Silent Brittle asthma

[Echoblue]

Hi, am new to this group and hoping someone may have had similar in as much as help point me in a better direction?

I have had asthma since childhood, pretty much being triggered by allergies and virus’. 9 years ago everything went haywire and I ended up being admitted for 2 weeks, out for 2 weeks then admitted again. This went on for 6 months when I was referred to a Severe & Brittle Asthma unit. In amongst treatment I had nebulised magnesium sulphate that worked well for me. Everything settled down and I ended up with pretty much no flare ups and my Salbutamol inhaler would run out of date before it ran out ..... life was good again.

Occasional flare ups I could manage with nebulised Salbutamol and Ipratropium. I take fexofenadine so didn’t get set off by allergies very often.

In December last year I had a very minor cold and since then I have spiralled into a completely uncontrolled state again. I can now only take really tiny breaths (it is like a concrete band wrapped tightly round my chest) and I can literally sit and watch my sats sliding down and up and down again! When my sats drop it feels like my head and chest are going to explode.

After an admission in January this year IV Magnesium sulphate immediately brought my breathing back to normal and by the end of the IV my peak flow was back to my normal 450 so I was discharged. Over the next few days my peak flow started to slide again despite nebulising and after 2 weeks my surgery asthma nurse contacted my local hospital ambulatory centre and arranged for them to give me another IV of the Magnesium. It immediately worked again. This has been my life ever since. Having to have repeat IVs every 2 weeks as my breathing gets tighter and tighter until I can’t carry on any longer.

The asthma nurse at the hospital said there is no evidence for repeated use of the IV so has banned them from giving it to me ..... despite my asking what else she suggests - to which I was told that without any diagnosis as to what was going on she couldn’t suggest anything else! I have therefore been struggling on for 4 weeks with a peak flow of 80. A recent flight was nigh on unbearable - my chest and head felt like they were going to explode with intense crushing feeling, like I was in a vice, I am guessing it was the air pressure combined with my low oxygen levels.... whatever it was, it was horrible!

A couple of days ago I couldn’t keep going any longer on these tiny breaths (yes, my breathing is now dysfunctional, but that is through necessity to be able to keep breathing and to keep my sats as up as I can, however I do keep my breathing as effective as I can so as to reduce hyperventilating ) so I went to A&E. Thankfully I saw a great Consultant who went straight for the IV when I explained my situation. The IV worked straight away again. Peak flow 80 before and 420 after. I never wheeze and I become totally silent in my breathing, therefore no breath sounds before and normal breathing and breath sounds after. I asked how I get that message across to the next clinician and they said “I believe it now I have seen it, but no idea why” that isn’t much help when they won’t necessarily be on duty next time!

Hospital won’t let me try the nebulised magnesium sulphate which had worked 9 years ago as they said it isn’t licences for that, but they have no other suggestions other than come back to A&E!!

A&E every 2 weeks is currently my only option, which surely can’t be a great use of resources and it is so exhausting trying to explain what is happening each time and what I need, it is like running a gauntlet of added pain and stress just to get that window of relief.

I have tried to get back to the Severe & Brittle Asthma unit and my GP did an urgent referral for me .... which came back as “we will respond to your referral within the next 18 weeks” 😩

CT scan clear, bloods mostly normal (raised IgM, low IgE and low platelets) and no one seems to have a clue where to send me for answers! Have had 2 appointments at the hospital and saw asthma nurse each time, not a Consultant and the nurse said I have restrictive spyrometry but no wheeze so the 90 must be my new normal and to live with it!! 😳 when I questioned it She emailed me a link to well-being to help me come to terms with it (whatever it is!!)

My GP is happy to refer me anywhere (I am in Cambridgeshire) as he recognises this is not normal and whatever is happening is atypical, but without knowing the diagnosis it is hard to know what speciality to home in on.

I have privately seen a cardiologist as they wondered about a cardiovascular element, but thankfully echo etc all clear so not cardiovascular.

