Queries as newly diagnosed

[Treetop33]

Hi all,

I'm a regular on other forums as I have lupus and APS. After a recent nasty virus (poss Covid) I was diagnosed with asthma.

I'm having real difficulties, despite being prescribed Salamol (which I'm not sure is working as well as the ventolin) and a preventer (fine).

Because I generally feel pretty long Covidy, I'm not sure what to expect with asthma. I have chest and back tenderness, breathlessness, reflux, a sore diaphram (I think), fatigue, and nerve tenderness (slightly numb and tingling) down my arms. I does get better sometimes. However, I went for a very short swim today which was, sadly, a big mistake.

No-one has really told me anything about triggers, how to use the new type of inhaler properly (I got on fine with the ventolin I had). I am just really struggling.

Does anyone have any words of wisdom? Thanks all in advance.

[madonbrew]

What is your preventer inhaler? Yes, lots of people seem to say about salamol v salbutamol. I'm with you on that too. Apparently they have the same ingredients but lots of people definitely complain about salamol.I don't know about long covid and asthma together. AUK nurses are really good and it might be worth ringing them when you can. And a trip to your GP!

Sorry I'm not of much help but I hope you get some support soon!

Dee

[Treetop33 in reply to madonbrew]

Thank you. I must admit I find it scary. I've asked to see the local asthma nurse and/or be re-examined but no luck.

[madonbrew in reply to Treetop33]

It's such a pain to have have to fight your way through to treatment 😪 but advocate for yourself and keep ringing until you get to see someone! They can't refuse you an appointment to see a nurse or GP!

[Treetop33 in reply to madonbrew]

Yes I know the routine - I have lupus. I get so tired sometimes, though, and particularly about the lack of seriousness given to long-Covid conditions.

[Patk1 in reply to Treetop33]

Insist on appointment with asthma nurse at gp surgery x

[Homely2 Administrator]

Re triggers.

My asthma is mainly trigerred by things, so no triggers, then my asthma is under control.

The doctors find your triggers with a blood test for specific ige, so they tested mine for tree and grass pollen and dust, all of which I have high ige and trigger my asthma.

My way to find my triggers is to keep a diary of my asthma attacks and then look for patterns. So I have also found my asthma hates mushrooms, mould and detergents.

My answer to most of my indoor triggers is to use air purifier machines, keep the house clean, avoid clutter, and wash bed stuff at 60c.

To discuss your asthma ring the asthma UK helpline on 0300 2225800. They are really helpful and will help you understand it, also look at their website.

[Treetop33 in reply to Homely2]

I am calling now! x

[Lysistrata Administrator Community Ambassador in reply to Homely2]

Just wanted to add that not everyone has allergic asthma/allergic triggers which can be detected through IgE. As you say, a diary and keeping track may be needed for many triggers which are not allergic and don't have an easy test.

I also managed to have a very high total IgE but no positive skin prick or IgE blood tests showing specific allergens. Clearly I was reacting to something but it didn't show up. My guess is that I have allergies to some form of tree pollen and maybe moulds/weed as I get hayfever in spring and autumn. Possibly birch as I also react to foods which are known to cross-react with birch (this is called oral allergy syndrome or pollen food syndrome, it isn't a full on food allergy). But I didn't show as positive for birch!

A consultant I saw in hospital who specialised in allergies said that this happens and he finds allergy tests frustrating because negative tests doesn't mean no allergies. So even with allergic triggers you can test for it can be trial and error and observation.

[Treetop33 in reply to Lysistrata]

Yes very aware of this. I really l've the bit where you say to docs, well I think I react to this and this, and they look at you like you've just said "homeopathy works".

[Lysistrata Administrator Community Ambassador in reply to Treetop33]

Oh I don't even tell my consultants most of my triggers anymore. Their instant reaction is 'no you don't' to any trigger I mention, then they will insist I have a trigger that isn't a major issue, or only have one trigger. Apparently I'm not in a position to determine my triggers at all. A&E do tend to ask and accept the answers, though I find it isn't clearcut and often is a mix of triggers piling up.

