Hiya, hope everyone is coping ok with the weather and the pollen etc.
I posted an update from my consultant appointment last week, where I was given a new and surprising diagnosis.
My consultant has decided that due to the nature and severity of the asthma attacks I have I have severe and brittle asthma, the brittle doesn't fall nicely into either type 1 or 2 as I have aspects of both. He gave me very strict instructions of when I need to call for help and very bluntly explained the possible consequences of not doing so. But he was very good, reassuring and very approachable. I have my next appointment with him over the summer and he's booking an urgent appointment with his asthma nurse at the hospital (when she's back from holiday) to come up with a written action plan and info for paramedics and hospital when I need to be treated urgently. I am not CVA, but also not a great wheezer either.
I also don't always have the same type of attacks, sometimes I am fine and then within an hour (sometimes more, sometimes less) and then just crash, other times I feel it coming for a few days with the meds being less and less effective until it gets to the point where I need to go get help. Very frustrating.
The ""brittle"" diagnosis came as a total shock, and therefore I didn't go armed with a ton of questions I wanted to ask, so they are all going round in my head at the min, so thought I'd try and get other people's experiences and opinions on brittle asthma. I am 25 and it seemed like a bombshell diagnosis, am I overreacting?
Questions I wish I'd asked:
*Can brittle asthma ever be controlled?! On a crazy amount of medication, including 35mg pred (he eventually wants me to get to a maintenance dose of 20mg) and loads of other stuff and STILL getting symptoms daily - some of them severe.
*I am a teacher, what is the implications of the brittle diagnosis on my current and future job prospects?
*Can it ever get better, become unbrittle?
*What is the long term prognosis for this type of asthma?
*How can I avoid triggers? I am allergic to everything!!
*Can anything else be added on/done to control it?
And about a million other questions!! LOL
Just feeling very overwhelmed at the moment and feel out of my depth with this new diagnosis.
I recently got diagnosed brittle too (type 2, though I dont absolutely fit it either) so understand your fears. My post from the other week got several good responses, if you think it might help to read them? I dont get on here much but will pop back and see what others reply to you too!
I understand the concerns over work also - Im a personal trainer of all things!!! This time last year I was running marathons and teaching up to 14hrs a day, now I literally can't climb a flight of stairs!
Those are great questions. I only wish I knew the answers. I've been asking the same questions even though I'm still without scary labels like brittle asthma. Please keep us updated as you find answers.
I know am not very happy to discover how volatile my asthma has become at 20mg pred. Nor to hear my doctor tell me today that he expects that I will eventually have some major flare that will result in another hospitalization or at least mega amounts of steroids, that it is more a question of when and not if.
Nor am i very happy about the fact that all that volatility is happening on the highest doses of the standard (non-pred) medications. Higher doses of pred do dampen all the ups and downs but they are not a long term solution.
I know medication wise there are some second line options like xolair or methylextrate (sp?) and subcutaneous terabutaline. But even when these work there are often trade offs as regards control versus side effects.
I too am asking questions about what this means for the future if there are no medicines that can get things under control and I am still having symptoms every day.
Beth, you sound as though you are having the same sort of issues as I am. Its odd, because I am really overwhelmed by the brittle diagnosis, but then at the same time its good to have clarification of why this keeps happening. And like I say my cons is great - lucky to have found a good one first time round!
Like you I am concerned that I am only going to become more volatile as the pred reduces to 20mg, cons ideally wants that to be my maintenance dose, but currently on 35, where I still flare - if I was sensible last night I would have called for help at a few points. Its not a good feeling is it?
A lot of the other add on therapies that are available, tbh scare me with the potential side effects - its a trade off with quality of life whatever way you look at it.
Like you, I am already on pretty much the highest meds level too, and while without it I am sooo much worse, doesn't it just seem as though there should be at least *some* control? Like yesterday my PF varied from being 90% (albeit very briefly and after LOTS of salbutamol) and 30% (again very briefly) - a variation of 60%.
