Inconsistant Consultant views for treatments

I would be interested to find out whether anyone else has found doctors and consults have completely different view on treatments?

My own personal experiences has been the treatment is not consistant. One consultant wanted me to start using Terbutaline sub-cuts, seen another one who believed it benefits were questionable and again others who had conflicting views.

You would hope the consultants would all be following the same guidelines! But what is really anoying is when I had a short term trial, I felt better then I had been in a very long time, but I have no say in my own treatment.

Meanwhile I struggle on a daily basis, and have had numerous re-admiitance to hospital incuding critcal care, which must be costing the NHS Thousands if not tens of thousands. It would be nice if Asthma care was a bit more ""joined up"".

Appreciate comments from anyone else who has had similar experiences, just so I have some assurance It not just me.

Also, if any one is using Terbutaline, has it helped long term?

11 Replies

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  • Like u , I was told it would help... Then told it wouldn't. was told there was no further treatments and options was to increase the pred. Unfortunately due to side effects I have with the pred this refused .... So they said only thing would b to try bricanyl but told it would most likely not work .... Ive been on subcut bricanyl since feb ..... Asthma improved a lot able to walk more tho still can't exercise ... Peak flow went up. but unfortunately on paper it didnt look as it was working the lung function didn't improve til now 6 months later......all I can say is stick withit. And I hope it improves things for u

  • Thanks for the reply and encouragement. Its interesting your doctors beleived the sub cut bricanyl was percieved not generally to work but in your individual case it did. Hopefully I might be treated individually as well. Thanks again

  • I think that part of the problem is that there aren't really any firm guidelines for difficult asthma. There are lots of things to try, but most of them are just that - things to try. I'm under the care of the difficult asthma team at the Royal Brompton, where the treatment is very different from that at my local hospital. Even the respiratory team at my local hospital don't agree with the Brompton (or each other, for that matter).

    I've heard lots of people say that sub-cut terbutaline shouldn't give any more benefit that inhaling it, but the evidence does seem to be that it works for some people. You could ask your doctors if they'd be happy for you to try it (they could arrange a double-blind trial, in which neither you nor they know whether you're getting placebo for a week (for example) or terbutaline). If it works for you then that's wonderful; if not, then at least you were given the opportunity to try it, so that you can't play the 'what if' game.

  • hey i have it were my consultant writes all this fantastic stuff in my notes and is putting me on all these weird and wonderful drugs...and yes he is a CHEST physician (emphysis on the Chest) because then you get an on call doctor or consultant etc who specialise in other body parts who question whether you have asthma at all (and then still treat you for it)...maybe they shoudl stick to their own lil body parts and leave the diagnosis down and long term medical stuff to the guys who have done years of training in this field and know what they are on about lolx

  • OMG! Reading your post was like someone reading out about my life. I have been seeing a Cons as an outpatient and he admitted me into hosp for subcut trial. As soon as I got there I saw a diff Cons - inpatient one who said he didn't think I was suitable for it and was gonna use admission for steroid reduction as I have not been able to get off them for 6 years. Following discharge after steroid wean (got down by 10mg and told to stay on that dose until next admission) I ended up having severe attack and spending 6 days in HDU and was nearly vented.

    Have OPA with other Consultant tomorrow (outpatient one) and am dreading it as I never know who to believe and feel that no progress is being made. I have been dismissed from work due to long term sickness and am so stressed its untrue. I think I'm either gonna cry during appointment tomorrow or get really cross with the potential to walk out and discharge myself :(

    Sorry for hyjacking your post and for moaning x

  • Thanks for the responses. Have been back to my friends in Intensive care again, hence no responses. I have now been pushed to another Asthma Specialist, who appears to be initally more sympathetic, and has mentioned another drug that can be used for sub cuts. I also mentioned I have always found the IV theophyllin in hospital worked well, but when at home on tablets, would still deteriate. I had said to previous consultants\doctors could this be because the tablets interact with other medications in the stomach. This was always dismissed, but the new specialist says some studies have shown this to be true. Ahhhhh!!!!!

    I hope this new consultant finally is up to scratch, and at the very least does not dismiss my own observations out of hand. Fingers crossed.

    I do feel Asthma care, especily brittle asthma, could do with a major kick up the @r$3. Maybe if they listened to the patients own unique asthma experience, and not countless contradictive studies. Maybe they would then tailor the treatment to the individuals needs, which works for them, even if studies indicate it might not.....

  • Hi Could someone please tell me what subcut terbutaline is Thanks

  • I have this problem all the time...noone seems to know what the other is doing.Or decide to disagree with each other just for the hell of it. I have been on holiday recently and unfortunately ended up in hospital whilst away...the treatment was superb...they said that if I was local they would be able to give me a trial on sub cut bricanyl as on paper and their experience of my symptoms they felt it would benefit me greatly, but my local won't even think about it...they don't believe in it. I am struggling to get myslef fit enough to go back to work (new school year) on friday and am getting very frustrated. I wish the consultants who make these decisions could live a day with this condition before being so fickle and unhelpful.

  • Judith, subcut terbutaline is a continuous infusion just under the skin surface of terbutaline aka bricanyl (bronchodilator similar to ventolin) using a pump. It's used in severe cases with multiple admissions and does seem to be down to consultant opinion. There's plenty of posts if you search and sure someone can answer with more info than me

  • Brittle Asthma information is improving, compared to when I first had brittle Asthma 20 odd years ago, the internet has become very helpful, there is still much to do though, and Asthma UK has recognized this. Bazbanty in the past I have written a blog for Asthma UK which if typed into the search area ""Katina's Blog,"" you will find my mixed experiences of Brittle Asthma care, medical and personal. The best advice I can give anyone who is struggling with mixed views on Asthma care, is find a specialist you feel comfortable with, and insist that only they change or enforce your Asthma care plan. Once many fingers get involved, confusion results and often the patient who is supposed to be helped finds themselves alienated angry and confused. I don't let anyone other that my consultant change medication, and providing I am polite and show that I am well informed about my management plan I am seldom challenged these days.

  • Thanks for the advice Katina, I think your approach is probably my best bet. Hopefully there is light at the end of the tunnel, and not the light shining from a doctors blood gases needle...... :)

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