Dealing with Multiple Doctors

Last week I had a severe flare that put me in the hospital. In the afterrmath both my pulmonologist and the hospital wanted me to go down to 30mg after leaving the hospital and then do a fast taper (5mg/week).

My GP's recommendation was to stay at 40mg, make sure things were stable, and then consider going down. However, he was fine when I told him, I'd like to go with the 30mg and try the fast taper if I'm stable after a week.

Well, I'm not so stable. It appears I'm in the early stages of an exacerbation that is getting progressively worse, yet again. I expect when i talk to the GP tomorrow he will want to up the pred to 40mg. At the very least he will likely recommend holding off on the taper to 25mg. Personally, I think if my GP does recommend 40mg, he will be making the right decision.

BUT

I'm concerned though because it usually takes a week once an exacerbation starts to get me stable again, so there is a significant liklihood that even if I do up the pred to 40mg, I could end up in A&E again at my wonderful ""no wheeze, no asthma"" local hospital. If I am on 40mg and flare and end up at A&E, I'm concerned they will think I'm just disregarding the hospital advice. this is all the more a problem because the pulmonologist is also on board with the fast taper. He works at the hospital and would be the likely advocate on my behalf against the ""no wheeze, no asthma, so it must be in your head crowd"".

The pulmo is confused because my ABGs didn't show a drop in O2 and because of that is still on the fence about what the diagnosis should be. He knows PF was very, very up and down (ranging up and down from 30% to 90% and back down again tto 50% and then back up again) over the course of only a few hours. I'm fairly sure though that he thinks the blood gases (3 from veings, 1 from artery) were taken at my low points when in fact all of them were taken at points where PF happened to be in the 75-90% of personal best range.

Not upping the pred is likely to make my life suck without any reasonable expectation of stability within a week or so. In the meantime my life is going to be much more difficult. I was feeling REALLY well after the hospital and I so very much don't want to lose it.

First two-three days, I was doing 450 on waking and hitting 480 during the day without help from ventolin at all. This is literally the best I've been in 8 months. In terms of quality of life rather than numbers, this made a BIG difference. The resonance returned to my singing voice (which when healthy has lots of overtones) , my lower notes below middle C returned, and I could sing nearly my full range (3 octives and a fifth out of a normal range of four octaves). No coughing. Exercise easy. Simple tasks like scubbing stoves no longer made me SOB. was able to run multiple errands without getting wiped out. Life was GOOD.

.

The last four days things have gradually gotten worse: Pre-ventolin PF has dropped to 75% of personal best. Ventolin does make significant improvements, but I can't get to personal best anymore even with ventoline. post-ventolin is now going up to only 450 (94% of personal best) and that only lasts for maybe the first hour or two before it starts falling down to pre-ventolin levels. And each time it drops down, the preventolin level has been going lower and lower.

Needless to say I'm using a lot more ventolin than I was when I left the hospital (3 nebs + 2 incidents of 2 puffs each by 9pm today). I spent most of today resting in bed. I'm coughing again and getting tired easily. I'm back to planning activities around my few good hours, rather than just being able to do things.

Of course, it is always possible tomorrow I'll wake up and start blowing 480 again: Asthma can be fickle that way. But even if I do, the question of whose advice to take remains in force. Even if it isn't an issue tomorrow, it might be in a few days.

If my asthma is going to continue to be this hard to control, I need to have the local hospital and my pulmonologist on my side, so I don't want to alienate them. As I see it, having the hospital and my pulmonologist be responsive is as much 'taking care of myself"" as making sure my quality of life is as good as possible.

I'm finding doctors tend to get on board much more easily if they feel they've been calling the shots and things still don't work. That's hardly surprising: medicine is a high stress career with potentially serious outcomes. The best emotional defense any human being (parent, manager, doctor, other) has in the case of failure to prevent a bad outcome is the realization that they really and truly made the best decision they knew how, even if it later turns out wrong. I don't begrudge them that need if it will help me in the long run.

i would be grateful for any thoughts, feedback, ideas, personal experience about how to negotiate this situation.