[Gareth57]

Hi, you mentioned triggers, this is unfortunately a bit of trial and error. Every one is different and your triggers could be general for example perfumes could set you off or it might be more specific in that 1 perfume sets you off. Some people are effected by heat some cold, humidity or dry air, some smoke or sometimes it could be food, scented candles, moulds, just about anything but you will find what upsets your lungs over time. However be aware that it might change. On the plus side if your asthma is mild you could find very little affects you.

Lastly if something does trigger you use your reliever straight away don't be shy about it.

[Treetop33 in reply to Gareth57]

Thanks yes it's all a bit shocking regarding triggers. I did use the Salamol but it just isn't very effective, it seems, for me. Didn't do anything!

[Gareth57 in reply to Treetop33]

If the salamol didn't give any relief I would see your doctor again, even if it's not as effective it should have given some relief.

[Lightoflife]

Hi treetop33 I'm sorry to hear you have suspected long covid on top of Lupus. I have had asthma for 30 years but mainly controlled, after a Covid virus in October I became terribly breathless, couldn't walk upstairs without sitting down ! Previously I could walk 10 miles with no problem. I ended up in A & E with a Long Covid diagnosis and a referral to a LC clinic, but no treatment.

I saw my doctor twice afterwards and asked for steroids but he said they wouldn't help. As I hadn't heard from the LC clinic and getting no help I made an appointment with a private Respiratory Specialist ( £150 ) He was so helpful and understanding, he changed my inhaler to Symbicort and gave me a course of steroid tablets. Both have helped especially the inhaler, unfortunately after the steroid tablets went out of my system my fatigue and pain came back. I have a follow up with him in a few weeks.

My first appointment has come thru for the NHS, in February, I certainly couldn't have waited for 3 months ! So I recommend that you push to see an asthma nurse or if you can pay for a specialist. Take care and please keep us updated on your progress.

[Treetop33 in reply to Lightoflife]

Sorry to hear you were hit by the Covid too. It can sometimes just catch you wrong, can't it. I recognise what you are talking about. I've never had to go the long Covid services route thus far, and not al of the clinics sound terribly effective. Docs don't like it when they 'can't find anything'.

It is horrible. I'm so new to the world of asthma that I have no idea who I would go to or what to ask for, even privately. I'm sure there are more effective meds out there.

Take care xx

[Emily-G]

Hi I’m so sorry you are having a difficult time. I have long covid and have had asthma all my life. The most helpful thing for me for managing my long covid, asthma and bronchiectasis combo has been seeing a physio. Mine is amazing

[Lysistrata Administrator Community Ambassador]

Hi, you've had some good points from others and I would definitely recommend calling them helpline! I also thought I would provide some links to posts you might find helpful as a starter - you can read through them in your own time.

New to asthma: healthunlocked.com/asthmauk...

Asthma: when to do what eg take your reliever, get more help: healthunlocked.com/asthmauk...

Triggers, an asthmatic's perspective: healthunlocked.com/asthmalu...

Inhalers (maybe you already know this but in case it's useful, as GPs and asthma nurses don't always provide this information in depth): healthunlocked.com/asthmauk...

Other inhalers a GP can prescribe: healthunlocked.com/asthmauk...

Asthma top tips: healthunlocked.com/asthmauk...

[Treetop33 in reply to Lysistrata]

Thank you so much. I did speak to Asthma UK who were very helpful indeed.

[Ern007]

Hi, I have breathing problems and i don.t rely on just Salamol - I take a green inhaler "Ipratropium bromide" and that is far better, for me anyway. I take Fostair as a preventer.

Some people with asthma take a tablet called "Singulair" might be worth mentioning to your GP. Really with what you are suffering at the moment, best IMO would be ring your GP and asked to be seen.

[Treetop33 in reply to Ern007]

I am trying. They won't.

[Ern007 in reply to Treetop33]

You mean they won't let you be seen? To to post, triggers are allergies - Pollutants and cigarette smoke even second had - Stress can also be a factor with Asthma.

Reading your post I would go on the day your arms are tingling and your back and chest are sore (As an acute case) in need of being seen.

Over the inhalers, you like Ventolin the best - I never liked the big tube, with the replacement inhaler, drug is the same, maybe you need to find a technique that helps you use the smaller Salamol.

I am not a Dr and can't read your symptoms but reading your post, if it was me, I would phone at 8am or go to the surgery. Good luck.