First appointment with asthma specialist

[yaf_user681_6778]

Hello everyone,

I have my first appointment with an asthma specialist next to Tuesday at my local hospital.

I have had a number of asthma reviews at my doctors surgery this year to try and get my asthma under control again but unfortunately the doctor has run out of ideas for medication that he can try me on. The doctor I have been seeing at my surgery has a special interest in asthma and he said that I have needed a high number of oral steroids to get my asthma under control this year and that he thinks it is time he referred me to the specialist at the hospital. My currant asthma medications are a follows: salbutamol, seretide 250, montelukast, phyllocontin 225mg twice a day and pred when I need it. I have asthma management plan which I follow and am keeping a peak flow diary. I also suffer from hay fever and am on a number of meds to control this.

I have not needed hospital treatment for a number of years but my asthma is on a downward spiral at the moment with the weather the way it is.

What questions is the specialist likely to ask? Is their anything I should take with me to the appointment? Do i need to take any notes with me? What test are they likely to do?

I am really nervous about going to the appointment!

Thanking you in advance for any information.

Rachel Brotherton

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Hi Rachel,

I had my first appointment with a cons a few months ago after a rereferral (was under the care of a different cons at a diffferent hospital as a child). Like you, I was quite nervous as I didn't know what to expect. I found the first appointment to be a bit of a fill in the background - they asked about my history, family history of asthma, triggers, describe attacks and explain what I had already tried. Before the appointment, I had a set of lung function tests (mainly spirometery and exhaled nitric oxide) and afterwards they sent me for a blood test (to rule out any other causes of breathlessness, IgE and allergy test). The cons listened to my chest and asked questions to rule out reflex. She then explained the various treatment options she had and we decided upon the first one to try (changing seretide to symbicort smart - which unfortunately didn't work). She phoned me about a week later to explain the results of the blood test as my IgE was very high. On my second visit (although this was urgent appointment requested by my GP), she did a chest X-ray and referred me to physio also.

I would be prepared to talk about yourself a lot (I didn't take any notes in but I do think I know my patterns, trigger etc very well as I have had asthma since a very young age) and, although I was never asked for one, a peak flow diary and symptoms tracker would be useful to take if you had one. Looking back, I certainly didn't’t need to be worried and is was good to know that they were looking and underlying causes too. However, I did feel slightly disappointed that they were unable to offer the miracle cure right away (3 months on and I am pretty much where I was before) but that was probably my unrealistic expectations. They do have lots of treatments up their sleeve but my cons is off the opinion that it is better to try one thing at a time rather than throw lots of meds at it so we know which one is working.

I hope this is helpful and sorry for any rambling/parts that don't make sense - I've had a lot of reliever and steroids today so feeling a bit out of it! Let us know how you get on.

[yaf_user681_6778]

Thank u kaylacp for you reply. I am still a little nervous about Tuesday but u have made me feel a bit easier about the appointment. I have made some notes to take along with me.

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Hi Rachel,

I had my first appointment with cons in March so I am very new to this also! I would agree with Kayla, a diary of PF's and symptoms is good to take. I also noted how many times I was needing my reliever.

If you are forgetful like I am, I take notes of any questions I have so I do not walk out and think ""dam I should have asked that"", also triggers as its easy to miss some off and also notes on anything else that I thought might be relevant to tell for ex my worst time is winter, I experience a lot of tiredness and need a lot of sleep etc.

Taking lots of notes (nothing too heavy) was really helpful for me as I felt that I wasn't going to forget anything and knew I would walk out with all the answers I needed for the time being.

Hope this has helped and good luck!

[yaf_user681_6778]

Thank you unigirl2 for your post

I am ready for my appointment tomorrow with my peak flow diary and lots of notes written down in a book. Can't wait to get this appointment over and done with as I am still nervous about it. I will let you know how I get on.

Rachel

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Good luck for tomorrow Rachel.

I've also got an appointment tomorrow so am going to try writing some key points/questions down. I already have my pf diary and symptoms/triggers chart but I sometimes come away and think oh should have asked that! Feeling a bit nervous about this one as I don't think I came across very well in my last one (it was an emergency appointment so I was lacking in sleep and feeling generally rubbish that my GP wouldn't give me pred).

