Rant-Very Frustrated-When to end Taper?

So I've been trying (#4) to taper the prednisone. At the beginning of the month after I got out of the hospital I felt really good by any measure: peak flow, energy level, cough gone, etc. etc. but by day six things started going backwards and with some minor noise have gone down down down. I'm now hanging between 60-75% of personal best with a few short periods up to 90% immediately after using ventolin.

Three weeks on pred < 35mg and I'm back now to where I was before the hospital: tired, coughing, easily out of breath, hurting to breathe from time to time, fighting off hyperventilation that isn't coming from overtly breathing fast but rather from my body trying to overcompensate for whatever is going on inside, sometimes having to stop what I'm doing because breathing becomes an activity in its own right, peak flow jumping up and down along with the now its hard to breath, now it isn't game.

I feel caught between a rock and a hard place. I feel like Tantulus grabbing for the fruit and it spinning out of reach

Because I spent a good part of yesterday between 60-70% of personal best, I decided it was time to get a second opinion about continuing the taper. My regular GP is on vacation for another two weeks, so I saw another doctor at the practice who sometimes fills in when my GP isn't available. He was helpful in some ways and not in others.

Helpful: he was fine with my continuing the taper.

Not helpful: He gave me no clue as to how to decide when it was no longer safe or when it was at least time to seek another opinion. I can tough out a lot - I managed to tough out 45 minutes with peak flow in the 30-50% range. I don't know how far to take it, but he didn't have anything to say. Maybe I do need to wait until O2 stats drop - but if so, how long and how low. And how would I know anyway? I don't have a pulse oximeter at home? And even if I did, isn't that essentially saying that I shouldn't seek help unless I'm basically on my way to respiratory arrest? Somehow that can't be right.

Or maybe he thinks I'll just stay at 60-70% of personal best for the next two weeks? Chugging along on and off unable to function but in no serious danger? Maybe it is true. We've never taken things this far before without upping the pred when it gets this bad.

helpul or maybe not: He was willing to up the pred if I could no longer tolerate the current symptom level, but I was the one who didn't want that. If I up the pred, I have to start the taper all over again. At 35mg and 5mg/week that's another 6 weeks. But more than that, there is no guarantee that anything will be different with the next taper.

If I stay at a low dose then I can't function properly. I'm spending way too much time managing breathing or being tired than I am trying to live my life. On the other hand, unless it is proven that I'm partially steroid resistant and less likely to have side effects, then long term pred at 35mg isn't a solution either. At 35mg and up I can maintain progress. Anytime we try to go below, I just get worse and worse. It doesn't matter if we taper fast or slow: 5 days, 2 weeks, 4 weeks, 1 week per 5mg pred - it is all the same. I can't maintain healthiness.

The only other option in his mind was intravenous steroids, but he didn't want to do that unless my 02 stats had dropped or he could hear a wheeze for himself. I had different reasons for thinking it wasn't really necessary. (a) regardless of the presence or absence of wheezing, I agree that I'm managing well, even if I'm uncomfortable and tired (b) it would probably get me back up to close to personal best but without also upping the prednisone to 35mg as well, I won't be able to maintain the progress. And that takes us back to the problem with solution #1. It is a temporary fix.

Helpful: The part where he was helpful was when he recommended that I force a change in strategy. I think this hit the nail on the head and was much more useful than attempts to wish away the problem by throwing things over the psychological fence.

He suggested that I change the discussion to (a) either confirm I'm steroid resistance and can safely be on 35mg as a maintenance dose or if I'm not steroid resistant force a discussion about the long term because of how disruptive symptoms are when I'm on low doses of steroids.. or (b) focus on how I'm supposed to live my life given that my asthma (or whatever else one wants to label this) cannot be controlled without high doses of steroids.

I think he is right. I don't know if this is going to work. The pulmo has been pretty through in ruling out things, but so far has resisted focusing on understanding how I'm responding (or not) to steroids. He's still caught up in the ""is it asthma or is it not"" game. Yet we've gone down the list of asthma look alikes and nothing has panned out: Meanwhile it is very clear that steroids DO make a big difference but that they have to be at high enough doses that long term use is potentially dangerous unless I am steroid resistant and somewhat immune to the usual side effects.

