Update - having hard time with taper, doctors

Eight months ago I came down with a cold which turned into one of my worst periods of uncontrolled asthma in years. Things hit a low point at the beginning of May when I was hospitalized for an asthma flare-up. The week after I left the hospital, things were really good and I thought that finally things would be over. My energy level was back to where it should be. I could sing which is hugely important to me. Breathing was easy and stopped drawing attention to itself. My peak flow was back to its personal best or at least close enough (480) without even needed ventolin. I felt healthy.... for about three days.

Since then things have been good some ways and really bad in other ways.

The good news is that I've gone two months without a major flare that required emergency help. I'm also down to 20mg pred and scheduled to be at 5mg in 3-4 weeks.

The bad news is that the level of symptoms that I'm supposed to ""just live with"" is really hard to live with and my doctor doesn't seem to have any ideas of how to make this liveable:

* my occasional asthma cough has turned into a cough that from time to time is so severe that it literally forces urine out of my bladder (not just a leak) - this goes beyond just bad breathing to embarrassment - even maxipads don't absorb it all.

* The on-going cough has also irritated my throat so much that sometimes when I cough the throat seizes up and I have trouble inhaling too, i.e. its triggering some sort of paradoxical vocal cord movement or other type of closure. I manage to stay calm and relax the throat so it isn't any danger but it still is not a nice feeling at all not to be able to pull air in. Truthfully it is scary even though I know I can manage and that that particular breathing problem is not asthma.

* I've also been waking up nearly every night coughing or finding it painful to breath and with a peak flow that is usually somewhere between 40-60% personal best. This leaves me exhausted during the day. I breathe better in the mid-mornings I can't get much done most mornings because I'm using my better breathing time in the mornings to catch up on sleep I couldn't get at night.

* My daytime peak flow keeps dropping lower and lower. For a long while after I got out of the hospital I was able to get my peak flow up to 90-95% personal best for at least part of the day. For the last two-three weeks I haven't been able to get above 85% even with ventolin and more and more I'm sitting around 60-75% during my best parts of the day. If this is me at 20mg what will I be like at 5mg or 0?

I haven't had a completely green day in nearly two months.

I've noticed the low peak flow affects me physically and emotionally even when it doesn't seem to have any associated symptoms. When I finally give in and use reliever, I can tell how much easier I breathe and I also notice myself relax emotionally as well. Somehow working just a bit harder at breathing even if I don't notice it consciously seems to be making me anxious.

Though nothing above is even close to life threatening, the trend just goes downward and downward.

I'm scared of two completely opposite things: that nothing life threatening will happen and that something life threatening will.

First I'm afraid that we'll get down to zero pred, I'll have lots of symptoms but since nothing is life threatening and I'm on everything, I'll be told ""go away - we can't do anything - just live with it"". My doctor is of the opinion that it is so important to taper the pred down to zero that nothing short of life threatening should raise it. The pulmonologist isn't quite that brutal, but he's not the one doing the day to day prescribing.

i've never had a life threatening attack, nor do I expect one. But then again when things just keep getting worse I do wonder where it will stop. I'm realizing that the possibility of suffering something truly beyond my ability to manage utterly terrifies me: I hate depending on anyone other than myself for something so vital as my life and if the worst happened obviously I couldn't depend on me because I'd be too sick. I then project the ""what if"" anxiety back onto the ever falling peak flow and see in it something worrisome rather than simply a problem to be solved with ventolin.

Which is another one of my bug-a-bears because I've developed a passionate hate of ventolin even though I know it helps...so I don't use it perhaps as much as I should and then I suffer more than I need to.

My allergist explained to me that one reason we have to push the taper so hard and let so many symptoms ride because we need to see how sick I'd be without prednisone in order to assess the cost-benefit of maintenance steroids and to make me eligible for various steroid sparing alternatives. . It makes sense but it really really sucks to have to get sick on purpose. (which is how I see it). And apparently, how sick I am isn't sick enough.

What also sucks is that all this could probably be avoided if only my lungs would wheeze on cue or if I didn't have such high personal bests for FEV1. Lucky me starts being symptomatic at 90% of my personal best (so far) but that works out to 110% predicted. 80% personal best = 100% predicted and to get to below 80% predicted I have to be in my red zone.

Even a 15% increase pre-post SABA isn't enough to prove that my uncontrolled symptoms are asthma, at least not for the doctors I'm seeing. (12% is considered sufficient by the ATS, BTS, and the Global Initiative on Asthma (GINA).) My peak flow diary doesn't count either because even my pulmonologist distrusts peak flow and derides it as the poor man's spirometry. The only thing that matters is ""% predicted"" or maybe a huge change in my own scores between two PFTs done in the lab.

My pulmonologist did agree that I should come in the next time I have a exacerbation and do a PFT (no appointment necessary), but that's more of the ""wait until you get really sick"" approach to diagnosis. And unfortunately there is no way to capture my normal daily ups and downs because my worst breathing hours are at night when the lab is closed and there is no one to do a PFT. So the only way to capture anything is for me to have a slow burn exacerbation where I can count on both day and night being well below predicted.

So I am really, really frustrated and upset despite things that should make me happy like ""no serious attacks in two months"".

45 Replies

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  • HI Beth,

    :( :( I saw on the Costa thread that you weren't having the best time at the moment. Not sure it helps much but for what it's worth, massive hugs.

    Admittedly I have not had to deal with the life-threatening aspect either, but I do very much get where you're coming from with the dilemma of not wanting something life threatening to happen, but at the same time worrying that because it hasn't you can 'live with it'. it's ok. Yes, it might not kill you but it's no way ok, as you know, for it to be affecting your life that much and I have been SO frustrated when drs have implied that it is; it makes me really angry to the point where though I am normally unnaturally compliant I just feel like getting rude and angry and asking them how they could possibly know what it feels like and how would they like to live with it? I don't, but it's the closest I get even though I know they're being thoughtless rather than intentionally nasty. I just think at times they have no idea what it's like dealing with daily symptoms, and in fact an AUK nurse I was talking to the other week, without me even saying any of this, was saying to me that she feels a lot of doctors can be very blase about the effect it can have on your life.

    I also get the frustration of being 'too good'. Like you've said in another post, the fact that you can do better than predicted doesn't mean that it's 'spare capacity' and they'd never say it if your PB=predicted.