Any suggestions much appreciated.

[twinkly29]

That all sounds horrendous. It's hard enough being "difficult" (in a breathing way, not being an arse!) without having to fight for what you know works.

Addenbrooke's has a difficult asthma department and Leicester are supposed to be very good with it too.

[Echoblue in reply to twinkly29]

Thanks twinkly29. I have just heard about the Addenbrookes clinic from someone else too so thanks for letting me know about that.

It wasn’t around when I was having an awful time previously and the Respiratory Consultant who specialised in allergies at Addenbrookes promised all sorts of tests and investigations, but didn’t actually do anything in the week I was there!

I had also heard great things about the Leicester centre.

I was only trying the Birmingham one again as I had a week there of multiple tests including bronchoscopy etc there last time and thought they could use those results as a starting point rather then having to start totally from scratch again. Sadly common sense appears not to have been the best way after all!

[Echoblue in reply to twinkly29]

I promised to update ........spoke to my GP this morning and asked about a referral to Addenbrookes to seek answers and said who I wanted to be referred to ....... he is referring me to Dr Gore in Respiratory and Dr Kururunatne in immunology for a double pronged attack without question! Sadly I note there is around a 12 week wait for each, but hey, miracles happen 🤞🏻🤞🏻

Thanks for all the support and suggestions. Much appreciated x

[EmmaF91 Community Ambassador in reply to Echoblue]

Hi

I’m under Dr Gore. He’s been great with me and I can really recommend 😉

[Gareth57]

Hi, this all sounds terrible, but a couple of thoughts have sprung to mind. If the magnesium IV works have you tried either magnesium tablets, which are sold as a mineral supplement, or Epsom salts (magnesium sulphate) for bathing, regular use of either may do the trick and keep you out of a&e, and if it works you could probably get your gp to put them on prescription if it works out cheaper.

Good luck

[Echoblue in reply to Gareth57]

Thanks for the thought Gareth57, I enjoy my regular Epsom salts baths and do take Magnesium tablets in the hope they help, but sadly have so far failed to halt the repeated slide.

I did some further research and found the tablets that should have most impact are Magnesium citrate and a minimum of 300mg per day. I think I may not have been taking a high enough dose or right variant of Magnesium previously. I started these 300mg ones on Saturday.

After the IV my body seems to be able to hold up for about 4 days before the slide starts again. Hoping this combination may at a minimum slow the decline and at best halt it whilst answers are sought!

Many thanks for your thoughts.

[hb1977]

I’m looked after in the Addenbrooke’s unit and can recommend it for working with me to help me manage things better!

[Echoblue in reply to hb1977]

Thankyou hb1977, very reassuring.

[hilary39]

This sounds so scary and I'm so sorry you keep going through this. Having your peak flow drop so dramatically must be frightening!!! Keep advocating for yourself and seeing as many doctors as possible / your health system will allow!

It's so hard when you know what works for you and are trying to calmly explain your situation to doctors or nurses who are in a hurry and have pre-conceived ideas about asthma. Many asthmatics do not wheeze or have a big drop in peak flow readings during acute attacks yet the majority of doctors who aren't pulmonologists don't realize this and thus tend to under-treat those kinds of attacks.

It's exhausting to have to self-advocate when you're feeling wretched, I completely empathize with that.

I have found magnesium pills help my asthma but when I take too high a dosage (over 400 mg), it can upset my stomach.

Good luck and keep us posted!!

[Echoblue in reply to hilary39]

Thanks hilary39, that sums things up really well. It is genuinely heartening to know I am not alone as so often you end up starting to doubt yourself as the clinicians try to crow bar you into their tick boxes and if you don’t match those then it can’t be real!! 😳🙄.

