very worried about next cons app

Hello to everyone on this forum. I have been lurking for a year or so, just after I was first seen by cons, and have found it very informative.

If anyone is able to offer any advice or suggestions regarding how to approach things with the cons so as it does not all go wrong again.

I was diagnosed asthma in my teens, I am now 45. I remember Iwas taking a couple of types of inhalers and also a couple of ddifferent tablets too, back then. I think for a few years I must have grown out of it as I can't remember having any problems (although I do suffer from a mh problem that affects the memory). No probs then for a number of years until about 12 years ago when i gave up smoking. terestingly, during this time of no asthma symptoms I was a very heavy smoker). About 12 years ago it flared up and the nurse put me on seratide 250 2 puffs 2x day. For years this was fine. Hardly needed ventolin only 2 - 3 times month.

Then about 4-5 years ago I went downhill after a couple of really hideous chest infections. I had to take a few courses of steroids and a lot more vento. As I have a lot of probs with high anxiety symptoms due to my mh prob, the vento became intolerable and I was given brycanyl turbo. I still get a lot of shakes tremors and anxiety from using this tho.

Things got worse. Very very breathless, coughing every night, tight chest more chest infections etc. The doc referred me to a cons. Cons was nice. I was in a bad state cos my mh and explained that I had probs with bronco dilators.

He was totally fixated when I said my asthma had improved after a short break in north wales. He decided it was because I was away from the cats. I think it was because I was away on my own doing something for myself for first time in more than 12 years plus the mountain and Sea air was very beneficial. There was a cat in the hotel that belonged to the managers.

He ran through all the tests blood tests breathing tests scan. Came back I had mild bronchiectasis and allergy to cats and house dust.

Tries symbicort smart but I was shaking so bad I couldn't hold a pen and was so anxious we were suicidal with it.

So off symbi and onto budesnonide 400 plus a short steroids tablet course. All the time I was taking pef readings. 200-350 .Third apt he says pef should be 450 gives me some intal to try. Just a low dose. I took my pef continually and came back after 3 months.

I was still experiencing very bad breathlessness waking every night and having to use bricanyl a lot more. As even one puff of this stuff makes me get the terrors and shakes I can't bear to take it but have to to relieve symptoms. Not very happy as less able to function and we are already restricted due to pur mh

So as I am only on pulmicourt 400 2 puffs 2x day and turbo I had 2 questions for cons

1. I don't like being on such high dose steroids should I not also be back on a long acting bronco - what about considering one that is less anxiety causing g like spiriva?

2. Getting some benefit from intal but its not long lasting so can I increase it to 2 puffs 4 x day which is the reccomended dose?

Simples.

Waited 1 hr 45 mins to see cons so anxiety was bad ( hospitals are very anxiety provoking for us) . when I went in it was a different cons. OK. I thought, I will explain that I have a prob with mh because sometes I act strange and forget things. She was really cold. I showed her my pef chart. It varies between 200 - 350. She just glanced at it and said ""too low"".

I started with question 2 above. She looked at my notes and asked. ""Have you got rid of the cats?"". I explained that we had taken measures bit that to get rid of them would be massively disruptive toy mental health and for my family too.

She refused then to answer any further questions.

I explained about intal and being on only a starter does. She said that increasing to the standard dose would make no difference. I tried asking about the LABA's . she said you were on seretide before. This is a very good drug. No inhaler will make any difference. I am not prepared to help you unless you get rid of the cats. She looked at the nurse and said no follow up appointment.

I left in floods of tears.

Surprised to get another apt letter in the post a few days later!

So... I found out the original cons has left. The secretary said to ask for another doc at reception. But I am soon worried it will all happen again

I know some of you will judge me about the cats but we have a very difficult mh prob to manage each day as well as asthma. This woman's approach to us caused us to live indoors for 6 weeks with suicidal depression.

I have excellent mh support and manage to cope. But I have constant asthma symptoms and am exhausted with lack of sleep at night and breathless during the days.

How can I get my asthma back on track if the cons refuse to treat me?

I looked up a lot of info on the web and there are no definitive research papers clearly stating benefits of removal of pets, guidelines say ""iff possible"" and that there is no evidence .

I am so worried I don't know which way to turn.

Sorry for uber long post and thanks for any advice

4 Replies

oldestnewest
  • That consultant sounds completely useless!! If i ever build my ""Pathetic doctors/medical 'proffessionals' dungeon then i'll be sure to add her to the list!!

    Are you allergic to cats? Have they done skin prick tests or blood allergy tests (ige) on you to confirm or deny either way? I am not allergic to cats, I have two and they sleep in my bed and on my face and are all over the house, but thsts fine, becasue i'm not allergic. If you are allergic to them then yes, it would be sensible to consider re-homing them, but it is not the doctors call to make. If you were on extensive treatments already and still having symptoms then it might be the case that a consultant says ""I cannot justify any more extreme therapies/treatments at this point and the only thing at this stage likely to reduce your symptoms would be to get rid of the cats"" but they can't just refuse to treat you!! If you're allergic then I assume you're doing to obvious things to reduce the effects? Not in bedrooms, its better to have hard flooring (then can be damp cleaned, by someone else, to avoid stirring up the allergens, it can be good to have leather sofas so hair doesnt stick to the fabric, possibly keeping them out at night (with a shed or similar with a cat flap for shelter) but obviously if they are the kind of cats that can be ok with that, getting someone to comb them outside can help as well, and obviously short haired breeds tend to be better but obviously its not just 'any' cat you want!!