    I'm not sure any of this is at all helpful, except for you to know you're not the only one! But it doesn't solve anything - if only I knew the solution!

    I will say that you've said before you have a reasonably good relationship with your doctor and that you have realised that he needs to see you well in addiiton to not well so he has a benchmark. However at the moment, it sounds like the communication is not so good, or that he has forgotten what the benchmark is (perhaps because he's not seen it for a while). Is it worth you making an appointment to discuss all this with him, or do you feel that he is also frustrated and not knowing where to turn? Just wondering if it might be better for him to know your position on all this, and perhaps that (I know I do this) you overestimate how much he actually knows about how it is for you daily?

    I hope this helps even a litte - it is a rubbish, rubbish situation and without the details, I do get the general feeling all too well.

  • Hey Beth, it sounds like a horrible, destabilising time.

    In the end it's your life, and the obsession with getting you off pred shouldn't be at the expense of a quality of life that is worthwhile. On the one hand I can see why your allergist wants to get actual data on how it is to live without it, but on the other hand - ouch! She doesn't have to live with it. (This is what I want to scream at most of my docs at the moment).

    I understand what you mean about being simultaneously terrified that something very bad will happen, and scared that it won't. Basically you don't want to be stuck in the no-man's land where your asthma dominates your life but isn't 'serious' enough to be of interest to the people who could offer you more treatment. Because then there are no solutions, there is only 'adjusting'. Yuk.

    This is a classic predicament in the mental health system in the UK (just as an illustration) - if you have mild anxiety or depression you can access support through primary care, most GPs have a counselling service that will help you. If you are totally fruit-loop then you can have 'the crisis team' or psych admissions to cover you 24/7. If you have anything in between you're screwed and get no support, because you're too bad for the primary service and not bad enough for the secondary one.

    This is really where you are now - the 'inbetween' zone - and it's a very, very hard place to be. For starters it's a zone where you end up feeling like you are responsible for every decision, and yet rarely have enough information to be 100% sure of the calls you make. It's a zone where you get all the anxiety that the medics inevitably also have about what they're doing with your treatment projected on to you. ""Get in a box, please!"" they want to shout at your lungs. Inbetweens are the people who make Drs feel like they're failing, and they're not always as clued up on their own reaction to that as they could be. It could be useful to make that explicit - that 'transference' and 'counter-transference' to borrow some psychotherapy terms - with any medics that you feel you have a decent enough relationship with.

    Also I know we've talked about it before, but some people just metabolise steroids totally differently. If you have any digestive issues then you could potentially only be getting a fraction of the dose that it says on the drug box. I don't suppose they've investigated that for you?

    Sympathy - lots of it,

    Cx

  • I'm sorry, I can't offer any advice or wise words, just to know that I hope you get answers and improvement soon. Thinking of you xxx

  • Awww! Hun! how completely frustrated you must feel! Wish i had a magic wand and could just sort this out for you! i really do!

    My solution to your situation if i was in it would be something along the lines of: write a list of the daily struggles and issues that bother you (at the moment im sleeping excessivly). Then a scale of severity (i'd put the sleeping at about a 7, it does massivly get in the way of what i'm able to do). What you think the source of the problem is, being as specific as possible (so i think im having moderate asthma attacks in my sleep and i think this might be stressing my body enough that i *start* to require more cortisol than i have in my body, and then get into a cycle of being too tired to wake up and take steroids) obviously this is just speculation, but i bet a lot you will be accurate with, and a lot will be similar - uncontrolled asthma!! and then how YOU would solve it (so setting an early alarm to take my hydro, starting a low dose of pred so i have a baseline of steroids, getting better control of asthma by starting something like uniphylinne or atrovent) and again, often your ideas wont be the ones to work out, but its an idea. and then once you've got a decent list, look at all the things you can safely do by yourself, and do them, and then book a double appt with the GP to see what can be done about remaining issues. That will help make it clearer to him the specific problems you're having and that you really want/need them to be sorted asap. This wont in any way shape or form work for everyone, but for me that helps make things seem much less overwhelming as i have clear ideas and lists and things and i can just work it out one by one rather than this big overwhelming ""argh!"" of life living when you cant breathe!

    Do you have a councerllor/psychiatrist type person who you can talk to? It can be tricky to get it sorted without medical types hanging onto an anxiety diagnosis, but it might be helpful to have someone to help you deal with the fear and uncertainty they are asking you to live with. Dont forget that what they are asking you to do IS scary, they are asking you to make yourself so ill that you might have a hard time breathing, thats not a little request, they dont have to do it, for them ""its just a few hours/days/weeks"" and will help them get a better idea of the issue - but you are the one who has to live through it, not sure how many of them would volunteer to be strangled for a few minutes, let alone doing it for hours!

    I would also request that if they are going down the more brutal tapering route then id suggest it might be worth asking to be seen frequently until you are stable on a low dose (if they dont think you are going to get stable then they shouldnt be doing it) so that any deterioration is being carefully monitored, and they will see you if unwell and you are being asked to cope alone with less.

    I would also ask if it is worth testing your adrenal function, i know it appears like you have become a bit steroid resistant, but if your adrenal glands have shut down now from all the steroids then adrenal crisis is only going to make you feel worse, worth getting checked asap!

    Also, one potential positive is that i have found that getting off pred completely has meant that i can do those huge jumps from 0-40mg which mean that i feel better than i did when permenantly on higher doses! I actually rarely end up in costa when on pred these days, because the jump works better for me! think you said you found the same. so whilst i am currently living with the fact that i have a ot of rubbish days off pred, i have some good ones when im on it! lots of ups an downs, but at least there is some positives. I know its not much consilation as it doesnt help you in the here and now, but i hope a positive thought helps you process it a bit better!

    im shattered atm, so hope this post is clear and makes sense. sending lots of hugs, im thinking of you xxx

  • Awww! Hun! how completely frustrated you must feel! Wish i had a magic wand and could just sort this out for you! i really do! My solution to your situation if i was in it would be something along the lines of: write a list of the daily struggles ... Dont forget that what they are asking you to do IS scary, they are asking you to make yourself so ill that you might have a hard time breathing, thats not a little request, they dont have to do it, for them ""its just a few hours/days/weeks"" and will help them get a better idea of the issue - but you are the one who has to live through it, not sure how many of them would volunteer to be strangled for a few minutes, let alone doing it for hours!

