respiratory allergy?

[amyyyy]

Hi everyone

I am new here and am not sure I am even on the right forum as I dont know what my diagnosis is. The doctor has given me a vague ''respiratory allergy'' tag which I am confused by and I don't even know what I am allergic to.

I am really hoping someone out there recognizes my symptoms and can point me in the right direction.

2 years ago I caught a very bad chest infection. I eventually kicked it with antibiotics but remained wheezy and full of flem for many months after. Doctor gave me more antbios but they didn't work. He then sent me for chest xrays and scans but all came back normal. I carried on wheezing slightly and my chest was a bit tight with some mucus. But I lived with it for many more months hoping it would pass. After the cold itself had passed, the tightness felt more managable. But then I caught another simple common cold and my chest went into overdrive. Plenty of unmanageable wheezing, difficulty breathing, coughing, and tightness. I couldnt exercise as that triggered my tight breathing and led to panic and often hyperventilation. More antibiotics from the doctor, kicked the cold and reduced the chest symptoms but the wheeze never ever went away. It just got more manageable after each cold infection passed. I return to exercise and everything feels kinda ok ... til i get yet another cold and BAM... i start to become really tight in the chest and am wheezing so bad i cant breathe . It makes me cry because i get really scared. This has happened on and off for over a year. The doctor gave me a peak flow test and checked my oxygen levels. All were normal. He ruled out Asthma. Xrays are all fine. So why am I getting these recurring episodes every few months where my body behaves as though i am having an asthma attack whenever i catch a cold? Doctor says it could just be a ''respiratory allergy''.

Doc eventually put me on 10 days of Prednisolone. Miracle. After a year of struggling to breathe on and off, it completely and totally cleared up the wheeze and tightness. I can breathe again. I was so happy. I started to exercise as normal and my panics stopped. Everything was fine.

Doc said it was DEFINITELY an allergy and seemed quite happy with that diagnosis. The prendnisolone kicked it.

However skip forward a few months, i get another cold and then all the horrible symptoms return. Bad wheeze, cant breathe, feel like an elephant is sitting on my chest all day and cant exercise as any rise in my heart rate triggers hyperventilation as i gasp for air. Its really frightening. Doctor gives me a second course of Prednisolone. And again.. miracle.. all the symptoms go. I am happy again.

This happens on and off a few more times until finally, today, we have come to the end of the road with Prednisolone. I caught a small cold last week that has triggered another massive constriction of my chest. So much gunk and coughing and huge difficulty breathing. Peak flows and oxygen fine. Doc says I cant take any more Prednisolone as have taken the maximum recommended for the year so far.

he wants to put me on an inhaler - Clenil modulite. I said how long for? he said forever!

The stress caused by that prospect has brought me to this forum. I couldn't sleep all night as i really struggled to breathe and was extremely panicked, and i didnt want to go on anymore steroids. Especially as the doctor doesn't seem to really know whats wrong with me. I dont seem to have any definite diagnosis. All I know its not asthma, its an allergy.

Does anyone recognize this pattern in symptoms ?

Is there an alternative way to treat them without being permanently on steroids?

Is it worth getting referred to an allergy clinic and getting a proper diagnosis? If its a specific allergy, maybe i could avoid the triggers?

i just want to do everything I can to heal my problem without taking anymore steroids because i get so scared to take them. I find it deeply distressing to take any more. It upsets me because I have a relative who reacted so badly to steroids and I dont want to go the same way. I did actually take 10 puffs of my new inhaler last night (too much by mistake) and i was so anxious about it that i had a full blown panic attack. That is how distressing I find taking steroids.

I would be so grateful if anyone knows how i can go about getting a proper diagnosis and if can go about treating it in a more holistic way?

thanks so much

[Minushabens]

Yes that doesn't sound like too helpful a diagnosis. However asthma is in general terms an allergic response to something (usually referred to as a 'trigger') that causes inflammation in the airways. So I guess he might have been saying that he thinks it's asthma but he's not quite sure!

Inhalers for life is normal, but I'm a bit worried that his default response seems to be prednisolone. But I'm not medically qualified!

Have you tried ringing either the Asthma UK Helpline (0300 222 5800) or British Lung Foundation Helpline (03000 030 555)? They might be able to help you unravel everything & advise on the best way to deal with your GP.

Good luck.

[amyyyy in reply to Minushabens]

thanks so much. I will call both those numbers tomorrow.

over the past year, on my doctors advice, I have taken 5 courses of prednisolone. One course was just 5 days worth of daily oral tablets. So I did 5 of these courses spread out over the year - whenever I have got an attack. Thats a total of 25 days of prednisolone spread over a year.

Being a very anxious sort, I just checked out the side effects and they are scary. Do you think I have taken enough to warrant any worry? Nothing so far seems to have occured apart from a slight podge around my tummy (though that could just be the chips!) and i had really bad cystic type acne on my neck over the summer. But that has thankfully passed.

I refused to take any more of the prednisolone. My biggest worry is that something bad will happen soon... as a result of the steroid build up in my system? is that even a possibility? i worry so much.

thanks again.

