Two steps forward and one back

Hi all,

Sorry if this turns into a bit of a moan but I feel like I am at a bit of a dead end asthma wise when I know it should not be this way.

For those who don't know, basically, I have had asthma for over 25 years (since I was 2) and have been up and down the treatment ladder including being on maintenance pred when I was a teen and being very well controlled about eight years ago (Clenil and Bricanyl). Over the past few years, every time I get hayfever or a cold my asthma kicks off and each time it gets a bit worse (I have always struggled with post nasal drip) so my treatment has been stepped up. Since last October, I have almost always been struggling asthma wise and was re-referred to the respiratory cons last January. It took four months for this appointment and I managed to just 'get by' on a lot of reliever and some need for pred.

The problem is that I have had three appointments with my cons during which I have tried and stopped Symbicort SMART, changed to an MDI Seretide (to make sure enough was getting into my lungs), tried Omnaprozale which ruled out reflux and started Atrovent. I have noticed that my diagnosis has changed from asthma to persistent asthma - cough predominant (don't know how significant this is) and tests results suggest allergic asthma. I have also had an appointment with physio which wasn't particularly helpful and am waiting for them to follow this up with a phone call (I have posted separately about this). I have also tried an air purifier and allergy relief from Lloyds as well as taking precautions to avoid triggers. As the title of the post suggests, I feel that each of these changes (and changes to my hayfever meds) have helped but it feels that each time I go two steps forward there is one step back. Last week, I described this as climbing a ladder so that each one gets one step further up the ladder but I am not yet at the top.

I was feeling optimistic about last weeks appointment as I feel that Atrovent has helped and I am not using my Bricanyl as much. My spirometry was normal and I was discharged. At the time I felt quite happy about this (although a little confused) but now the fact that I was discharged has upset me - is this as good as it will get? I have been on holiday from work for the past two weeks and so have been taking it very easy (not going outside if pollen count is high and a lot of sitting doing very easy work) which, on reflection, may have contributed to feeling better. However, yesterday I walked a mile into town and went shopping which really made me struggle so am back up on 12 puffs of Bricanyl, low pf and waking up in the night.

Today I received the letter from the hospital which should have given my GP a list of things to try (Flixotide for extra ICS during exacerbations, Intal, possible referral to immunologists for desensitisation but my history of anaphylaxis may prevent this or consider Theophylline which has constantly come up but they are reluctant to use as I am naturally tachycardic) but is actually quite vague and full of reasons not to try them.

I am not sure where to go to next. My GP said a long time ago that I am out of his comfort zone and many of the other GPs at the surgery are only looking for a wheeze. I have seen my asthma nurse every week for the past month (although not for asthma last week) and she can be very hit and miss. Again I think she is only looking for a wheeze but her attitude when I told her that I had been discharged was well there is probably nothing else they can do. The adviceline nurse thought I had been undertreated with pred and so I printed out the info from the website which she talked me through but the asthma nurse was quite put out by this has my chest has always been clear and SATs normal so I do not need pred (ignoring my low pf). Do I just need accept that in order to become asthma free then I can't be as active as I would like (I am currently doing less that when my asthma was severe and I was regularly in hospital)? The other option is to carry on taking a lot of reliever but this makes my asthma nurse concerned about my heart rate and my cons concerned about it becoming less effective. I am not having major attacks at the moment and have only been recently admitted due to allergic reactions (with a bit of asthma thrown in). I know I need to see my GP but I fear I may be sent away again with no answers.

Sorry for such a long and probably incoherent post (I really don't mean to moan) - just feeling a little unsure/concerned at the moment. Has anyone got any experience/advice on dealing with this type of asthma or how I can approach the GPs? (I have read in a recent post about the benefits of going in knowledgeable so want to give this a try).