I try so hard to keep a calm assertiveness and remain consistent but it is not easy in A&E when they ask you the same thing for the umpteenth time and all you want to do is be in “the zone” of concentrating on trying to breathe! I definitely did leave it rather too long this last time as I had been so traumatised by my previous experience where a Consultant was absolutely horrendous to me. A Registrar was concerned about my deteriorating and sought a second opinion, he blustered in, took a cursory glance at the readings and asked why I had bothered to go in as I wasn’t wheezing and my oxygen levels weren’t too bad! I ended up being admitted, but he was so nasty in the way he spoke to me it was belittling, almost humiliating when I was already very vulnerable - I was sat there because my GP had called the ambulance while I was at the surgery ... and I just wasn’t up for putting myself through that again. Thankfully this latest time, although not easy, was at least not traumatic.

[RuralLad]

So sorry to hear this. I don't have the expertise to offer anything but moral support, but was also recommended by my GP a magnesium oil which you can spray onto your body as a way of getting more into it if you can't take sufficient by mouth - this was for frequent leg cramps, not asthma, but if you need it ... Available over the counter from chemists. I use one called Goodnight from BetterYou, which has other essential oils such as Bergamot with it.

Saying that has also triggered the thought - have you tried alternative medicine as a last resort? - herbalist, essential oils? I find inhaling neat bergamot, juniper or lavender fumes straight from the bottle can help a bit during an asthma episode (and I don't wheeze either) - a more knowledgeable friend than me has also suggested eucalyptus, cypress, camphor or clary sage, beneficial as steam inhalation or a drop at edge of pillow. Sorry I can't help more.

[Echoblue in reply to RuralLad]

Hi RuralLad, thanks for your thoughts. I have looked into the spray oil and nearly bought some on Saturday but when I looked at the quantity needed 10 sprays gives 175mg magnesium, to get the 300mg I would end up coated and with repetitive strain I reckon! 🤣🤦🏼‍♀️ hence why I went for the tablets in the end. I have trained in aromatherapy previously so will revisit some of my books after your suggestions. Thankyou and keep well x

[RuralLad in reply to Echoblue]

Ah, understood!

Interesting you've previously trained in aromatherapy, would be very interested to hear your findings & thoughts once you've delved a bit further. Thanks, and best wishes to you.

[Echoblue in reply to RuralLad]

Ironic that I didn’t really even think about the trying to manage my own situation with aromatherapy when I helped so many others over the years. I haven’t done any for a few years so a little rusty on the detail. I will need to delve a little to see what is appropriate.

The key with the oils is to be mindful of some of the potential negative effects eg a little lavender is great for aiding sleep, however too much is a stimulant!!

[Mogget]

I'm so sorry to hear you're going through this, it must be awful. I wonder whether you might qualify for one of the biological injectable treatments like Xolair or Nucala? Definitely something to discuss when you (eventually) see a consultant. I hope the magnesium citrate offers some relief in the meantime - it's something I'd like to try out too.

[Echoblue in reply to Mogget]

I did have Xolair around 9 years ago and it worked for a few months for me then effect seemed to reduce so they stopped it. I can’t remember all the detail as it was a while ago, but I do remember having it as had to keep going back for the injections and they had to do it really slowly as it was so thick and gloopy!

[Mogget in reply to Echoblue]

Oh that's interesting... perhaps a different biological treatment might work - I've also seen one called benralizumab mentioned on this forum. I guess you know what your triggers are? Not that the knowledge makes much difference! I've had a tight chest everyday (though not as severe as you) for 12 months as literally anything and everything seems to set me off. Have you been tried on different preventer inhalers? Sometimes it can be a case of finding the right one. I also started on theophylline a couple of months ago which I think has made a little bit of a difference.

[Echoblue in reply to Mogget]

Thanks for the ideas Mogget. While there are still ideas there’s hope in my mind!!

Been the rounds on preventers, they have just stopped Serevent as I was informed it was doubling up what is in Fostair anyway (GP was throwing everything at me in desperation bless him) so on Fostair and Montelukast at the moment. Have over the years had Spiriva and Singulair and can’t remember names of any of the others that they have tried 🤯.