The idea that I would have to live forever the way I feel today sound frightening. Life forever at this level would mean I would have to give up singing. I'm not sure how I would work. i'd be sick too often to hold a job and have on and off trouble concentrating on the days I was well enough.

Its one thing toughing something out for a few weeks so that we can have a test result. it is another thing entirely to live a half life, regularly ill from uncontrolled asthma. For *me* to make reasonable choices about trade-offs (long term steroid side effects vs. current quality of life) I need to know where I really stand as regards steroids.

Thank you for listening to my rant.

10 Replies

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  • Hiya Beth,

    Not sure I can offer many words of wisdom, but can totally sympathise!!

    I don't think your gp or pulmo would want you to risk being back where you were a few weeks ago and it's a bit of a dodgy balancing act going down to 30% of pb and not seeking help, especially with no pulse oxometer at home and from the sounds of it needing a fair amount of salbutamol.

    I am not surprised you're feeling rubbish today - pollen count crazy!! There might be something said for seeking help today if you don't pick up and perhaps it would be a ""quick fix"" to get your of up until you can see your pulmo? It's so unfair that this is having such an impact on quality of life etc

    Are they conducting tests to see if there is a degree of steroid resistance? I know it concerns me being on high doses of pred for any amount of time.

    Also just had a thought, you said that tapering doesn't seem to work and you end up flaring, have they tried tapering by say 1mg a week? I'm not medically trained, but that might be less pressure on your body?

    Look after yourself!

    Laura x

  • Hiya Beth,

    Not sure I can offer many words of wisdom, but can totally sympathise!!

    I don't think your gp or pulmo would want you to risk being back where you were a few weeks ago and it's a bit of a dodgy balancing act going down to 30% of pb and not seeking help, especially with no pulse oxometer at home and from the sounds of it needing a fair amount of salbutamol.

    Thanks. Sympathy counts for a lot right now.

    I agree, but I feel caught between a rock and a hard place. So far, I've been conservative on the salbutamol, probably more than I should.

    I don't know if I will get down to 30%. I did briefly in hospital, but it could be that exacerbaion was a one time event - a lot of things piled together. I was off systemic anti-histimines preparatory to prick testing. it just so happened that the olive trees went into bloom that same week and it turns out I'm very allergic to them (6/40 ). All this happened while an exacerbation was in progress, so basically I had an exacerbation on top of an exacerbation.

    Or maybe all the ups and downs were a side effect of the hydrocortizone?

    If it does happen again, I'm not sure what I'll do. I dread showing up at A&E without a doctor referral and even with one, I'm hesitant unless I have something more than a cough, tachycardia and blood gasses symptomatic of hyperventilation (even when breathing calmly) as an overt symptom. I can't assume a wheeze will be present because it seems to disappear long before air movement disappears.

    Even if they treat me just to make sure they didn't make a mistake, I don't enjoy being submitted to repeated attempts (and misinformation) in order to convince me that it is psycho-genic. During my hospitalization at least three diffferent doctors tried to pooh-pooh my massive ups and downs. And one went so far as to claim that it was proof that i wasn't having a real asthma attack because asthma doesn't do that.

    Toughing it out feels like the emotionally safer alternative.

  • Hi Beth,

    I have huge sympathy for you. This is intractable for you really.

    Without wanting to thread-stomp, I get your predicament in a very strong way because I'm having a hellish time figuring out how to get my meds right at the moment, between addisons and asthma. It seems like I have to choose between mild asthma and rampant diabetes or awful asthma and mild diabetes. Plus a whole buffet of serve-yourself side effects that are quite disturbing, it seems like I'm super sensitive to the steroids.

    So - here's my question, how bad are the side effects you've got from pred?

    I'm now on the equivalent of about 3-4mg of pred (for the Addison's), and I have moon face, horrendous flushing, weird periods (though they were weird many times in the past), a fantastic moustache, pretty bad hyperglycaemia (can't eat any carbs at all), mood swings, teenage spots and my hairline is trying to join up with my eyebrows. The only symptom I don't currently have is insomnia. My weight is stable but that's on a no-carb diet where I'm eating at most 1000 calories per day, so normally it would be falling off me. I was on much higher doses at the start of my treatment, but generally HC is a rapidly consumed steroid so I can't really blame those previous doses for my current side effects. This is extra alarming because any time I'm unwell I'm supposed to up my dose, including for asthma flares.