Many thanks

21 Replies

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  • Hi Kayla, I cant help with much of your post, but just wanted to pick up on the reflux thing. It really frustrates me when I hear 'omeprazole has ruled out reflux' and I wish doctors would explain this better. Omeprazole does NOT prevent reflux - or stop it. It simply reduces the acidity of whats in your stomach, but those stomach contents can (and do) still reflux and potentially enter your lungs and cause asthma symptoms or aspiration pneumonia (wheeze, shortness of breath, infection). I have taken two omeprazole twice daily and still been admitted for aspiration pneumonia when reflux has entered my lungs, thus making my asthma terrible.

    My asthma is now the best it has been in four years, and this has been by finally recognising that reflux has indeed been the biggest issue (even when on 4 omeprazole a day!). I do not get any symptoms of reflux aside from bad asthma. I now sleep sitting up, never lie flat, and ensure I dont have food or drink for a couple of hours before bed. This has totally turned my asthma around, and my recent reflux study showed that these preventative measures were working - which fits in with the clinical picture. This increased stability has also improved my ability to cope with pollen, my biggest trigger as my lungs have been in a better state to start with.

    My lungs are still crap - thats not going to change, but they are much much more stable with those practical measures and I havent had a bad attack in the last six months (compared to the previous six months of barely getting off the sofa).

    Lynda :)

  • I was feeling optimistic about last weeks appointment as I feel that Atrovent has helped and I am not using my Bricanyl as much. My spirometry was normal and I was discharged...yesterday I walked a mile into town and went shopping which really made me struggle so am back up on 12 puffs of Bricanyl, low pf and waking up in the night.

    Sometimes I feel like there is a huge disconnect between the treatment we get and the published guidelines, even among people one would hope knew better, e.g. general pulmonologists and asthma consultants.

    I thought the goal in current asthma management was supposed to be control? Looking at the various asthma guidelines (US, UK, GINA), control is a lot more than FEV1 predicted or being within 80-100% of personal best PF. For example the Global Initiative for Asthma (GINA)* defines control as

    * daytime symptoms < 2x a week

    * no limitation of activities

    * no nocturnal symptoms

    * need for reliever < 2x a week

    * normal PEF or FEV1

    Partial control is ""no"" to 1-2 items above. Poor control is ""no"" to 3 or more items above. (Taken from ginasthma.org/documents/1 ).

    *GINA is a joint project of the National Heart Lung and Blood Institute (NHLBI-USA) and the World Health Organization. See ginasthma.org/ .

    The BTS/NHS guidelines (http://www.brit-thoracic.org.uk/Portals/0/Guidelines/AsthmaGuidelines/sign101%20Jan%202012.pdf ) specify a variety of different ways to monitor asthma treatment and control. The list of things considered is similar to the above list - the main thing is that they also include much more than spirometry to monitor asthma.

    I don't think you are wrong to be expecting more, or at least expecting an explanation of why more isn't being done. After all, it is your health and it is impacting your life!

    I haven't been ""discharged"", but I find myself asking a similar question. I'm stable if by stable one means no acute flares that are beyond what can be handled at home. However, no one could even remotely say I'm controlled. I fail on all 5 of the categories if one includes PEF during excerbations rather than just lab FEV1 and 4/5 otherwise (we have yet to capture my FEV1 in the lab during an exacerbation).

    I wonder how hard I should be looking for a solution and how much I just need to adjust my life to the reality of poor control. One nice thing the GINA guideline does is that it separates out the notions of severity and risk. Severity is defined as poor control after having exhausted all of the relatively risk free asthma treatments (ICS, LABA, monolucast, etc). Risk on the other hand is defined as being prone to life threatening attacks.

    The distinction highlights a problem I think many of us with poor control, but low risk face. Asthma is severe for us because without control it impacts our life and choice of activities in very big ways. For example, yesterday I wanted to revise some material on corporate financial management, but breathing was so difficult (I spent a good part of the day below 60% even after ventolin) that it was hard to concentrate. Needless to say, not much got done even though the activity didn't involve running about.

    The current batch of low risk solutions don't work for us the way we need them too. Long term maintenance doses of prednisone and various other second line treatments are gambles that could eventually cause us more problems than the asthma, or so it is thought. The most that can be done for us is finding and treating exacerbating factors, or else helping us learn to live with symptoms.

