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Looking for some advice on constant shortness of breath. Seen by GP several times, awaiting consultant appt.

Eisenheim profile image
8 Replies

Hi all,

New to the forum - Have been reading for some time.

I am hoping someone might be able to help me here. Looking for opinions from fellow asthmatics mainly as thus far I haven’t been getting much hope from doctors. It’s a bit of a long post!

I’m an asthmatic, have been since I was 7 (37 now) - I currently take Fostair 200mg and Salbutamol.

Mid January I began developing really frequent shortness of breath. My asthma was generally controlled pretty well prior to this, using Fostair in the morning and night. Now Fostair or Salbutamol wasn’t fully clearing this, sometimes it would a little other times it wouldn’t - If it did, it was relatively shortly relief.

Went to my GP and they couldn’t hear anything on my chest, gave my some antibiotics and steroids. After I’d finished the course, the problem was still there.

I went back and they were still unsure - This time they ended sending me to emergency docs at the hospital for chest X-ray, blood test etc. As a precaution as they thought it might have been a blood clot.

All the results came back clear - Slightly elevated white blood count. I have some hypertension anyway. Peak flow really great.

They told me it was probably some lingering viral infection etc. Etc and to wait it out.

Few weeks went by, still got the problem. I went back to GP and they upped my Fostair from 100mg to 200mg and said to keep an eye. No improvement.

Spoke to them again couple weeks later, they changed my BP med and gave me some antihistamines to try and see if that made a difference - Nothing...

Past few weeks it’s become quite a bit worse and it’s driving me nuts. Made worse by Covid really, constant anxiety with having symptoms something like Covid produces (it's not that, I don't have constant cough, high fever etc. and I haven't been out of the house for 4+ weeks now!)

They booked me into to a consultant at the hospital on the third appointment but I’ve been told it’s a long wait - That was weeks ago and heard nothing.

I’m just looking for some ideas what this might be. My mind keeps going to allergies as nothing has really changed with my routine....They did prescribe me antihistamines as mentioned above, which I'm taking once a day as instructed, but that has made zero difference to anything.

Has anyone here had similar issues with their asthma due to allergies? Can’t take a proper deep breath, not relieved by inhalers consistently?

Dust? Dander? Etc.

Sorry for the long post, I just want to cover everything. If anyone has a moment to chime in, I’d be really grateful.

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Eisenheim
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8 Replies
Poobah profile image
Poobah

What a puzzle! Having read many posts here where everyone is puzzled by a change in asthma where symptoms are worse. Apart from trying to dampen down symptoms with oral steroids and antibiotics the mystery always remains, why has my asthma got worse?

You don't say what type of asthma you have but you may not have been told yet.

I have elevated White blood count and this plays havoc, causing inflammation.

Eosinophilic asthma (EA) is a type of severe asthma. It's marked by high levels of white blood cells. These cells, called eosinophils, are a natural part of your body's immune system. However, in people with EA, these white blood cells cause inflammation and swelling in the airways and respiratory system.

NB your elevated white blood cells may be temporary and you may not be EA. But the white cells will still cause inflammation and may explain your current difficulties.

Steroids are the usual treatment. But from what you say, these haven't had any effect.

My consultant prescribed a four month course of Azithromycin for me two years ago as I just wasn't responding to normal treatment. It's an antibiotic but they couldn't trace any infection. The doctor explained that the treatment was first developed in Japan as they had a certain amount of asthmatics who had exacerbations every winter but usual treatment didn't help. They had such good results the treatment was taken up by Australia then the UK has tried it. My doctor said that they hadn't used it extensively. But now my records show that I can have it every winter, if required. I haven't needed it. Somehow it treats inflammation in some asthmatics.

I hope this helps - I'm sure there are others who can share there experiences and solutions.

Unfortunately, treatment is often trial and error, trying to discover what suits you best.

I do hope you find your solution.

EmmaF91 profile image
EmmaF91Community Ambassador in reply toPoobah

Just to say eosinophilic asthma is not in and of itself severe asthma... it is just what drives the condition... I have met people with a higher eos count the me and classed as moderate asthma, as severity is based off of control, symptoms, pred doses, and hospitalisations etc, not the driver. Unfortunately they used to only look for the driver in severe asthmatics (to help work out the best drugs for the patient) so all the info online is focused on severe eosinophilic asthma. Nowadays GPs can check the driver, in any asthmatic which they do (it’s a simple blood test to get eosinophil count (e asthma) or IgE count (allergic asthma). So in a roundabout way I’m just trying to reassure that the diagnosis of eosinophilic asthma does not automatically mean you are severe, just like being a severe asthmatics does not mean you have a high eos counts...