    So - assuming that you're not completely over-run with cushingoid side effects, I think you could probably hazard a good guess that you are in some way steroid resistant! I seem to be at the opposite end.

    Unless you do have the side effects but just are stoically putting up with them? The fact that your asthma is so quickly destabilised also makes me think this - because, usual I'm-not-actually-qualified disclaimers etc, I believe that between 30mg and 40mg of pred there isn't a massive difference pharmacologically, at least my resp consultant put me on 30 (with a long taper) last time and said that actually the evidence for 40 being better than 30 was probably about the specific people who are steroid-resistant. Dropping from 40 to 35 should still leave your immune system totally crushed!

    What I would definitely say is that tolerating crappy breathing as 'just how life is' is not a solution (with the exception of the tiny percentage of people for whom that is true, and who I really feel for). I can't believe how much difference it has made to my life just to have my asthma notched down a bit. It's not gone, it's still worse than it has been for most of my life, I'm still using 8-20 puffs of salbutamol per day, but my peak flow is mostly in the green zone between attacks and I have my life back, and so does my family. We just took an awesome walk up to the top of the fell where our sheep are currently - a good few miles and a climb of about 400m. Not only could I not have done that until recently, we wouldn't have dared risk it because the chances of me having a scary attack would have been too high. As it was, I hit my limit a little before the goal we had in mind (we were going to walk along the top to visit a small lake that I haven't been able to get to for 3 years now), and we turned back, but wow - breathing is FUN!

    So - I think it's great that this Doc is saying that basically you shouldn't just absorb this anymore. You need to force some movement - either confirming that 35mg of pred in your body is like 5mg to mine, or finding some other way to shift things.

    I'm not sure if they do Xolair in Israel, or even whether you are atopic enough for it to be worth it (but I remember when you got out of hospital the pollen tests you had were pretty conclusive that you were), but maybe something like that is an option?

    I think the tough thing about 'fixing' asthma is that it's so often a product of multiple causes. I needed dietary change, plus spiriva, plus gastric drugs, plus a better antihistamine (for me), plus my cortisol levels boosting. No one of those things on its own would have done the trick. (Interesting that it turned out that stress / psychology wasn't relevant after all).

    The encouragement I want to give you is that, from my experience, just being a-bit-more-stable makes a HUGE difference to quality of life. If your docs can work with you with that as a goal they might feel better about trying stuff - knowing that you're not aiming at miracle cure, just at not-so-hard.

    On the when-is-it-too-bad-to-carry-on question, I have no idea, but I really sympathise. However, something that I've learned from getting a bit better is that I wasn't exaggerating how bad it was before or being a wimp. Now that I am back to having 'normal' asthma attacks I can see how right I was to listen to my body on the occasions when I sought help. Something was really wrong! I'd say keep using the same criteria that you have been using so far, and err on the side of caution because over time we recalibrate and it tends to be towards taking more and more risk.

    Cx

  • So - here's my question, how bad are the side effects you've got from pred?... So - assuming that you're not completely over-run with cushingoid side effects, I think you could probably hazard a good guess that you are in some way steroid resistant! I seem to be at the opposite end.

    Unless you do have the side effects but just are stoically putting up with them? ,,,

    So - I think it's great that this Doc is saying that basically you shouldn't just absorb this anymore. You need to force some movement - either confirming that 35mg of pred in your body is like 5mg to mine, or finding some other way to shift things.

    The side effects are basically non-existent at doses of 30 or below - at least the ones that don't need lab tests or special measuring tools. If anything, I've lost weight these last five or six months: skirts and pants that used to fit are sliding off of me and I've had to get creative with ways to tighten skirts that aren't meant to be tightened. The only changes I've noticed is (a) a very slight rounding of my face, but only I and my closest friends can see it. (b) at higher doses (35mg and up) a shortening of my period by three to five days and some minor muscle weakness and cramping. At 40mg the facial rounding is more pronounced as well, but still nothing to write home about.

    If you looked at me, you'd never know I've been on pred doses 30mg and up non-stop for five months. In hospital they told me I looked entirely too healthy to have been on pred this long. They looked me up and they looked me down and couldn't find anything. No moon face, no buffalo hump, no edema, no mood swings, no insomnia, no, etc, etc. But strangely, they did nothing in the hospital to follow up on it and said nothing in the discharge papers about following up on it.