    My sense is that specialists do a fairly good job of looking for exacerbating factors. Given the complaints I see here, I think they fail miserably in counselling us when it turns out that there are no good solutions. I know my pulmonologist does. All too often they leave us feeling dismissed as if nothing was really wrong. What I would like to see is

    * the cons explaining that we're up against a risk tradeoff

    * even better: include me in the decision about whether the impact on my life justifies the risk of treatment such-and-such

    * acknowledge that the problem isn't with us, the patient, but rather the current state of medicine.

    * acknowledge that one is in fact living with a difficult and disabling condition because of the lack of treatments.

    * offer support to learn how to live better with illness -- how about a referral to an occupational therapist who specializes in helping uncontrolled asthmatics minimize the impact on their life? Is there even such a thing as an occupational therapist that specilizes in helping uncontrolled asthmatics cope

    To a certain extent, I think we do a bit of the last one here on the forum. There was a recent thread about full time jobs and asthma. A while back there were a few posts on how to manage medication schedules. There have been discussions about pacing oneself, what to do while sofa surfing, and various other topics. But it would be nice to have some formal recognition from our doctors of the fact that we even need to have these sorts of discussions.

  • Thank you both for your replies.

    Lynda - I do sleep at an angle (the top of the bed is propped up) and have done for many years but this is due to my bad post nasal drip rather than reflux. I also don't eat or drink close to bedtime as this makes it hard for me to sleep. To be fair, the doctors gave Omeprazole a good go before deciding to stop it - 2 months which is much longer than they usually give things.

    I thought the goal in current asthma management was supposed to be control? Looking at the various asthma guidelines (US, UK, GINA), control is a lot more than FEV1 predicted or being within 80-100% of personal best PF. For example the Global Initiative for Asthma (GINA)* defines control as

    * daytime symptoms < 2x a week

    * no limitation of activities

    * no nocturnal symptoms

    * need for reliever < 2x a week

    * normal PEF or FEV1

    Partial control is ""no"" to 1-2 items above. Poor control is ""no"" to 3 or more items above. (Taken from ginasthma.org/documents/1 ).

    *GINA is a joint project of the National Heart Lung and Blood Institute (NHLBI-USA) and the World Health Organization. See ginasthma.org/ .

    I wonder how hard I should be looking for a solution and how much I just need to adjust my life to the reality of poor control. One nice thing the GINA guideline does is that it separates out the notions of severity and risk. Severity is defined as poor control after having exhausted all of the relatively risk free asthma treatments (ICS, LABA, monolucast, etc). Risk on the other hand is defined as being prone to life threatening attacks.

    Thank you for this information Beth - it is just what I think I need to show them at my next appointment. Before the last appointment, my FEV1 has been slightly below normal but apparently the other lung function tests show that it should be higher than predicted (if that makes sense). My pf does look like a rollercoaster and I do get low readings during exacerbations but my GPS seem to be the only ones not hung up on this and have on occasions dismissed low readings as me being lady like!

    I would answer no to all of the above pretty much all of the time since May, especially nocturnal symptoms and reliever use. The difference between severity and risk is also interesting. I am diagnosed with severe asthma (although this may be due to the fact that I was very severe and high risk in the past) but I still find I hard to be taken seriously as I rarely end up in hospital.

    I have many friends who are OTs so I might ask them if they deal with persistent asthma - could be interesting! Also agree with the need for some emotional impact it has - the only advice I have had on this was seeing a counsellor but that was from a nurse who thought I was having panic attacks (an attitude which quickly changed when she saw the hospital report with reversibility and blood test results).

    Thank you again.

  • Hello KaylaCP,

    Your post really struck a chord with me. I am going to see my GP tomorrow as I want to 'touch base' with him regarding my asthma. I have seen several other medical professionals for my asthma since I last saw him in February. The way I intend to describe my asthma is one step forward and half a step back.

