Am I crazy?!

[yaf_user681_60253]

HI, I'm sure I'm not crazy but if anyone could offer some advice to prove this that'd be great, thanks.

To cut a long story short I'm currently taking fostair, talfast (fexafenadine) and Puriton to try and control asthma/allergies. I went to see my Gp today as been getting very tight chested and swelling over weekend. He suggested taking prednisolone for a week to prevent things getting out of hand. My first question is: is there anything else I could do that means no pred as had a ridiculous amount already this year and it's only April!?

Second question is that I finally plucked up the courage to ask for a referal after the last time 3 yrs ago was a disaster. The consultant decided I didn't have asthma (because at the time I had no symptoms) which led to me not taking my asthma seriously and many exasperations. Has anyone else been to see a specialist and it not gone well? After seeing my gp today I'm starting to chicken out of going in case the same thing happens again. Sorry for the ramble but I'm just about taking control of things but wondering if more can be done. I'm not sure I can take another consultant tell me I don't have asthma because I don't wheeze!

Thanks for listening!

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No, I don't think you're crazy.

To your first point: have you had allergy screening? You mention that you have been 'swelling', do you know what is causing that?

Re. Your second question, well I've also had a problem with a consultant, but it was some time ago. Around twenty seven years ago I was referred to a respiratory consultant to have my asthma reviewed after I moved to a different part of the country. The medication I was on at the time (Intal Co) was no longer being as effective as it had been. There were fewer tests available for assessing asthma at the time, and I already had a fairly long history of the condition (more than twenty years). We discussed what had been happening and the consultant agreed that It would probably be a good idea to switch medication. I was put on Becotide 50. My asthma was mild, the consultant said. At the time I wasn't convinced that he was right, but I didn't have the confidence then to challenge the word of a consultant. Asthma was not as prevalent then as it is now (we're talking mid/late 1980s here). I'd only encountered three other asthmatics in my life - one at school, and two at college (both of whom were smokers), so comparisons were difficult.

So I started on the new medication. Six weeks later I was back at the GP. The Becotide was proving even less effective than the Intal. I was given ventolin to take as a reliever, but the GP flatly refused to change the Becotide. Several months later I went back again. Things were still not great: the ventolin was helping but my asthma was still not as well controlled as I knew it could be. I was told that my technique was probably not correct - was given some advice on it and was sent away. I must admit that at that point I gave up. No one seemed to be listening to what I had to say, so what was the point. That was a mistake. Asthmatics reading this, take my advice - never, ever give up on going to see your doctor or pushing for a re think on your medication if your asthma seems to be continually less well controlled than it should be. What happened next with my asthma might have been avoided if I had persisted. For it was at this point in my life that I began a new career: I became a teacher.

Probationer teachers always have a tough time of it. It's their first year in the classroom and all of a sudden they are in close contact with a lot of children five days a week during term time. As a result they are exposed to a lot of the viral infections going round. In my case I didn't just pick up the viruses, I developed secondary infections as well - something that hadn't happened since I had been a small child with undiagnosed (and so untreated) asthma. I struggled on until eventually I picked up a really nasty bug. It started off as a tight little cough one afternoon. Forty eight hours later I was in hospital with pneumonia aggravated asthma. My husband said he had never seen anyone so sick in his life. I was in hospital for five days. Fortunately I responded well to treatment. Not surprisingly, it was at this point that the consultant got involved again. And at last my asthma medication was changed. It was still Becotide, but the strength was increased, I was given a peak flow meter of my own to use so I could monitor my condition more effectively. I've never needed hospitalisation for my asthma since. Since then my asthma medication has been changed three times: once for a completely different medication and twice for a change in strength. It is currently under discussion after I developed a completely different condition last year for which it may have been partially responsible. As a result of this however, it was suggested that I see a respiratory consultant to have my medication reviewed. Like you, Bex, I was nervous about going, and for a similar reason. On the previous referral the consultant had initially made the wrong call, and I had a bad time of it as a result. But I was more than twenty five years older, and a lot more confident when it came to dealing with medics in general. The thing you have to remember is that when you walk into that consultation room, there is more than one expert present. The consultant is one, but you, the patient, are the other. You are the expert on what you have been going through. Take as much evidence as you can with you. Don't be afraid to argue with him/her if you think he/she hasn't understood or hasn't got the point of what you are saying. Don't be afraid to take the time to go right through the medical history of your problem (it is very unlikely your doctor will have done so in the letter of referral). Nor should you be afraid to point out that you know that asthma does not always cause wheeze (there is enough evidence on this website alone to prove that), but that this is proving to be a point of contention. And above all, make sure that you see a different consultant this time. If you can get one who has asthma as his/her area of specialisation, even better (the hospital website may give you that information). At the end of it, if the consultant persists in saying it's not asthma, ask 'What it is then?' And don't accept 'I don't know' or 'it's probably a virus' as an answer.