Many thanks in advance,

beth

11 Replies

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  • Heya Beth,

    So sorry to hear that things aren't going well again!

    I understand why at the hospital they wld rather you not be on long term 40mg of pred and also why you want to reduce it too, what I don't understand is why they would want you to reduce by 10mg after such a serious flare, especially as you were already on 40mg. I think personally I would see gp on mon and take their advice , probably go back up - sure this is the last thing you want to do, its horrible stuff!! But you don't want to end up back in hospital!!

    I can't imagine the pulmonologist being unhappy about you going up, I am sure his main concern will be to keep you from being in the state you were in a couple of weeks ago - he saw you at your worse and won't want you to end up back there. Can you see your gp mon and then also contact pulmo and explain what is happening?

    Are you under a consultant? I am assuming you are! Is he the same person as the pulmo? Could you request an appointment? Sorry if I am rambling and not helping - I have only just been referred, so not sure how it all works!!

    I can totally sympathise with the 'no wheeze, no asthms attack' , its the last thing you want when really illl.

    When you say about not wanting to alienate the pulmo and local hospital, I am sure that this won't happen - their main concern will be your quality of life and they are there to help you to do this, not to make you worry about something else on top of asthma!!

    Sorry for rambling and not making sense!!

    Feel better soon!

    Laura :-)

  • Sorry to hear you've not been well again Beth -must be very frustrating.

    Hmm, this is a difficult one isn't it! I wish I knew the answer - will be following with interest as I've had the same thing with different opinions from various people. Perhaps I was putting the consultant's back up by getting pred when he didn't want me to, but on the other hand a) his approach was always for me just to wait it out even when I was getting worse so I didn't feel 'do nothing' was an option and b) he wanted me to see my GP so I don't really think that he could complain about the GP's decision to give me pred - if he had wanted something else, he should have said.

    I can see your point about not wanting to annoy the hospital drs and your pulmonologist. On the other hand, they don't see you nearly as much as your GP, and they probably haven't seen your 'range' ie what you're like when you're well, which I think makes it harder to understand the difference - perhaps they think it's not so bad for you when in fact if they saw you on a good day they would be really struck by how much worse you were when they saw you.

    I'm wondering if they would listen if you explained that you started off on the 30mg and fast taper, but that your GP wants you to be on 40mg now that you're worse. I think that's reasonable from both POVs - you listened to what they had to say, you did it but things have changed and your GP now feels you need more - it's not you disregarding their advice, it's another medical professional making a decision about his patient. They may disagree with him, but if you frame it like that and they do listen then it should be clear that you were trying to take what they said on board (if they don't listen at all then I guess you'd need to be thinking of how you can get things across to them - that I WISH i knew the answer to!)

    I had this kind of approach after my last cons appt. I didn't agree with his view that my asthma was well controlled and that I didn't need all the medication I'm on, particularly since he'd kind of undermined that by telling me to expect flares which IMO aren't really something you should 'expect' if asthma is under control. But I tried - I was fed up with the Symbicort side effects at that point (they always seem to be more prominent during a flare-up despite the dose being the same) and I tried dropping to 2 puffs. Result - I had been getting better and I started sliding right back down again. Clearly not the best idea, but I gave it a week and had then had enough - I was seeing my GP so I just explained and said 'please can I go back up?' and he was fine with it (I still can't work out if my cons knew/realised that I'd asked the CNS at his hosptal about going up to 3 in the first place - I wonder if he thought I'd just decided on my own).

    I've also been trying to hold off taking my inhaler immediately because the cons thinks I take it too much - again, I don't entirely agree in this instance, firstly because I had already been doing that (I don't think he believed me though) and secondly because I have very good days when I hardly need it and days when I need it a lot more, and I don't think just doing breathing exercises is going to change this a huge amount though it may stop some doses. But I want to show I tried!