    I was also suddenly discharged from the consultant February 2012 and like you, I was initially pleased and then confused. My quick discharge was partly my fault due to a miscommunication on my part. I was given a home nebuliser and it gave me my life back. I went to my last appt very excited to tell him how well the previous 3 months had gone but didn't clarify that I was using the neb 3 or 4 times a day and he didn't ask. After he had discharged me and I was beginning to feel confused, I rang his secretary to explain, the consultant rang me the next day and said I had told him I was using the neb 3 to 4 times a week! I knew this was totally untrue and we hadn't even mentioned the neb so he was confusing me with someone else but I felt if I corrected him he would think I was attention seeking and just didn't want to be discharged so kept quiet.

    It is now 18 months since this discharge and I am still getting daily symptoms, have had 2 lots of pred this year and at times have to sofa surf. I am finding it really frustrating right now, which is why I made the GP appt to have someone have an objective look at my situation. I know I can be re-referred back to the consultant at any time but I am reluctant to increase my meds. I am going to ask for a blood test to check if the uniphyllin is at a therapeutic level and my GP has mentioned changing from Symbicort 400/12 to Oxis, so I am going to ask about the dose etc.

    I know for me, my asthma is slow to calm down and the consultant did say, with difficult asthma like mine I need to only reduce my preventer after 6 months of controlled levels rather than the suggested 3 months.

    I agree with you Beth, we are each others OTs :-)

  • Hi JF and thank you for your reply.

    I was also suddenly discharged from the consultant February 2012 and like you, I was initially pleased and then confused. My quick discharge was partly my fault due to a miscommunication on my part. I was given a home nebuliser and it gave me my life back.

    I think my discharge was due to my miscommunication too but with me it was starting Atrovent which gave me more control than I have had all year. My cons knows that I am still using a fair amount of reliever and said I should be aiming for 2 puffs a day but she would be happy with up to 6. I was somewhat surprised with such a quick discharge especially as my GP is not confident in adding new medication even with the cons advice (this is what happened with the Atrovent). I also know the not wanting to ask why incase I sound like I want to be referred or on all these meds. The cons writes to the GP with things to try and I hate having to say so can we add x, y or z for exactly the same reasons. I have an appointment with my regular GP next Monday as I have several questions about the letter from the cons but think I am going to have to have to speak to a duty doctor in the morning as starting to go downhill with no obvious triggers (just have to hope it is not a no wheeze = no asthma type!)

    I hope your appointment goes ok tomorrow - it sounds like you have thought about what you want to get out from it anyway.

  • Thanks KaylaCP,

    Have you tried mentioning you are a non-wheezer before they start? I always do!

    I am confused now as my GP said there is a new inhaler with formoterol and fluticasone combined and he called it oxis but it looks like it is actually flutiform.

    That is interesting that we both could have been misinterpreted with the consultant. I think they are so overrun too that if someone says they are good, discharge is all they can think about lol, no questions asked!

    My GP doesn't really know what to do with me, which is why I go armed with ideas and he is always happy to listen and agree if he thinks it is a good idea.

    Edit: Good luck tomorrow too and next week when you see your GP.

  • I am confused now as my GP said there is a new inhaler with formoterol and fluticasone combined and he called it oxis but it looks like it is actually flutiform.

    I have learnt to start with the ""you will be lucky to hear me wheeze"" statement and the GPs and nurse who know me will say ""I will listen to your chest but we know what it will be like"". Unfortunately, as my surgery is a large city centre practice which covers 3 sites, the chances of me seeing one tomorrow will be small. I am trying to get to the point where I can suggest things to my GP but it still feels like I am wanting more meds etc. I don't think it helps that I also have a join disorder which they know little about and I end up explaining why medication has been prescribed or I have had procedures for that too. My dad was a doctor for over 40 years and also said that if I went in happy and over emphasised how good I was feeling then they would probably have discharged me!

    I think Oxis is a brand name for formoterol (ie on its own as a green inhaler). I may be wrong but I seem to remember taking it with Pulmicort a long time ago before combined inhalers were commonplace.

    Take care

  • Hi kayla, sorry to hear your feeling confused and fobbed off with your discharge, they wanted to the same for my daughter last year for a non asthma problem, actually her hearing, but I asked if she could have just one more review in 6 months. They agreed to this and after the 6 month appointment, ate keeping an eye on her because her hearing is still not 100%. I'm glad I pushed for the follow up because it took 4 months to get the first appointment, I didn't want to have to go through it all again. But at the time they were keen to discharge her.