    There could be hidden side effects and these still need to be assessed: my latest batch of diagnostic to-dos include a dexascan (for bones), eye exam (glacoma), and a fasting glucose (diabetes). .

    So I don't think I'm underestimating it. I think it is more like you said 35mg = 5mg for me. I'm not completely steroid resistant, but it takes much more and a bit longer for the steroids to work. Based on four months of tracking medication levels and symptoms, it seems to me that the threshold dose for me is 35mg. Below that my body barely even knows it is on steroids. I suspect that is reason I decline so quickly and in the same time frame regardless of the speed of he taper.

    But suspicions aren't confirmation. to blindly take 35mg under the assumption that my body thinks it is 5mg seems like a big risk. I'd feel a lot better if I had some confirmation beyond my symptom-medication-PF log book.

    I have huge sympathy for you. This is intractable for you really.... Without wanting to thread-stomp, I get your predicament in a very strong way because I'm having a hellish time figuring out how to get my meds right at the moment, between addisons and asthma. It seems like I have to choose between mild asthma and rampant diabetes or awful asthma and mild diabetes. Plus a whole buffet of serve-yourself side effects that are quite disturbing, it seems like I'm super sensitive to the steroids.

    No thread stomping worries. I love hearing about how others feel and deal with similar conundrums. the details may be different, but the struggle itself - not so different. What a huge bummer to have such huge side effects.

    What I would definitely say is that tolerating crappy breathing as 'just how life is' is not a solution (with the exception of the tiny percentage of people for whom that is true, and who I really feel for). ...On the when-is-it-too-bad-to-carry-on question, I have no idea, but I really sympathise. However, something that I've learned from getting a bit better is that I wasn't exaggerating how bad it was before or being a wimp. Now that I am back to having 'normal' asthma attacks I can see how right I was to listen to my body on the occasions when I sought help. Something was really wrong! I'd say keep using the same criteria that you have been using so far, and err on the side of caution because over time we recalibrate and it tends to be towards taking more and more risk.

    Thanks for affirming that. I had two ah-ha moments along those lines. they are part of what is making this so difficult for me now. The first was while I was washing dishes back in January. It was the first time I had really breathed well in a very long time - not just since I got sick last October, but really in months before that. Breathing was actually energizing!!!! I thought to myself... no wonder people have the energy to do a full day of work and then come home and do things at home. If I could breathe like this all the time, I could too. For the longest time, I had been beating myself up as ""lazy"" because I couldn't do that. It was the first time I realized that breathing for me always seemed to have a small energy tax associated with it.

    The second time was at the beginning of this month when I was back at something like my real personal best for a few days. My singing voice was back: full range, full resonance. It made me so happy, I actually cried. But now all that is lost except for the small window after I use reliever and peak flow sometimes pops back up to 95% for a bit.

    As for ""wimp"": I think you come very close to describing how I feel here. i do sometimes feel like a wimp - like I just should put up with using my abs on a regular basis for tidal breathing. And if my sternum or back or ribs are sore from working so hard to breathe, well it tends to be short lived, so why make a fuss. After all, i can manage it. Who cares that from time to time really that I can't do anyhing ELSE except breathe. I feel like I have no right to complain.

    I think I'm still recovering emotionally from the hospital stay where they let me struggle for extended periods and wouldn't at first change the ventolin to PRN. (And then when they did, they forgot to tell me - so I was rationing ventolin to make sure that I had access at the times of day that I know I tend to drop the most - I have some definite diurnal rhythms to my symptoms). I feel like: if they let me struggle, then I'm supposed to struggle and that I'm the one with the problem if I think I should be using reliever when I can stlll breathe, albeit with difficulty.

    But I know somthing IS wrong. I've sung too many years. I know my instrument (my respiratory system top to bottom). I shouldn't be feeling like doing beginner vocal exercises is a major workout and it really is. I have to stop half-way thrrough sometimes because i'm physically tired doing vocal exercises that my voice teacher labelled ""chicken soup"" .