    I don't know if this is helpful to you, but it's my attempt to 'show willing'. In hindsight I don't know if I'd have done the same. I do think it's important to get on board with drs as you say and not just look like you're ignoring them; I've found that a couple of drs in particular (my former cons who I'm hoping to go back to and my GP) have been rather frustratingly right about things, so I do try to give what drs in general say a chance even if I'm initially sceptical. However, there is a limit: I don't think that dropping down the Symbicort when I did, barely out of a big flare, was a sensible idea and at the very least I think the cons should have been more clear about perhaps waiting until I was feeling better first. He may have a point about the breathing exercises at times but again, there are still times when I really do need Ventolin and I'm not going to just sit there thinking 'oh I shouldn't take it because the consultant doesn't think I need it'. I've also had times where I felt like nothing I could say or do would make any difference and every appt was the same (if your cons seems like they don't believe that you've tried, it's hard to see the point at times.) I really hope your pulmo doesn't do that though - he sounds more like he just doesn't have the info or know you well enough yet, unlike your GP.

    I hope this ramble helps - just from my own experiences, I can understand your dilemma but I also think that you don't want to go too far with trying to show willing and end up worse as a result! Definitely think the way to go is up to 40mg depending what GP says. avoid hospital if possible but explain what happened to pulmo - I would hope he'd understand he can't be there all the time and your GP is going to be the one who needs to decide if you should up pred right now.

    Or there's always my preferred solution to these 'diplomatic' problems - lock them all in a room and don't let them come out for anything till they have a workable plan for you ;)

    Hope you feel better soon and don't end up back with the 'no-wheeze crowd'.

  • My theory with pred, is that if something has changed (such as deterioration in this case) then go with the most recent advice, as long as it doesnt seem ridiculous. If you get ridiculous advice try and get hold of the most senior person.

    I have had days where after taking my morning dose i have had three different instructions about what dose to take the next day! And my theory is that I make sure that i tell everyone involved all the advice ive been given, then they can use there clinical judgement to decide if the situation has changed significantly enough to warrant new advice.

    So for example, the three advice day was GP, consultant, A&E - i rang GP who said as PF was down i should increase from 30mg-40mg instead of reducing to 25mg, this was when i had been told to ring the day before any reduction. Then got through a letter from cons from the week before saying not to reduce by 5mg a week, to drop straight down to 10mg and reduce from there, so i rang to check as they clearly had reason to give that advice, and they are more senior to gp and frankly id do anything to stop pred most times, they told me that they didnt think i responded amazingly to pred unless on a really high dose, and they didnt want me on that at my age so to try to reduce but to ring back if there was a problem, (but they use off values for PF, as in they use 75% of my best as my best), anyway as i was deteriorating as GP had said i ended up in A&E that night, who said to stick with 30mg for another week. Basically when i had recovered enough to get out of resus and therefore was able to move up to the ward i explained the entire thought process to the doc on the ward, who said to stick with 30mg or increase to 40mg, she said she could understand me not wanting to increase again, although she would have if i hadnt had a preference! That meant that when i saw my cons another day and he queried why i was still on a higher dose (30mg still as had been told to do that for a week) i was able to say that i didnt want to ignore medical advice, and had gone with A&Es instructions as when he had given me that advice earlier in the day it was before i had ended up in hospital, and that i thought that was significant information that could well have influenced his decision to drop my dose.

    I think its all about using the ""i am NOT medically trained, i can only follow advice i have been given by doctors, i explained the situation and X still felt that Y was appropriate and so that is what i did"" and then if your pulminologist thinks you were given poor advice, it was not you that did it, it was instructions, and you just followed them. As long as you are open to doing what the pulminologist says if they change the advice again i see no reason at all that they would blame you for doing as you were told! It also helps to explain that you don't want to do things AMA because you are worried that you will be treated differently if you do - i am very careful to follow instructions as i think that at my age they seem to think i dont take all my meds properly etc. so i am extra cautious to ensure im doing the right thing!

