Walking the tightrope

[EmmaF91]

What do you do when you’re at the beginning of a flare and you’re not great but not bad enough to see anyone/do anything?😬😅

I’m currently on a very slow downwards spiral which feels different to usual due to starting mepo I think. I’m quite tight and have a poor PF (45-60%), but otherwise no (or very slight) wheeze/cough and only mildly SoB. I have no signs of infection/cold other than sneezing more/mildly runny nose (from allergies I think) and a headache from the mepo. 99% sure this is all triggered from the weather change as it started over a week ago and has gradually worsened (Coincided with the week pre-mepo so assumed symptoms were due to that 😅)

I’ve upped my pred to 30mg but I’m still relying on my ventolin ever 4/5 hours. I defo don’t feel bad enough for hospital but I know my GP can’t do anything more other than nebs which realistically I can just do at home and still don’t feel bad enough for. So what do I do now? Usually I’d just wait it out til I feel it (much to my hosp/GP horror/hatred!), but cause it feels different (not necessarily in a bad way) I thought I’d ask what you guys do... should I wait it out til I actually feel bad, or do I ‘kick up a fuss’ and if so with whom? As I said I currently don’t actually feel that bad (so would defo feel a fraud if I sought help), and it’s only mildly limiting my daily activities, however I’m known to ‘underestimate’ my symptoms/condition, hence the conundrum.

Thanks guys

[Shellc]

When did u last have mep ? If it’s coincided with having it in last week after mep , good chance it could be mep , what number mep was it ? Have u had before after mep ?

[EmmaF91 Community Ambassador in reply to Shellc]

It was my 2nd injection. After the first I had a prolonged headache/migraine and general musculoskeletal aches and pains, but my breathing and lungs were brilliant until a few days before my next jab was due (it had just started to get cold so was it weather or was it jab?🤔) - I had very mild SoB and tight chest at an ignorable level 😅.

Had the jab last Friday (5/6 days ago) and was hoping for the same reaction for my lungs (ie remove all symptoms 😅) but hasn’t really effected them hence why I’m now blaming the weather 😔. On the day of jab my PF was 60-70% but I was only on 10mg pred (I resent increasing it when I’ve just got to baseline unless I really have to!😅). I also had an ‘odd’ reaction of an itchy/weepy eye which was relieved by an antihistamine so 🤷‍♀️

I’m swinging between letting the asthma nurse team know, talking to my GP or just ignoring it (we all know which one I want to do I think 😂🙈)

[utkmybrthawy]

testing

[Lysistrata Administrator Community Ambassador]

Oh the eternal dilemma! I have this so much and I always struggle with what to do, even though I keep being told to tell the asthma nurses when it happens. I also prefer that nice Egyptian river lol.

I have friends at RBH who have contacted the nurses in this kind of position, and I suspect you will be told to go to your local A&E if you contact them. I suppose worth a shot if you want to show you ticked a box, but I suspect they won't do anything very practical from my secondhand experience, besides send you in to be safe. Where you probably won't get very far - I know the limbo states where what's acted on with a 'normal' asthmatic gets you a 'what are you doing here?' if you're a frequent flyer! At least if you tell the team, you can feel like you've tried that avenue and know that if you have to go in then it probably is needed.

Given that you don't tend to show symptoms and have to rely on PF, however, you clearly need to be careful and not ignore, as it may well be about to tip. Given my recent experiences as someone who was sure I was a 'slow burner', I am starting to actually get my head round the idea of things going off quickly - my numbers were low last week (even PF but the FEV1 of 36% predicted was more of a giveaway for me) and I ignored them because I felt ok, then got caught out.

Would it be worth trying a neb to see what happens? Sometimes I find just one can push things back, and it might help to see if it gets the PF back into a range and stays there. If dropping again - you may have your answer. You could after that (or even sooner) pass the buck to your GP too...if they want you in then it's out of your hands!

I hope this is useful - I do find it's often a case of weighing up 'what should I do?' and ticking some boxes as well as the 'if I do that will anything useful actually be done?' At times I feel like I need to jump through the hoops, which is annoying but at least then I feel like I didn't just rush to 'make a fuss'. In your case though with a history of not noticing and those numbers, I think it would be advisable to contact *someone* - they seem keen for you to do it anyway, and I presume you don't have as much of a strong hang-up as I do about it after years of being told I shouldn't have gone to A&E and what was I thinking. [Current lot don't but wow, that feeling does stick in your head and I've never had anyone contradict it strongly enough to make it go away].

[Lysistrata Administrator Community Ambassador]

Just wondering, have things resolved either way? Hopefully in the right direction but lungs are of course cussed and tend not to do what you want!

I hope you enjoyed your birthday anyway crossing fingers for wiser lungs now they're older...

