Back Again

[Beth_19]

Hello everyone, sorry in advance for the mammoth post.

I was last on this forum about 7-8 years ago in 2015/2016 after my previous symptom free asthma flared up badly and left me very sick (back on inhalers, steroids, and multiple hospital admissions). We managed to get my asthma back under control but not symptom free by the end of 2017 beginning off 2018 and I was doing great. I lost a whole load of weight (8 stone) with help from my respiratory team and the weight loss forum on here and got fitter. My peak flow improved up to 550 which was better than before.

I was doing great up until Boxing Day 2022 when I woke up feeling like death and tested positive for Covid for the first time. I was very sick with Covid, probably should have been in hospital but I basically lived off my inhalers for 2 weeks. Even since then my asthma has been out of control again, peak flow has dropped back down to 450. I have been on multiple courses of high dose steroids (currently on my second course of pred this month) and had multiple hospital admissions (the last was 2 weeks ago). As a consequence of meds and my poor mental health I have piled some of the weight back on, so I trying to set plans in place to lose it but its not easy.

I saw the Respiratory Team at the hospital last week and while my tests were on the low range of normal she noted that I have always tested well even in the past when I was very sick and she could see from how I was in the consultation that I was not well at all and asked had I ever been diagnosed with severe asthma. I said no just asthma and difficult to control asthma. Also when she listened to my chest she said could hear something on the right that wasn't on the left and that I had a wheeze both sides, so they are going to do more investigations to try and find out exactly what is going on in my lungs. She also changed my inhaler to Fostair 100/6 using MART which I can take with a spacer, but it doesn't really feel like its doing much. I am okay for an hour or so and my symptoms calm but do not go away and then they start flaring back up.

I was originially on the Symbicort SMART regime but my pharamacy struggled to get that so my GP switched me to Duoresp on the MART regime. I really struggled with the Symbicort and Duoresp especially during a flare because I couldn't get a deep enough breath out or in to feel like I was actually getting the powder into my lungs. My GP finally agreed to refer me back to the respiratory team at the hospital after a year or back and forth but wouldn't change my inhaler but hdid give me a ventolin with spacer instead to take during acute flares if I can't get the puff for the Duoresp. As above now on Fostair, which doesn't feel like its doing much.

I have been in a major flare up since the beginning of June when on the 8th June I was triggered by choke hazard purfume resulting in overnight stay at hospital and steroids. Then I was back in hospital that Tueday because work decided it was a great idea to paint the office. Fortunately I work at the hospital and was able to get help quickly but had another overnight stay. I was sort of picking back up until Sunday just gone where I had a terrible day. I saw my GP on Monday who prescribed more steroids and antibiotics to cover any potential lingering infection as I did cough up yellow gloopy phelgm and my temp was up to 37.5 which she said was borderline. My normal temp is around 36.2ish. I have been taking the Fostair x2 day and night as prescribed with a spacer, but I am needing to use it 3-4 times during the day. I know the pollen and heat are not helping things but I am not sure the Fostair is doing anything.

I don't want to go back to hospital but we are monitoring the situation as I have such varying experiences when I am there. Sometimes they are amazing and they take me straight through get me on meds / nebs straight away in quick succession to get things under control at one point my sats dropped to 87% and heart and blood pressure were through the roof. Other times I have been made to sit in the waiting room for nearly an 1hr and 15 min until I am so unstable I couldn't walk or talk (my mum informing the triage desk of my declining condition 3 times) before they saw me and then they spaced the nebs out for hours at a time (at one stage I waited five hours despite 6 requests for one and I was so drozy I could barely confirm my name and DOB), but I wasn't checked on again for another 45 minutes by which time the neb had helped a little and I was more coherant. Also they only checked my obs once when admitted to A&E and they weren't checked again for 8 hours even when I was really drozy until I was admitted to the ward at which point my oxygen was about 91% even with cough, temp was 37.8, heart rate in the low hundreds and my blood pressure kept going really high 153/114 . I was given back to back nebs on the ward and codiene linctus to try and soothe my cough, which was constant and exhausting. Got my levels back up to 98% - 100%, heart rate into the 90s but my blood pressure then tanked a bit at 112/62. They waited an hour to see if I would stabilise then did back to back nebs again followed by a saline neb and that finally seemed to settle it.

My main symptoms when having an exacerbation are tight chest, breathlessness and a riduculously loud and painful cough which starts off dry but eventually will become productive usually a thick clear or while muscus. I have also started to wheeze more which I never used to do, I rarely had a wheeze but on my last 3 admission, resp appt and at my last GPs appt I had a wheeze, but its always down low in the bottom of my lungs and so often they only check my upper lungs.