    Thanks soph for the sympathy. I like the idea of making a list of the things getting in the way. Also thanks for affirming that it IS scary what they are asking me to do.

    im shattered atm, so hope this post is clear and makes sense. sending lots of hugs, im thinking of you xxx

    Hope you feel better soon - double thanks for responding given you aren't feeling well.

  • Butterfly: thanks. Knowing that friends are holding me in their hearts/minds is worth many many words of wisdom.

    Philomena: massive hugs are exactly what I need right now - even virtual ones :-) And thanks for reminding me that I'm not the only one. I know I've told you this before but your persistence in self-advocacy has been inspiring to me. It just isn't something I'm very good at.

    Unfortunately, I think my GP does know how this is impacting me, but is choosing not to react (see below). We have discussed it in two separate conversations. Over the course of eight months he has swung back and forth between two extremes: throwing pills at me and monitoring me very closely as if I were about to explode into a near fatal attack, then flipping to the other side and insisting nothing is wrong with me and it is all psychological (generally, when I get ill again after seeming to have gotten well for a period.).

    Curiouser: I think you nailed it with the ""in-betweens"" and that there is some ""counter-transference"" going on. At the end of last march I had two really rough days. Since both were on weekends/holidays I had to go to urgent care rather than call in for advice. After the first one he was sympathetic. After the second one, he decided that everything was anxiety. In response I made an appointment where I briefly (as much as 15min would allow) described a number of things I had done to explore the psychological dimension - not just anxiety but other issues. However, it wasn't my feeling that my symptoms themselves were anxiety. I also offered to go for a psychological evaluation if he was not settled about this. At any point in the last three months he could have taken me up on that offer, but did not.

    Three or four weeks ago my normally dry cough became productive. Suddenly he was back blaming this on anxiety. When I told him that I was able to suppress the severity of the cough with ventolin or even stop it for a few hours, he told me I was wrong in believing that ventolin made a difference and all but implied I was deluding myself to think so. (ventolin making a difference would of course increase the likelihood that the cough was in fact asthma and not some physical effect my mind was creating for some sort of psychological reason).

    We also discussed what would happen if the severe cough continued after the taper was over. A severe cough isn't just a cough - it has some fairly onerous social and professional consequences. One can't very well go into business meetings smelling like a public toilet. He made it very clear that he had no intention of treating it with prednisone even if a short course of prednisone made it go away and that my impression that pred had worked in the past to quell the cough was distorted. From here on in he was only going to treat respiratory symptoms if they were life threatening. As a practical matter that amounts to saying ""I'm washing my hands of this"". (a) I don't have life threatening attacks and (b) even if I did, the very fact I could call his surgery, wait several hours for him to call back, and then have a coherent conversation with him would almost certainly mean that I was not in anything like a life threatening situation.

    His position was also offered with a tone that felt to me coercive - similar to the calm immovable tone one uses with a kid who is throwing a fit about how the world will end if they have to clean their room instead of going out to play with friends - as if he believed that somehow making me sit in my own piss (sorry to be crude) would force me to realize that I was crazy and ""needed help"". But that notion of ""helping"" someone certainly violates my sense of someone's right to dignity. Even if I were mentally ill, I certainly wouldn't deserve the loss of dignity that goes with that approach.

    Historically, i.e. over the last 25years, a short course of pred has usually been enough to make the cough from hell go away. However, If the only way to make the cough go away was long term pred use, he also told me that I was not competent to make my own quality of life decisions in this matter. To take away someone's right to make quality of life decisions that affect their livelihood is iffy at best even if one were dealing with someone who was severely mentally ill. However, to do that without a confirmed diagnosis by a qualified psychologist of something that would interfere with someone's ability to make medical choices seems very much out of line.

    When pressed he acknowledged that his only ""evidence"" for this ""psychological"" assessment was my failure to stay well.

    As we are several weeks away from zero-pred the conversation was hypothetical. However, he was adamant about his position. That he was thinking/acting in an ""i know you better than you do"" way without having involved a psychologist is very concerning to me. Either he has way overreached his authority out of some misguided notion of doctor = in loco parentis. Or he is acting out his own fears and trying to control a situation that he can't control by setting himself up as the definer of reality and ignoring anything I say that runs counter to the reality that makes him feel in control. (hmmm - wonder who is really anxious here?).

    Or you could adopt my husband's theory: that he was frustrated and was trying to ""fire"" me as a patient.

    Also I know we've talked about it before, bu t some people just metabolise steroids totally differently. If you have any digestive issues then you could potentially only be getting a fraction of the dose that it says on the drug box. I don't suppose they've investigated that for you?

    I've been pushing that for a while, but without any success. I think at present my pulmonologist has a different theory. His thinking seems to be that my GP put me on high doses of pred for so long that my body acclimated and that it is taking my body time to acclimate to the lower doses. I'm increasingly thinking that there might be something to his theory: At the end of last month when we temporarily up'd the pred to 30mg from 20mg I actually improved significantly. That's a first and it comes after nearly two months of being mostly on 30mg rather than 35/40mg. I also seemed to tolerate being on 20mg of pred this week much better than I did last month. it could just be that late June/July is a low trigger period for me, but I'm going to hope it was that my body is more able to handle 20mg now than a month ago.

  • Beth, if you are able to psychologically manufacture mucus to cough up, hats off to you, you're a medical miracle!

    I think your husband is right that the doc is anxious. He is probably anxious because he knows that - for the majority of people - steroids have life-ruining side effects. The more you use, the more likely you are to have those problems. He doesn't want you to turn around in 2 or 5 years time and be angry with him about your osteoporosis or diabetes. In his mind, the fact that you want to keep using pred probably makes you irrational, because it is so unusual.

    However, the fact that you do not loathe pred tells me that there are only 2 possibilities:

    1) That pred does not have the same negative impact on your body that it has on most.

    or

    2) That life without pred is so unbearable that the side effects that the rest of us consider to be awful feel like no-big-deal.

    In terms of investigating the actual effect that the steroids are having on your body, you need an endocrinologist to measure your cortisol level at one or more specific times of day, or at least to do a (cheaper) 24h urine collection to measure free cortisol (less accurate). This would let them see what actual physiological cortisol levels you have on your current dose. In my recent adventures in endocrinology I have learned that, just as pressing the pump on the inhaler doesn't mean you got 100mcg of salbutamol, taking a steroid tablet does not mean that you got a specific, known systemic level of cortisol.

