Having trouble again at night with coughing and feeling breathless. I don't ever get wheezy just cough alot (which I don't know if its normal not to wheeze)
I'm on a rescue course of pred and up to maximum nebs but wondered if this is something I'm just going to have to live with as a consequence of trying to get off pred completely? Hayfever and post nasal drip is getting worse as daily dose of pred goes down, could this be making my asthma worse?
I'm seeing gp today but just wanted to know if some of my symptoms are to be expected or if I should be doing more.
I really do feel for you & all the others who appear to be living with such awfull symptoms. You only have to look at other posting to see how bad it is for some in this country.
Maybe it's because I work in a tertiary centre with specialist dr and that our patients are children so I dont see just how bad things are for the adult patients.
Our hypothosis is that
1 if you have symptoms most of the time ie more that 4 episodes in 1 year,
2 using lots of meds,
3 missing school/work &
4 social/activity side of life
you are not controlled.
THe only thing I could suggest is read the BTS guideline available on line about what is best practice for this country & then discuss with your Dr &/or asthma nurse about your worries & concerns armed with the information you will have gleamed from the BTS. Stay uptodate with the different devices that may suit your along with the types of drugs out there. Dont forget your nose.
Do not suffer in silence you have a right to have a life. We need to raise the profile of this condition to make everyone aware of their right to be symptom free most of the time. To many appear to suffer.
Ann
Hi Rabbit,
Sorry to hear that you're having a rough time. It is a bad year for hayfever and allergies, even those who don't normally suffer are having symptoms.
Firstly - as you know, we cannot give emergency medical advice on the site, it's not possible to be able to do it safely without seeing you and knowing your history. So if you are very short of breath, unable to talk in sentences, not getting the usual relief from your reliever inhaler or nebs, or are in any other way worried, please do seek emergency medical help by calling your out of hours GP or by dialling 999 for an ambulance. But I know you know that anyway!
In terms of whether it is normal not to wheeze - many of us don't wheeze, or don't wheeze much. I wheeze when I am moderately bad but not when I am having a severe attack. There is a type of asthma called 'cough variant asthma' which is very much as you describe. The treatment is essentially the same as for other forms of asthma.
You don't mention what other treatments you are on - I assume that if you are on pred and home nebs, you have probably explored a lot of other options, perhaps most of the things mentioned in the BTS Guidelines? I can't recall who manages your asthma - are you under a hospital consultant, and have you been referred to a specialist tertiary referral centre for difficult asthma, such as Heartlands in Birmingham or the Royal Brompton in London? A specialist centre will have a lot of experience in managing these sorts of problems and will use a larger range of drugs. If you have not explored these avenues, it is definitely worth doing so. If you are under an appropriate specialist, but don't have an appointment with them very soon, it may be worth asking to be seen earlier, since you are struggling.
Trying to get off pred completely is always a balancing act - as you are probably only too well aware, the side effects of long term pred can be severe, but some people find that their asthma is steroid dependent - ie that they deteriorate dramatically when they are not on oral steroids. It may be that you need a low dose of maintenance pred long term to keep you on an even keel. Again, this is something that should be decided in consultation with a respiratory consultant, preferably one who has an interest in difficult asthma. The decision to put someone on long term maintenance pred is never one that is made lightly, and of course there can be a great many problems, but for some people it is the right choice. If you are on regular long term pred, or if you are requiring frequent short courses, your doctors need to consider whether you need DXA scans to measure your bone density and medication to protect your bones, as well as monitoring of your blood glucose and blood pressure.
Only you can decide if you can tolerate the level of symptoms that you are currently getting, and whether it is worth it in terms of being off pred. If you and/or your doctors are absolutely determined that getting off prednisolone is essential, for health or other reasons, that still does not mean that you necessarily have to accept this level of symptoms. It is definitely worth asking your doctors whether there is anything else available, and pursuing the route of alternative referral if appropriate.
It sounds from what you are saying that a lot of your symptoms are driven by allergic rhinitis and post-nasal drip, which is very common at this time of year, of course. Are you on a full range of treatment specifically for hayfever? Although there is no actual evidence that one anti-histamine is any better than another, there is some ancedotal evidence to suggest that some people benefit from switching from one to another. Montelukast (Singulair) and zafirlukast (Accolate) are also licenced for hayfever and are very effective in some people, so if you are not on one of these drugs, it is always worth giving it a try, even if you have previously tried it for asthma and found no particular benefit (I find that montelukast really helps with my hayfever, and has little direct effect on my asthma). A steroid nasal spray, used regularly, is also really helpful for a lot of people.