    Oxide is the LABA, in a turbohaler, I used to take it too. I believe the flutiform is a new combination in a funky silver inhaler!

  • This is a very interesting topic Kayla - though sorry to hear you're struggling.

    I completely get the whole 'is this really the best I can expect?' Like Beth says, a lot of drs seem a lot better on the avoiding acute exacerbations than on dealing with everyday things which make life hard. In my last cons appt I said this: I said that I felt I'd been giving the imprssion of worrying about fatal attacks when I wasn't, and that it was the everyday stuff that made life hard and work especially hard (I hear you Beth on that -I've been trying to write my dissertation and apply for jobs with asthma brain, pred brai, sleep-deprived brain and pred withdrawal brain for a while now and it really does not make life easy - a lot of time is wasted.) I said that even if it's not life-threatening, constantly being in the yellow zone makes breathing hard work. I think he actually did take that on board as well and seemed to be trying to help though I know it will be a slow process - does help if I think he's got the idea.

    The GINA guidelines are interesting - thanks for linking Beth. I didn\t see the severity.risk thing specifically but I do note the sample plan does not mention PF at all and uses measures I would far rather use than PF - this includes when to start pred. Although my last cons appt was much better I still find my cons and I don't see eye to eye on his PF views, I appreciate his desire to keep me off pred and also that he pointed out objective evidence helps with others -he knows that I've been dismissed in the past and he thinks some solid numbers will help me argue against the anxiety thing (which he was pushing last time but I think I've mostly persuaded him it's NOT that). I just do not want to rely in an acute situation on PF and I think those guidelines support that.

    JF - it's so frustrating when you want to correct them but don't want to seem attention seeking isn't it? I hope your appt goes well tomorrow and you get a referral again if needed. I can understand why they would discharge if you 'seem' ok as with time pressure etc they may not probe beneath the surface. My brother was having symptoms he thought were definitely anxiety not asthma and GP agreed, but as I said if he went in saying it was probs anxiety they would likely agree with him, and with the family history he has (me and loads of others plus he had mild asthma before) he should perhaps not jump right to that because most drs are v likely to go for the anxiety dx if it's actually suggested, whereas even if that's true it could be masking something else.

    I also say I don't wheeze - I occasionally do but not often and not reliably. Both the good GPs know this and the one I saw last commented she never heard anything in my chest - though said also at least this time she could hear some air moving as the previous time she'd heard very little air movement and no wonder there was no wheeze as air needed to be moving for that! However cons doesn't think air entry is reliable as a measure even though he acknowledges a wheeze is not essential. tbh I wasn't sure WHAT his view on wheezing was in the end - seemed like he was saying wheeze UNTIL silent chest, but I've had quiet patches, 'quiet' overall, 'decreased air entry globally' and an exasperated ambo man saying he couldn't hear a wheeze but couldn't hear much else either and getting me to do all sorts to provoke more noise (mouth open, saying 99 - felt like a right idiot lol and I don't think it worked).

    THis is turning into a bit of a wander and probably repeating myself lots from other posts (sorry!) But I agree on being each other's OTs - I do appreciate the fact that this forum has several ppl like me asthma-wise as it makes me feel less odd and also a bit more inclined to stand up for myself when doubted.

  • Sorry to barge in but on the ""no-wheeze"" issue... do you mean no wheeze sound coming out of you that others can hear or no wheeze when doc listens to your chest. Everything is still very new to me and I don't think I am really a wheezer. I had a chest x-ray last year that revealed a chest infection but docs had heard a clear chest when listening to it. Also I found it weird that I hadn't really been coughing much and didn't look ill... only had x-ray as I ended up in a&e twice in 10 days. I found it weird that a chest infection could hide like that but I think thats just how my body works. I pick up bugs all the time but I only know because I am exhausted and bit of a fever rather than any symptoms such as sneezing, coughing or being sick.