    That single test would rapidly establish whether you are really on massive doses or whether you are on a more modest dose irrespective of what tablets you take. Your GP probably can't perform either, but it shouldn't be difficult to refer you for that specific investigation.

    Doctors get stressed out by patients with ""MUS"" - medically unexplained symptoms, and they forget that today's MUS patient is tomorrow's Addison's / Chron's / Lupus / TB / Cancer patient. Today's diagnosis of anxiety making you shake could be suddenly replaced by an electrolyte imbalance that can be corrected.

    I can understand why doctors feel like this - as a computer programmer the most frustrating bugs I have to fix are the ones that I can't reliably recreate and can't find a reason for. It's always tempting for me to decide that this bug is the software equivalent of an MUS - a PICNIC (Problem In Chair, Not In Computer). It's humbling how frequently I do find the bug after all - sometimes months later. Of course my frustration is that the users never give me the right information. But if they were equipped to know the information they needed to give me, they wouldn't need to hire me at all.

    Keep pushing. If you can't fix things with your doc in one more appointment then I think it's time to move on. Maybe he has burnout that is affecting his relationships with all his patients. I'm not sure how it is where you are, but in the UK our GPs have about the highest rates of alcoholism, divorce, drug addiction, depression and suicide. It's a really tough job and for some reason we expect them to do it with an intensity that near kills them.

    In the UK the advice to doctors when dealing with patients with 'MUS' is that at every 3rd appointment they should stop, drop all their assumptions and start again from the beginning - reviewing all test data but ignoring any theories or decisions they've made up until now. Obviously the patient needs to be willing to start from scratch as well. Nearly all practices in the UK have multiple GPs, so it's also common to ask the patient to see a different GP on the team, to get some fresh eyes and ears. Your doctor shouldn't prime this new doctor with their own beliefs! (Again, this works very well in computer programming). Don't be afraid to ask whether your doctor would prefer that you do that.

    There are also other treatments that might be 'steroid sparing'. It might be that both your general doc and your resp doc have become so focussed on the pred that they've not considered other options. I can't remember if you are on Spiriva? (Tiotropium). It isn't licensed for asthma in the UK (only for COPD) but probably will be next drug that is widely used for asthma. It made a big difference to me in just a few days. Obviously you need the long taper because if you just bump off of pred your body will go mad, but Spiriva is what got rid of the sticky cough that I've had for... oh, about 22 years! It's also cheap!

    The other thing I wondered is whether you can up your ICS? Which inhaled steroid are you on, and what dose? With the sticky cough, you won't be getting the full dose - you might only be getting a third of it. And do you use ventolin before you take your ICS, to maximise the amount you get into the bottoms of your lungs?

    More questions...!

    Cx

  • Thanks Curiouser for your lengthy reply and many ideas.

    Beth, if you are able to psychologically manufacture mucus to cough up, hats off to you, you're a medical miracle!

    I think your husband is right that the doc is anxious. He is probably anxious because he knows that - for the majority of people - steroids have life-ruining side effects. The more you use, the more likely you are to have those problems. He doesn't want you to turn around in 2 or 5 years time and be angry with him about your osteoporosis or diabetes. In his mind, the fact that you want to keep using pred probably makes you irrational, because it is so unusual.

    However, the fact that you do not loathe pred tells me that there are only 2 possibilities:

    1) That pred does not have the same negative impact on your body that it has on most.

    or

    2) That life without pred is so unbearable that the side effects that the rest of us consider to be awful feel like no-big-deal.

    My GP hates pred (also asthmatic) and it doesn't do good things to him. He has had a great deal of difficulty taking on board that the pred did/does not create any of the side effects that seem to cause most people frustration. I suspect he thinks I am in denial rather than telling him the honest-to-God truth. Even after six months spent mostly on doses of 30mg or more: no weight gain. no insomnia. No mood swings. No diabetes. No glacoma. I do have osteopenia, but given how low my T/Z scores are and my family history (all of the women in my maternal line have lower backs that collapse as they age - even well before menopasuse - but no broken bones - not sure what is with that), it is unlikely to be solely due to the pred. At present, the only other side effect beyond the bone density issue is very mild moon face, a faster rate of hair loss from the scalp.

    Despite that, i do want to get off prednisone. What I had really wanted with the cough was to take a wait and see attitude and try to deal with it in other ways, i.e. using ventolin which really does work to scale the cough back to something more manageable. When we had that conversation about quality of life I didn't know that ventolin would control the cough and he didn't offer/remind me to try it, presumably because he didn't want to encourage my alleged ""delusion"" that the symptoms are due to asthma. One of my frustrations with this GP is that he is short on solutions other than throwing ever more pred at me and when that isn't appropriate he leaps through the ""its anxiety"" escape hatch.

    I would only consider long term pred if there were really no other options. But as you point out some of the symptoms I've been struggling with for literally years are in fact very disruptive. For nearly 30 years nearly every URI turns into a severe cough and a long period of lack of control. By my late 20's (i'm now 48) I had to switch from full time work to consulting because I was rackiing up so many sick days. And the cough from hell is both professionally and socially disabling. To consult I need to network and it doesn't do good things to networking and creating a good impression on others. On-going breathing problems also interfere with work. The two areas I'm most competent to consult in are management consulting (business strategy, market development, organizational communication) and software engineering (both at the design and programming level). But both areas require the ability to concentrate and deliver according to schedules. Trying to concentrate on brain work when breathing on and off is an activity in its own right is very difficult.

    If he had said to me: you need to accept that you might have a certain level of disability and I want you to see a counsellor before you make decisions about trade-offs, I would have been 100% for it. I'm not at all opposed to counselling, especially for something as difficult as this. I can also see room for counselling as regards how I deal with medications: I know I have a love-hate relationship with ventolin. Love because it really does make a difference. Hate because well, I'm not entirely sure why. Maybe if I had a better way to deal with the side effects of not breathing well, there would be less reason for scary trade-offs such as long term pred use.

    Yet getting him to have a dialog about those other aspect has been well nigh impossible. The psychological issues that do exist are off the table whilst invented ones attributing to me feeling and reactions I don't have get pushed to the point of being invasive.

