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In need of advice before my next specialist appointment

Hannah125 profile image
9 Replies

Hi!

I have an appointment with a pulmonologist next week and last time I saw him, he said he would consider giving me injections in case steroids didn't work. I was a bit surprised since I thought you had to be tested to see if you could benefit from this type of treatment but he was actually ready to give me my first injection last time. The only thing that stopped him was the blood test results I had brought with me which showed that I had very high Ige. He said I couldn't be on Xolair but he spoke about Nucala and another one but I don't remember its name.

I read that these drugs are only used for those who suffer from eosinophilic asthma. The problem is that I'm not sure that's really what I need, I feel like I have not yet exhausted all the other options. I have not been taking inhaled steroids for long and I'm sure there must be other things to try before going for the injections. How can a doctor know if you are suffering from eosinophilic asthma ? What makes it different from the other types of asthma ?

Thank You!

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Hannah125
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9 Replies
Llamafarmer profile image
Llamafarmer

I wrote a reply but it disappeared 😟 have you had FENO testing? That's usually something they use for diagnosing eosinophilic asthma (this link explains it asthma.org.uk/advice/diagno... .

I've just had FENO testing and blood testing to rule out allergic asthma. There are definitely loads of people on here who know lots more about it than me who can comment further or you could chat with the asthma uk nurses if you want to understand more about why they are testing you for eosinophilic asthma. In my experience the consultants don't always think to explain what they are doing and why!

Good luck and hope it goes well!

Hannah125 profile image
Hannah125 in reply toLlamafarmer

Thank you!

I didn't know about this test, I'll talk about it to the doctor but I'm not sure if he'll accept. He doesn't really like to spend too much time with patients, last time I went to see him I had so many questions but he didn't seem to have time (he was already checking the next patient's documents when I was still talking to him!).

Js706 profile image
Js706

Eosinophilic asthma can be easily tested for - they measure your eosinophils on a full blood count test. You need to have them above a certain level (0.3 or 0.4 depending on the drug) for the injections other than xolair.

It basically just means that the main cell type that drives your asthma symptoms are eosinophils (a type of inflammatory cell). FENO is a quick, simple breathing test they can do in most respiratory clinics, it doesn't necessarily always match up with eosinophil levels but is generally thought to be a good indication of the amount of inflammation in your lungs (often due to eosinophils in this type of asthma) - although results of it should be taken with a pinch of salt as it can be pretty variable.

Its useful to know if you have it not only because of the available injections, but also because steroids are generally more effective for eosinophilic asthma (although do still help other types).

How long have you been having issues for and what treatments have you tried so far? :)

Hannah125 profile image
Hannah125 in reply toJs706

I've been having issues with my asthma for 5 months following a viral infection (flu). Since then my asthma has become crazy with me having attacks that last hours or days with little to no relief from blue inhaler and nebs. I've had 2 short courses of oral steroids but it didn't resolve the problem. I'm now on seretide 250 4 puffs a day, ventolin (up to 20 puffs everyday) and nebs of bricanyl/atrovent. I also sometimes use Pulmicort. But none of this has managed to end that exacerbation, it just keeps coming back. I'm really starting to think that there is no solution for this problem.

Js706 profile image
Js706 in reply toHannah125

Really sorry to hear that its been going on for so long :( I know quite a few people who have had issues following flu!

But there are lots of other treatments that could be tried before things like injections!

There's a tablet called montelukast that a lot of people find benefit from. Its just one tablet, normally taken in the evening and its generally pretty good for both exercise induced and allergic asthma - which it sounds like you have if your ige was very high!

There's also an add on inhaler called spireva (tiotropium) that you could ask to try. Its a long acting drug that's in the same class as atrovent - so if you find that those nebs help your symptoms it might be worth asking about. Its taken once a day.