    Back to the point,.. I dont think docs have ever heard wheeze even when I feel rubbish as hell and low O2 levels.

    Hope that all made sense.

  • Once again thank you for your replies. Like Philomela says, it is always good to hear about other people's experiences and it helps me to feel a little more knowledgeable even though I still have a long way to go with standing up for myself. This support has been so valuable the last few months.

    On the formal OT front, I have several friends who are OTs (the uni I went to had a big health science school) and the two I spoke to last night said they heard of any support for asthma like mine but that doesn't mean it isn't there. One has seen patients where their asthma impacts on their mental welfare and the other where asthma is very severe and limiting. I just asked out of interest!

    Unigirl - I rarely wheeze in that doctors will often hear a clear chest even though I am clearly SOB and coughing continuously. On occasions they have heard a faint wheeze right at the end of an exhale, definitely not audible to others. When this happened at OOHs I nearly did a little dance and had to explain why I was so surprised (I didn't even feel that bad just knew I was going down hill.

  • My old cons said a wheeze others can hear without listening is not an asthma wheeze (he'd not even heard it, just said it must be laryngeal). However my medic friend said at times he can hear a wheeze from where he's sitting and that it's defo not laryngeal, is expiratory and from lower airways. When bad I do get a kind of wheezy cough which can be quite musical at times - really gets raised eyebrows from that medic friend and a 'you do know you are wheezing right?' I can also hear that myself and have sometimes heard a faint noise that might not be picked up by others.

    Kayla - lol - I had same at OOH once though wasn't there next day when I ended up in hosp! Weird.

  • Philomena, the discussion of severity is in the longer version of the guidelines: ""GINA Report, Global Strategy for Asthma Management and Prevention"", pp. 23-24. See ginasthma.org/documents/4 :

    ... asthma severity involves both the severity of the underlying disease and its reponsiveness to treatment. Thus asthma could present with severe symptoms and airflow obstruction, but becomes completely controlled with low-dose treatment. In addition, severity is not a static feature of an individual patient's asthma, but may change over months or years... Asthma severity is now by consensus classified on the basis of the intensity of treatment required to achieve good asthma control. Mild asthma is asthma that can be well controlled with low intensity treatment such as low-dose inhaled glucocorticosteroids, leukotriene modifiers or cromones. Severe asthma is asthma that requires high intensity treatment, e.g. GINA step 4, to maintain good control, or where good control is not achieved despite high intensity treatment.

  • My appt didn't go brilliantly. It's the first time my GP has come across as disinterested and not really listening. I have a blood test booked to test my uniphyllin levels - asked me where I had heard about it lol.

    Bad news regarding not seeing asthma nurses at our surgery. He said they are streamlining their service and anyone with chronic asthma will be seeing them. I hope they are better trained!!

    I didn't bother asking about the flutiform inhaler cos I just wanted to get out of there as I felt like I was talking to a brick wall... sigh.

    I guess he is entitled to a bad day!

  • JF how annoying :( And when it's a usually good one it is worrying as you start thinking 'hmm is it me?' or 'has he gone to the dark side or just having a bad day?'

    Beth - thanks. Guess by those criteria then I'm severe, though find it hard to get my head round as on others I'm moderate and tbh I think of myself as moderate but poorly controlled (actually, according to those guidelines, completely uncontrolled much of the time, and partially in my 'good' periods).

    I think someone above was saying about how the guidelines are there but often aren't followed - very true, I tend to wait well beyond the AUK ones for getting help, and hear all sorts of conflicting things which is very confusing and frustrating. it's particularly annoying when you're made to feel like a hypochondriac even though you KNOW you are backed up by these guidelines!

  • JF - Sorry to hear about your appointment. I think you were probably right to leave the Flutiform for today. Will you be going back? As you say, the doctor was probably having a bad day, especially if you have got on well with them before. Was it a surprise that they need to check your uniphyllin levels?