Hope it all goes well for you.

[yaf_user681_6778]

Thank you KaylaCP for your reply,

Hope your appointment well tomorrow and you get your asthma sorted out.

[yaf_user681_6778]

Evening all,

I had my first appointment with the asthma specialist at my local hospital today. He asked me lots of questions about my asthma and how it affects me, what medication I was taking and if I had any other health problems. He then had a good listen to my chest and said that it was defently asthma and that he would like to try me on symbicot.

He said he would like to see me in 4 months time so my appointment is booked for the 26th November at 10.15am. I would need to make a doctors appointment to get a prescription for symbicot and try it for a while and if I did not like it I could go back to symbicot. I have booked an appointment at my local surgery for 13th August. at 9.32am. He then sent me for some blood tests.

He wants me to go on the symbicot smart regime but I am unsure how this works? What do you do if you are having an attack as you can't use symbicot once you are having a attack? Do you get an new asthma management plan for the symbicot smart regime?

I don't know why I was nervous as the appointment went really well.

Thanking you in advance for any answers.

Rachel

How did your appointment go today KaylaCP?

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Hi Rachel,

I am so glad it went well. I had many years of successful control on symbicort smart a few years ago (I was one of the first on it at my gps) and then my cons tried me on it at my first appointment with her. The idea is that if you are needing relief, then you get the reliever (it is supposed to be just as good as Ventolin) but also the extra steriod to tackle the underlying problem. As I said, for many years this really helped with my control. The reason it didn't work this time was because I was having attacks on it and got to the 12 puffs but still needing it so I was taking of. You do need to have your asthma plan changed and talk about this with your GP. I think there are also a few threads on here about it too.

I thought my appointment went well. For once it was a positive appointment as with the atrovent and taking it quite easy at the moment (on school holidays), I have only been needing a few puffs of reliever a day. The cons looked and took notice of my peak flow chart (which although still not at my best doesn't have huge variations) and actually asked me if I have any questions. We then went through several options medications wise (eg adding extra fluticasone if needed as I had asked how I could step up my meds of necessary) and then she discharged me! to be honest, I am not sure how I feel about this as although I am better than I was a week ago, I am no better than when I was first referred. I also think she is probably the only one who has listened to me and when I see my GP they just phone her up anyway as they don't know what to do. I would also find it hard to accept that this is the best I am going to get! I need to see the nurse for something else tomorrow but am hoping to have the space to talk this through with her and the helpline were great this afternoon too (they think I have under treated with pred). She did say my GP can ask for me to be seen again without another referral which they will probably do as they were reluctant to prescribe atrovent when she recommended it without speaking to her about dosage! One of her recommendations is theophylline (although she previous discounted it as I have a very quick heart rate) and I know he won't prescribe that as that is why he referred me in the first place (he is very honest in saying this is beyond me).

Anyway sorry if I have gone into rant mode - it has just been a bit of a roller coaster day!

I am really glad your appointment went well and I hope symbicort helps you to get a bit more control.

Take care

[yaf_user681_6778]

Good morning everyone,

I spoke with the asthma uk nurses yesterday about my appointment with the asthma specialist at the hospital. I told them the consultant want to try me on Symbicot smart regime but I was not that keen and did not understand how to use it and that I had an appointment in two weeks time to get the prescription for symbicot and new management plan. The reasons I do not like the idea of symbicot are as follows: it works totally different to seretide, It is a dry powered inhaler and cannot be used with a spacer which means higher risk of oral thrush, I like the idea of knowing how much is left in the inhaler like with the seretide as I know that my seretide inhaler lasts a month where is I don't know how much of the symbicot I will be taking so the amount of prescription I need to put in could vary each month and it is a totally different way of managing my asthma. The asthma uk nurses said that their is another inhaler called fostair which can be used in the same way as symbicot. But I do not know which one is better symbicot or fostair? Please could people let me know their opions.