    Doctors get stressed out by patients with ""MUS"" - medically unexplained symptoms...Keep pushing. If you can't fix things with your doc in one more appointment then I think it's time to move on. Maybe he has burnout that is affecting his relationships with all his patients. I'm not sure how it is where you are, but in the UK our GPs have about the highest rates of alcoholism, divorce, drug addiction, depression and suicide. It's a really tough job and for some reason we expect them to do it with an intensity that near kills them.

    Thanks for the encouragement.

    I'm in Israel. The system here allows us to switch GPs every quarter. Unfortunately this happened at the end of the quarter so there wasn't any opportunity for us to meet again and hash this out. Also, to be honest, I feel like I've given him several chances - this is actually the third time he's blitzed on me because he saw a situation he didn't fully understand and couldn't ""fix"". I think we both need a break.

    I also think his anxiety goes beyond ""MUS"" and it isn't helping me. I met with a different GP today and was struck by how differrent it felt to talk to someone who wasn't always on the edge of worry and envisioning the worst possibilities. I hadn't realized how infectious my former GP's worry was. I always had the feeling that one part of him thought I would explode into a near-fatal attack and then when that didn't happen he was angry at me for worrying him without cause. No matter how many times I pointed out that my symptoms have never been life threatening even if they are totally uncontrolled it didn't seem to get through.

    There are also other treatments that might be 'steroid sparing'. It might be that both your general doc and your resp doc have become so focussed on the pred that they've not considered other options. I can't remember if you are on Spiriva? (Tiotropium)....The other thing I wondered is whether you can up your ICS? Which inhaled steroid are you on, and what dose? With the sticky cough, you won't be getting the full dose - you might only be getting a third of it. And do you use ventolin before you take your ICS, to maximise the amount you get into the bottoms of your lungs?

    Spirva was suggested by the difficult asthma expert my pulmonologist had me see. I should investigate that further. Money is tight though so a lot would depend on how inexpensive.

    Pre-treatment with ventolin - I had been doing that and then stopped. Maybe I shouldn't have.

    Increase ICS: already on a very high dose (500/50 seretide + 500 flixitide : 1 puff AM and PM) - so total 2000 ICS. I don't know if a doctor would agree to increasing beyond that, but it would certainly be better than upping pred/stopping the taper.

  • Hi Beth,

    Sorry to hear you are having such a rough time and I'm sorry that I can't offer any more advice.

    I just wanted to say that I totally sympathise with you. I haven't had any severe attacks in ten years yet my asthma is having a bigger impact on my life than when I was in and out of hospital on long term pred (10 years ago). I don't like that frustration of you can just about get on so carry on as normal but this makes you so tired and you are probably not doing a great job. When I tried to explain this to my cons, she said ""no you're not I'll enough to need time of work"" but didn't seem to get that it was a struggle to do it.

    I have found my GP and asthma nurse are being a bit more symphathic about this since an appointment I had last week. I posted details on another thread but I basically asked him whether it is normal to need my inhaler 5 times a day (if I went outside, tried to run/sing etc-all of which I can't avoid as a music specialist in a primary school) and he was shocked that I would even consider this. In retrospect, he probably understood this all a long but by asking this (even if I knew the answer) I showed him the impact it is having.

    I onceI asked the nurse whether she wanted me to go without my reliever so I was really struggling when I went to see her (I always need it to get there and then am fine when I am there) and she said no (again I knew this but wanted them to see how desperate I was). However, I did phone them once and said I am actually a little wheezy and struggling could I talk to someone-doctor phoned me back with five minutes and could hear I was worse than when I go in. The other thing That one doctor noted was when I was went in really tired (she is a particularly understanding GP though).

    Sorry not to be a great help but I really feel I turned a corner with it last week and I have found it so much easier since.

    Take care

  • Thanks, Kayla. The moral support I am getting from you and others is really helping me.

  • Doesn't sound like there's wiggle room on the ICS then - but do pre-treat with ventolin to get it into the bottoms of your lungs.

    Here, Spiriva is cheaper than Seretide, but not a huge amount (£37 vs £45). Cheaper than losing multiple days of work though when you're self-employed! And a fairly inexpensive thing to 'try'.

    It sounds like the relationship between you and your normal GP has broken down - possibly for reasons that are totally beyond your control/case. So - did the new GP you saw today mean that you have now switched?

    Cx

  • Yes, I've switched for the quarterr - apart from broken down communication, I also think it is time for a new set of eyes.

  • New set of eyes deffo sounds like a good plan to me! I also wanted to add that i also get the slightly ridiculous ""dont want to take ventolin"" thing. i get all weird about it frankly, in fact i once actually cried coz i was 'bored of the taste' of ventolin - how insane is that! But my thinking is that our brain knows we have very little control over what is going on medically atm, so we have two choices, we can either accept having no control over our lives, or take control in weird ways. Fairly standard way of thinking really, often stated as a cause of anorexia. For us its control over the one drug that we get to choose to take, as opposed to the millions of regular ones we have to take everyday. I also find that by withholding meds say for ten mins, then i get to decide when i feel better (ot a conscious choice - i just notice myself thinking that occasionally) which i accept is slightly a bonkers way of thinking, but you'd have to discuss that with my brain, i know its mad, its my brain with the issues!! lol!

    Do you benefit from ipatropium nebs in hosp? if so then Spiriva would be even more of a good thing to try!?!

    I second the use of asking questions that i already know the answer to to make a point. i actually did that when they tried saying that some of my symptoms (or the speed of deterioration at least) was due to anxiety. I just asked how she proposed we treated this clearly dangerous anxiety, and how would we know if any treatment was effective. given that i didnt feel in any way anxious it seems difficult to measure any improvement - there was nowhere particularily up to go with!! i was the least anxious i'd been for years (apart from proportional response to not breathing) and i also asked if she planned on making it so that not being able to breathe wasnt a scary feeling. Obviously they cannot do that, so she had to accept that actually from a MH point of view i was covered!! lol!

    Hopefully new GP will be easier to deal with and maybe have a different approach!!