    Are you under the hospital team for your MH issue? It could be an idea that any MH nurses or staff you particularly get on with might be arrange someone to attend the appt with you? or your consultant might be able to write a letter to the resp clinic. This could allow the consultant to be aware of both the fact that keeping the cats is important right now for your mental safety and wellbeing and also that it is important that they handle your care with particular focus on empathy and senisitivity due to the MH problems you are likely to experience as a resut of poor care. The issue you are up against is that it is not uncommon for pts with MH problems AND resp problems to be dismissed as having panic attacks - although on that note I assume there has been investigation into this as hyperventilation can trigger asthma or even mimic it and so can be a good thing to control as well as possible if you're prone to anxiety.

    You aren't on a very high dose of steroids. As the steroids you use are inhaled this means that it will get as little as possible into your blood stream and so it mainly will stay in the lungs (where it is needed!) and have little systeic effects. I wouldnt worry about the effects of this, the effects of not breathing would be FAR more significant! People on these boards, and others, will often talk about how much they have steroids (and i've heard them referred to be a colourful array of terms) however when they do this they're almost always reffering to steroid tablets (prednisilone) which are a very good treatment for asthma in short bursts, however when used consistently for long periods of time they can have some nasty side effects.

    If you have been on seretide in the past is there any reason you have not been put on that again? It is a combination inhaler like symbicort, but it has a different bronchodilator in it and so it may ne that you just get along better with a different LABA. If neither of them work for you then, iff your mental health is stable enough it could be worth experimenting with different LABAs (or even, as you say, spiriva - although it isnt liscenced in asthme yet so it might be a job for a cons) and also bearing in mind that most side effects reduce after a couple of weeks, although obviously some things cannot be ignored for a couple of weeks! If it turns out that LABAs and your head dont get on then there is a drug called montelukast which is often used with great effect in asthma - particularily allergic asthma - and has a fairly low side effect profile, although it is worth considering that occasionally people do get nasty mental side effects and so for you that might be a risk.

    What is the highest peak flow you have ever achieved? Its not really about the number you get, its much more about how much variation you have and where you are at compared to your personal best result.

    Obviously many medications are contra-indicated in asthma, however have they looked into something to use either regularily or PRN for the intense anxiety episodes you get with reliever use? Have they helped you come up with techniques to try to keep as calm as possible during these episodes? I don't know how well your MH is being managed - that may sound stupid but thought it was worth exploring all bases!

    You would be within your rights to complain about the consultant. If you ring or visit the hospital PALS then they might be able to help you with that and they also might have some ideas about the appts you are struggling with (I am not sure - maybe they can arrange an advocate for you or something??)

    Just a few ideas and thoughts, im rambling and over-tired so not sure how coherent it is, but hope some of it is of help!!

    Good luck :-)

  • Thank you for taking the time to give me such a detailed reply. I am glad that you agree with me that it was a bad consultant. This really makes me feel a lot better. Thank you. Because of my MH it is easy to doubt myself and think that, maybe I did or said something wrong to provoke such a response, but I have replayed the scene over and over in my mind and can't think that I was rude or provocative or , in any way, disrespectful, and my questions were pretty reasonable.

    Yes on the blood tests last year, I came back allergic to cats. Cats and house dust. The numbers were not particularly high though. Total IgE 120 U/l. Cat Dander 11.6 house dust 0,26 plus some moulds and pollens at 0.5. I have it in a letter from the cons which he wrote to the doc and he says that this explains why my asthma improved in North Wales because I was away from the cat. When in fact, being away from a stressful situation for the first time in many years actually felt like I could ""breathe"" for the first time!!!

    Yes, we have taken some measures to reduce exposure. They are both short haired. Obviously cats not allowed in bedroom. My husband brushes them outside and baths them 2-3 times a month. The bed linen is washed at high temps and, every other month goes to a professionally laundry service for a damn good thrashing. Husband and daughter do the hoovering and we have a steam mop which does the hard floors, which are in nearly every room.

    We have tried a couple of times to arrange mh support worker to attend respiratory clinic with me. Once she was off sick that day and they could not get a replacement a short notice (would feel uncomfortable with a total stranger anyway!). Another time, the support worker had to leave because we had been their nearly two hours and she had another appointment. My husband also came once, but had to leave for the same reasons - he had an interview to go to and could not wait any longer. Just bad luck really. I did speak to my SW about it and he thought it was not right for the cons to to say that and to refuse to discuss any further treatment options.

    In the past, we have tried Montelukast but it made us suicidal :( No one has ever suggested that my breathing probs might be due to anxiety and panic attacks (thank goodness!)

