In for my seconded mepo today (and possibly last if I get the same aches and pains despite it being brill for my lungs 😕).
Apparently they’ve written on the staff whiteboard that it’s my birthday tomorrow, so every time a doc/nurse/HCA walks past I get congratulated 🎉😂☺️
I suppose their are +’s to getting a birthday jab 😂😂😂
Hi Emma I got taken off because of aches and pains , can u describe them to me . Docs denied it was the injection and then changed their mines , also read drug company reviews which patients had myalgia with it , to me if do many pStients having this then it needs to be reported to drug company
For me it’s basically hurting all my old injuries and lengthing recovery time.
For example I’m getting central LBP on the smallest amount of activity when I wouldn’t usually expect to (ie doing my job).
I have a knee issue where it occasionally locks, is very painful and I have to ‘force’ it to straighten. Usually the pain lasts a couple of hours after (max) and the apprehension disappears after I go to sleep. It happened after the mepo and hurt for 2 days then apprehensive for the 3rd (it’s never been like that before!).
I had a migraine (usually a 1-2 day experience for me) but it was around for a week in the background, threatening to reemerge.
On top of that general shoulder aches and pains, neck pain, wrists and hips. Also general background nausea but hey it’s a good way to loose weight 😅.
I was sore for 3 weeks (especially the first 2) then it started to calm down, which coincided with my asthma worsening too.
My ANs have said see what I’m like after today, cause it could be because I’ve lowered my pred or I could adapt to it. If it’s not as bad this month it’s worth persisting and seeing if the aches calm down over time (like my HAs did on xolair), if it doesn’t calm they’ll think about stopping it.
It’s been brilliant for my asthma (I’m off of theophylline, at my maintenance dose pred for the first time since June and until this week pretty much asymptomatic) just my body currently hates it! I’ve spoken to others here (on reslizumab) and they had the same problem on mepo and got changed and are great now (no pain no asthma).
Funnily enough my dysmenorrhea was less painful this month... not sure if it was a one off or if it’s cause of the mepo and something I should mention to my GP (I’m currently medicated for it, but got no diagnosis other than bad period pains 🙄)
Hope that explains what I’m experiencing 😅
Sounds very much like me , arms shoulders and hips , the hips calmed down by left with excruciating arm pains which rheumatologist have says is tendinitis but never had it before mep, mep caused fatigue like I’ve never had.I was able to cut pred and they thought pain was body not coping and cortisol levels low. Resolved that but still getting horrendous arm pains . To top it all off my outpatient appointment in December to discuss it has been cancelled and rescheduled for April
I am shattered, however I used to have ME/CFS which presented post-viral... I always blame tiredness on that 😅
Yeah that’s basically what they said to me... the aches could be cause I’ve lowered my pred... however this will be disproved if I stay at 10mg and get worse pain again.
Oh no! Isn’t there a way to bring it forward if you need it?
Incidentally happy birthday for tomorrow, which hospital are u at ?
Thank you 😊. I’m in RBH (atm til I move to Norfolk 😬), counting down til I’m allowed to leave... 1 hour to go 😅
Well I worried them cause my eye started itching and watering 1hr20 after I got stabbed (resolved with antihistamine). They’re gonna discuss me with the consultant on Tuesday and decide what to do (stay or switch). Maybe I’ll be swapped sooner than expected and not because of the aches and pains 😅
Happy birthday for tomorrow 🎂 🎈 🎉 🎊 Will you still be in the hospital? I hope you have as wonderful a day as possible 🎁
Thank you 😊. Nah I’m only in to get my mepo... whist my PF/spiro isn’t great atm (about 70%) I’m feeling fine so will get my freedom!!! 🥳
That’s a cause for celebration all by itself 😁 Have a lovely day 🍰🍫
Perks of being 'known to the team' (which I always feel makes me sound like a criminal lol).
Very happy birthday for tomorrow ans I hope the mepo sorts itself out. Benralizumab is coming soon too for those who are eosinophilic but can't have mepo, and is subcut not IV if you prefer that.
Thank you 😊. I know what you mean... but then I do call myself an inmate if I’m admitted so... 😂
Ooo sounds interesting. TBH I don’t mind either way, however knowing my veins the hosp will probs prefer the subcut 😅
Might be easier overall! But hopefully mepo will work.
Lol re the inmate, I think the same! Hoping to get time off for good behaviour atm ie home today, but only if I can manage off nebs. Not sure I trust them not to decide that for me as medics were not the listening sort (either way - 2 secs listening ooh you look well and no wheeze.) Everyone has been spraying this time! Resus, admissions, even resp.ward...gahhh. Now trying to decide 're neb.
Sorry that became a rant! Hope your Norfolk move plans going well.
