effective control (Figure 1). The best tolerated subcutaneous needles are the Sof-Set and the Disetronics needles (Applied Medical Technology, Cambridge, UK), which although more expensive than the standard butterfly, last much longer; one needle often remains in situ for a week or more compared to 48 hours or less for the butterfly needle.
The usual dose needed ranges between 6 and 15mg a day, mean blood levels of terbutaline achieved by this technique are around 150 nmol/litre, the normal therapeutic range for oral terbutaline treatment (7.5 mg twice daily) being 10-20 nmol/litre but despite this, significant changes in serum potassium or glucose concentrations are rare as, surprisingly, is tremor which may suggest the development of tolerance to the side effects of this form of treatment. Muscle cramps are common and may sometimes be severe, with elevation of plasma creatinine phosphokinase (Sykes et al, 1991) although levels of the myocardial fraction are normal. Some patients complain of an effect on memory and ability to concentrate and occasionally menorrhagia is seen but this is not usually severe.
The main problem is the development of subcutaneous inflammatory nodules. When biopsied these show an eosinophilic infiltrate (Lewis et al, 1987). These usually settle down once that area of skin is avoided, but often leave a fibrotic nodule. More recently a more aggressive type of lesion has been demonstrated which sometimes leads on to frank abscess formation, the pus from which is usually sterile. The formulation of the drug has not changed nor have the preservatives, so the reason for these reactions remains elusive. Although using nebulizer solution rather than the injectable form of terbutaline may help, in some the skin changes are so severe that administration has to be changed to continuous intravenous infusion via an indwelling line such as a Portacath or Hickman line, although in those patients who have had many hospital admissions, such vascular access may also be needed because of lack of useable veins.
Long-acting inhaled §2 agonists
In our experience, salmeterol has proved to be disappointing in these patients for reasons that are not clear. Whether formoterol, which is a full agonist may be more useful than salmeterol, a partial agonist, remains to be determined.
Management: Type 2 brittle asthma
Management of type 2 patients is less difficult. In view of the rapid onset of attacks each patient should be provided with a medic alert bracelet or equivalent. Again identification of inhaled or ingested triggers, e.g. peanuts (Loza and Brostoff, 1995), is crucial, but the mainstay of self treatment for these attacks is adrenaline. Although these patients often appear to be relatively symptom free between attacks in some cases significant peak flow variability is seen which is not matched by perceived symptoms, which may explain the appearance of sudden attacks occurring on the background of significant but undetected airway narrowing.
Adrenaline
Adrenaline may have theoretical advantages over selective 132 agonists, because of its action as an alpha adrenoceptor against reducing airway oedema as discussed in the section on acute airway narrowing above. Preloaded syringes (Epi-Pen, ALK, UK; Ana Pen, Allerayde, UK) should be provided for emergency treatment. Inhaled adrenaline may be more effective than a selective 132 agonist inhaler. Once adrenaline has been injected the patient should be encouraged to use a dose of nebulized salbutamol or terbutaline and go to casualty. One problem with these patients is that, once they arrive in casualty, their symptoms have often improved such that they are told either that they do not have asthma or are just hyperventilating'. Rapid onset attacks such as these are often equally quick to resolve leading to the opportunity for inadequate assessment of severity in these cases.
Conclusion
Patients with brittle asthma, whether type 1 or type 2, pose difficult and complex management problems. Trying to classify these severe patients will help to determine the differing factors involved and, while this classification will not embrace all patients with severe asthma, it will provide a framework for beginning to unravel aetiology and treatment of this high morbidity group. Once identified, dealing with individual factors may in themselves have only a small impact on their condition but these can be cumulative, and even if these result in only modest improvements in control, the patient will believe that some improvement can after all be achieved.
Adrenaline may have theoretical advantages over selective 132 agonists, because of its action as an alpha adrenoceptor against reducing airway oedema as discussed in the section on acute airway narrowing above. Preloaded syringes (Epi-Pen, ALK, UK; Ana Pen, Allerayde, UK) should be provided for emergency treatment. Inhaled adrenaline may be more effective than a selective 132 agonist inhaler. Once adrenaline has been injected the patient should be encouraged to use a dose of nebulized salbutamol or terbutaline and go to casualty. One problem with these patients is that, once they arrive in casualty, their symptoms have often improved such that they are told either that they do not have asthma or are 'just hyperventilating'. Rapid onset attacks such as these are often equally quick to resolve leading to the opportunity for inadequate assessment of severity in these cases.
Yes! Thank you asthmagirl!
That is exactly what happens to me. I officially have difficult asthma, and it's borderline Type 2 Brittle - I haven't yet had a loss of consciousness, but if I didn't have my epi-pens I think I would have.