    You could even ask your GP to let them know thats what he/she adviced? or could you ring and let them know (maybe in a couple of days when you're feeling better)

    Did they do anything different in hospital that explains why you were so well? in a way that could be continued at home (like IV aminophylinne and you could be on tablets etc) I know that horrible feeling when things are going downhill and there is nothing you can do, its so horrible and scary to be so out of control. I really hope that GP can up your pred and that it'll really help!!

    Hope you feel good soon and manage to negotiate this tricky situation.

  • Many thanks for each of your thoughts and advice. It has all been very helpful. Sorry not to be more specific: Typing on a mobile phone isn't one of my strong points.

    On Sunday things improved a bit so GP was fine with continuing the taper. Today was not so great so I'm back up from 25 to 30 for the next two days. Grrrr.

  • Last week I had a severe flare that put me in the hospital. In the afterrmath both my pulmonologist and the hospital wanted me to go down to 30mg after leaving the hospital and then do a fast taper (5mg/week).

    My GP's recommendation was to stay at 40mg, make sure things were stable, and then consider going down. However, he was fine when I told him, I'd like to go with the 30mg and try the fast taper if I'm stable after a week.

    Well, I'm not so stable. It appears I'm in the early stages of an exacerbation that is getting progressively worse, yet again. I expect when i talk to the GP tomorrow he will want to up the pred to 40mg. At the very least he will likely recommend holding off on the taper to 25mg. Personally, I think if my GP does recommend 40mg, he will be making the right decision.

    BUT

    I'm concerned though because it usually takes a week once an exacerbation starts to get me stable again, so there is a significant liklihood that even if I do up the pred to 40mg, I could end up in A&E again at my wonderful ""no wheeze, no asthma"" local hospital. If I am on 40mg and flare and end up at A&E, I'm concerned they will think I'm just disregarding the hospital advice. this is all the more a problem because the pulmonologist is also on board with the fast taper. He works at the hospital and would be the likely advocate on my behalf against the ""no wheeze, no asthma, so it must be in your head crowd"".

    The pulmo is confused because my ABGs didn't show a drop in O2 and because of that is still on the fence about what the diagnosis should be. He knows PF was very, very up and down (ranging up and down from 30% to 90% and back down again tto 50% and then back up again) over the course of only a few hours. I'm fairly sure though that he thinks the blood gases (3 from veings, 1 from artery) were taken at my low points when in fact all of them were taken at points where PF happened to be in the 75-90% of personal best range.

    Not upping the pred is likely to make my life suck without any reasonable expectation of stability within a week or so. In the meantime my life is going to be much more difficult. I was feeling REALLY well after the hospital and I so very much don't want to lose it.

    First two-three days, I was doing 450 on waking and hitting 480 during the day without help from ventolin at all. This is literally the best I've been in 8 months. In terms of quality of life rather than numbers, this made a BIG difference. The resonance returned to my singing voice (which when healthy has lots of overtones) , my lower notes below middle C returned, and I could sing nearly my full range (3 octives and a fifth out of a normal range of four octaves). No coughing. Exercise easy. Simple tasks like scubbing stoves no longer made me SOB. was able to run multiple errands without getting wiped out. Life was GOOD.

    .

    The last four days things have gradually gotten worse: Pre-ventolin PF has dropped to 75% of personal best. Ventolin does make significant improvements, but I can't get to personal best anymore even with ventoline. post-ventolin is now going up to only 450 (94% of personal best) and that only lasts for maybe the first hour or two before it starts falling down to pre-ventolin levels. And each time it drops down, the preventolin level has been going lower and lower.