Are you any better tonight?
Sparkle, I hope you manage to get some control, its very frustrating isn't it? Its a shame there is no PM on here - would have been good to share some experiences!
Take care. Laura x
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Beth, you sound as though you are having the same sort of issues as I am. Its odd, because I am really overwhelmed by the brittle diagnosis, but then at the same time its good to have clarification of why this keeps happening. And like I say my cons is great - lucky to have found a good one first time round!
I have found having someone who gets what I am going through makes a huge difference. I'm glad you ended up with a cons who understands your type of asthma and is behind you. My GP has been a huge help.
I wonder if having a label helps because it gives one permission to start focusing on what this means for one's life rather than getting caught up wondering whether there is something wrong in the first place?
I think the fourth failed taper served that role for me. We got lower than we ever got before, but what i saw when I got down to 20mg was not good at all. It drove home that this is a problem I will be managing for the forsee-able future with no really good choices in sight.
I'd been saying for a long time that I wasn't at risk because I'm not brittle in any way. But when in hospital I was really up and down. I was hoping it was a one-time thing, but that hasn't been the case. 8 of the 12 days since I first got down to 20mg have had mean amplitudes (max-min/avg) of 40% or more, i.e. going from 45-95% of PB, and there were two nights when I was briefly below 40%. It has made me think differently about risk. But toughing things out through the taper has also taught me that I can survive, and shifted my thinking more to working around the problems rather than hoping for that magic solution that will allow me to breathe well 24-7.
Like you I am concerned that I am only going to become more volatile as the pred reduces to 20mg, cons ideally wants that to be my maintenance dose, but currently on 35, where I still flare - if I was sensible last night I would have called for help at a few points. Its not a good feeling is it?
No it isn't. I struggle a lot with when/if to get help, some of which I've written about on that ""when to stop the taper"" thread I started. Some of it comes from being non-standard (personal best for FEV1, PF are 125% predicted; don't wheeze on cue) and fearing that others who don't know my case well won't give help unless I'm in severe respiratory distress. So far I haven't ever had a life threatening episode and I have gotten help even if grudgingly.
All the same, I sometimes feel angry that I feel like I have to fight for help or wait until I'm really bad because my asthma is so non-standard.
But the other half of it is personality. I like to handle things on my own. I know that I can manage pretty well even when peak flow is very low. I don't panic easily. I'm good at staying focused on keeping things calm and steady. I just struggle and sometimes it simply hurts to breathe. It becomes a ""how much do I want to suffer"" rather than ""oh, maybe my life is at risk"" issue. Being severely uncomfortable isn't the same thing as having one's life at risk.
I have a nebulizer at home, so unless I need and think I will get something more for treatment (i.e. inhaled/intravenous steroids), there is no point in going to get help. But there are times when I know that I could feel a lot better a lot faster if I were to go get help and ask for more treatment even if the situation is not life threatening
Mostly I worry that one day I will think I can manage when I really can't.
A lot of the other add on therapies that are available, tbh scare me with the potential side effects - its a trade off with quality of life whatever way you look at it.
Yup. Once asthma gets to the point where lack of a control is a given and/or all solutions have trade-offs, I think the psychological side of wellness starts occupying equal if not more important ground than the medical. Only our hopes and values can tell us what trade offs are worth it and what are not. Only our mindset can help us deal with the daily ""now I can breathe; now I can't"" when asthma is uncontrolled. Mindset also is the only thing that can keep us focused on personal goals when flares and fatigue get in the way
.
Are you any better tonight?
Thanks for asking. Last night I was able to sleep through the night - I used my inhaler before going to bed, so maybe that helped. Today hasn't been so good,but I'm managing. GP put pred back up to 30mg which I started today. So we'll see.
This is going to sound silly, but it is such a relief to find people to be going through a similar thing as me! I to have severe brittle asthma which literally causes havock with my life! I swear my stairs some days are like I am climbing a mountain!!!!! I am 32, and have yet to complete my QTS for teaching and am worried about the implications this may have long term! They put me on steroids to then ween me off because the pred is causing issues for my osteoporosis and the nasty weight gain!
