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frustrated! And confused...

loulouliss1 profile image
13 Replies

To start from the beginning , I have had several several attacks over the past few months alone, been put on the brown inhaler then switched to Fostair 100/6 (currently 8 times a day) as well as antihistamines, a course of steroids and montelukast. Yet still I am struggling, not as much as I was, my peak flow (usually 460) was at 200 at best, is now at 400 average.

Still, I am getting symptoms most of the time, going into the workshop at uni (wood and metal) and having to leave barely 5 minutes in there because I am wheezing and coughing. It’s making it difficult to succeed in my degree as I can’t use facilities or my hands shake when I do life drawing.

Yet nothing seems to be working, it has gotten better, I have not had an attack in 2 weeks, but I am still needing to use my ventolin daily. I am so frustrated and confused.. what is wrong with my asthma?

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13 Replies
Wheezy19543 profile image
Wheezy19543

Hello, welcome to the forum.

Sounds like you have been through the wars a little and I'm sorry that you're having these issues. However you're not alone!

Are you currently under a consultant for your asthma? Have they located the cause of your inflammation i.e done a FeNo test to identify the best way of treating?

loulouliss1 profile image
loulouliss1 in reply to Wheezy19543

I have an asthma nurse who I see weekly at this stage. I have had x-rays to make sure it is no infection and they want to do blood tests to see if it’s allergies like they think etc .. they just keep putting me on different meds atm

Wheezy19543 profile image
Wheezy19543 in reply to loulouliss1

Hey,

I would be asking to be referred to a consultant or a centre of excellence like the London Brompton, Birmingham, Wythenshawe or Southampton. What they need to do is identify what triggers your asthma and what is the best way to treat it. At a centre of excellence, you have consultants who will put you through a barrage of tests to determine what is causing your asthma to flare up.

FeNo - this is a test that measures nitric oxide in your lungs - basically measures the inflammation in your lungs and gives the doc an idea if they need to up steroids.

Induced Sputum - They can take a sputum sample and look for inflammation markers such as Eosinophil, Neutrophil and look for the key triggers to see what inflammation cell is driving your asthma.

Blood Test- They can do a full allergy sceeen to see if you're allergic to air horn allergies such as dust, moulds, pet dander. This's can help them see if you have a allergy they can target therapies for to help reduce symptoms

VCD- Vocal Cord Dysfuction, sometimes when people are having violent attacks they have this, it's where the voice box is shutting down, it mimics the symptoms of asthma so well and sometimes you can be having this shut down but it feel like an asthma attack. I'm not saying you have this but would be good to rule this out.

Theophylline - although there is no strong evidence these work. They're a bronchodilator they will help widen your airways. You could ask for this as a step up at current to help open your airways up.

Physio- this is brilliant to help you control breathing and regulate breathing patterns. Also helps you bring the stick mucus up lying on your chest

Medications they can Put you on depends on your symptoms and what your results show.

Essentially it's all about what triggers the asthma and what treatments they can use to control it. Everyone asthma is diffrent and each person is the expert in there own. You essentially know when your body is saying 'I need help'. Don't be scared to ask for a referral.

Hope I helped a little

WK51FOD profile image
WK51FOD in reply to Wheezy19543

Dear Wheezy 19543

I can really symphasise with you as it is horrible being wheezy and not being able to breath i don't know about you but i find it v frightening. My GP came to see me last Thurs and has put me on a brown steroid inhaler called Clenil as the Fostair was making me v shaky I am also on strong antibiotics for 2 weeks, the breathing problems only started after a viral infection which then turned into bronchitis . Have had this wretched cough since 5 Nov, my GP is supposed to be phoning me on Thurs so if i am no better I will ask for a blood test and a referral to a chest specialist although apparently there is sadly a long waiting list.

Hope you manage to keep as well as poss .