Those two are fairly common add on drugs for asthma but there are also other ones that are a bit more old fashioned like sodium cromoglicate inhalers (aims to try and stop a type of allergy cell, called mast cells, reacting as much) or theophylline tablets (although a lot of doctors aren't keen on these as they can have some nasty side effects if your blood levels go too high - and you need regular blood tests to monitor these).

Also if your ige was high, do you know what you are allergic to? And do you suffer from hayfever at all? If you've got allergies do you take a daily antihistamine? As a lot of people find that can also help control asthma symptoms if they're allergy related!

Hope that's given you some ideas :)

Hannah125 profile image
Hannah125 in reply toJs706

Thank you very much for your answer! Spiriva does seem like a good idea, I'll ask the specialist if he could let me try it. I do get some relief from nebs but it only lasts 2 or 3 hours.

I'm allergic to dust mites but what's crazy is that I used to clean the dust myself in the house and I never had any problem. It wasn't a severe allergy and I never had asthma attacks. All these symptoms I feel now are new to me.

Hannah125 profile image
Hannah125

I'm really struggling right now and I really need some advice because this is all new to me. I don't want to open a new thread for this so I'll just ask my question here. I am going through a very strange asthma flare up which neither I nor the doctors I've seen so far understand. Right now (and it's been going on for a week) I'm feeling tight chest (as if there was a giant rock sitting on it), an itchy sensation in the top of my chest (as if there was an irritation or a wound) and it hurts. Sometimes it even feels like it burns. On top of that I feel like my lungs are heavy and blocked and I find it very hard to get air in and now even out.

What I don't understand is that sometimes (after nebs and ventolin) I'll start to feel better but 3 hours after it happens again. No matter what I do it keeps coming back and it lasts hours. Nebs make the breathing easier but I still have this painful burning sensation in my chest. Doctors don't take me seriously when I go to hospital because I have 99 oxygen saturation and I don't wheeze or cough. So they say I have nothing and it's just anxiety. That's why I don't bother to go to hospital anymore since I know what they are going to tell me. What I don't understand is why things can't seem to go back to normal. I've never had severe asthma and never had an asthma attack in years.

I even had two short courses of oral steroids and it didn't work. The first one it was 40 mg of pred for 5 days and then one day 20mg and another with 10mg. My second course was three days at 40mg and 3 others at 20mg and a last one at 10 mg. I felt a little bit better while on them but as soon as I stop it just comes back even worse than before.

Is it normal to have this burning and itching discomfort in the chest while having an asthma exacerbation ? Is it normal that the symptoms keep coming back everytime and last hours despite the ventolin and the nebs ?

Js706 profile image
Js706 in reply toHannah125

It could be a couple of things - it may just be that you need more regular meds to gain control of your asthma or a longer course of steroids if you felt better while on them.

Do you ever suffer from reflux or post nasal drip? As reflux could cause a burning sensation and the post nasal drip could cause an itching one. Both of these are quite common and can not only cause their own annoying symptoms but also make asthma worse.

Do you only feel discomfort in your chest or do you ever get symptoms like tightness etc in your throat?

MrsCMK profile image
MrsCMK in reply toHannah125

What you’re describing sounds familiar to what I’m experiencing. I’m highly allergic to pollen (awaiting a referral for biological treatment) and the summer season really kicks my butt!

I get terribly breathless, get a heavy feeling in my chest, I get the common feeling of a band being around my chest and breathing is like doing so through a straw, however I don’t wheeze, don’t cough and my peak flow doesn’t really drop. I also suffer with raging acid reflux during flare and find that as the reflux gets worse, my asthma gets pretty scary.

I’m currently in the middle of a flare and my asthma doesn’t get better without prednisolone, however with each course of pred, my reflux gets more unbearable. It’s a vicious circle. The reflux on it’s own can be awful for people to put up with, without throwing asthma into the mix. Similar to you, I also find that during this type of flare that salbutamol wears off quicker than usual.

I hope you find some relief soon and the doctor gets your symptoms under control :)

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