Sparkle - nothing is a life sentence, we have no idea what the next 10 years of research will bring, but asthma is one of the big conditions that gets a lot of investigation now. So, who knows what is around the corner. Also, I had very bad asthma when I was 20/21 and then had around 10 years of it being really pretty mild. Hormones play a big role in some people's asthma, so that might be a thing that will improve things as they inevitably change over time. How old are you? (I just realised that I've made an assumption that you're female - is that correct?)
But yes - Type 2 Brittle asthma is a crappy diagnosis because it basically says that moment to moment you have no idea whether you're going to be well or gasping for breath. My attacks can come on instantly (though I am learning to sometimes recognise the equivalent of a migraine aura which might suggest that one is more likely). Obviously I'd much rather have Type 2 than Type 1, because I'm almost always well. I've noticed a massive decrease in my brittleness since my Addison's was diagnosed. I also have coughing as my main symptom - coughing and severe bronchospasm where I can't shift any air, which then gives way to coughing again.
Are you working with an immunologist to identify triggers? I have a histamine response to dramatic temperature changes - 'dramatic' as in a cold drink or a cup of tea that is! But I also have a huge list of trigger foods and restricting my diet to just vegetables, eggs, porridge and apple juice, (and milk in small amounts) has given me a lot more control. I did have a full bronchospasm about a month ago, but it went with about a quarter of the amount of salbutamol that it used to - I guess because the baseline inflammation was so low (which I'm sure is as much about being on maintenance steroids as diet, but it all contributes).
Do you have epi-pens? And is your GP supportive? Luckily my GP and asthma nurse know how bad my asthma is when it kicks off, so when junior docs in A&E see me post-epi-pen and write back to my GP that I had a panic attack they just roll their eyes and apologise to me for the crap experience I've had.
I have just been diagnosed with Addison's and I know it is taking me a long time to get my head around having the diagnosis. At the beginning I was relieved that there was actually something verifiably wrong with me, that I wasn't just being ridiculous (lots of the symptoms I've had after allergic attacks were actually adrenal crises, but misdiagnosed as 'anxiety' by A&E). Now I'm often feeling weirded out by it. At times I think they've made a mistake, and at other times I just feel exhausted by the thought of having to manage it all for the rest of my life (or 10 years, or whatever). Knowing that it is highly likely that I'll have to spend time in hospital, going in via A&E, every year, without warning so it's not like scheduling surgery - well, it's all rather depressing.
I'm scared that no matter how official my DX, no matter how many letters from consultants and my GP I carry with me, I will still get crap treatment in A&E and MAU. In my experience, having to fight with hospital staff to get proper treatment is actually more tiring and scary than struggling with the symptoms (and of course I will still have difficult, borderline-brittle asthma, which flares when I'm unwell, and we all know that you're not allowed to have two things wrong with you at once in A&E!) I'm guessing you're going through some of that stuff too?
asthmagirl - thanks for posting that article. I actually came across it a few days ago, and for some reason (which makes no sense even to me!!) it irritated me!! But it seems about the most comprehensive I can find.
curiouser - are you my double???? Reading what you wrote about your asthma I culd have been reading about myself! Yes, Im a 33yr old woman. My asthma had been terrible as a teenabger but then more or less settled for the past 15yrs until December and since then Ive had about a dozen A&E/Urgent Care visits, and 'needed' more than double that but avoid going unless Im practically turning blue, as its so hard to get through to them that yes, this really is asthma - I'm hardly in a position to fight my corner when Im in that bad a way! You say you are well most of the time. May I ask what sort of level of drugs youre on to keep you that way? Im on so much at the moment that even my consultant admits shes running out of options, especially as my body rejects theophylline rather dramatically! Im on long-term pred, 2 steroid puffers, Spiriva, and goodness knows what else, plus another load to protect my body from the asthma drugs!!!
I too am triggered by hot and cold drinks, I cannot drink a cup of coffee without triggering coughing fits, and have given up even attempting ice-cream. I do carry epipens, though I haven't used them for asthma yet - I also have OAS so have carried them for years. I totally understand the bronchospasm too. When Im bad, the only way I can breathe out is to cough, but every so often I can't even do that,and its pretty scary isnt it?
in reply to
curiouser - are you my double???? Reading what you wrote about your asthma I culd have been reading about myself! Yes, Im a 33yr old woman. My asthma had been terrible as a teenabger but then more or less settled for the past 15yrs until December and since then Ive had about a dozen A&E/Urgent Care visits, and 'needed' more than double that but avoid going unless Im practically turning blue, as its so hard to get through to them that yes, this really is asthma - I'm hardly in a position to fight my corner when Im in that bad a way!