    I also know I really, really, really am trying when I blow into the peak flow meter. If my best efforts only give me 60 or 70% or worse, then SOMETHING is blocking air flow., even if it is only for a short time. i'm not making up the ups and downs. Even if they are short lived and not in any way life threatening, they are tiring,, because for those short minutes i have to work extra hard to breath. Yet I still find myself saying that ""I'm not really trying"". I wish I had more self confidence about this. It would probably make it much easier emotionally.

    it's still worse than it has been for most of my life, I'm still using 8-20 puffs of salbutamol per day, but my peak flow is mostly in the green zone between attacks and I have my life back, and so does my family.

    I hope we can find a way to make this happen for me. I worry that my pulmo isn't committed to this, but I don't really know that for a fact. Those really good days where I was back to normal happened after the last time we spoke.

    As for ventolin, I probably need to be more aggressive with the reliever, even if it means going Q2 rather than Q4 (which my regular GP has in fact OK'd on the principle that one has to live one's life). I think the ventolin issue is also a self-confidence issue. I'm forever second guessing myself about whether I really need it, especially if I need it less than four hours after I started.

    Curiouser, Thanks again for taking the time to give such an extended response. It was vey helpful.

  • HI Beth,

    I'm not sure I can offer any really useful advice here - can do sympathy though as it must be horrendous struggling like this and being so unsure about what to do - personally i find that uncertainty very hard, and not knowing what the drs are thinking or what you should be doing can also be hard - I am very frustrated not knowing what to do and with that same constant thought that I will have to 'defend' myself against being told it's psychogenic and I don't need any medication, just when I'm least able to think rationally and put my case and most in need of the medication.

    I don't seem to be as up and down as you, but I would say there is far more asthma in my life than I would like and it does affect me even when I think it doesn't - on a 'good' day on Wed I was struggling to keep up with my housemate's 'slow' walk - he does walk fast but then I used to as well and he had to really slow down to keep up. And while my life is not nearly as restricted as others' I do still feel restricted, and also uncertain about when things may flare up. I've kind of got used to thinking 'oh well, I'm not as badly off as others so I should just put up with it' but actually, even if it's not landing me in hospital and I am better than I was 2 years ago, I WOULD like to find out if there is anything more I can do to improve things and not have another flare like one I had earlier this year (for me, it was scary because I hadn't had one that bad and for that long since I had no medication at all). So in your shoes, I think I might be inclined to NOT just accept that you have to live like this, particularly when it would as you say seriously interfere with your ability to work, live nornally, sing. I am not nearly as highly trained as you vocally (hardly at all, in comparison) and don't know my voice as well but I do find it hard to sing when I am bad, and I would find it extremely hard if I became unable to sing, even just in choirs; more so if it were as big a part of my life as it is of yours.

    Basically, I don't think breathing is meant to be a big part of your life - it's meant to provide you with the means to live your life as you want! It shouldn't have to be a conscious effort - and I'm also aware that there are a few unlucky people who can't escape this, but if there are potential options I think it is worth exploring them. For me, the frustration is being told I'm fine, this is good, I'm controlled when neither I nor the official guidelines (and, tbh, my GP, I think) agree that this is the case, so I think I want to pursue it so I can find someone who seems to have a more realistic view of the picture and is acting on what is actually there rather than some rather odd and confusing ideas.

    I don't think you're a wimp for not wanting to 'put up with this'. I feel like that too, but I don't think either of us should.

    Really hoping that at some point soon, you can get someone to be helpful and to get somewhere with all this. And that you don't have another bad experience in the hospital if that's where you end up.

  • I am very frustrated not knowing what to do and with that same constant thought that I will have to 'defend' myself against being told it's psychogenic and I don't need any medication, just when I'm least able to think rationally and put my case and most in need of the medication.

    I can relate to that: I told something similar to my GP: when I'm only moderately flaring I can talk and advocate for myself, but if I'm having real difficulty, then it is hard to hold a conversation even if I could think the thoughts - though as you say, one's thoughts are much more focused on the immediate situation and what is needed to get through it, rather than analysis and debates.

    So in your shoes, I think I might be inclined to NOT just accept that you have to live like this, particularly when it would as you say seriously interfere with your ability to work, live nornally, sing. Basically, I don't think breathing is meant to be a big part of your life - it's meant to provide you with the means to live your life as you want! It shouldn't have to be a conscious effort

    This is a good point. Thank you for encouraging me. I've come to the conclusion that full functionality does need to be the treatment goal unless there is a very strong argument that says the benefits are not worth the costs. This is going to have to be discussed with my pulmo because last visit he seemed to think that whatever was going on wasn't ""reversible"" and that the level of functionality i recovered out of hospital was unachievable.