It's a nightmare I'm on protective meds to stop bone issues, looks like I'll always be on at least 20m pred unless they find some wonder drug! I agree though its good to find similar people
Good luck with your QTS, I am also a teacher, though now in my 3rd year!
Stairs feeling like a mountain - yep!! Sometimes I can't even get off the sofa without having to reach for my reliever, but other times can do loads! Oh the joys
Hey Beth,
Thanks so much for your post! Sorry you've had to go up on the pred
I have been having a lot of attacks recently, though I am currently on 35mg pred, don't know how much further I will be able to get down. I've been struggling for a few days, but had an attack today while at work which took my PF below 30%. Fortunately was able to get it back up before having to call for an ambulance. My PF today has varied by 70%. My Personal best is around 120% of what is expected.
What you say about knowing where you function makes sense, I don't think that I am in this position though ... though I might have to learn a bit more about myself before deciding!! When I was below 30% today, I was invigilating a test, I couldn't stand, though work understood this, a colleague said to me ""Laura are you ok? You're very pale"" at this point I recognised my fingers were blue and that I was really exhausted. This happened before I realised I was SOB, though this could be because I wave had no sleep this last few days because of asthma symptoms. I was able to sort it out, but its scary looking back, on my own I would have possibly quite happily not noticed how bad I was, This scares me really - what could have happened if a colleague wasn't aware I was struggling? I know I shouldn't let myself get to that point - but what about when the ""crash"" comes suddenly?
Again I plan on going into work tomorrow, I will contact my GP tomorrow (saw one today, but wasn't too happy) and see if there is anything that can be suggested.
Hopefully at 30mg pred you will be more controlled until they can think about different treatments, perhaps these wont be that miracle cure, but hopefully will help symptoms. Its also something that can be tried and the side effects weighed up?
Sorry if incoherent, very difficult day today with asthma and not feeling good now.
Oh, Laura, it must be such a difficult and frightening time you are going through.
At least you seem to have an excellent medical team that are supporting you at this time.
Take care.
I completely understand you wanting to go into work as I'm just as bad, but do you really think you should be going in tomorrow? If you haven't had any sleep you won't be doing any good anyway, so might as well stay at home and try to get some rest in the good patches.
Asthmagirl, its insane, before this year I was asthmatic, but with a bit of a possible query against it. This year, not has it only been officially diagnosed, but that is because its been totally and utterly uncontrolled after a series of horrendous chest infections. I am trying to get in touch with me asthma team at the hospital, because have a lot of questions and am rapidly losing control, though would be worse without the meds.
Spookymilo, having the ""do I, don't I go into work"" debate this minute, but that's tying in with the ""is help necessary?"" debate - because I am still lingering below 60% and as you might have seen on Kayla's post I've dropped from 100% at gp at 6pm
I think I NEED to see my regular gp tomorrow, because I have no control at the min. But also think I need to maybe try to contact my cons?
Argh, my asthma is driving me insane at the min :'-(
I'd probably go with yes to both, but could understand you waiting to see gp but not going into work. Trying to catch up on some sleep would probably settle things down a bit because I know every time I go off it's because I've got overtired.
What concerns me is that I know at some point I will probably ""crash and burn"", whether sooner or later. Crash and burn means needing hospital for me.
I really thought I was gonna be sent in tonight by GP (which would have been easier to digest), but then PF behaved ... it is driving me insane
I am worried tonight, because I know I am tired, and my PF is lower than a few hours ago and that I know I am exhausted and not putting much as much effort as I should into breathing. BUT I was *fine* at the GPs - need to contact cons I think.
I'm sorry to hear you're struggling still, though good you've got a supportive cons.
I know it's hard but try not to 'await the crash and burn'! If you're deteriorating now its only going to get worse overnight and a paramedic/a&e would rather see you now, give you a neb and see you on your way than for you to present at crisis point!!