Well I worried them cause my eye started itching and watering 1hr20 after I got stabbed (resolved with antihistamine). They’re gonna discuss me with the consultant on Tuesday and decide what to do (stay or switch). Maybe I’ll be swapped sooner than expected 😅
I hope you get out today (if you think you’re well enough!) it must be very frustrating them not understanding that you’re a special case 😒😅
Asthma team/physio better but just not sure I trust anyone after June experience- no back up from asthma team then against some frankly horrible medics who made me.sound like some kind of neurotic malingerer for wanting another 12 hours as per guidelines.
Nurse is doing the 'if you hsve one it will delay home' which is making me doubt myself. I k ow that but if I need one then need to be in reach of them.
Any birthday plans? Ugh to eye watering. You like to make life challenging for them (so do I lol).
If you need a neb you need it... but it does mean a delayed release (unless you have them at home!)😔. Glad you have a bit more support this time (even if it’s not great!)
No birthday plans really... I’m working tomorrow, but will go out with a friend to lunch on Monday.
Yup... I shouldn’t have said anything 😅. One AN got told off my the other for saying it jokingly to me but loud enough that everyone heard 😂 - *to the whole ward* ‘no please do tell us any issue!!! Please ignore her!!!! You defo need to tell us any issues’ - esp as I was ticking all the boxes for allergy (only get eye symptoms on bad allergy’s - contact with cats/dogs/early hay fever season, plus the timeframe and the *maybe* itchy lips... 😅 defo making it difficult for them... left with the instructions to email them pictures if I get hives/angioedema again 😂.
... at least I’m not as troublesome as you... I’m a normal asthmatic- I just like to throw them curveballs 😝
It should mean delayed release but I find there Is a lot of variation in the attitude. Medic cons this morning was like oh yes probably today rather than let's see how you go off the IV hydro and nebs which the one yest would have. In June they just went on about how nebs make me feel better but I don't need them now and am fine - nurses not happy!
Hope your birthday at work is nice ans there is cake st some point 
I am undoubtedly troublesome lol, paramedics even said so after reading my summary which they loved (another blue light special from work on Wed...). Team is still doing watchful waiting which. Akes sense but aghh.
Oh I know what you mean! Very few docs seem to understand you’re meant to be off hosp meds for 24hr before release... every time they let me out early I’m back in a couple of day... whenever we wait I’m good to go 😅 (I swear my body has ODD!)... yeah you should probs be off the hydro for 24hrs before release! Luckily my current hosp (which I’m about to lose 😣) are brilliant about nebs... in a&e ‘well they’re really just a smoke screen... if your still symptomatic after 2-3 we need to give you something else, even if you have improved’- I was so happy to hear this as I’m used to ‘well you’ve responded well to so more/home. No I don’t think you need hydro/mag’ 😒!
If I get to the resp ward they now follow my lead about release (last time I stopped my antibiotics cause I knew I didn’t have a bac infection, told them 3-4 hrs later on rounds and got told ‘yes your bloods were clear of infection so we would have suggested anyway’, the next day I put my nebs on hold and told them I’d have them PRN and if I went the day with none (and wasn’t symptomatic) I’d go home... worked a treat and they all were happy, agreed with my plan and signed off on it 😂😅.
Yay for the summary (and paras that used it!) 🥳💁♀️🙌🎉. How freaked out did you get? 🤨😏😅 I hope they treated you to the neenaws!
Thanks... I’m bringing in my own cake, so there defo will be cake 🍰😂.
Yes I took the initiative this time with the asthma team person who I knew would be sensible and just said I would like to try off nebs because I have been needing them and that I didn't just want to go off PF. Not sure what is happening with hydro - FENO is in the middle but after hydro so maybe higher than usual, but they think this is not one of the ones where I need steroids as eos not high. Except last.time they said same ans eos were high. Happy to avoid unnecessary pred but feel like last time I could actually have done with some and ditto this time. Ugh to being a freak. The funny thing is this time my peak flow actually dropped to 240 after all my puffs of salb, which is low for me (my best is same as yours!) Then was 300 pre and post neb in resus so not ideal but I was pleased to be vaguely normal lol. Last time Inwas definitely worse but PF better.
Paras were good asking me what I needed and that they should tske my lead, and yes I got the sirens lol. Not as dramatic as last time when they decided Inwas turning blue and hurried up, but no temporary bump like you get even though I warned them about it. That poor receptionist at work though...she keeps asking if I'm Ok!! I was fine on Wed .morning too and even spoke to asthma nurse on phone about ongoing stuff (or rather the watchful waiting ugh).
Do you find sometimes non-asthma resp cons are the worst for not listening and chucking out? I find the non resp medics are often more wary and inclined to follow my lead and resp tends to think they must know best.
Hope the cake is good, what kind? I want choc now lol.
Yay - go you!!! It’s odd... I’ve only ever done feno once (at my DAP) - I’ve never done it before or since (even at RBH), so I find it strange that you seem to have to do it lots!
If you feel like you need pred it may be worth asking... by now you’re probs have enough experience to know what you need (like something’s I know I ‘just’ need hydro, other times I know I’ll need a mag bag 😅).