  • Wow, Beth. What a lot to have to deal with. I'm coming back in late and everyone else has already made some very helpful suggestions (some of which I am filing away) but just wanted to say I'm glad you have switched doctor. I had no idea how easy or hard that was to do in Israel, and I had remembered you saying before that this doctor was good so I didn't know how you'd feel, but it very much sounds like you needed a change and a break and to have a fresh perspective. Doctors are only human, yes, but as a patient you shouldn't be having to deal with too much of the doctor's baggage. A doctor who is asthmatic himself could be good, in that he should understand more of what you're going through, but on the other hand it seems that has turned negative in that he's projecting himself onto you too much/making the mistake of thinking everyone should be the same and that his own approach will also work for others. And his own worry certainly won't be helping!

    I really do hope your new GP is helpful and starts from the beginning, and that something changes for you soon.

    Have to say I hadn't considered myself as inspirational from the self-advocacy POV, but that's nice to hear -thanks. I say this because mainly to me, it feels like me being spoilt and demanding things and making people's lives more difficult. On the other hand, I can't believe that it's a good use of NHS resources to have me waiting for ages (and at the moment, making rather too much use of urgent services) to see a consuiltant who I suspect would have no particular ideas on how to improve things and would probably push the anxiety aspect again (she would not have fresh eyes), or conversely, taking up another appointment at the specialist place to see someone who has decided there is nothing more he can do for me, that I am not making any effort despite what the physio has told him, that it's mainly down to anxiety despite what the physio and the health psychologist have said (and I had to find this bit out from my GP, the cons didn't even raise it with me directly), and that my asthma is well controlled (and no, he didn't know about the last few weeks but it can't have been controlled if it even managed to get to that point. So while I still feel like I'm making a huge fuss, I also feel that in the end, apart from it being my health which I rather think is important, no-one wins if I don't try to sort things out.

    I hope this makes sense...kind of lacking sleep and my computer decided that yesterday would be a really good time to die completely.

  • Soph: I think you nailed it on the ventolin. It is about control: or perhaps I should say misplaced control, because it really is the asthma we want to control, not the medicine itself. Being more liberal with the ventolin would let us take control away from the asthma.

    I think, at least for me there is also an issue of wanting to do things on my own: using the ventolin makes me feel incomplete like ""I'm not enough"". But if I think in terms of controlling the asthma, then the reliever is more like a weapon I use to take control of the asthma ( ""shoot that asthma down""). It doesn't take away from my autonomy. Rather it is a tool that enhances it.

    Ipatrpium nebs: Unfortunately Atrovent makes me cough. I understand though that that might be a reaction to a preservative in the neb rather than to the ipatropium bromide.

    Philomena: condolences on the computer. Is this ""only"" a loss of computing or does this also mean dead and buried data?

    Asking questions: good idea but I'm not very good at it.

  • Thanks Beth! Luckily I have access to an amazing Mac person who has rescued me from the nearly-losing-data hole I had almost dug myself into. I now have a backup hard drive and am determined to be better about saving. I think I could see this coming for a while (or perhaps my computer just had anxiety? A salutary lesson not to ignore warning symptoms I feel!) but the timing was not good; I'd been held up on my dissertation work from being in hospital, had to produce the goods with not much brain left and then bam, computer dies! Arggh. So glad I have managed to rescue the data, though my supervisor is careful about backing up in any case luckily.

    Anyway I digress, sorry. I would also like to try Soph's asking questions method though again I suspect I wouldn't be that good at it! But I have at times pushed myself to do it and got results; I asked why my spiro technique was so rubbish as there'd been a lot about that and that led him to a) check my PF technique and discover it was all wrong - now I have a slightly more sensible best PF! b) to do more LF tests (UgHhh) which he looked at properly and found there was more going on than you'd guess from a casual glance, because he looked at the ratios properly and compared before and after. So I guess I have to learn not to just drop things when it gets hard or I think it's not going well, because at least with this consultant (seeing him again this Wed and really quite scared about it) pushing, in a good way, can be productive as I have found he will actually respond and new possibilities can come up.

  • a) check my PF technique and discover it was all wrong - now I have a slightly more sensible best PF!

    Sorry to hyjack the thread slightly, I'm just interested in this comment and wondered if you could explain the difference between your correct and incorrect methods of pf. I've never been entirely convinced I'm doing it right. You're supposed to take a big breath, is this a big breath to blow out candles for example? Because I can inhale beyond this, almost as though there's an extra pocket somewhere or like I'm filling my throat or something. Also when you exhale, I'm assuming you use stomach muscles too?

    I'm sure I've asked all this before, but like I say, I'm not convinced I'm doing it right as my resulted can be so variable and don't always mirror my symptoms

  • a) check my PF technique and discover it was all wrong - now I have a slightly more sensible best PF!

    Sorry to hyjack the thread slightly, I'm just interested in this comment and wondered if you could explain the difference between your correct and incorrect methods of pf. I've never been entirely convinced I'm doing it right. You're supposed to take a big breath, is this a big breath to blow out candles for example? Because I can inhale beyond this, almost as though there's an extra pocket somewhere or like I'm filling my throat or something. Also when you exhale, I'm assuming you use stomach muscles too?

    I'm sure I've asked all this before, but like I say, I'm not convinced I'm doing it right as my resulted can be so variable and don't always mirror my symptoms

    No worries. I have also been getting highly variable readings on peak flow for the last few weeks, as much as 100 L/min between three blows. Also if I do three blows, then three more, then three more, they will gradually climb upwards. Not sure what is with that. Sometimes it seems like differences in the way I am blowing and sometimes it seems like I must be pushing out trapped air, thus making each successive blow go higher and higher. Curious if anyone has thoughts on this.

  • Hmm I will try but still not sure I have it right! Basically my 'wrong' PB was about 700 which even for me seemed a bit high. I used to think that the idea was to get the highest number by any means possible! But cons got me to do it in front of him and said I was coughing into it, which only used my trachea, and that I could get a very good result during a bad asthma attack doing it like that. He said I needed to completely seal my lips and blow out over a bit longer - a blow rathet than a cough if that makes sense - sorry is hard to describe! Still not sure I do it right but there is a *little* more correlation now between PF and symptoms though I still wouldn't rely on it. Atm it's stubbornly low and is in the higher 300s (PB is 600 so it's not critical but not great and more or less matches up with things though it was mid-high 400s when admitted last week, odd! I'm ok atm though, just saying that to illustrate it's still not perfect).

    Re the stomach muscles - yes I do use those. I hadn't realised this until I tried to do a PF reading after having norovirus in Jan and it was really painful - hadn't been able to keep anything down so had really kind of wrenched stomach muscles including ones I use for PF!