    I am also increasingly concerned that the focus on finding something 'not asthma' is distracting attention from things that do work. The fact is that the two times I've been treated as if I am having a serious exacerbation I've achieved a restoration of functionality that simply doesn't happen when I'm given 35 or 40mg pred for a week or two. I do improve on pred over time, but not nearly as much.

    Today I've been dealing with a lot of anger about this. This taper is getting harder and harder. I've found out what I wanted to know: can I manage without the pred (or something that has the same effect) and the answer is no. My asthma is not mild when the pred goes down. For the last four days on 20mg, my daily mean amplitude is 40% or more every single day - which if it were to continue long term would turn me into a type I brittle asthmatic. Each day this goes on breathing because physically harder and more painful. This is nuts and can't be right or good asthma management.

    This goes well beyond even wanting reasonable functionality.

    I really need to contact the pulmo. The person filling in for my GP is understandably reluctant to change treatment plans, but is willing to put me back on 35 or 40mg pred. I'm reluctant to give up the taper without fully understanding what will be gained from blood tests at a lower dose of pred. Also I think the pulmo needs to know he made the decision and see/hear the consequences of this taper idea before I give up on it and not just be told after the fact ""oh well, your fast taper idea didn't work and we stopped it"". If it happens after the fact, I fear he'll think we stopped for trivial reasons.

    Problem is: he is difficult to contact. Which is another issue. I really need a pulmonologist who is available when treatment plans fail.

    I don't think you're a wimp for not wanting to 'put up with this'. I feel like that too, but I don't think either of us should.

    Thanks.

    Really hoping that at some point soon, you can get someone to be helpful and to get somewhere with all this. And that you don't have another bad experience in the hospital if that's where you end up.

    Thanks.

  • Heya Beth,

    I am so sorry that you are still going through such a rough time!!

    Has your asthma always been as difficult to manage, or is it a relatively recent thing that it has gone downhill?

    With a mean PB of 40% I really do think that you need to seek help, what quality of life are you achieving? Asthma should be as close to controlled as possible for the individual and clearly you aren't achieving a high enough level of control. If you seek help (perhaps at the hospital where your pulmo is?), then what they have tried and suggested will be visible for him/her to see and therefore will know that you haven't stopped with the pred taper for no reason!!

    I can really empathise with the wanting to come off pred though, its so frustrating feeling yourself deteriorating and knowing that what will help has potentially awful side effects!

    Out of interest, does your pulmo believe that there may be some degree of COPD or other respiratory issue? I ask because asthma is supposed to be ""reversible"", so I wondered if there was any other reason for him suggesting that full functionability is not feasible? Just musing, lol!! I am not medically trained, but reckon he should be wanting you to achieve control and therefore be in the green zone the majority of the time!!

    Is there any other consultant you can demand to talk to tomorrow? This is so frustrating for you!

    Hope this gets sorted!

    Laura x

  • Mean amplitude is the difference between the high and low PF of the day, so yesterday I bounced around between a low of 50% and high of 95%. I spent most of the time with a PF of about 60%, not 40%. Sorry if I was confusing.

    60% isn't all that great, but not quite as desperate as 40%!

    COPD and pulmo: my pulmo is actually head of the hospital COPD clinic so I suspect he does tend to think that way, but there isn't any evidence to support that diagnosis. Ct scans were clear and the massive ups and downs aren't COPD type symptoms. When he said that he was commenting that he would have liked to see more of difference pre-post brochdialator given the level of resistance and presence of mild air trapping.

    But that PFT was done back in February before anyone had tried giving me a large amount of steroids for an acute attack. Since then it's been done twice and both times I made massive improvements that never happened when all I was being given was 40mg pred.

    The first time back at the end march my GP followed up with a week of 35mg pred which went down to 30mg thereafter. I was able to maintain that progress for a good 4 weeks.

    This second time I came out of hospital with an even better baseline, but only kept the progress for six days before it all started going downhill. No way to really know but I blame the rush to taper. I think that week on 35mg gave me a chance to consolidate the gains.

    In any case both give lie to the claim that my lungs are stuck at a certain level of incapacity.