    Needless to say I'm using a lot more ventolin than I was when I left the hospital (3 nebs + 2 incidents of 2 puffs each by 9pm today). I spent most of today resting in bed. I'm coughing again and getting tired easily. I'm back to planning activities around my few good hours, rather than just being able to do things.

    Of course, it is always possible tomorrow I'll wake up and start blowing 480 again: Asthma can be fickle that way. But even if I do, the question of whose advice to take remains in force. Even if it isn't an issue tomorrow, it might be in a few days.

    If my asthma is going to continue to be this hard to control, I need to have the local hospital and my pulmonologist on my side, so I don't want to alienate them. As I see it, having the hospital and my pulmonologist be responsive is as much 'taking care of myself"" as making sure my quality of life is as good as possible.

    I'm finding doctors tend to get on board much more easily if they feel they've been calling the shots and things still don't work. That's hardly surprising: medicine is a high stress career with potentially serious outcomes. The best emotional defense any human being (parent, manager, doctor, other) has in the case of failure to prevent a bad outcome is the realization that they really and truly made the best decision they knew how, even if it later turns out wrong. I don't begrudge them that need if it will help me in the long run.

    i would be grateful for any thoughts, feedback, ideas, personal experience about how to negotiate this situation.

    Many thanks in advance,

    beth

    hey Beth

    sorry to hear your not to well :( hope your feeling better now try and always see one gp if possible i know some times it hard but i find some gps are crap with asthma on wheezy no asthma or you on now ! or you peak flow is low take some preds i now have a gp that also has asthma her self ! wish in its self is gr8 as she understands what it is like first hand wish is better

    take care mathew :)

  • Mat, fortunately i have one GP that i see regularly. In the rare case that he is not in town, he hands things over to a second GP. Fortunately, I'm not bouncing from random GP to random GP. that would be difficult indeed!

    Today was better than yesterday, so maybe Tuesday was just a blip. I'll be discussing the taper tomorrow with my doctor. Hoping he'll agree that we should continue going down. My concern isnt just that some of the doctors involved want a fast taper. If i'm not partially steroid resistant, then i feel like I'm playing with a ticking time bomb being on so much pred for so long. I havent successfully managed to get below 20mg for nearly six months! Each time we try, some crisis occurs and the pred gets put up again.

    Even if it is a risk to continue the taper, i feel like there are questions that just can't be answered properly until we know what blood work and breathing are like on lower doses of prednisone. I had high white cell counts and low red cell counts when the hospital did blood tests.

    Also if we are at a lower starting dose, that give my doctor more options for a short term increase in prednisone. I do seem to respond better when there is a bigger leap.

    soph - i found your suggestion to play the 'not medically trained' card very helpful. Also a bit amusing to read because i suspect you could probably think circles around some of the doctors you've dealt with. But i think it is definitely the way to go. I also found your ""go with the one with most recent knowledge"" helpful. Spared my GP some argument yesterday when he told me to go up on the pred. although truth be told, the morning was miserable enough that I just didn't feel like arguing. I just wanted to feel better!

    As for what they did in hospital that made such an improvement? Hard to know definitively because there were two things I don't do at home: IV hydrocortizone and antibiotics. Since two things were different, hard to know which was the one that made the difference. My bet though is on the hydrocortisone, but of course can't know for sure. I also had a very significant improvement last month when i had to go to urgent care and was given dexicort. I suspect I do respond to steroid. I just need more than average.

    Philomena - your rambles are always helpful, if only to know that I'm not the only one with big internal debates. :-) I love the idea of locking them all in a room. If I were wealthy, I'd hire just such a room, pay for their time double if necessary, and just do it. Alas, I am not.

    None the less, someone has to be the final decision maker. At this point there are so many different doctors involved, though not all of them are involved in pred decisions. Re: pred we have hospital, pulmo, and GP. Then there is the allergist and the ENT. Now my best friend who is an optometrist wants me to see an eye doctor for a glacoma check (another possible side effect from pred). The list just gets longer.....