    Hope this helps...I looked up videos of how to do PF but they weren't that helpful; however drs/nurses etc I've been doing it in front of recently haven't said I'm doing it wrong.

  • Thanks Philomela, yeah I always thought it was highest number possible by any means too!!

    Anyway so OK, made my self dizzy now lol, i get 550 if I over inflated my lungs to the most I can and 'huff' into it (I guess like a cough) but only 500 if I blow like you would a recorder, only harder obviously. If I just take a big breath like I was gonna blow candles and 'huff' I get 500, or blow I get 450. So there's potential for lots of variability! I'm not feeling my best at the moment, so results are lower than they could be too.

    I suppose I could ask gp/nurse next time I'm in but feel a little daft asking after all this time!

    A pf of high 300's doesn't sound good, I'm feeling very rubbish by the time mine reaches low 400's! Glad you're feeling relatively OK xxx

  • This is why I like my Piko-1 - to get a valid reading you have to exhale for at least a full second, so if you just *cough* into it then it says ""nope"".

  • Yes I have considered one of those, but have heard negative reviews

  • Mine matches pretty much exactly with what I got in my spiro test at the consultants. Others seem to have weird / dodgy results - not sure if that's a quality issue or a technique issue. Very occasionally I get an erratic result, usually because I've jerked or accidentally knocked my teeth against it or something. I always do 3 readings anyway, and if there aren't 2 that are close to each other then I give it a minute and start again.

  • I have had 2 of (sent first back as faulty but second was the same) and they both tell me totally insane things eg I am actually a male NBA player as I can't think of anyone else who can blow 880/900 and an FEV1 of 6.8. Particularly on a pre-reliever reading... It also does some variable readings and I have no idea which is closer; doesn't seem to calibrate well with the Mini-Wright. I bought it as it's more portable but guess I'm not one of the people it works for!

  • How much would I be looking at spending on one?

  • Glad its not just me who can't make sense of it! My successive ones get lower and lower the more I do though!

  • I've also gone through periods where that happens. Including now: at a certain point, if I keep trying successive triplets of blows, then they start going down. It is confusing. I don't know which reading is the actual reading.

  • Oh I get this! Mine are just confusing - they can be wildly different between blows, go up, go down... ugh. I still don't know if I'm doing it right, but then sometimes it IS consistent and even agrees with symptoms a bit! (Like right now, sort of...hmmm).

    Butterfly - I think my PIko was about £15, worth having a look around to see diff prices. Shame it's hard to work out before hand if it will work for you but it wouldn't break the bank if it doesn't. I'd let you have/try mine if I could get it to you!

  • Oh £15 isn't too bad, I'll have a look on the internet.yeah shame you can't 'try before you buy' lol. And thank you, I'd meet you for coffee and try yours first, but Yorkshire's a fair way from you I believe (seem to remember you saying you commute to London at times!)

  • I just wanted to report in that despite my fears I'm down to 15mg a day and doing fairly well, thanks to getting religious about the ventolin the minute I start coughing. PF is still stuck below 80% most of the the time and I'm still waking up at night, but I haven't been having huge ups and downs like I was in may and parts of June. Also I've noticed recently that I can walk down the street without reacting to everybody and anybody's cigarette, perfume, and whatnot. Yeah!

    July seems to be being nice to me.

    Also a good reminder that you can't always predict the future from the past. (David Hume where are you)

  • Hi Beth,

    I'm glad July is behaving better for you! I started being more aggressive with the ventolin 19 months ago when the consultant had run out of ideas with me and as a last resort gave me a home nebuliser. I was very skeptical that it would help as we all have it drummed into us that ventolin doesn't treat the underlying cause of asthma but I was surprised that it did. It gave me quality of life back which in turn improved my fitness levels which is bound to help when I am struggling. In 5 months, I went from using the neb 4 times a day to once a day and then over time to only once a month. Of course, I am still on high dose preventers but they are slowly calming things down. I am back needing it daily with the grass pollen here in the UK but I know I am slowly creeping forward with improvement and feel more optimistic that this 38 month flare up may come to an end eventually.

    I hope things continue to move forward for you and your new GP is a good one.

  • Really glad to hear things are improving a bit Beth - hoping that trend carries on, you can keep reducing and with new GP can really get things sorted.

    Apologies for slight thread hijacking but: JF - also glad to hear things improving for you! Not seen you on here for a bit till last few days so good to 'see' you again and hope the improvement continues despite the pollen. Wish we had PMs so could catch up properly.

    Butterfly - yep not really close to my neck of the woods, shame! Good luck with the Piko though, hope it does work for you as it seems a lot more handy. If it does work might be worth taking it with you to appts so you can show what's going on at that point with the machine you use every day? Think it also stores readings.

  • Hi Philomela, (hijacking too, sorry Beth)

    Yes, I miss the PMs too. At least we had them for a while and realised we are not alone with our 'unusual' asthma.Our PMs were invaluable to me when I needed them most. I am always reading and keeping up to date with the forum, just don't always have much to say lol.

    I have just finished 10 days of pred but it seems to have worked and I just need those pollen levels to drop! I feel I am in the take one step forward and half a step back stage but do feel optimistic about things. I have a big pot of patience still there!

    I am looking forward to hearing about your appt with your previous consultant too. Is it this Wednesday? xx

  • Excellent news re pred working! And re patience too. I am rapidly running out of patience with my lungs' current Young Offenders routine hehe and really keen to get off this pred before my face becomes completely circular. You and Beth, being rather like me lung-wise, are giving me hope that this is doable with your last few posts as I've just got off another week at 40 and back down to 35 where I was 2 weeks ago. I hope that both of you can show your lungs who's boss and then teach me!

    Yes it's this Wed - arggh. He won't know the recent background tlll I tell him and I don't know how he's going to react; it's all a bit new to me at this level but I'm sure he's seen much worse, though would like him to help get me off the pred. He usually seems to have plenty of time luckily due to his slightly unusual position within the hospital - I think I'm going to need it, there's a fair bit to discuss! At least I have some interesting stuff in the afternoon (experiment stuff) to take my mind off it.

  • I bet he'll love the challenge! I would be tempted to go with no expectations if it was me :-)

  • Hijack away JF - glad to hear that you are doing well. And thanks for the sharing your experience with ventolin. I think you are right: we're told over and over that ICS is the golden road, but there comes a point when that particular road just runs out for some of us.