    My issue with seeking help is that I feel like i'm imposing if it is outside of a scheduled appointment. I know I need to but I suspect I'll procrastinate all day about this. Today is turning out a much better day than yesterday. As long as I feel I can breathe I'll be saying ""so the storm is over, you don't *really* need to talk to him."" And then if things turn bad again I'll be kicking myself for letting another day go by without getting this resolved.

  • Update:

    Well, I gave in and called the pulmonologist's office and left a message. He didn't come in until today, but he did call me back. We had a very good conversation and he's referring me to the hospital's difficult asthma clinic.

    Not so good news: taper is being stopped at 20 until I meet with him for my scheduled appointment in ten days. He doesn't want things to get worse than they are. I have mixed feelings because a part of me kind of wanted to know just what my body would do on a lower dose: would things level out at a certain point? Or would I just keep getting worse?

    I have a experimental streak that may not be entirely sensible - but the fact is I manage breathing well, so even if things would have gotten a lot harder, I don't really think I'd be in danger. Still the pulmo is probably right. Ending up in the hospital again in the land of ""no wheeze, no asthma"" is not my idea of fun.

    Some good things I learned:

    * he's also aware that the internists at the hospital are stuck in the 'no wheeze-no asthma"" school of thought.

    * he assured me he is not in that school of thought and that it is not uncommon for wheezes to disappear (without silent chest) when symptoms get worse.

    * he assured me that the rapid taper was only to get me off pred and wasn't meant as denial that I had real breathing problems: the hospital discharge papers had also suggested a rapid taper, but their reasoning was that I wasn't really asthmatic , so it was good to hear that he didn't have some sort of ""not really asthma"" agenda. Over the last 20 years every time a doctor has tried to treat me as non asthmatic, I just stay sick or get worse.

    * keeping logs does help as do asserting ""I've been monitoring peak flow for 20 years, I think I know what effort is""

    At first he tried to tell me that while he believe me about the symptoms, there was no objective evidence supporting the severity of symptoms I was experiencing. When I heard that I was thinking 'mah pitom' (hebrew expression that is hard to translate, but is roughly equivalent to a socially acceptable and polite version of WTF).

    so I listed out the things I thought counted as ""objective"" in favor both of asthma and things getting increasingly out of control

    * statistically significant reversibility on the February PFT

    * the fact that the PFT couldn't be used to measure severity because that was a day of mild symptoms

    * that my peak flow measurements ought to count as objective given that I've been measuring PF on and off for 20 years and should know by now what 'effort' is.

    * that for two of the past three nights I've woken with difficult and painful breathing and my peak flow had dropped below 40% of PB

    *that for 6 of the last 8 days, variability has been 40% or more, and for 4 of the last 8 it has been more than 50%

    I think maybe until I mentioned the variablity, he was thinking of j""objective evidence of severity"" in terms of permanent air way remodelling which i clearly don't have based on my March lung CT scan. Hardly surprising given that his research and practice specialties are lung cancrer and COPD.

    I also think we are in agreement that even though this is aathma, it isn't a simple kind of asthma. I'm not sure exactly what he is thinking, but sense is that there is a mix of intrensic and extrensic asthma. It seems like I have very different sorts of reactions to different triggers: some cause a slow burn and gradual worsening of symptoms. Some cause my lungs to get very twitchy and go up and down a lot. I suppose we'll talk more during my next appointment June 10.

    I must have made my point because that was when he decided I should be referred to the difficult asthma clinic. He also thinks I need to be seen sooner rather than later, and told me that if they can't fit me in within the next two weeks that I should leave a message and he will call the professor in charge of it personally.

    I'm feeling very good about the referral.

    I feel like we're finally making progress. He's done a good job of ruling out all of the look alike asthma things, so what's left is treating this as asthma: i.e. that mess of conditions that involve reversible or partially reversible and/or intermittent airway obstruction.

  • Ahh Beth, I am soo glad that he took things seriously!! Nothing helps more than feeling as though you are being listened to and not dismissed!

    Its also good that you see him soon and will hopefully have an appointment elsewhere soon too! You want to get some proper control!!

    Hpw are you feeling today? Settling down at all? I agree that the staying where you are on a pred taper is frustrating!! You don't want anything else than to reduce as much as and as quick as possible!!

    Look after yourself!!

    Laura x

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