    My surgery make me see the asthma nurse. I have the regular asthma check even though it really isn't tailored for more severe asthma and I am often given appointments with them if I mention it is for asthma. I have hit and miss appointments with them to be honest. One questioned whether I had asthma at all and suggested I had counselling to deal with stress (the appointment was to discuss the lung function and blood tests I had done at the hospital which all point to allergic asthma). I will not see her again due to her attitude and the implications she made that I was just seeing every doctor/nurse in the hope that someone will tell me what I want to hear. Another says she cannot deal with more complex asthma and so has to ask a doctor and then phone me back. It has taken some time but I have started to build a positive relationship with the other asthma nurse (it is a large surgery) and, while she can get a bit hung up on wheeze, is excellent at the emotional side and seems to keep quite up to date with treatment options. She was the one who suggested changing my nasal spray which really helped to improve my hayfever and then said that if they ever ry to take it away from me (it is expensive apparently) to say I will be on their doorstep everyday without! I have a phone consultation with her tomorrow morning as the doctor I saw today didn't really know what to do.

    Sorry I'm rambling - little sleep and a lot of reliever! I suppose what I am trying to say is that, although I have had negative experiences of asthma nurses in the past, I am starting to build a relationship with one of them and they can sometimes make some useful suggestions.

  • Thanks for your reply KaylaCP. I have been seeing him for 7 years and he has never been like this before, just when I needed some support too. I requested the blood test. Because he doesn't really know what to do with me asthma-wise, I tend to ask lol.

    Regarding asthma nurses, I have had really good to really awful and I don't want to waste my precious time seeing one anymore just to come away stressed and having learned nothing new. I did stick to my guns and spoke about my last disastrous asthma nurse appt with him, so probably made his day worse.

    Sorry to take over your post KaylaCP, I'm just feeling a bit down and frustrated with my lungs right now. Usually I can dig deep for patience (after 26 years of this) but my patience pot is empty.

    Thanks for reading :-)

  • Sorry to take over your post KaylaCP, I'm just feeling a bit down and frustrated with my lungs right now. Usually I can dig deep for patience (after 26 years of this) but my patience pot is empty.

    quote]

    No need to apologise JF - the main reason I wrote the original post in the first place was because I am currently feeling really frustrated with the should I demand more or just accept this is the way it is? I was also diagnosed over 25 years ago and having asthma is all I have ever known but it is really getting me down at the moment even though it has been a lot worse risk wise (I love how Beth's post separates risk and severity as this totally describes how many asthma has changed recently). I am so glad I found this site as it is such valuable support in so many ways.

    Hoping it starts to pick up again soon.

    Take care.

  • Just thought I would update as I have seen a lovely doctor today even though my chest was 'clearish' (apparently there wasn't a wheeze but it did sound tight).

    After the doctor yesterday couldn't hear anything, the asthma nurse phoned this morning to see how things were going and said I probably needed to be seen today. The only appointment was with a doctor I have never seen as they are based at another surgery across town. I think the appointment went so well because she was willing to listen but also I have become more confident at saying this is how my asthma presents. I also used the terms severity and risk which she seemed to like (once again thank you Beth). Anyway after a discussion and examination, pf etc in which she really listened, she said she wasn't sure what to do as I am meant to add Flixotide but she said it was probably past that now and some pred was probably needed. She then asked me what I felt about this and what dose I think I should have! This was before explaining that it is not that she doesn't know how to prescribe it but that I probably have a good idea about how I feel and what I need. Wow - a doc who listens and asks for my opinions. She also said that I should probably have some pred at home as (although not ideal) it looks like I will continue to need it fairly regularly.

  • That is all so good to hear KaylaCP, I hope the pred knocks it on the head!

  • Glad to hear you had a good appointment.

    A few weeks ago I showed up at an appointment SOB on talking and with a heart rate that was higher than he wanted (I think it was 90 by my counting, he estimated closer to 110). My GP did the same thing: told me that I knew what worked for me better than he did, so what would I recommend. I think he wanted me to go up on the prednisone, but I didn't want to since I'm trying very hard to taper and would like to have a bit of a pred break before cold and flu season make my lungs go crazy again.

    It was really refreshing to be asked for my opinion.

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