    The one person in all of this that is taking in the big picture and not just dealing with individual systems (upper airways, lower airways, immune system, eyes) is of course my GP. He is also the one who seems me on a regular basis - sometimes even more than once a week. Together those are good reasons for his opinion to be the deciding factor.

    Lollie88 - unfortunately the pulmo didn't see me at my worst - he was away at a conference. I also don't think he fully understands how impariing my pre-hospitalization level of functioning was. The last time I met with him, he was tring to convince me that the lower level of functioning pre-hospitalization wasn't reversable.

    I have an appointment with him in the beginning of June and I'm hoping to impress on him (a) how much progress I did make (b) if I continue to lose progress due to the taper, how much progress I lost.

    Of course, losing progress isn't a guarantee. I haven't yet gotten back to my 470/480 without ventolin, but who knows? The best outcome really would be (a) getting off pred (b) being able to maintain 470/480. It isn't the numbers that matter of course, but the way I can function when I'm able to blow such a PF. I have so much more energy and I have enough breath support to sing properly. At lower peak flows, something is sufficiently messed up that even with very good technique I have trouble singing more than two notes of a musical phrase on a single breath. After that I can sing but the lack of breath support is really obvious.

  • M

    soph - i found your suggestion to play the 'not medically trained' card very helpful. Also a bit amusing to read because i suspect you could probably think circles around some of the doctors you've dealt with. But i think it is definitely the way to go. I also found your ""go with the one with most recent knowledge"" helpful. Spared my GP some argument yesterday when he told me to go up on the pred. although truth be told, the morning was miserable enough that I just didn't feel like arguing. I just wanted to feel better!

    As for what they did in hospital that made such an improvement? Hard to know definitively because there were two things I don't do at home: IV hydrocortizone and antibiotics. Since two things were different, hard to know which was the one that made the difference. My bet though is on the hydrocortisone, but of course can't know for sure. I also had a very significant improvement last month when i had to go to urgent care and was given dexicort. I suspect I do respond to steroid. I just need more than average.

    I do find that you have to work out the right way to behave around certain people (i guess thats true in general, not just for doctors). My old cons practically had me teaching his 4th years about asthma, he called them all in to discuss me (awkwardly my primary school friends big sis was there - couldnt work out how i knew her till the end) and he gave them a specifically edited history and asked them what they'd do, and then when they'd answered he turned to me and asked what i thought of that and what i would do (my response was something along the lines of ""well, firstly does this guy hate me and want me to suffocate!?!"" to some suggestion of lowering both ICS, and pred at the same time - that guys problem was that he wasnt asking the right questions, like ""how long since you've been in hospital?"" to which the answer would have been ""about 13hrs"") and then he was testing them on three main indicators of poor asthma control and getting me to correct them! It was quite funny, but it was part of him emphasising the importance of (a) patients being educated and (b)doctors understanding that patients know an awful lot about their own condition. And yet, i *have* to play dumb around the majority of people who treat me, as they think you are pushing for specific meds, or being a hypercondriact, or worrying if you dont. It is hard, esp when i *know* they are making a mistake, often i have to subtly mention ""well - i normally take two of those tablets, is this a different type"" or ""i dont recognise that pill, what is it"" and get them to work it out on their own! much longer process than me reeling off the list of drugs and doses im on but means i get treated nicer. I learnt this after one particularily awful discharge letter where the doc had clearly misunderstood me and said ""patient was requesting IV aminophylinne, despite the fact that this was not needed"" which is NOT on any level what had happened, i had said ""am i going to have IV aminophylinne?"" becuase it was something resus had been considering, and because i am highly sensitive to it i need a lower dose than would be expected for my weight and height, i know this as a doc ODed me for 24hrs in the past, and its not something i want to experience again, he didnt waste time checking why i was asking just went into a long rant about how i shouldnt be on something i dont need! as though i dont know that!?! And things like, they were all getting stressy about my HR, and a doc had even suggested witholding salbutamol to lower it, but when i asked what it actually was she refused to tell me because ""i just needed to calm down and stop thinking about it, and that i was using far too much salbutamol"" so i measued it myself and it was 130, not actually ridiculous at all for me, i can happily get to 140 before people who know me start worrying, and so she was responding disproportionately to the situ (and asking me to decline regular medication that i had been prescribed - i did not choose to be on regular nebs 4x a day. and i got wheezy when i skipped one, and then got in trouble for skipping one, my chest probably was clear ten mins after a regular neb - that doesnt mean it was before i took it!!!)