Phew - there are two of us at least!
Do you find that your hormones are a factor? I realised this year that I am much more prone to bad attacks in the last couple of days before, or first day of my period. I also have a little blip around ovulation though that's not as dramatic. My endocrinologist and respiratory consultant are both quite interested in this, and think it's quite common in folk like us, so I'm keeping a diary at the moment and then they're going to see what they can do, either by making my hormones less unruly (which has been tried before and never worked) or by upping my asthma protection at that time. (I'm 37).
You say you are well most of the time. May I ask what sort of level of drugs youre on to keep you that way? Im on so much at the moment that even my consultant admits shes running out of options, especially as my body rejects theophylline rather dramatically! Im on long-term pred, 2 steroid puffers, Spiriva, and goodness knows what else, plus another load to protect my body from the asthma drugs!!!
I'm on Seretide 250, 4 puffs a day, Spiriva, Montelukast (double dose), Hydroxyzine HCL (an old fashioned anti-histamine that has a long half life), Domperidone with any meal with much protein in it, Omeprazole, Chlorphenamine (piriton) as needed, salbutamol via spacer at least 4 times each day (before any of my other inhalers, and when I eat), and Hydrocortisone equivalent to about 5mg Pred per day. (And then fluconazole/nystatin for the oral thrush from the inhalers).
I've only been mostly-well since starting the Hydrocortisone, though things got better when the Spiriva got added at the end of Feb. Between Xmas and when the Addison's got diagnosed I was in hospital four times and was on the verge of it most days, which was horrible. I pretty much stopped eating and gave up any hot or cold drinks, and hardly left the house, because I was so brittle. Luckily my GP let me have a neb at home, so that avoided about another half a dozen hospital trips. As soon as my Addison's got picked up I was a ton better.
I too am triggered by hot and cold drinks, I cannot drink a cup of coffee without triggering coughing fits, and have given up even attempting ice-cream. I do carry epipens, though I haven't used them for asthma yet - I also have OAS so have carried them for years. I totally understand the bronchospasm too. When Im bad, the only way I can breathe out is to cough, but every so often I can't even do that,and its pretty scary isnt it?
It is completely terrifying. Not just for me, for anyone who witnesses it as well - people who haven't seen it before think I'm about to die and at times it has gone on for so long that I'm actually going blue, but I just manage to get a coughing fit out and then can inhale again (with massive stridor) before the next spasm. Part of the reason I get so pissed off with the 'anxiety' label in A&E is that I know that most people would be completely freaked out by living with that happening, and yet I generally am the calmest person in the room.
I had an operation a few years ago and officially the day surgery unit was no-visitors, but we managed to wangle my partner being there afterwards because we persuaded them that my asthma was so bad that I couldn't be left unattended. I think they thought we were exaggerating. When I got up to my room they gave me a sip of water, and it must have been cold, and I went into instant bronchospasm. The nurse just stared in a panic while my partner gave me my inhaler and spacer. The nurse told me after that she'd never seen anyone have such a bad attack so quickly. And that was on 100mg of IV HC before the op!
What I've found is that over about 3 or 4 years those really bad attacks went from being occasional (every couple of months at most) to being every week. And instead of completely recovering afterwards I found that my peak flow would only get back up to the yellow zone, and then I'd have milder symptoms for hours. What scares me is what would happen if I had an acute attack again before I've recovered from the previous one. Also, in Feb I got discharged from A&E because I was breaching the 4 hours, even though I knew I wasn't stable - they insisted that it was because I was anxious (my GP was furious because she'd sent me by ambulance), and then that night I stopped breathing in my sleep and if my partner hadn't woken up and pumped reliever in to me I have no idea what would have happened. Terrifying.
But, since starting HC I've bounced back pretty quickly again from the only big bronchospasm I've had in the last 2 months
I have only used epi when I've thought that the bronchospasm was part of an anaphylaxis, but boy it's more effective than anything else I've tried for the asthma. I wouldn't hesitate to use it again if I was really struggling to get reliever in - cos that's the problem, when you can't move ANY air at all, how are you supposed to use an inhaler, even via a spacer? That said, I find that when I'm having a bad bronchospasm, the reliever-via-spacer is better than a neb, initially. And then I follow up with a neb if I need to, as that opens up the bottom of my lungs.
I'm in a lovely position now, having the Addison's means that I have injectable HC. I'm hoping that between my neb, epi, the HC injections and my fab GP's surgery I'll rarely have to go to A&E for that - just for the Addison's. But even for that we're going to try doing IV fluids at home to keep MAU stays to a minimum!