Poobah profile image
Poobah in reply toEmmaF91

Thanks Emma - I have both EA & IgE, oddly. You're right as I got the EA description from the Internet.

The high white blood cells may be temporary, which may be the trigger of this long term exacerbation.

These exacerbations that don't respond well to bog standard treatment are frustrating for the sufferer as it can take time for the doctors to find the best treatment possible.

EmmaF91 profile image
EmmaF91Community Ambassador in reply toPoobah

I have the same. Through trial and error of biologics I worked out that despite my IgE being higher/worse scoring than my Eosin count, my severe asthma is actually more eos driven, than allergic. Case in point xolair (IgE inhibitor) reduced emergency trips to hosp to once a month, mepo (eosins inhibitor) stopped admissions for 3 months, when I had to stop Mepo, and score high enough on eos to get benra (eos destroyer) I ended up with 4 admissions in 2 months, and my e count had only just got high enough for the benra 😅. Then the wait til benra my lungs went loopy again... started it and had no admissions for 6 months 😅.

Yeah a high WBC can mean anything really... in asthma flares it’s often elevated, but also can elevate due to steroids, or infection (viral or bacterial), or allergies, or anything really 😅.

Eisenheim I hope they/you can work out the cause of the issue and get some relieve from it. Like many thinks it can be a trial and error process 😅

Poobah profile image
Poobah in reply toEmmaF91

Your description of hospital admissions was me as a kid/teen/20s. Now everything less 'brittle' so I don't get acute attacks anymore but I can have long periods of low peak flow counts. Definitely changed in nature.

Sounds like Benra really suits 👌As an asthmatic you really have to take control and keep the respiratory team on your case. Sounds like you've done that, to great effect.

Keep well!

EmmaF91 profile image
EmmaF91Community Ambassador

Hi

There are lots of mimicers of asthma (which can then go on and irritate any underlying asthma.

It may be worth research vocal cord dysfunction/inducible laryngeal obstruction (VCD/ILO), silent reflux/reflux, post nasal drip (PND), stress/anxiety or dysfunctional breathing (DB).

It sounds like you may have ruled out an allergy (as no change in routing and no response to antihistamine... unless you just need a stronger AH... but usually you get some change from even a weaker OTC one). It also sounds like it may not be asthma caused, as you report there is little to no response to asthma meds and no change in your PF when you are symptomatic compared to when you’re not.

I hope this gives you some ideas of where to look... and you can rule in/out any likely suspects. Good luck

Coastwalker profile image
Coastwalker

Check your vitamin D, vitamin B12 and iron blood panel levels.

Breathlessness can also be caused by low or deficient vitamin B12 and/or iron/ferritin blood levels.

Also taking some vitamin A (retinoic or palmitate.) can help.

Low or deficient Vitamin D can sometimes, ( for some,) be the actual cause of asthma symptoms.

Get out in the warm sunshine and get sun on your bare skin and see if your asthma or breathing feels any better ?

Vitamin D is the sunshine vitamin.

Vitamins D, B12, low iron and ferritin (stored iron) can often go hand in hand with each other.

Drs might not know these above links, but vitamin D is highly linked with asthma and lung conditions now.

DollyDutchGirl profile image
DollyDutchGirl

Hello Eisenheim. Due to breathlessness and a constant feeling of tightening of the rib cage, my hospital consultant suggested that, each morning I take two puffs of Ventolin immediately prior to taking Fostair 200/6, then immediately follow that with two hauls of Spiriva. In the evening he said to again take two puffs of Ventolin immediately prior to taking Fostair 200/6. He also added in Montelukast to be taken immediately before bed ( along with my BP meds). Things definitely improved - although now the pollen season is kicking in, the tightness is returning along with breathlessness on exertion - plus, with the lungs beginning to sound like a pair of old bellows (which they are...LOL). I will keep an eye on how things go over the next week or so and if thing don’t improve, I’ll request an e-consultation with my GP. I have an appointment scheduled with my consultant for July - but uncertain if this will proceed at the moment. Maybe, using the Ventolin immediately prior to the Fostair could help you.....🤔

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