    Philomena - hoping you get off or at least lower down on the pred. I wish there was a way to show whose boss, but I think that might involve learning how to control the weather and the seasons - better change your name to Demeter or Persephone. Or maybe I should. I was thinking over the history of me and asthma for my new GP and realized that I'm often better mid-summer.  And if I'm lucky and have a mild winter or several I might go several years without a rough patch like this year... Of course that also means we probably are having a drought with no rain (not good). Eventually, the next wet and windy winter comes along , I catch a ""cold"" and it all falls to pieces.. This has happened so many times over the last 25 years I've lost count.

    Anyway - I hope things start looking up for you and your appointment goes better with this cons than the other one which sounded awful. What is your experiment studying? (see now I'm hijacking my own thread).

  • JF - I try not to have expectations but my brain has other ideas! Beth - yes, the last appt was a real low point and I can't help thinking that I might not be at this point if the other one had not been so adamant that my asthma was controlled and it was all breathing pattern/larynx. NOt disputing the contribution but er, don't really think I had proper control even before all this. I'll be doing better this time with the new/old one if I don't get any implication of it being my fault for not doing my exercises and then trying to cover it up! I think he might like the challenge...he has already said I baffle him. Having made a bit of a fuss to get to see this one again though I am kind of invested in it working out.

    HMm becoming a goddess, now there's an idea. They don't have lung problems! I hope your mid-summer improvement holds, or you work out something before the winter. I find it deeply annoying that now with the pollen and my existing issues with cold air (and humidity) there seems to be no season without triggers! I went to an exhbition recently about Stradivari violins and realised that essentially I am an expensive violin (ie can't be too cold/hot/dry/humid, though I don't sadly sound nearly as good as a Strad). Or just Goldilocks perhaps ;)

    The experiments are actually other people's - one on auditory perception in musicians (so am in demand for a friend) and one on facial touch perception. Mine is on action and perception though I'm not sure if I need to test anyone else - supervisor thinks not but I've spotted some gaps. The computer crash has kind of slowed things down, and today I thought I'd lost an Excel spreadsheet that took me hours, partly due to pred brain. (Can't really explain pred/post-hospital brain easily to supervisor...so I need to get off it before I mess anything up hehe).

  • Well done on getting the pred down to 15mg beth, hopefully lungs will be ok with this.

    Wishing you all the best in reducing, getting off, staying off pred, Beth, Philomela and JF.

  • So I've had two appointments with the new GP. The second appointment he had lots of questions about my asthma history. Fancy that - actually asking me questions. (Previous GP had no interest in the overall history - I could never figure that out). And he's not done asking so we have a 3rd double appointment.

    He also had a few interesting alternative/wholistic medicine suggestions: I don't tend to be much of an ""alternative medicine"" person, but if something other than more ventolin and more pred or second line quasi-experimental treatments are thee only things left, I'm suddenly much more open minded. Fortunately, he hasn't suggested anything too weird -- things like diet , herbs, hypnosis (I told I'd be willing to try it but I score very very low on suggestibility tests and may not be all that hypnotizable)

    Today's meeting was interesting. I was short of breath most of the meeting when I was talking. At the end, I mentioned that things had been a bit rough the last 48 hours. Instead of dictating to me what to do, he asked me what I thought I should do because I knew my asthma far better than he did. Very different from my previous GP who never seemed to really trust me to manage my own body.

    He asked how much ventolin I was using (16 puffs for 8 incidents yesterday) and wasn't too happy about it. Then he asked me to check my pulse He guestimated from my counting aloud (not sure why he didn't pull out a pulsoximeter) that i was probably about 120 with the intent of underscoring that I was having a flare.

    I've had many times where friends have been more clued in than I have that I was having a flare that needed to be dealt with. But this is the first time a doctor has done this.

    Before I left he told me that he wanted me to keep my pulse below 110 - he didn't give specific instructions how, but we had discussed two options: using the nebulizer every six hours to prevent the need to use puffs throughout the day and/or going back up a bit on prednisone. I got the feeling that he meant to leave the decision to me.

  • That all sounds quite promising/interesting, to have him ask a lot about your asthma and have a few suggestions. Perhaps he could have helped you decide what to do re pred/nebs, it might have been nice to weigh up the pros and cons of both, it's not easy to make those sorts of decisions. Hope the third app goes well too and you can make some progress.

  • That does sound promising - though would have thought using nebs even spaced out would not help keep HR down! Really glad he's listening properly though and hope he comes up with some ideas. I agree with Lou that it would be nice if he gave you a little more guidance, but it's early days so hopefully as he gets to know you better he'll be able to come up with plans of action for you.

  • Re: guidance: I'm not so sure he didn't give me guidence.

    But I think he also clued into my need for some control and to be respected as someone who knows her body.

    As for guidance, I got the distinct impression that he thought a temporary step up in pred was really the better choice. We only discussed the nebs when I expressed reluctance to increase it.

    Nebs and pulse: One way the body compensates in an asthma flare is to work harder at breathing to compensate for resistance. The extra muscle work sends heart rate up. Also if less air is getting in the body can compensate by speeding up blood flow ( more trains(blood) more passengers(oxygen)). Hence the heart rate goes up.

    Even though ventolin itself can raise heart rate, if it gets rid of the flare the net effect is a lowered heart rate.

  • Sometimes, I'm not aware I'm working harder at breathing until I notice my heart rate has increased, I suddenly am aware of my heartbeat, and then realise my resp rate has increased, and then realise all the extra effort I'm putting into breathing.

    Its good that your new gp is open to the fact that you know you're body, let's hope things continue to go well with him, keep us posted xxx

  • Well switching from the puffer to the nebulizer seemed to do the trick. It also looks like things are beginning to clear up - I'm still coughing when the ventolin wears off, but overall I'm less out of breath, coughing up less gunk, and heart rate has gone down from averaging in the 90's to mostly sitting in the 70's. Maybe this was just a period of adjustment. I haven't been down at 10mg pred in over six months.

  • Well, it turned out to be a very good thing I switched GPs.

    That cough from hell? New GP ordered blood tests and found out that I had a bacterial infection. Four days of antibiotics and suddenly I felt so much better. (well, my body does. Asthma is being mildly annoying again, but at least I feel better so I can deal with it better).

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