Log in
Asthma UK community forum
12,400 members18,225 posts

any suggestions?

Hi everyone

Just looking for suggestions regarding my asthma as feel like I've hit a dead end - I'm a lifelong allergic asthmatic but has got gradually worse in the last 10 years. Currently taking Seretide 250 (tried Fostair and Symbricourt without success) then had Qvar added on as an extra steroid inhaler, as well as Montelukast, and also tend to take a 5-6 courses of steroids every summer and a course or two in autumn. I had Incruse added on about two weeks ago, and also take Cetirizine. Tried various steroid nasal sprays over the years which work for a bit then wear off. First sign of warm weather this week and my lungs are burning and taking extra Salbutamol yet the hospital won't put me on Xolair as my FEV1 is slightly above 80%. My PF never budges below 570 no matter how ill I feel. I realise many of you have it worse than me so don't mean to moan, but feel really stuck as to what to try next and would appreciate any suggestions or new drugs I may not have heard of!

13 Replies
oldestnewest

What does your doctor say!

Reply

Do criteria for Xolair specify FEV1? I thought it was about number of exacerbations needing oral steroids plus IgE levels (and same for the other injectable drugs but with eosinophils). May be worth looking up criteria for Xolair and arguing your case if you think you meet them and the FEV1 isn't included. It is meant to be steroid sparing! Ditto maybe for Nucala in case your IgE is normal (has it been tested?) but eosinophils are raised.

Do you see a consultant or just GP? I like to go in with an idea of the options as I think it is easier and saves time if you have something in particular to ask about or try, or at least already know broadly what your options are and can discuss them with some knowledge. You could give the AUK nurses a call and see what they suggest - I have done that before consultant appts when I wasn't sure what to ask about or what might be out there. GPs probably won't know, as they are not asthma experts of course so can't keep up with the latest in everything!

3 likes
Reply

In the Xolair trial they found that a reduction of asthma exacerabations was not observed in the

Xolair-treated patients who had FEV1 > 80% at the time of randomization.

I don't have a particularly low FEV1. However, I go to a tertiary brittle asthma centre. My consultant will consider me for Xolair if I have a blood count with eosinophilia in the last 12 months. I don't have this currently as I have had a load steroids which brings down your eosinophil count.

There are new injections coming out with different criteria, eventually the price of Xolair will come down so the criteria may become relaxed.

2 likes
Reply

I used to.get steriods nearly everyother month. As soon as I came of them I had problems so now I am on.maintenance steriods of 3mg daily and I am doing well. One blood test called ensinophils always was high when I came of steriods but stayed stable whilst on them. Taking steriods worries me cus of the side eeffects but at least I can breathe and hav good quality of life. Mayb ur doctor cud try maintenance steriods with u ask about it.

2 likes
Reply

I'm 65 and life long allergic asthmatic with a history of lots of chest infections. At the beginning of the year I started using a salt inhaler and have found a big improvement. Google Himalayan salt inhaler.

2 likes
Reply

Try taking Berocca vitamin C daily.

It will boost your immune system and try and stay away from food and drinks which are high in histamine fortified drinks like wine and foods such as vinagar, cured meats, cows milk and dried fruits there is no point taking anti-histamine tablets to low the histamine levels in your body when your going to top them back up with histamine rich foods and drinks.

1 like
Reply

I too am a lifelong allergic asthmatic. I think It gets worse as you age because your immune system weakens and every underlying weakness becomes more apparent. I was on Seretide 500 and various nasal sprays, cetirizine etc. This year my readings have got dramatically better so much so that I am off the Seretide 500 and on an equivalent half dose Fostair. What changed. Well I made myself exercise more and took up mindfulness meditating, just half an hour a day staying quiet and calm and listening to a free app. Overhauled my sugary, junk filled diet and lost 10lbs in the process. Started taking probiotics (there is a lot of stuff emerging showing poor gut microbes may cause inflammation and increased allergy symptoms) and also now take Fexofenadine (prescription only). Which is apparently stronger and better than Cetirizine.

Completely agree with Padgill re being aware of what’s in your diet. I used to drink wine regularly. Now I even have a glass my face is scarlet and inflamed - a clear sign my body doesnt like it.