One final point: these days I don't always wheeze when my asthma flares. I used to wheeze as a child, but not so much as an adult. And after fifty years of experience I don't need to hear or feel a wheeze to know if my asthma is playing up; the first warning sign I usually get is a tightening of the chest and a cough. I'm sure I'm not the only one (apart from yourself) who is like it.

Sorry this is so long, but I hope it helps.

Good luck.

[yaf_user681_60253]

Hi Maggie,

The only allergy testing I have had was with the last referral. I think the consultant did it through blood work but he didn't seem too bothered about the outcome. I tried to tell him that my throat often swells up with certain pollens or food but, like the asthma, he didn’t seem too bothered. I know that I am allergic to some foods. For example, if I try to eat certain types of fish then my throat will swell. On one occasion I almost called 999 because I really was struggling to swallow even after puriton. I'm generally quite good at avoiding foods that don't suit as my mum is also allergic to certain things so we never had too many nuts etc in the house, it’s visiting other people that can cause problems.

I was a student when I first got asthma. Damp/cold living mixed with pollen made me very wheezy. I remember rattling as I walked down to the doctors. Unfortunately, since I didn't realise how severe the condition could be, I turned down the prednisolone the doctor offered but she insisted on me taking 4 puffs of brown and blue inhaler morning and night. The following day I was in A and E on nebs consistently for 4 hours as things were out of control after sleeping in a house with cats and dogs. This was my first major attack and between now and then things have never really been sorted out even after 8 years. At times I have actually been wheezy but mostly I just get very tight chested to the point I can’t breathe. The rattle and cough seem to only come after my airwaves have been opened up again. I now know when I'm heading for serious trouble as I start to sound hoarse and my lower lungs/ribs feel puffy and swollen. I generally have a good idea what can cause me to swell or trigger the asthma as it’s usually allergy related. With all the pollen blowing around this week I’ve struggled more though what caught me unawares this year was the cold and damp winter, this is something new that I have had to deal with.

I tried various preventers a few years ago as I got fed up with needing to borrow a friend’s nebuliser or calling paramedics to ease my chest. I tried preventers like seretide, which really seemed to make a difference, but I kept getting recurrent throat infections and poorly controlled asthma so in the end I abandoned all preventer meds until I saw the consultant who put me on Qvar with a spacer, I used the Qvar but didn’t think it really helped and certainly didn’t prevent major flare ups. I’ve been on the Fostair since January, the day after having an attack, and have found it to be very effective at keeping my peak flow up. I could actually feel it working after ten minutes. I’m still learning how to deal with the Fostair as I still seem to be getting symptoms even though my peak flows high. I guess it’s a case of it could be worse without it. Hoping the consultant can recommend other meds or techniques that can help me be more symptom free for longer than a few weeks’ inbetween steroid doses!

Like you I am a teacher and can get a little paranoid whenever a student coughs or sneezes on me! Having a kid also beings you into contact with a lot of germs. It’s difficult to stay clear at times. I really enjoy my job but do find it difficult at times to keep talking. I had to come home early today as was struggling to concentrate with my ribs aching and voice getting hoarse.

Thanks for the advice on how to cope with the consultant. I think I am more confident now as I’ve seen how my peak flow can drop and recover with the right meds. So, if it’s not asthma I’d be very curious to see what they think it is?!

I have found reading your history very comforting in knowing that I’ve had similar experiences but also that there’s hope of it being sorted out. I think the last attack really bothered me as I had a realisation that without the medics arriving with the neb when they did things may have turned out far worse. I really don’t want to be in that position again and that’s what’s driving me to get things sorted.

Fingers crossed!

Bex

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Hi Bex,

I'm glad I've been able to help. I understand completely your reluctance to go on prednisolone. Six years ago I did have a very bad patch after I picked up an infection from a friend who was staying with us for a few days. When I saw my doctor she suggested prednisolone and like you I didn't want it. My mind got changed rather quickly, however, when she told me quite flatly that if I didn't go on it I'd end up in hospital. As it was two days before Christmas I decided to take the oral steroids. I might not have liked the idea of taking them, but I liked the idea of spending Christmas in hospital even less. And to be completely fair to my GP, they did work. By Christmas Day I was definitely in the 'calm after the storm' phase you feel once your asthma is back under control.

I hope things work out for you

Maggie

PS. Just as an afterthought, am I the only one on this forum who wishes there could be a get together of consultants and asthmatics, so that the asthmatics can put their experiences and opinions en masse to the doctors, and the doctors can explain how they arrive at some of their conclusions. Probably wishful thinking, but it might actually be beneficial to both parties.