[Minushabens in reply to amyyyy]

Don't worry excessively about the steroids. Long-term or regular use isn't ideal, & a lot of people get minor side effects, including sometimes months later, but these are usually quite minor & pass quickly.

25 days is on the high side but not to the point it's going to damage you.

The issue really is that steroid tablets (you probably already know this by the way, but don't confuse them with body-building steroids; they aren't the same thing at all) are really best used as a quick 'hit' when somebody's asthma gets bad. There would normally be a starting point that assumes a management plan & effective inhaler use as a way of stopping or reducing the need for that sort of treatment.

However, as I said above I'm not medically qualified & your GP may have very good reasons for choosing that course of action. I think though that gathering information to at least get to the point of either understanding it or being able to challenge it is your next step.

[amyyyy in reply to Minushabens]

thanks Minushabens

I am such an anxious person when it comes to my health and do panic easy.

I have very recently developed a small bloat around my tummy area, like there is a brick in my tummy. It sticks out a little which I find weird. I don't eat loads and haven't put on any actual weight. If anything, iv done loads more gym til this recent allergy bout. I was quite flat in my belly til two weeks ago.

Do you think that the bloat might be due to the prednisolone usage? I took my last course last November and have been fine ever since. No obvious side effects. But this last two weeks I have this very strange bloated sticky out tummy that doesnt go away even when I cut down my diet.

If we assume it is due to the steroid use, will it go away? Do such side effects pass?

Just to reiterate, i took 5 days worth of the steroid, at about five separate points over the year..

sorry to be so anxious. I get really frightened by this stuff, hence finding this forum

[Minushabens in reply to amyyyy]

Is the bloating generalised (ie as if you had put on weight) or a specific lump?

Swelling, bloating & weight gain are all known side effects of prednisolone, so a sudden onset might be caused by it, but obviously it's hard to tell specifically.

I think that I'd definitely start by trying to get some qualified medical advice as to if the treeatment you are receiving is the right treatment & appropriate for your symptoms. For many people, steroids are life saving drugs and the side effects are just a small price to pay for better breathing, so I would want you to get proper, professional advice before refusing to take any more.

Is there a nurse practitioner at the surgery? They are often a bit more experienced at symptom management so might be a good place to go after you've spoken to the helplines.

Try not to get too anxious as well

[amyyyy in reply to Minushabens]

Thanks so much for your reply. The weight is just localised. On my tummy. It feels like there is a brick in my tummy. Apart from that I am normal everywhere else and I have no weight gain. Does this sound like a symptom of prednisone?

I am taking your advice and seeing a nurse tomorrow.. It would be so good to have someone to talk to rather than imagine the worst sitting alone in my room. Am out and about today keeping busy so am managing my anxiety better

Thanks so much

[Minushabens in reply to amyyyy]

Hopefully the nurse will help clear things up for you. In my case I always get swelling with pred, but it tends to be my face. Real ale & too many pies does the same to my stomach so I probably wouldn't notice if it was having an effect there

[Happychicken]

Hi,

I wander what you are allergic to? Whatever your allergies are it sounds like you are having some kind of reaction which is responding to steroids.

The clenil is a low dose steroid which will help.to prevent the attacks you are having so far you take it as instructed by your GP.

It may be worth seeing an asthma nurse and explaining everything and getting his/her view. They can also give you lots of information on what's going on. They can monitor you and you should be seen for regular check ups until things are sorted.

I too was shocked when I was told I had to take inhalers for.ever....I was like "what....for ever??!!" The consultant just looked at me like I was a bit mad.

I believe the clenil is a.low dose steroid unlike the.oral steroids you have been taking.

I'm sure that if you know what your allergies are and stay away from triggers, eat well and exercise regularly then this should help you to stay on top of everything along with taking your.new medication.

Hope I have helped....make an appointment with the asthma nurse I'm sure he/she will be really helpful,

HC

[amyyyy in reply to Happychicken]

thanks so much happy Chicken

that is reassuring.

i live in central london and have done most of my adult life (years now). At first i thought it was the air pollution and that perhaps i need to move away.. but that doesnt make sense. Iv been fine living here 99 per cent of the time. I seem to get this allergic reaction only when i catch a cold.

I also have a small bunny rabbit living with me for past 8 years. I thought maybe it was him and i got super sad as couldnt bear to give him away. But again, iv been fine with him the past 8 years, just in the last two years, whenever i get a cold, this asmtha type allergy flares up.

This all makes me think its just related to getting infections. As soon as I catch a cold, Im chest seizes up beyond what is normal and i cant breathe.

I dont know if i can ever avoid catching colds off other people. I hope I am wrong and the actual trigger is actually something else a bit more manageable.

I cant exercise sadly until it clears up because as soon as i raise my heart rate, my breathing goes completely crazy and I panic. I went to the gym two nights ago and had to stop after 5 minutes as i was hyperventilating .. that was very stressful

So I will defo make an appointment with the asthma nurse. i will ask my doctor on friday. I really hope I can sort it.

Thanks so much for the helpful advice

amyy

[Offcut]

One of the biggest problems with doctors they have so little time to talk to you that they forget that we also need to know a little of what is wrong with us. It is okay to say it is an allergy but what is causing it is the next question that needs to be answered?

BE Well