    Glad the ""go with the most recent"" helped, its what i decided after a lot of complicated experiences and getting in trouble (i swear docs seem to think i am medically trained enough to know exactly who i should overrule, and that i am actuively trying to be ill - sigh!).

    Mt GP is also great, i have the difficulty with pred/hydrocortisone and my resp team vs my endo team, GP can sit and look at both sides, although tbh my endo doc and the good resp cons share a lot of patients (they both refer to each other so they can work together) which helps a lot!

    Have they looked into whether you have some level of adrenal insufficiency/surpression? Myself and Curiouser have both found significant improvements in our asthma since being on hydrocortisone (and that is despite me being on long term pred) as it closely mimics the cortisol our bodies no longer produce naturally, and one cymptom of uncontrolled adrenal insufficiency is asthma attackss (pretty sure i read that somewhere). I dont really understand how it works with being on long term pred as some people do take pred for adrenal insufficiency, but i deffo noticed an improvement on hydro! And that might in someway explain why you need more steroids than most? maybe? lol! i dont really understand! Not sure you can be tested while on pred though, and obvs stopping is not an option, i dont know if they can do theraputic trials of HC or if there are other tests for it, i guess short synacthin could be used if you only compare before and after, and dont look at initial starting values. Im rambling here, i have no idea, but just what my brain thinks!

    Im really tired and have literally no idea what im typing anymore! lol! hope some of it makes sense :-) i'll probably read this tommoz and just think ""what on earth.....?"" but there you go! will try to convince my lungs that lying down isnt as bad as it seems! lol! x

  • Update: Initially he wanted to keep me on 30mg for another week, but I raised the following points with him:

    a) we have a lot of questions that can't be answered without getting the pred down

    b) we are likley playing a game of ""beat the clock"" as long as I'm on doses below 35mg - I've never made it more than four weeks without a serious flare that pushes pred back up to 40mg;.

    And because my gP tends to be very cautious about lowering pred when he thinks I'm not entirely stable (not exactly surprising):

    c) my husband is going away in July and if we are goiing to take risks I'd rather do i while he is in town

    d) if it is really true that I have good enough breath control to buy myself time in case of a very serious flare, now is a good time to leverage that.

    In the end he agreed that even though it was a risk, we should keep trying to go down. So the taper continues and I'm on 25mg till Thursday. If nothing blows up by then, on Friday I'll go down to 20mg. Here's hoping.

    I do find that you have to work out the right way to behave around certain people (i guess thats true in general, not just for doctors).... i *have* to play dumb around the majority of people who treat me, as they think you are pushing for specific meds, or being a hypercondriact, or worrying if you dont. It is hard, esp when i *know* they are making a mistake, often i have to subtly mention ""well - i normally take two of those tablets, is this a different type"" or ""i dont recognise that pill, what is it"" and get them to work it out on their own! much longer process than me reeling off the list of drugs and doses im on but means i get treated nicer.

    Have they looked into whether you have some level of adrenal insufficiency/surpression?

    Gently leading people to their own conclusions is something I really need to work on: I get so frustrated when I hear someone say something stupid, especially if it is going to affect me adversely. I like your idea of leading hem through the implications of their own arguments, but I struggle though with the patience it takes to do this. Also it is hard for me to think clearly and talk at any length if I'm really struggling and figuring out what will bring someone to come to their own conclusions takes some strategizing.

