Asthma very unstable.

[Ghoulette]

Hi all. I'm sorry to post again but just after some reassurance I guess.

I have had to attend hospital twice in the last 5 days (I also had an asthma attack about 2 weeks ago and was blue lifted from GP surgery) for nebuliser and iv hydrocortisone treatment following exacerbations. I also had to have nebs at the GP weds morning prior to the first of 2 trips to hospital.

I have been living at the GPs the last 2-3 weeks and have been off work for the last 2 (still off next week 😞).

I am on my third week of 40mg pred, and am on my third course of abx for infection. I am using my ventolin at least 8 puffs a day and my pf is up and down.

When I attended a+e on Thurs, they reluctantly gave me nebs as my SATS were 98-100 and no wheeze.....the fact that I felt like I had an elephant sat on my chest and couldn't breathe properly and had a noisy cough didn't seem to concern them as such. They did bloods and chest xray which showed still evidence of infection. I was seen by medical consultant who said it wasn't my asthma as I had no wheeze! In fairness to him, he did say that he could see I was acutely unwell and was obviously in distress but he was adamant that it wasn't my asthma.......despite the fact that the ipratropium and salbutamol nebs helped!

He discharged me with instruction to attend the AEC unit on Saturday, which luckily i did.......3 nebs and iv hydro later, i was discharged home. At least on saturday i had definite wheeze, rattly cough, tachycardia at 155 and reduced pf and SATS.

I'm due to see respiratory end of September but I'm just slightly concerned that this up and down will continue til then? I don't understand why, over the last 6-8 weeks, it all seems to have gone unstable? I'm just wondering if, when I go to see GP on weds if I should ask for neb at home? At the minute, it is the only thing that seems to ease things for any length of time until it kicks off again. I'm not daft and I would still attend a+e if absolutely necessary, bit I feel like if I had a neb at home, it would minimise trips to the hospital whilst I am unstable?

What do you guys think? How likely are they to agree? I don't mind buying the machine, but I obviously need the GP to prescribe the meds.

Any advice gratefully received.

Thank you,

Michelle x

[Js706]

Sorry to hear you're struggling at the moment!

Unfortunately asthma does like to be a pain sometimes and just become much more unstable without any clear reason for it! Otherwise it could be something you're allergic to if you have allergies? I think weed pollen started more recently. Or has anything changed in your home environment? Also the weather is a notorious trigger and I don't know about where you are, but where I live its been very changeable over the last couple of months!

I'm glad even if the consultant was a bit of a pain with saying not asthma originally that they did treat you AND that the saturday trip was organised!! (Although they do sometimes give nebs to people in hospital with chest infections even if they don't have asthma, so saying "oh its only infection, not asthma" shouldn't stop them giving you them!)

Its hard to say with home nebs, because consultants are really not keen on them as there's a lot of evidence to say that they actually increase deaths from asthma. The argument is that if you're unstable you really ought to be going to hospital anyway (as annoying as it is...) as asthma can deteriorate very quickly. And I know a lot of GPs often wouldn't be happy prescribing them without seeing a consultant and there need to be very, very strict rules with them, even if they are given.

What do you regularly take for your asthma?

[Ghoulette in reply to Js706]

The atmospheric pressure is definitely a major trigger for me I think so the weather is really not helping, plus I guess the infection as well.

I just feel bad for keep having to go to hospital, especially if they think I shouldn't be there.

I'm on fostair 200/6 2 puffs bd (they did try me on symbicort turbo but switched me back to the higher dose fostair in the GPs), Incruse 55 1 puff daily, montelukast 10mg at night, 120mg fexofenadine morning (I also take 20mg omep daily, 10mg amitriptyline at night and 200mg quinine at night too). I am on 40mg pred od and 1g amoxicillin tds.

That's what I thought about the nebuliser. I just want to try and stay on top of things whilst I wait for respiratory. I guess I can only ask and see what the GP says.