Have you been tested for aspergillus and all that jazz? Is Xolair an option if your asthma is atopic (which the OAS suggests that it is)? That was the next thing they were going to try for me if the Addison's hadn't been picked up. (Or at least that's what they were planning, if the Addison's hadn't been picked up then I'd have probably died that weekend so no amount of Xolair would have fixed me!)
One thing I read last week was that high dose vitamin D is helping people with steroid-resistant asthma - seems to help in most auto-immune conditions. Might be worth a try if your consultant agrees? Certainly less toxic than scary options like chemo!
I really feel for you. Until I had a taste of normal again I had kind of persuaded myself that it was less awful than it was. Being brittle with attacks that frequently is traumatising - don't be afraid to ask for psychological support as well if you need it. Personally I think that having a strong psychological reaction to living with a life threatening condition is the sane thing
Cx
Hey Sparkle,
One thing I want to say is, ignore the technicalities of the type of asthma you have, and try ur best to live your life. I also have Brittle asthma and yes it has been a complete nightmare to live with and having hell from doctors and missing out on thigs I really wanted to do, but the way I have overcome this is literally by enjoying my good days. Going out when I can, making stuff, taking up new hobbies, absolutly anyhting to keep me active. What I found was the worst thing I could do was to sit there and constantly think about how your life was to how your life is now. not only will the stress alone make your asthma worse, but your will spiral into a downhill depression. Even if its just meeting up with someone for a coffee, not only will it help you get out the house, but although it kills with the breathing on the walking, the excersies will help your lungs and strengthen them which will help give you more support when your attacks occur.
I no longer take my peak flow unless im struggling as like you i was starting to do it so often it was becoming obsessive. The way I saw it was, if im not struggling, im coping. when im coping I can enjoy my life. So I am!!
dont get me wrong, I still have those rough days, and like this week I havnt even gotten out of my pjs at all as the effort is to much for me mentally and physically, but this is a down week, next week I could have an up week!!
Also, are you able to work!? if you cant work then I highly reccommend you volunteer somewhere. That is the best thing I coul dhave ever done, and not only have I been there 14 months now, but I have built up fantastic friendships and I am getting an extra circle of support for my health. Thumbs up all round!!
Sorry for the ramble. I hope it helps!!
xxx
Only you know how you feel :-), but I can say that you are not alone in finding some of this both distressing and relieving.
Several months ago I argued with my doctor that I didn't need to go to A&E if I needed ventolin more often than every four hours because there was zero evidence that I was brittle or ever would be. Over the last several months my asthma has seemed to get more volatile: each time we try to taper (I'm on attempt #4) I flare after 4-5 weeks and each flare is more volatile than the last.
I am not brittle by either definition, but i can identify with some of what has been written here. for the past two montns, the longer I go on a dose of pred < 35mg/day the more variable my PF. However, mean apmplitude is between 25-50% but is usually below 40% and falls well short of the 50% of the time criteria. However, during a serious flare I can go up and down very fast and dramatically, well over 50% during the day.
Asthmagirl, I found it interesting that type I brittle asthma is associated with atopy - perhaps my current pattern is related to the start of allergy season? Or maybe I just wasn't monitoring PF as carefully when I restarted using a peak flow meter in January after a seven year break. Hard to know.
Regardless of cause, I think large swings in PF/symptombs is hard to deal with, medically and emotionally.
Even on ventolin, at least recently I tend to go up and down a lot over the course of four hours - the main effect of ventolin is to upshift the rainge of ups and downs rather than to entirely get rid of them. .Most of the downs are also very short lived - ranging from two or three minutes to maybe fifteen or so. Not at all long enough to seek help, and just long enough to be disruptive of what I'm doing. I've found i have to be very intentional about making myself go out and about, and giving myself permission to use my reliever as necessary. : As I see it, the last thing I need is to restrict my activities because of fear that a flare might happen. Behaving in accordance to fear tends to confirm fear and make it more of a factor than the actual real health risk.
In addition, I find all these ups and downs physically tiring even if their short lived nature ensures that there is no real danger from them. Sometimes the whole ""now I can breathe freely, now I have to work hard at it"" also sometiems leaves me wondering if I imagined it all.
Another issue is that some doctors don't seem to understand or believe in these ups and downs. Whist in hospital at the beginning of May I had one doctor tell me that ""asthma doesn't go up and down like that so my alleged ups and downs were evidence that this was stress, not asthma"". (yes - really). When my allergist confirmed that I had an abnormally (albeit not hugely so) high IgE level and that the week I landed in hospital was the start of the olive tree pollen season and that I am very allergic to olive tree pollen, I nearly cried in her office, saying ""so its not in my head"" ... to which she responded. ""No, it is not"".