Best wishes WK51 FOD

Wheezy19543 profile image
Wheezy19543 in reply to WK51FOD

Hey,

What have they said the issue is? Tell them to try Azythromycin, it's a macrolide antibiotic so as well as being very good for treating infections. It also has anti inflammatory properties. This allows it to reduce inflammation.

Which fostair was you on if it was the 200/6 Nexthaler try the 100/6 MDI version a some people can't tolerate the nexthaler.

A good steroid inhaler also is Cilclesonide. Ask for a blood test to check your Absolute Eosinophil count to check you inflammation. :(

WK51FOD profile image
WK51FOD in reply to Wheezy19543

Don't think the GP really knows exactly what the issue is, he doesn't think i have

asthma but the asthma nurse at our surgery thinks i may have, although my airways are blocked hence him prescribing the Clenil inhaler .

Is Azythromycin related to Penicillin as i am mega allergic to Penicillin. I think the GP wants me to complete the Clarithromycin that I am on for 2 weeks first which i started last Thurs.

Thanks Wheezy 19543

Wheezy19543 profile image
Wheezy19543 in reply to WK51FOD

Hey,

There is no golden test for asthma is based on clinical evidence. Although your GP should be able to do a spirometry test to see if air is trapping. If air is trapping and you get given Salbutamol. If this shows decrease in air trapping it would give a strong indication of asthma.

What area are you in?

Azythromycin is no a Penicillin. Have they introduced oral steroids yet and if so how has your chest been when these have been taken v

loulouliss1 profile image
loulouliss1 in reply to Wheezy19543

I have been on courses of oral steroids and whilst I was on them / a short while after they finished I was great. Then it started to get worse again . I live in Carlisle as a student at the moment

WK51FOD profile image
WK51FOD in reply to Wheezy19543

I live in Norfolk. I have had 2 lots of oral prednisolone a few weeks ago which didn't make a lot of difference. I have got a salbutamol inhaler as well as the Clenil steroid inhaler i am using twice a day.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador

Definitely think referral would be good though you may not get the specialist centre right off. With Choose and Book you should have some choice though and there are more asthma centres now/places with asthma specialists eg Oxford and also Guy's and UCH in London as well as the Brompton.

I won't repeat what Wheezy19543 has said as thst's a great summary of what more could be done but I think asking for a referral is a good step. You can also chat through with the asthma nurses as they are lovely and very helpful.

Carmel13 profile image
Carmel13

Have you had allergy test maybe you are allergic to dust in the workshop.

I have had chest infections one after the other for 3 years now i have had 2 bad bouts of haemophilus influenza its nuts as never been bothered before. I attend the resp clinic and they have changed my inhalers a few times which seem to be helping now. They have done bloodd allergy test etc had a camera shoved up my nose and down my throat found nothing all xrays clear CT scan clear its weird because where is it all coming from huh? Yet infection after infection.But i am on montelukast and yes i do think it helps. I came of it and got worse. So taking 10mg at night .hope you get sorted sorry to hear your probs.😑

WK51FOD profile image
WK51FOD

Hi Loulouliss 1

Don't know if it is any help but when i was put on the Fostair inhaler it made me v shaky, my GP told me that is one of the classic side effects so has now put me on a brown steroid inhaler called Clenil 100mcg which does not make me shaky but can give you oral thrush so I was told to brush my teeth or use mouth wash after using it.

Hope you start to feel better soon.

Best wishes WK51 FOD

felixrufus profile image
felixrufus

You may be allergic to some chemicals at the workshop. Usually wood dust, cement dust, chemical adhesives etc. trigger my asthma. Did you try to cover your nose and mouth with a thick wet cloth before entering the workshop? Don't start to use long term inhalers or steroids, they all have serious side effects. If your asthma is not triggered by exercise, try your best to swim in the pool. Not the sea, because there mustn't be too much difference in heat of your breath and body. Walk in cool, clean weather for 4-5 times a week. Strengthen your lungs. Let them know how to take deep breaths. And avoid being exposed to chemicals. If you have to, don't breathe them.

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