    For me 400 2 puffs 2x day is a lot and my gp thought same, and I had to have liver tests and some other test because he thought it was a high dose - especially on its own without LAB's. Yes, Seretide was good, but it stopped being good after about 10-12 years of continuous use which is why I was referred to cons. It was my husband made me go to the doc for a referral because of my being so very breathless that I just could not join in with them on walks, or do stuff like hang the washing. It is still this way after being under cons for a year. I could understand them saying that about the cats if they had tried out several things and I was on a lot of differernt medications and things were still bad and there were no options left for them to explore. But they haven't really explored anything aside from the symbi smart (no good) and the Intal, which I think is having some effect but I would like to try and up it ( and reduce the pulmicort) but refusing to even discuss this little tiny option unless I cause a massive massive disruption to my home life and mental health is just awful.

    I don't really rate taking the oral steroid tablets. I have been on courses in the past (about three last year) and never found them to be that great, so I think exploring reducing inhaled steroids is worth discussing. Before I was seeing the cons, whenever I had really bad problems with breathing the doc used to give me a one or two weeks course of oral steroids, but I never really felt much benefit from taking them. SO I stopped going in when I was bad. ( I have probs with docs as well as hospitals, I would rather wait until my leg was falling off than go to the do c- it is my husband or support worker who nag me to go, even though I have a nice doc) I took a 2 weeks course of pred early this year for the cons and did my peak flow and there was no change. Really I would like to reduce inhaled steroids alongside trying another LAB.

    I have been very lucky in that whenever I have had exacerbations, I have managed to sort it at home or wherever I am by taking several puffs of turbo (and in the past vento, although never had to do this much) and then having to deal with the side effects from that :( I am having to do this more and more often now which is why I feel I am struggling with both asthma and MH.

    Peak flow, always up and down. Highest ever was 10 - 12 years ago 450. Highest now is 350, but I don't get that so often. mostly vary between 200 and 300 occaisionally going higher.

    Unfortunatley, there are no medications that can treat my MH condition. I can take diazepam for when I have extreme anxiety, but I can't take this very often, just short courses. Anti-depressants - I don't take anything on a permanent basis, because depression is a symptom of my MH condition and not the condition itself. We've tried about 37 differernt types of anti depressants and tranquilizers over the years!!! My MH is managed by regular psychologists appointments, support worker and social worker. Just like there is no ""cure"" for asthma, just managing and controlling the symptoms, same with my MH condition - there is no medication specifically for it - only stuff to throw at the symptoms and use management techniques. Having a difficult MH condition definitely makes it harder to cope with asthma and being breathless all the time. Waking at night with coughing and missing out on sleep makes it hard to manage MH !!

    Sorry to moan. Thank you for all your suggestions and advice and for confirming the cons was not acting professionally.

  • Remember if they're ever messing about with your anxiety meds that they know you're asthmatic as some can make asthma a lot worse!

    If you dont get on with symbicort then your only LABA option is the salmeterol which is the one in seretide. What you could potentially do is take the salmeterol on its own (a green inhaler) and then you can mess about with the different steroids to see which works best for you:

    Fluticasone (the one in seretide)

    Budesonide (the one in symbicort)

    Mometasone

    Beclomethasone

    Ciclesonide

    In terms of the montelukast, again, its a thing to discuss with your GP and MH team. Montelukast is occasionally linked to serious psychological effects. There is an alternative, which works in the same way, called Zariflukast (Accolate) and as far as I am aware (but have never taken it so don't know) the MH side effects of this are not the same. It might be a case of montelukast being more common and so rare side effects are simply reported more due to the numbers of people taking them as opposed to it not causing them however it is certainly an option to discuss as this is obviously a good treatment for those with allergic asthma.

    Now, i'm not sure about eligability as its very strict for Xolair however that is a very effective treatment for allergic asthma and so could be something to think about - although this would be dependant on your consultant being on-side! Its possible that as your main allergen is to cats then you're not elligable as i think the NICE guidelines state it is to be used in allergens that cant be easily gotten rid of (and whilst obviosuly your situation is not as simple as all that it might not be possible to get funding approved for it!) it would also depend on other factors like your total Ige and stuff. Its possible that if you've had no hopsital admissions that makes you unable to get it also! Worth asking though to see!

    I'd deffo keep trying to get someone with you - although obviously its frustrating if it never works! It would just be much easier for you if someone else could be there to fight your corner!!

    Hopefully they can find something to help you though! and i definately think it sounds like your cons was out of line!

  • Thanks again for your reply. My OH has agreed to come with me to the next apt, which is in a couple of weeks time, and I am going to write a list of questions before I go. I have copied out the list of different LABA's so that, if the cons tries to say they have nothing left to try, then I will be able to make some suggestions. I like the sound of trying serevent as it is the same LAB as was in seretide and I did not get major shakes and terrors with that one - did not know they could be used separately. Thanks again for all the information about the different treatments availiable, I will keep you posted how it goes!

    Hope your own asthma is not troubling you too much at the mo : )

You may also like...