Also it seems at my local hospital procedures aren't really set up to deal with high variability: For example, one morning in hospital I spent 45minuts bouncing between 30-50% of personal best, but they only did an ABG three hours later when I was back up at 85% of personal best. This caused my pulmonologist (who doesn't know me very well ) to question the reality of my ups and downs. I suspect he was under the impression that the ABG was taken while I was down in the PF basement and didn't understand why I had signs of hyperventilation rather than acidosis in the ABG. (duh - I was only mildly impaired by the time they did th ABG).
All of this adds to the stress: doctors seem more comfortable when they can see things for themselves. That's not guaranteed when breathing is so up and down. I worry that one day I will really need help and will not get treated because of a doctor who doesn't trust what I say and only pops in to check on me or sees test results when I'm up and not down.
In addition, I find all these ups and downs physically tiring even if their short lived nature ensures that there is no real danger from them. Sometimes the whole ""now I can breathe freely, now I have to work hard at it"" also sometiems leaves me wondering if I imagined it all. /quote]
I totally agree with this. Someone said to me a while back that they see me struggling and think 'but she was okay half an hour ago' - to be honest, it would be nice to know I'll be okay in 5mins let alone half an hour sometimes! I'm really trying not to let it get me down, or control my life (yes I work, part-time at present. Believe it or not, I'm a personal trainer!!! Currently though Im covering reception at the gym where I work as someone went on maternity leave and it keeps me in touch with the place) but its ever so hard. I had a fairly severe attack in the night a few nights ago, woke up already in serious trouble, but once I was in a fit state to decide what to do, I was recovering so quickly I decided not to do anything! And by the morning my PEF was up at 80% of my best so no point seeing the GP even. To be honest, they would only up the pred again, and as I've been on 35mg constantly for the past 3mths I really want to avoid increasing it again if I can possibly help it. It would ben nice to get my own body back as well as my own lungs!
Heya,
Just thought I'd post here too, to sympathise!!
I've seen my consultant today who has said I have difficult, severe and type1-2 brittle asthma. I agree with how daunting this can seem.
I have been told exactly when and why I need help etc.
Its pretty overwhelming!
Laura x
Things are horrible at the moment. Im a week into a severe exacerbation which just isn't improving, in spite of having been on 60mg pred since Saturday (rather than my usual 35mg) and Ive had 3 sudden 'crashes' in that time too with PEF going to around 25% for a bit before coming back to around 50%. Called my hospital asthma nurse Mon and Tue and for once was actually willing to be admitted if my consultant suggested it, but she is off sick! Well, I suppose its good to know even doctors get sick sometimes, but not so good that I have to wait until next Wed to see her. I really don't know what to do, the Urgent Care dr, who upped my pred, said she really didn't know what else to suggest and asked me what had been done last time I was like this. I feel like I am just surviving hour to hour at the moment.
So sorry you are having a rough time. 60mg sounds like a lot of pred for this to be happening. Maybe you might call asthma nurse back and discuss if you have more excursions down to 25% land? Waiting until next weds to do something about this sounds like a long time.
Hoping you feel better soon.
Thanks Beth. Im going to see how things go overnight tonight and maybe see GP again tomorrow (PEF currently about 35%) not that they can do much but at least I can 'tick the box' of having been seen. Reluctant to be admitted over the weekend as we all know how little attention you get then and if I cant see cons til Mon I might as well wait until Wed. Until then Im 'nebbing' away and getting lots of reading and sewing done as its about my limit!
Hoping you feel better soon!! Your gp might be able to recommend, or get you a bed in your local? It's not a nice position to find yourself in - very scary!
I am currently captured with no sign of being released any time soon.
Take care, Laura x
Oh Laus Im sorry to hear that, hope you make some improvement soon.
I saw GP this morning, she upped my nebs to 5mg uptp 8 times a day and has given me Phenergan in the hope this old fashioned but very effective antihisthamine might help where others have failed. She would have liked to send me straight to hospital but alloed me home because she knows I am fairly used to this business and am calm about it, but she did say she is very worried and admitted she does not know what the outcome will be for me - she reminded methat people still die of asthma and made me promise to call an ambulance the moment I am worried, or if my PEF drops below 30% again (currently about 50% post-neb).
On a plus, Ive decided to 'treat' myself to a new nebuliser as mine is fairly old and very noisy!
Hoping the nebs are helping and you avoid capture Sparkle.
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