I would also try to see your cons/team again as you are trying to do as they need to see you poorly also.
'Brittle' asthma is sometimes a scary diagnosis to get your head around but with support and plans from your team it does get better!! I have brittle asthma and am unfortunately admitted fairly regularly (captured at the moment!), however with a good cons and asthma team I have still managed to complete medical school and nearly finished my first year as a dr! Once you get to know your asthma and how far you can 'push it' and what treatment works for you it gets a bit easier!
Oh and re the peak flows mine can go from 100% best (which is above predicted) to 0 in a matter of minutes/hours. Tbf I've almost given up on them (I don't advise this at all!!) as they are so volatile and go mainly on how I'm feeling! If I'm struggling I sometimes check it to make sure I'm not in the 'danger zone' but apart from that its just in hospital and lung function at clinic. Again I don't advise my methods! Just my way of coping and demonstrating you're not alone!!
I hope you feel better soon and please get help if you need it!!
B x
I have given in and rung in sick for tomorrow :'-( though I am going to try and see my normal GP tomorrow and try to get in contact with cons team too. I *think* I will be lucky to get through tonight without calling for help. I don't want the *crash and burn* either. I don't want to call 999 at the min - feel redic at 60% best PF.
I felt shocking and was in complete meltdown at my GP apt tonight, thought I would be about 60% was shoched when it came out at what it did ... that and the no wheeze, felt c**p after PF being done. Pf is driving me mad and I am getting to the point of thinking whats the point?
My main concern is the exhaustion at the min, I have never been in and never want to be in resp arrest
The brittle diagnosis is completely new and really shocking. It helps to know why things go downhill so quickly, but also even harder not to think *what if*
If I get *much* worse I will be calling 999, because I am now exhausted and feel very tight. Why is this happening on so much pred?
Hope you're released soon, and well done on qualifying as a doctor xxx
Didn't get to see my normal GP, but saw one who spent a lot of time going through everything with me and I left with a lot of questions answered and feeling reassured of what I need to do and when. She seems happy with my judgement of when enough is enough and what I am doing before getting to that point! Spent quite a nit of time discussing what brittle asthma is and how it works, nature of attacks etc.
Though she admitted that from an asthma point of view there is nothing further that she can do as she is out of her depth, she has come down hard on the hayfever which is exacerbating the asthma, so hoping to notice a difference
Admittedly other than seeing GP I have hibernated today and tried to catch up on sleep, I have been much less up and down, probably my most stable day in the past week, so hoping it stays that way for a while. GP has said to go back on Fri if have any more of the big ups and downs.
B- when not being ridiculous, it makes sense to get help before crisis, I seem to become more stubborn as things spiral - but discussed this and now know where the self management cut off point is, so have no excuse lol.
Just thought I'd give a *good* update!
Are you feeling any better B? Any chance of getting home any time soon?
Laura x
Sorry to hear you are captured B.
Laura, glad to hear things are turning round and you had a good GP appointment.
The fear that I will someday tire is also one of my fears. I try to remind myself that (a) I'm stubborn and won't give up easily - that is a good thing and likley to keep little tubes very far away from delicate throats (b) even though I fear I won't know my limits, I probably do : When breathing is really difficult I sometimes have to give myself little pep talks as I go. I think my clue that it really was time for help would be when I sense that the pep talks are no longer working to keep me motivated.. It has never happened yet, thankfully. and hopefully never will.
You seem like a determined and focused person so I suspect you will also know when you are reaching your limits to cope. Though if you aren't sure: better to go to A&E and be ignored but close to help than to be at home and be far away.
Hey Beth,
Thank you!! I seem to be much more stable today, so much less physically and emotionally draining. I have done very little today, which has probably helped! I plan on going back to work tomorrow, its not fair on my students for their teacher to be off so often!