Nasal sinus irrigation is a really good technique to relieve the stuffiness of a blocked nose, clear the nasal passages and sinuses of thick mucus which traps allergens and provides a site for infection, and help your nasal steroids to get to where they need to be. I have given some instructions on how to do irrigation on the thread on rhinitis in 'Medical'. Nasal sinus irrigation before bed can help to deal with night-time postnasal drip, which may improve your asthma. I am a big fan of it - it is the single most important thing for me to control my reflux. Before I did regular irrigation, I would get regular bouts of infective sinusitis on top of the allergic symptoms, which would invariably spread to a chest infection and then an asthma exacerbation. Doing the sinus irrigation, by washing away the sticky mucus where bacteria can take hold, has totally prevented this complication for me - I haven't had an episode of infective sinusitis for over a year, now.
I wonder whether you have also been considered for Xolair? As you probably know, this relatively new injectable treatment directly blocks the action of IgE, the antibody responsible for allergic reactions in the body. Some people find that it makes a huge difference to their symptoms. The criteria to be on it are quite strict - your IgE levels have to be in certain range - normal to high, but not too high - for it to be medically suitable, and even if it is medically suitable, it can still be difficult to get funding. There are NICE guidelines now on who should receive funding, but many PCTs are still reluctant to fund it in all but the most severe cases, for example people who have had multiple Intensive Care admissions. Because it is a relatively new drug, there isn't a huge amount of long term safety data, so there may be long term problems with it that no-one is aware of yet. Of particular relevance to young women, it is not currently recommended that it is used during pregnancy.
Another potential treatment for the allergy-driven part of your asthma is immunotherapy. This involves giving a very low dose of an allergen - for example, grass pollen - and gradually increasing it, allowing your body to build up tolerance. Usually, the allergen is given as a subcutaneous injection; it's not recommended for people with severe asthma or allergies as it can cause anaphylaxis. There is a new form of sublingual (under the tongue) immunotherapy, called Grazax, which is specifically for grass pollen allergy; it may be safer although there are still concerns about giving it to people with severe asthma or allergies. It is quite expensive, and there are currently no NICE guidelines for its use, so getting it may be difficult. As with Xolair, it is a relatively new drug so there are no long term safety data, and it should be avoided in pregnancy.
The other big thing that can contribute to night-time symptoms, particularly coughing, is gastro-oesophageal reflux. Acid refluxing from the stomach up into the oesophagus and throat can spill over into the lungs in small quantities and irritate them. This is more likely to happen at night when you are lying flatter - even if you don't lie completely flat in bed. It is possible to have 'silent' reflux that is affecting your asthma without causing any of the classical symptoms such as indigestion or heartburn. Asthma medications such as salbutamol and theophylline/aminophylline are actually thought to make reflux worse, as they dilate the valve in between the stomach and the oesophagus, as well as dilating the airways.
There are tests that your doctor can do for reflux. These tests are quite invasive, and are not 100% accurate - it is possible to have a negative result and still have significant reflux on occasion. Many doctors prefer to try treating for reflux for a few weeks to see if it improves your asthma symptoms. Reflux is treated with tablets called Proton Pump Inhibitors (PPIs) - omeprazole and lansoprazole are examples. These drugs are extremely well tolerated with little in the way of side effects. There are other things you can do to reduce night-time reflux - elevating the head of the bed by a few inches (eg with blocks of wood under the legs) can be useful; avoid eating a large meal just before going to bed; avoid nicotine, caffeine and excess alcohol.
Above all, please don't give up hope of some improvement. Although it may be necessary, for your own peace of mind, to try to achieve some degree of acceptance of the way things are, that does not mean that you should stop hoping for, and fighting for, an improvement. It is always worth asking about new things and trying them. Asthma also has a natural tendency to wax and wane over the years, so, just as you are having a relatively bad phase now, you will have good phases in the years to come.
Hope this helps, take care
Em H
Many thanks for all your help, loads of new ideas to try particularly the nasal irrigation as my gp thinks its a sinus infection causing this flare up. Will wait until things calm down and will go back for a review of medication.
Is nice to know I'm not the only person who doesn't wheeze, has made me feel much better especially after being told I couldn't have asthma as I didn't wheeze.
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