Thank you

[Hidden in reply to yaf_user681_6778]

The asthma uk nurses said that their is another inhaler called fostair which can be used in the same way as symbicot. But I do not know which one is better symbicot or fostair? Please could people let me know their opions.

Thank you

Hiya, before I give you my opinion, do bear in mind that we are all individual - and what works fantastically for one person will be useless for another! - and vice versa, so the only way to know is by you trying it for a few weeks. Thus there isn't really a better or worse, its about what works for you.

I have not had symbicort, but I am taking fostair. I thought I would chip in, as I was changed to this from seretide for a very specific reason, by my consultant at Papworth. All steroid/combination inhalers vary in terms of the particle size of the drug. I was changed to fostair because the drug particles are smaller than seretide. As I have big problems with my smaller airways this meant the drug (seretide) was not getting to where it needed to be. Thus using a drug with smaller particles enables it to get further into my lungs. This may not be an issue for most asthmatics (which affects bronchi / larger airways) but I have issues with my bronchioles/aleveoli.

Im unable to take dry powder inhalers as I dont have enough 'suck' for want of a better description! I use fostair with a spacer. It needs to be kept in the fridge until the point of opening it.

Lynda

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Hi Rachel,

I have been on both fostair and symbicort before starting on seretide. Although I was not on fostair for long as they wanted to change me to symbicort smart, I found that it worked as a preventer but was not using it as a reliever. I know here are a few people who have used both in this way so maybe they can give you a bit more advice.

With the prescription thing, it does take a little while to get used to seeing it as a reliever but you would manage the prescriptions the same way as you would for Ventolin. I always had a few spares like I do my reliever. The symbicort had a dose counter too which is very useful (I'm not very good at judging/remembering what I have left! I was on smart for several years and have only had oral thrush when I was on it for two weeks in May. I think this was because I took the twelve doses everyday for two weeks! I found that I could quite easily wash my mouth out by carrying a bottle of water(which I do anyway) and then a little bottle of mouthwash and small toothbrush for when it was pratical.

Sorry I can't be much more use. I do understand that it can take a lot to totally change your management plan like this, especially when you do have to get into a routine but I did like the SMART plan and do wish I could go back on it as it makes a lot of sense.

Hopefully someone with a bit more experience of fostair will be able to help you out a bit more.

[yaf_user681_30003]

Yes, we are all so individual in what works for each of us. That becomes so clear when you read back through the thousands of posts here.

If it helps, my Symbicort is 400/12, which, unless the guidelines have changed, is not (generally) for use in the SMART regime. SMART is for 200/6. I started taking Symbicort instead of Seretide (my original preventer) in an effort to reduce cramp side effects. I have not used Fostair.

One of the first things that happened to me when I got referred to RBH (then, luckily, one of my local hospitals) was that my Symbicort dosage was doubled to 2 puffs each morning and evening, with an extra 2 in the middle for the day if PFs dropped too far. That simple change made an immediate improvement. I also had all the tests already described above, along with an overnight (positive) PH test for gastric reflux.

I found that a small spacer for my Ventolin inhalers, although far more convenient to carry than a large volume spacer, did little for me and ended up with large volume spacers, on the desk at work (before I retired), in my work bag and a number around the house. Eventually, through (again individual) choice, I chose to buy my own nebuliser, because it requires the least effort of all when my lungs are just so extremely tired and I need more than unassisted Ventolin. Generally these days, the large volume spacer is reckoned to be as good as a nebuliser for many (and cheaper), but individual circumstances and choices make the difference. My portable Medix/Omron (mesh) nebuliser is also, for me, more convenient to carry with me than a large volume spacer. I use Ventolin nebules.

I also got in the habit of drinking/rinsing after very inhale, whether MDI or nebuliser and have successfully avoided oral thrush (in roughly 10 years of diagnosis).

I am delighted to hear that having a proper management plan has got the importance that it deserves. My AUK Peak Flow Diary is the most important document at all my appointments, whether GP or RBH, especially as it records my daily drug usage as well as PF readings.

I hope that at least some of this is useful.

AlanJ