It is tricky when I went through so many years not needing anything, so I probably need to remain open minded to try some things again now as situations change and maybe what didn’t work then may do so now and visa versa. Will definitely be booking a call back from my GP for tomorrow and pushing for referral to Addenbrookes or Royal Brompton. Mrs-niceguy-polite-and-not-want-to-bother-a-GP-straight-after-bank-holiday has left the building 😉😂.

The wonderful people in this forum have boosted my resolve .... I need and deserve answers 💪🏻🙌🏻👍🏻 x

[Mogget in reply to Echoblue]

Haha, a desperate GP once doubled me up on Serevent and Fostair too until a consultant put a stop to it! I've just been switched from Flutiform to Relvar Ellipta so we'll see if that makes a difference. I know what you mean, I went through a period only a couple of years ago not even using preventer inhalers (which was silly in hindsight as I did technically have asthma even if it didn't feel that way). Yes, perhaps it might even be the case that Xolair might work differently for you nowadays...

Yep, we have to be our own advocates! Push push push! Fingers crossed for referral to a specialist place and a speedy appointment with it x

[Echoblue in reply to Mogget]

Many thanks Mogget and all the best for you too, I do hope you are able to get some relief for your long period of chest tightness 🤞🏻🤞🏻

[twinkly29]

A friend was put on the ellipta inhaler in the autumn and it's been fab for her. She's quite classically asthmatic though, don't know if that affects things.

Addenbrooke's stopped my Qvar as apparently it doesn't work on top of Symbicort. However, last summer my new consultant put me back on it (although he went for pulmicort because that's the same steroid as in Symbicort) because he wanted me on max inhaled steroids because they don't increase my pred on admission due to it causing immune issues for me over time.

[Echoblue in reply to twinkly29]

Thankyou twinkly29, very interesting and I will make a note of that, I have been on Symbicort before, but not Pulmicort. I have also previously had Qvar which was stopped after I started with Fostair.

There does seem to be quite a lot of correlation with immune issues with many people and is certainly something my rheumatologist is wanted immunology involvement with for me too.

It just all takes so long to get appts ☹️

[Stephxmx]

Have you been given theophylline tablets they worked for me until I was unabke to hold down any tablets, now I have a bricanyl pump which has kept me out of hospital for 6 weeks the longest ive been out since Christmas. I wish you all the luck with your Asthma, i know how hard it is trying to get asthma nurses to listen, my consultant gave me home oxygen as my sats drop, but the asthma nurse tried to say I didnt need it and has been trying to get it took out of my home, i said how can you try and over rule my brittle asthma consultant.

[Echoblue in reply to Stephxmx]

So sorry to hear you have had to battle so much. I haven’t had theophylline tablets, but have previously had it IV. Sounds horrendous having the threat of your oxygen being removed from you. Good luck with your ongoing battle.

[Stephxmx in reply to Echoblue]

I would recommend you ask for the theophylline tablets, as they weee a great help, but I suppose its like any medication it can work for some and not others. The best of luck x

[Echoblue in reply to Stephxmx]

Just had a quick read up about them and yes, I agree, they do look a high possibility. I will certainly ask the question. Many thanks. Half the battle is just not knowing what is available.

[Stephxmx in reply to Echoblue]

Giving it a try is worth it, i swear by my bricanyl inhaler i think its better than salbutamol, but as said before i also have the bricanyl pump, its gave me a better quality of life. I was stuck in hospital on iv aminophylline for 12 weeks, every time they would stop it i would end up with an emergency call, as my stomach doesnt absorb any tablets, also ezythromycin antibiotic is good for stopping inflammation in your chest.

[Echoblue in reply to Stephxmx]

That sounds awful and frustrating for you.

Sadly I can’t take Azithromycin as it brought me out in a rash ☹️. The joys of our mixed up bodies!!