[EmmaF91 Community Ambassador in reply to Lysistrata]

So in the end I decided to keep stumm and just see what develops 🤫😅. At the moment using my ventolin does help pull me up to a reasonable number (400 up from around 300ish☺️) and helps the symptoms I am getting. I’m just taking it every 4 hours 🤫. I had a neb yesterday just to see the results and felt fine for 5/6 hours and my PF significantly increased (480 from 290) then it returned to where it was pre neb 🙄. At least I know it’s not worth going in yet cause I didn’t get the post neb drop at the 1-2hr mark 😂.

I’m going to play the waiting game and see how I go on 30 pred and regular ventolin. If I have issues will go somewhere but tbh I really don’t feel that bad, it’s just bad numbers and some SoB (and wheeze according to the parental’s) 😅. Will see someone next week if I get worse after lowering the pred 😬.

I know if I talk/email RBH they’ll say see how it goes and go to hosp if needed (which I really feel like I don’t atm!) My GP always sends me in when I go to them with asthma 😒 (unless it’s a check up after admission 😅). TBH I usually use them to kick my butt into hosp cause then I can’t be labelled a fraud cause I’ve got a docs note with the obs that they saw 😉. (Plus then I’ve jumped all the hoops so hosp can’t say ‘why didn’t you see your GP)

Here’s hoping it’ll all calm itself down now my lungs have a year more experience of how to breathe 😂.

My birthday was good however stuck at home cause mum was in a prang the night before and her boot is concertinaed in (she’s fine just upset that she needs a new car 😢😂). We sorted out Christmas presents instead 😆.

Hope you are well x

[Lysistrata Administrator Community Ambassador in reply to EmmaF91]

290 wow! Given I know your best is same as mine...I can be sitting in resus with lines coming out of me and I still won't be that! Except last time when I was 280 post lots of salb and it was just middling. I don't want your lungs but the rational way your PF behaves would be useful lol...sorry ramblign on about me!

Glad to see it's not too terrible overall but the limbo is never fun. I hope it resolves the right way! I also do that whole thing of getting someone else to make the decision so I'm 'covered' - it used to be 111 but then I discovered they have a twitchy finger for the 9 button and I don't really get on with paramedics. The last 2 times I blamed my colleagues lol - it was actually less stressful that I didn't have to make the decision myself. I actually am quite bad and never see my GP after admissions as I always feel like they can't do anything.

re your mum but glad she's ok - hope it was a nice day anyway! Are your parents drs/medical ppl (the wheeze?) or just tuned in to your noises?

I am back working from home but not sure my brain has caught up yet.

[EmmaF91 Community Ambassador in reply to Lysistrata]

290s nothing... my worst was 170 😅 - I had a chest infection mixed with attack 2 days earlier and having unexpectedly to move house (pack, find somewhere, transport it all, unload/unpack) so a lot of exercise and dust during hay fever season... unsurprisingly that’s the time they were about to intubated me but my lungs decided to behave just in the knick of time!😬. I won’t go anywhere until I can’t get myself above 300 (or can’t remain there depending on my symptoms/mood/life)... I know I know I shouldn’t wait that long but I’ve found I’m more likely to get the correct treatment then rather than having to yo-yo til they give me the hydro I need 🙄. Depending on the doc/hosp I’ll either be whizzed to resus, made to walk to majors or just sent to minors at 300 so... (tbh my current hosp it’s good and it’s been majors/majors lite, my but old hosp once they knew me it was resus, when they didn’t it was minors so 🤷‍♀️) We know how my PF acts ‘normally’ whereas yours is stubborn Miss ‘life-threatening attack, green PF!’!

No limbo is always horrid, but I know usually at this level I ‘feel’ it more - Guess the mepos doing something 😅. I never use 111 solely for that reason - say SoB and it’s ambulance time 🙄. Never had someone else make the decision for me (other than docs/ANs) but guessing it relieves some of the guilt/pressure in a&e when/if you come against opposition!

I use my GP as a drug dealer post admission - my local doesn’t stock ‘red’ pred so always need to stock up for a tail off plus more ventolins!!!

My mums an OT (and also asthmatic), my dads nothing medical but has listened to me often enough that even he can hear things now when I’m bad 😂😅. TBF my muttley laugh is usually a good indicator that things aren’t right as is the looooong exhale wheeze/whistle when we’re watching tv 😂🤫.

Yay for your body being ready, now just to call your brain back from vacation (unless it’s still on the pred-plane!)

[Lysistrata Administrator Community Ambassador in reply to EmmaF91]

lol I have the same calculations you do just not based on PF hehe ie sometimes it helps to wait longer and go in worse then get proper treatment. Except when it doesn't (I think I shocked everyone with my last admission saying 'yeah I'd have waited a few more hours if I'd been at home' - which perhaps would not have been a good move! A&E were actually fine but I felt more like I *could* blame work. But yes I do do that calculation if it's just me of thinking 'can I go yet? can I pass the buck?'