That tiring issue - its nothing that I have ever encountered before yesterday and its quite frightening, what made it harder is that it took someone else to point out that I was really struggling before I noticed - does that make sense? Though I am pretty confident this is because I was struggling before even going into work, so really I already *knew* things weren't good and that I should probably be doing something about it!
The ""when to call for help"" I think deep down (even with stubbornness as a factor) we know really when that time has come, I have come close, but not been there (even though in hindsight medical experts have disagreed - listening to the story, rather than witnessing first hand). I also think that we need to trust ourselves and our judgement.
I totally get what you're saying about the pep talk!! When you were last in hospital, what made you make the decision that enough was enough?
I am pretty focussed and determined (as are you from the sounds of it!), I have had to be to get where I am, its makes such a diagnosis more difficult to digest, but then I wont allow it to hold me back in life - I have decided not to let it rule my life, but instead - its something that while perhaps unmanageable at the moment, its my responsibility to manage it psychologically and physically (within my power!) and get on with life!
How are you getting on with the 30mg pred? If its any consolation I am on 35 - *hope* to go to 30 on mon !!! Did you contact you Dr today? If so, I really hope you got some support and answers!! Though fortunately you sound as though you have a supportive team around you, as I am also lucky to have
Take care! Laura x
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That tiring issue - its nothing that I have ever encountered before yesterday and its quite frightening
The first time I ever felt so bad that I had to ask myself how much longer I thought I could handle it was scary. Thankfully, neb number three turned things around and I didn't have to go get help. A few days after that I decided it was time to ask my GP ""what if I decide I'm in over my head"". I don't think he much liked that I felt I needed to ask the question because he got very serious sounding with his worry voice when he answered, though the answer itself was fairly matter of fact: go to urgent care if you can get yourself there, call an ambulance if you can't. His worry voice had me upset a little bit for a few days because it drove home that if I ever got to that point that there was something to worry about. I like to focus on what can be done and not remind myself too much of worries.
What made it harder is that it took someone else to point out that I was really struggling before I noticed - does that make sense? Though I am pretty confident this is because I was struggling before even going into work, so really I already *knew* things weren't good and that I should probably be doing something about it!
I wonder if your friend would have made such an impact if you didn't actually know deep down that you really needed to give yourself a break and get some rest? I find that the comments from friends are important feedback because they give me permission to be compassionate to myself. I'm reasonably good at giving myself emotional compassion, but pretty bad at giving myself physical compassion. Even if I do rest, I tend to blame myself for being lazy (or not fair to others) when I'm feeling ill and can't get things done. This is something I am working on.
I also think that we need to trust ourselves and our judgement.
Yup.
I totally get what you're saying about the pep talk!! When you were last in hospital, what made you make the decision that enough was enough?
It took my doctor three days to convince me to go to the hospital. In the end I told him to make the decision because I couldn't. The main reason he wanted me to go was that I was on 60mg of pred and still flaring and dropping PF below 60% PB for very silly reasons. He didn't think I was safe at home. It wasn't even an issue of whether or not they treated me, though he suspected I needed to be hospitalized. He just wanted me close to help.
I'd had several days where PF would go back to pre-ventolin levels within less than four hours. My doctor had increased the prednisone but I was still getting worse. Then I had trouble breathing and started coughing when I was doing nothing more than ""just walking"" and when I checked peak flow it had dropped below 60%. That time PF returned to baseline with ventolin. GP up'd the prednisone to 60mg, but the same thing happened again the next day just 10 minutes after doing a neb. The second time, it did not.
My doctor just happened to be returning a call I had made earlier in the day when this was happening. It was very strange. I got completely tongue tied when he asked me how I was. I never get tongue tied, but I hate admitting I'm doing poorly.
In this case, the issue wasn't getting tired, but rather that we were both seeing something we had never seen before in my asthma. I don't know if this happened again whether he would take the same view. He doesn't seem quite so worried now about my peak flow going below 60% and staying there for long stretches of time, but then we haven't gone back up to 60mg yet either. Nor am I all that worried. Thanks to some stupidity at the hospital, I toughed out two nasty stretches of about 45minutes where breathing was 30-50% of PB without any help from ventolin.