    The one time I was able to do it, it did work though. My GP was feeling really frustrated and suggested we try an SSRI because maybe this was anxiety even though there was no affective/cognitive component suggestive of anxiety. His theory was that it was an ""atypical"" anxiety reaction (go figure) and maybe we should just try and see what happens. Rather than argue with him, I observed that we didn't really have a good test to tell if the SSRI was working, so how was ""try it and see"" supposed to work?. Since there weren't affective or cognitive components to evaluae didn't have affective or cognitive components we could use. I must have struck home because on his own he added that the asthma itself was so up and down that there was no way to tell whether the SSRI or something else was making the difference.

    Re: cortisol, steroids. I think they need to investigate this, as well as the possiblity of partial steroid resistance. But at the moment we don't really even know how pred is or is not affecting me. It is clear I have few if any visible side effects, but there could still be more hidden effects that can only be detected by testing. Inflammation related to asthma could be causing the high neutrophil counts, but so could pred.

    Right now, it seems that my to do list is all geared to finding out if my insides are as side effect free as my outsides. I'm supposed to get a fasting glucose blood test (diabetes can be a side effect of pred), a DEXAscan (to check for osteoporesis, another side effect), and an eye exam (glacoma is yet another possible side effect of long term pred use).

  • Good luck with the taper Beth!

    I read an article on steroid-resistance and vit-D deficiency today.

    bbc.co.uk/news/health-22570859

    No idea if that's relevant to you, but it's worth considering, as if you're not steroid-resistant then the vit-D is a good idea for the bone density issues anyway.

    Cx

  • Thank you for the link, curiouser.

    I do in fact have low vitamin D and was just recently put on 3000 (15 baby drops) a day.

    This was the suggestion of my allergist who noted the low vitamin D when I saw her for scratch tests the day after I got out of the hospital. While I was waiting for hives to grow, she called an endocrinologist colleague of hers who told her how much to prescribe.

    I knew about a correlation based study of the link between asthma and vitamin D, but correlation is not causality. This is news to me. I hadn't heard of prospective/ formal medical trials.

    Also hadn't heard of a suspegged link between steroid resistance and vitamin D, so also news to me. Thanks.

  • Thank you for the link, curiouser.

    I do in fact have low vitamin D and was just recently put on 3000 (15 baby drops) a day.

    This was the suggestion of my allergist who noted the low vitamin D when I saw her for scratch tests the day after I got out of the hospital. While I was waiting for hives to grow, she called an endocrinologist colleague of hers who told her how much to prescribe.

    I knew about a correlation based study of the link between asthma and vitamin D, but correlation is not causality. This is news to me. I hadn't heard of prospective/ formal medical trials.

    Also hadn't heard of a suspegged link between steroid resistance and vitamin D, so also news to me. Thanks.

    Glad to be useful - and I hope the correlation does turn out to be at least contribution, in your case. I doubt there are many diseases that are more multiple-cause than asthma, but if a bit of vit-D improves things even a little then it's nice to at least be going in the right direction.

    I have a couple of friends with other auto-immune-ish things who have recently been tested for vit-D, found to be deficient and had visible improvements from their supplements, so I'm hopeful for you. You seem to be at that stage where while improving things by 5% still leaves you with what most people (including past-you) would consider to be a pretty big problem, anything that makes it more manageable and makes admissions less likely is a good thing.

    Personally I've found that until the tipping-point where I became super-allergic last year, sunshine (well, visiting Spain for my holidays) certainly made my asthma better. Whether that was directly vit-D related or about relaxation, swimming, less damp air... who knows. Sadly the sunshine=pollen algorithm started to flip that relationship the other way, but I'm hopeful that now I'm on HC permanently, and my lungs are less brittle, it'll swing back in my favour.

    Take care,

    Cx

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