Yup you’re a weirdo trying to camouflage as a norm... just cause your PF dropped this time doesn’t make you any less of a freak 😝! How did you find presenting with a symptom they like? Did you get treatment any quicker?
I’ve never had sirens 😢 tho tbh I’ve only called for an ambulance twice (only cause buses weren’t running and I didn’t live with anyone with a car 😅) - I got begrudgingly transported in the response car cause my PF improved after the neb so they didn’t think I needed to go in 🙄. Already stressing about needing to call them out if I have problems at my new place 😕.
May be an apologetic gift for the receptionist? 😂
At my current hosp then non-resp cons are worse, at my old hosp the resp ones were (once I got through the issues with 1 particularly difficult AMU doc).
Red velvet cake for home tomorrow, chocolate tray bake for work 😁...
Go treat yourself!.. if you can’t get to the hosp shop/vending machine without trouble you defo shouldn’t be going home! (I do these walks daily when I’m in to measure my asthma control... if I need a neb after than they can’t send me home (plus my fellow oldie inmates like the fact I’ll pick them up newspapers etc if they want them 😇😂)
Oh this asthma team is totally obsessed with FENO lol - they use it a lot to determine steroid responsiveness (which I find varies). Honestly I don't even know if I need pred. I often confuse myself as well as others... I do worry that needing systemic steroids is still very much seen by most medics and clinical trials as a marker of severity which for me is not that accurate. I also think my asthma team still finds it hard not to see my non-eosinophilic attacks as less bad, especially after last time being my longest and first HDU and now this clearly not as bad but I do not think that is actually related to the eos. I.also don't see my last one as my worst ever - had worse but it was local with no real HDU (I got a kind of heavily monitored bay then moved out when better) and they love to chuck out asap there. Other worse one(s) they just didn't do It for whatever reason or I got better sooner even if worse initially.
I have managed sirens a few times - though I still refuse to call ambulances myself! 111, GP and now work do it. One time again PF was low so I think this maybe does influence them. I often find paramedics do not get me and their protocol is out of date so prefer not to, but work say they have to for safety which is fair enough. They have been ok the last couple of times but in the past I have had inaccurate lectures on how nebs don't help if no wheeze grrr.
Yes I try the walks too - I had the neb because I went to the toilet and realised the walk was harder than earlier! Shop is a bit of a way so agree it would be a test. Last time there was no way it was happening till the last day but I practised going to the day room ans up.ans down corridor on that day. Before that tbe bathroom was hard enough. Everyone else in bay kept going down for fags (not resp ward but still...).
Mmm both cakes sound good! Hipe you enjoy. Getting choc when I get out for sure.
So they're saying I can go ans neb doesn't matter, what a surprise. Not checked to.see if I maintain PF after neb (dropped a little, nothing drastic but still not actually reached 75%. Indon't place that much stock in PF but dropping isn't ideal and they are the ones with the threshold). I said to nurse err they don't know if I can walk around yet and I was really clear I needed to reach that point. She offered a porter to help me ans I said thanks but I think I need to be to do it myself if leaving. She did say there's no hurry and I can see how I am moving, but I'm still a it pissed off because I don't really feel like they're listening, and also that if I did ask to stay they'd start on again about it being my feelings of safety, rather than actual sense ans guidelines. I really feel like they have made up their minds ans nothing will actually change. Nurse says oh they know how breathless you are...hmmm ok not sure they really bothered to gather info.
Sorry for rant just a bit pissed off feeling like they yet again are not really listening.
Argh! I feel your anger/pain 😤.
You could always do what I do in such situations... either A) demonstration you’re not good to go home by walking quickly to/from somewhere or B) go home and come back tomorrow when you’ve dropped again! Neither of which is a great idea, however if they’re sending you home despite needing a neb to get to the loo, something needs to be done, without them saying you’re neurotic/attention seeking. I hate it when docs don’t listen and make us feel like frauds!
What hospital are you at? (So I know to avoid if needs be 😉😅)
I will PM you lol - not admitting that on open forum as I have been critical at times and don't want them to see. Tbf they overall are better than others I have been to but seriously I do get fed up with the lottery. They were amazing last time and this time mostly ok ut still grrr.
I do actually feel just about ok to go. One of the SHOs came to talk to me about whether I felt ready ans she said from our POV you are ok...Yeah ok but I did say nicely that I made it clear I'm going nowhere till I can walk reasonably, even if I have to recover more at home, and when you said I could go you didn't know whether I could do that. I think I will not be back tomorrow but also feel like they'd still be sending me home whatever I said. Or making it about emotions and not practicality.
I managed to get down to 3mg a day but just had chest infection and been on 30 mg and pains still there. I’ve just rang the asthma nurses to see if I can see somebody while I’m there on Tuesday for a sleep study. I have to have bloods done again fir resilamab as mine are out of date . See what happens lol
Happy birthday... Hope you are well enough to celebrate it.. 🍾🎉🎂
Very anxious
Montelukast feeling very down
Share something special!
Very confused...