His not being so worried about my spending time below 60% or even 50% has me a bit thrown right now. Standard asthma plans all say that's the time one should go for help. But I guess this is another one of those things where the rules change and get customized when asthma is chronically uncontrolled. If you never go that low, then its a big deal. If one bounces up and down daily, then perhaps the significance of those lows changes?
I have decided not to let it rule my life, but instead - its something that while perhaps unmanageable at the moment, its my responsibility to manage it psychologically and physically (within my power!) and get on with life!
Very good to hear! I'm finding that maintaining that attitude is a learning process. Sometimes I'm better at it than others.
How are you getting on with the 30mg pred?
Not sure. My first 24hrs after starting 30mg was actually worse not better than the previous day. I don't have a good track record below 35mg., but maybe this time will be different? In the last six months on any dose below 35mg, things just get worse and worse. Even on 35-40mg, if I've been doing a taper and things were getting worse and worse, it takes about a week before things stabilize and start improving.
If its any consolation I am on 35 - *hope* to go to 30 on mon !!!
Hope your lungs are well behaved and you can go down.
Did you contact you Dr today?
I did call, but he had left for the day. I'm debating whether to wait for the call back or make an appointment tomorrow morning. I think it will depend on how the night and first waking hours go tomorrow.
At the moment I feel frustrated because this is seriously interfering with things I planned on doing. With all the ups and downs, even using ventolin liberally isn't allowing me to do the things I need or planned on doing. I did have a few good stretches where PF got up to 70-90% of PB, but I was so tired from the down periods, that I needed to use the good breathing time to rest and re-energize.
I feel like right now the decisions are being made on the basis of ""ignore the quality of life impact of symptoms and up the pred only enough to reassure the GP that I won't end up in hospital again for now"". The longer I'm on high doses of pred, the more my various doctors worry that I'm going to have long term side effects (diabetes, osteoporesis, glaucoma, messed up CBCs) even if the usual annoying ones (mood swings, insomnia, weight gain, etc ) are absent , I'm clear for diabetes (did fasting glucose on monday), but I won't have an eye exam until the end of the month and I haven't yet done a dexascan so we don't know where I stand in that regard.
But even if there is a risk of side effects, what is the point of having good bones if I'm too sick most of the time to make use of them? I want more discussion of the cost-benefits of letting symptoms ride just because there is no threat to life.
fortunately you sound as though you have a supportive team around you, as I am also lucky to have
I'm working on it, but it is a process. it has taken time for my GP to develop trust. I think that process is just beginning with the pulmonologist and it is a lot slower because he doesn't see me as often.
Take care! Laura x
You too - take care! and be well!
Hi Beth,
Though unpleasant as the asthma issues are it does give some comfort that there are others out there who understand and can empathise wih what is going on at the moment, so thank you so much for your support and sharing your experiences!
I had the discussion today with my gp about being tired and the implications and someone needing to point it out to me - my gp was equally as bleak and this was a huge concern. Thankfully that neb no.3 worked for you that time the gp has mentioned a neb at home as I am so far from my nearest hospital, but then we both agreed that this might not be the best idea (although something we can reconsider) 1. because when things are really bad I need it to be oxygen driven and 2. because I think I would get into a mindset of ""let's just try one more"". Both of these reasons seem sensible to me. If the cocktail of drugs I'm on put me on don't work at a certain point, yeah it's ok to keep doing what I'm doing, but at the same time help needs to be called for.
What you said about my colleague makes sense, but I was just not aware of how bad things were. I am prepared to think that if she hadn't pointed this out I would have probably collapsed ... acknowledging this is quite scary. But again I knew before I was really struggling. Hmm, I'm starting to analyse my own bad behaviour!