Thanks for the advice xx

[Js706 in reply to Ghoulette]

Yeah I've been struggling a lot with the weather too! I know it can be pretty miserable having to drag yourself there and back (especially when they're not great with you) but they found an infection and based on what happened on saturday you definitely needed to be there! Also most actual asthma consultants will always advise their patients to err on the side of caution and go get checked out rather than risk getting worse at home (although often easier said than done to motivate yourself to do that!).

The only thing I can also think of with treatment is have you ever tried oral theophylline? A lot of doctors don't like prescribing it because it can have side effects but it does really help a lot of people! (it was the first drug I was prescribed that started to really improve my symptoms)

You never know! But I feel your pain if its a no - my asthma has been unstable for the last couple of years and I still haven't managed to persuade anyone to prescribe me home nebs!

Hope your GP is helpful and if not that you can manage to stay on top of things until you see respiratory!

[Ghoulette in reply to Js706]

Thank you. I hope yours improves. I'm still learning as I have only been diagnosed with adult onset 2 years ago.

I'll see what GP says and look into theophyllin, and hopefully I will get an earlier cancellation for respiratory.

Thank you again xx

[Denae011 in reply to Ghoulette]

Hi ghoulette. I have been exactly the same recently. Asthma up and down. I had 5 weeks off work , I'm in phased return at the min. I have a nebulizer that was prescribed by the hosp. It belongs to the hosp tho. I have had home nebs for years now. I know some Drs don't approve of home nebs, I am on 15 mg pred long term and up dose when asthma flares . I have salbutamol, atrovent , symbicort carbocysteine i also have an antibiotic 3 times a week. Please speak to your gp about a proper treatment plan for you.

[Ghoulette in reply to Denae011]

I'm sorry that you are unwell at the moment as well. I hate not being able to go to work but for once, I an accepting that I am not currently well enough to be there. I am not confident to start reducing my preds down at the minute as I think it may make things worse, but I'll see what the GP says.

I'm definitely going to ask about home nebs and if the GP says no, I'll ask respiratory when I see them.

I hope you start to feel better soon x

[Hannah125 in reply to Js706]

I didn't know that nebs were proven to increase the risks of death from asthma! I did ask for nebs at home but most doctors refused and only one finally decided to prescribe one for me after I asked him. I do rely on nebs a lot but I never use it more than three times a day. Are the risks related to the drugs used with the neb or with the fact that people don't immediately seek help ?

[Js706 in reply to Hannah125]

The two asthma specialists I've had a good discussion about them with have said that it is both because people can become tolerant to the reliever medication (although this can happen too with overuse of reliever inhalers) and because people rely on them rather than seeking more help. This is because nebs are basically like a sticking plaster, they can provide some short term relief but don't actually do anything to deal with the underlying issue or gain any more long term control.

[Hannah125 in reply to Js706]

Thank you for your answer! I've been using a lot of bronchodilators these past months and I've been increasing the dosage because I noticed that they were no longer as powerful as they used to be. It's a scary thought to think that one day they may stop working altogether. They're the only thing that helps me breathe when I'm struggling so if they stop working I'm definetly going to die!

One last question though : do you know if the tolerance can be reversed ? And if so, do you have to stop taking the drug altogether or just decrease the dosage ?

Thanks!

[Js706 in reply to Hannah125]

Yes the tolerance can be reversed (Although I'm not certain over the period of time). I know it definitely does if you stop using the drug and am fairly certain that it does too if you reduce the dose.

If you're needing a lot of bronchodilators you need to see your doctor and see if there are other medications you can try to try and gain more control so you don't need to rely on them as much.

[ChrissieMons]

I can't really add anything the medical advice you've been given, but I do know you have to have patience and give everything time to work. If you're keen on your job and hate being off, it may be that the tension about this is making things worse. Do anything you like to do which relaxes you - keep the fan on to help you keep cool and drink plenty of water. I know it is easier said than done, but it is worth a try.

[Ghoulette in reply to ChrissieMons]

Thank you. I'm ok with being off (just don't like letting people down iykwim)and work are brilliant and have told me in no uncertain terms not to come back til I'm ready, so I'm not stressing thankfully 😁.

I've definitely got the fan on the go for me and the dog 😁 and keeping us both well hydrated.

Thank you xx