Currently even as I am sat here typing this my peak flow is down to 390, I am coughing and breathless with chest tightess down the bottom of my lungs, but I've just taken my night doses so hopefully that will pick up. I have done all my breathing exercises. I don't want to go to hospital, I hate going to hospital even though I am exhausted and because despite knowing I am sick I still feel like a fraud and an imposter because I know when I arrive my oxygen will be at 100% and so many health clinicians focus on that. At my last few admission my oxygen has been high to start with because I am over oxygenating due to increase breath rate due to breathlessness and coughing, but I know from experience it will eventually start to tank into then low 90's maybe even 80's but it could take a few hours. Even when its that low I can maintain sort of function although not great as I have shown for quite a long time, because of my horrid cough (which really I should be grateful for).

Anyway sorry for boring you all. Have anyone had a similar experience from having covid? What are your experiences with Fostair? Thank you in advance.

[Tiggertheterrier]

hi Beth_Beth_19

so sorry to hear about what you are going through. Its SO difficult to know what damage thr Covid did to your airways. Have they done a high resolution CT scan recently?? I only mention that as, although I don't think I've ever had Covid, my 'poorly controlled asthma' was found to actually involve bronchiectasis, which was only found after I stamped my foot and demanded a CT scan.

Various poor experiences with consultants and now waiting far too long between appointments have really eroded my confidence in the NHS.

I was on Fostair years ago but didn't get on with it at all. Recent trial of Trimbow was no better. Currently on Relvar 184 - 22 and Incruse Ellipta, plus umpteen doses of Ventolin.

wishing you all the very best in getting it all sorted out successfully!!!

Keep plodding on........!

[Beth_19 in reply to Tiggertheterrier]

Thank you for the reply. I haven't had a CT scan yet though I did have a full spinal MRI last year which showed disc degeneration, trapped nerves and start of cervical spondylosis so I don't know if they could see my lungs on there yet. I have received an appt to see the Repisatory Pulmonologist at the end of July for a check up.

The respiratory doc I saw at the Chest Clinic was absolutely lovely its A&E where I seem to have problems.

I might give it another week with the Fostair and finish my steroids and if I am still not okay I might give them a call and see what they want to do.

[Patk1]

I'd be adding in salbutamol,along with fostair when symptomatic. If u get mucous up,I'd put specimen into drs,check on right antibiotic.rest up,drink plenty of fluids,until u feel better.regular salbutamol shld help until exacerbation+ infection clears.do u have an asthma plan

[Beth_19 in reply to Patk1]

Thank you, I did end up taking some salbutamol because after I took the Fostair I had maybe an hour and half of relief before it came back with vengence. Ended up taking 4 lots of salbutamol with a spacer over an hour before it settled to level I was comfortable with and allowed me to get a little sleep.

My asthma plan is sort of out of dad because of the change in meds and seeing the consultant. I am due to see the Asthma Nurse next week for a review and get a new one. The Asthma Nurse didn't want to see me until I had seen the consultant because she didn't want to interfer with their potential plans.

[Poobah]

I feel so frustrated on your behalf Beth. Before I rattle on, I would say that I think you would really benefit from talking your case through with one if the Asthma UK nurses on the helpline. The number is 0300 222 5800 and it's open Mon to Fri, office hours.

The nurses are very knowledgeable and helpful. They'll help you advocate for yourself with your doctors in order to achieve a more coherent plan for your asthma treatment. At the moment it just seems too piecemeal and disjointed and it certainly isn't delivering, this fire fighting approach is dreadful.

It appears that covid has certainly been detrimental in the long term for you. I can really understand putting on some of the weight you lost (you're amazing for being able to lose 8st!!!), especially when you've been so unwell, it's extremely difficult to keep weight off. These two factors aren't resolved overnight and the covid alone has probably changed the asthma landscape for you, but rudimentary tests have only reflected that rather than drill down to the "why?" Better understanding should lead to more targeted treatment. Your team should be doing more investigations because the landscape has changed.

Treatment plans seem to be treating you as you were pre-covid, rather than looking at treating the more complex symptoms you're now presenting with.