Hope the mepo actually is doing something, have the side effects settled at all? You'd have been fun for the pharma companies if you'd been on the trials with these various reactions! Crossed fingers it starts to settle lungs without annoying other parts.

My body is not entirely ready tbh lol but it's about as good as it's going to get (well maybe not...I hope...I keep getting weirdly low FEV1s (even more than usual) and wondering if i should mention them. I think my asthma team is a bit too used to that being crap now though. Why can I not combine them into one rational marker instead of having one low and one high one?

No pred for me - I feel like these last times it could have been useful actually given FENO was middling not low *after* hydro - maybe something to replace that IV hydro would have been good?!

[EmmaF91 Community Ambassador in reply to Lysistrata]

No still got the headache/LBP/muscle&joint pains from the mepo 🙄. Have also realised that I’m a lot more ‘spotty’ and have been since the first injection 😒. The eye is still giving me a bit of gip still too so having 2 antihistamines a day to ‘solve’ it. It’s very frustrating... but hey at least I make life interesting for the ANs when I visit 😂 - the pharmas would definitely hate me tho!!!

The mepos definitely helped the asthma tho. It’s why I don’t know what to do now... usually at this point I feel moderately asthma-ry all the time and I’ll need 10 puffs every 3-4 hours to stay above 50% but currently despite the steep falls, 2-4 vent recovers it and lasts just over 4 hrs with only mild symptoms (even for my symptom misjudgement unless I’ve got even worse at it!😂).

Ahh! You’re doing the ‘fake it til I make it’ approach to health - I’m a student of that philosophy too 😅 (probably why I get so bad 🤫). Yeah you should probably mention that to someone (a bit like I should probably mention my situation to someone 🙈🙉🙊). It’s because you’re a strange and unusal being... what is normal and what isn’t 🤔🧐? You break the rules and wave the broken pieces on a flag pole for all to see 😝!

I hope you start to feel more ‘you’ soon! X

[Lysistrata Administrator Community Ambassador in reply to EmmaF91]

hehe I love the 'flagpole' analogy! Pretty sure my lungs are basically absorbing knowledge and messing with me/everyone else by randomly doing stuff differently. The team have decided to 'wait and see' if I get more eosinophils before doing anything, even other tests.

Ugh to all the side effects...has your body read up on them? It's like it's playing bingo with the adverse events list ('how many system/organ/class categories can I get at once?') I'm *so* glad I don't work for/with anyone making the current biologics or I'd go nuts on here - when I worked for another company (on entirely unrelated drugs, in case anyone here thinks I am a pharma spy) we were told we had to report it any time someone told us about something and they were on one of the company's drugs, even if it was ridiculous like 'ooh my foot itches on Tuesday mornings, did I mention I'm taking x drug?' I remember thinking social events with the pharmacovigilance team must be a blast. Hope yours all settle down soon as it's clearly helping asthma-wise.

Yes we both seem to enjoy taking cruises down that river... I always am better at telling other people what they should do! And being assertive on their behalf - I have suggested to a friend that we should swap and go to each other's appts since we would be great at advocating for the other person lol.

[Js706 in reply to Lysistrata]

Ahaaaa the joys of peak flows 😂 I know my best isn’t quite as high as you two but think the worst I’ve ever managed was 90 on arrival at the resp unit (after about 5 hours in resus!) - funnily enough that was the two week stay on hdu! 😅

I really hate the tightrope act! Such a pain. I often find that people on placement try to make me go in waaaaaay earlier than I normally would because the Muttley laugh etc really freaks them out - whereas I’d normally just go chill in bed for another day or two with that haha.

Glad the mepo seems to be doing something! Although shame about the low numbers - hope they pick up soon!

I’m currently in a battle to keep my xolair. Because apparently the fact that I’ve gone from virtually housebound to being on placement full time again isn’t enough evidence it’s helping 🙄🙄🙄

[Lysistrata Administrator Community Ambassador in reply to Js706]

Ugh nooo Jess that's rubbish re the Xolair! I know nothing about the ins and outs but do know others who have managed to stay on it in similar circs ie QoL - hope Emma and others can advise on how to fight, but not what you need!

Hope placement is going well and you're not scaring people too much with the noises! I always get the health and safety argument - the head of HR thinks my colleagues wait too long, I think they're too hasty!

[Js706 in reply to Lysistrata]

I’ve managed to get to a new maintenance pred dose of 25mg now (which I’ve only managed for a grand total of 2 days this year before, and was in hospital within 24 hours on both occasions!) but I’ve been on it for a week now with no issues! 🎉 So hopefully that will persuade them.

Also hopefully will avoid admissions for a bit longer this time - I have 2 months until another xolair review so fingers crossed!!

The weird noises tend to make patients laugh 😂 especially if they know muttley! It’s just the staff that panic! But placement is really good thanks 😁 it’s SO good to be back doing something, even if it is exhausting

[Hidden]

You’re bad enough to see someone. Do it and you might be able to prevent it from spinning out of control.