Good luck, try looking at changing a few things in your life x

2 likes
Reply

Ah, the old problem. Medics get too hung up on tests and numbers. These are useful in diagnosis, but don't tell you how you are going to FEEL. You need to persuade someone to prescribe an alternative to what you are using already, regardless of whether the statistics suggest it might not work - these only relate to averages and quartile figures, and don't apply to everyone. There can't possibly be any harm in trying an asthma medication which MIGHT work and MIGHT make you better - after all, that is supposed to be the object of the exercise, not blindly following the results of a scientific study which didn't include you as one of the subjects.

2 likes
Reply

also go on blf as they also deal with some of the issues iu raised.i am also taking that antihistamin as all of a sudden I had a servere allergic reaction to tramadol from nowhere.i also take seretide250

3 likes
Reply

I have severe allergic asthma and was on xolair for 2 and a half years then came off it for a trial and got worse so went back onto it. They have brought out a new treatment called Mepolizumab which the majority of my hospitals xolair patients are now on. I know it is based soley on you IgE levels. Mine were 1192 when I started but have increased since. Worth asking about the mepo but I know that the criteria is super tight you have to be steriod dependent with constant flare ups. If you're still with your gp I would see about getting transfered to an oupatients to see a consultant.

Hope it all clears up for you soon. Know how hard it is, suffered with it for 19 years ..

2 likes
Reply

Thanks for all your suggestions everyone, I've been reading up on diet and salt inhalers today so will give that a try. The consultant made a big deal out of my FEV1 needing to be below 80% to meet the criteria, so I've bought a FEV1 monitor today and I have a reading of 82% for tonight and i'm going to take a record of readings to my next appointment. My IgE used to be high but the Montelukast brought it down but I still feel the same breathlessness! annoying and leaves me scratching my head.

1 like
Reply

Do you know what you are allergic too?

I have multiple allergies which includes food, pollen, dog and cat fur, wasp stings, penicillin (to name a few!) However I find that if I am exposed to some allergens it can excerbate my reactions to others. So managing my "allergen load" does help to decrease the reactions generally.

Having said that at this time of year I usually find my asthma is much much worse because of tree pollen but last summer I started fostair and today is the first time I've needed ventolin in quite a while.

A diluted salt nasal wash might help as well as the salt inhaler. They used salt a lot in Germany for breathing problems when we lived there for a few years. I've not tried it but some people seem to have benefitted from using breathing exercises like the Buteyko breathing technique.

1 like
Reply

Hello, sorry to hear you are having such a hard time with your asthma.

Hospital consultants have to go by the nice guidelines in order to target those people who are most likely to see an improvement when prescribing the biological treatments; and as superzob says, this is all about numbers; what they can measure and assess and evaluate.

The most important thing is have they tested your blood for raised igE / eosinophil counts?

If your blood shows raised levels of either, and you've also had 4 or more courses of steroids, then it might be worth trying to argue that you are a borderline case re: the additional 80% FEV criteria; especially if having to take regular steroid tablets is impacting severely on your quality of life.

FEV's do go up and down by a few points tho. Does your device have the facility to record and print out the results over a period of time? Perhaps you could then also show this to the cons when your are trying to put forward your case? Is there anyone like a patient's advocate service who might be able to assist you in presenting your case? Are there any other factors that might swing it your way? For example, regular caring responsibilities, trouble holding down a job, or another health prob which impacts on managing your asthma? Where do you live? In the UK , healthcare is devolved, so where you live might also inform the decision making process regards accessing more expensive treatments.

I don't often get allergic attacks, just chronic daily symptoms (not much wheeze but always breathless and coff) coupled with slow, steady exacerbations needing steroid tabs to get back on track.

I was, initially, quite surprised to be offered xoliar, as it is targeted for severe allergic asthma. I've just had my 2nd injection on the 16 week trial. So far, no improvements. I needed a course of steroids in between the 1st and 2nd injection and was told that this amounts to a failed trial. I still need to complete the trial and have 2 more xoliar injections; then I can go straight into trying Mepolizumab. I am very hopeful about this one, as I have near constant nasal congestion and glue ear, which might be caused by higher eosinophils levels.

Prior to seeing this cons / resp team, I was attending a respiratory outpatients clinic at another hospital and was, like you, feeling frustrated like banging my head against a wall. I was maxed out on all the usual suspects - inhaled steroids and multiple add on treatments, frequent courses of steroid tablets etc. At this hospital, they never even mentioned the newer injectable medications and, instead suggested I try continual antibiotics.

Under this new team, accessing the biological treatments has been like a knife through butter. Maybe I am just really fortunate, but I didn't even have to ask about them; the doc was very keen for me to try them.

Good luck :-)

1 like
Reply

You may also like...