As for A&E, the modern approach to attacks and exacerbations of asthma seems to be just a sticking plaster to get patients back home rather than ensure the exacerbation isn't going to flare up within hours after discharge. But as patients aren't able to have nebuliser at home, back they trudge to A&E. I just think there must be a better way to treat crisis. However, the respiratory consultant and team should be addressing the underlying control of your asthma if you're depending on A&E visits so often.

So we're back to advocating for better care and a better plan, that reflects your ongoing uncontrolled asthma. I hope the Asthma UK nurses can help with that.

Fostair: it's been the best inhaler I've tried so far. But I have non-eosinophilic asthma and my go to treatment for flare ups is Azithromycin, mainly as my endotype just doesn't respond well to Prednisolone. My respiratory team discovered this as I took part in one of their research projects and whilst I was a volunteer, I was treated like a private patient. It was a real eye opener.

Weight: my asthma is hugely affected by my weight. If it goes up, my asthma control is poor. If I lose weight, my asthma improves significantly. Is it easy to achieve? Absolutely not. The fight continues (intermittent fasting and low carbs).

All the best Beth.

[Beth_19 in reply to Poobah]

Thank you for the information that is helpful.

My respiratory team have asked for more tests to try and find out what is going on in my lungs because they did hear something on the right that wasn't on the left and also a wheeze both side, but I can't remember what they exactly asked for except for bloods as they were done on the day and the starter lung function tests. I am still waiting for my clinic letter as the doc was going on holiday the next day and wouldn't be able to sign it off until she returned. I think if I end up back in A&E I might ask them to contact the resp team now that I am officially under them instead of just the general med docs trying to treat me.

Weight loss is so unbelievably hard but I also know I have myself partially to blame as well as the meds as I took the easy options. I know what works to help me lose weight so I have rejoined the weight loss forum on here to help motivate myself. I have a weight loss goal but no timescale so as long as I start losing and keepin going so I am happy with a longer timescale than I did last time. I did calorie counting with a 12/12 fasting time so I only ate between 7-7. I struggle to do less than 12 hours space. I did try 16/8 but found I was either too hungry in the mornings or the evenings depending on how I tried to do it and ended up wanting to snack during the fasting time.

Ohh I forgot to say I am also on Monkelukast as well though it seems like it is less effective than it used to be. I am not sure exactly what kind of asthma I have because I've always just been told its asthma or difficult to control though I do know there are other kinds, maybe this time they will identify it better and that will help.

I did really well with Symbicort on the SMART regime until Covid but then I started to stuggle with the actual delivery mechanism with the Duoresp as well as they are both powder inhaler that you have to actually physically inhale and I struggled to get a good out then in breath so felt like I was not able to get the medication in my lungs so I was having to take much more. Fostair helps but its not helping for long but I know I am in an acute flare up and it can take time. I ended up taking Salbutamol last night because my night time 2 puffs only lasted about an hour and half.

Thank you for the advice about the asthma nurse I will check it out

[Ern007]

For me the best inhaler I have had is Fostair, I also have Atrovent and Salmanol - Salmanol is not all that good. but I swear by Atrovent. It's supposed to be a short term preventer but with COPD, it can act as a really good reliever.

I had Covid in 2021 and it lasted a long while, not just cough and chest symptoms, it made me depressed.

You really sound like you are stuck with you chest problems. What to do when nothing works proper - To me you need togoto your GP and tell them how you feel, nothing else, let them sort out what is causing your misery and let them find the answers. You clearly need help. tell them that,

My breathing has gone wierd and as my walking - I had had enough and phoned my GP, I wanted answers - My usual GP is not available until a week tuesday, recesptionist booked me in, she said I can get you in with a different doctor, I did not know what to do, my usual GP knows all my history - So I decided to wait, ok said receptonist, get on phone straight away if your breathing gets worse. Point is half of time it's hard to know what to do for the best.

Hope you are well soon ..

[Beth_19]

Thank you for your advice. I'm sorry you have been dealing with covid after effects as well, it is certainly a virus which has a lot to answer for especially for those with pre-existing lung conditions.

I've only been on Fostair a week so I am going to give it a little bit more time as I know it does take time to reach full effectiveness and I am in an acute flare up. I saw my GP monday and was given antibiotics and steroids. I'm under the respiratory team at the local hospital chest team so the GP is reluctant to prescribe stuff. I am due to see the Asthma Nurse next week.

I'm going to see how I go for the rest of this week and if I need to go back to A&E I am going to ask them to alert the resp team as I am now officially under their care instead of just leaving it with the general med docs.

I am glad to have people who can relate and understand, it makes me feel less alone and less like an imposter. Thank you again.