Last month when you were so ill, it sounds as though the time was right for both you and your gp to decide that going in was necessary, especially given the pred! I think that toe 50-60% marker of pf is for the majority of asthmatics, for he more difficult to control I think the boundaries probably need to be tested somewhat. If I was admitted everytime I couldn't maintain above this level I'd never be at home, let alone working and trying to function normally. Though the goods are really good and I feel it at 60%!
The tapering pred issue - I think that it will always be a ""short term"" fix. They will probably be looking at alternatives for you. I know from talking to my gp today that whether symptomatic or not I will be continuing to taper to 20mg - I think this is to see how I respond and what happens. We are expecting potentially interesting results because of the number of almost emergencies even on 35. BUT been at least this level for over a month and this can't continue. So just need to see what's going to happen - scary!! Is that similar to your team? Hopefully all the other meds will start working to give some control rather than scary alternatives!
In your shoes I'd probably make an appointment, even if just for reassurance. Your mind must be in overdrive at the min - my gp today didn't do any diagnostic testing (think she knew I had reached my limit!) just spoke it all through, admitted how out of her depth she was, gained a mutual understanding and reassured. It was what I needed!!
Today I have been more settled, planning on going to work tomorrow to see how things go. More unstable this evening, but then that's nocturnal asthma running amock with brittle asthma, hmm.
Thanks for your comment Laura x
Hiya, just thought I'd report 3 good days in a row weds was more dicey, but yesterday and today I've enjoyed 2 days of *mostly* being good - pf has only dodged between 60% and a new pb of 570!!
I think it's important for me to acknowledge when I have these good days because it makes me realise that on days like this I can do my normal stuff and get on with life albeit on a lot of medication and having to be proactive in treating what I am now deciding are *mild* attacks, ie when pf goes to 60%.
Also on Tuesday/ early hours weds the ""help"" dilemma, I'm glad it didn't come to that and that unlike what I was anticipating (a big ""crash and burn""), I was able to sort it at home which is good to know
A few nights this week (tying in with really exhausting and quite frightening attacks), the diagnosis of severe brittle asthma was hard to digest - though I should probably have been more prepared for it. But it sent me into meltdown a good couple of times, I am very lucky to have a medical team around me though that will fit me in when necessary, and always the same day. They also contact by choice to see how things are going.
Just thought it might be helpful to post that while its not a nice diagnosis and it will ways be unpredictable, what is good to know is that there can be good days and that I plan to live my life to the full on these days and on the bad days I need to remember how awesome the people who are around me are
Thank you all so much for your support!!
Laura x
So glad to hear that you have had so many good days in a row. And I totally agree on the importance of acknowledging (and remembering) them. On the bad days, I find it helps me to remember that I *have* had good days, and I *will* have good days.
Hiya Laura. Yesterday I was seen by one of the same respiratory specialists after being admitted to the respiratory ward. He gave me the same diagnosis, and they're giving me a home nebulizer when I eventually leave hospital (hopefully soon). The word itself 'brittle' scares me, and I'm only 16!
I'm glad you've been feeling better, and this might be a ridiculously obvious idea but why not call the Asthma UK helpline to speak to one of the Asthma nurses, and ask her the questions that have been running through your mind.. it may help
Tomorrow i'm going to speak to one of the doctors and ask him everything, as at the moment i'm in a complete mixture of emotions and am pretty certain the doctor who diagnosed me was wrong, I mean my asthma can't be that bad, surely? I don't know, it may be due to the countless hospital admissions i've had in the past year.. hmmph I don't know :/
But speak to the asthma UK team and see what they say
good luck and let us know how things are
Annie x
Thanks Beth how are you doing at the min?
I'm struggling again today - combo: out all weekend in crazy high pollen, tapered pred - lungs don't like 30mg and below. We will have to see how things go hopefully avoid an admission this week. Fingers crossed things pick up again. I am very greatful for a few settled days though
Annie, are you in hosp again? How long have you been in and when are you hoping to escape? Have you been referred to a consultant? Mine is fab, but then my gp I'd great too. From one of your earlier posts, you said you were on seretide and salbutamol, I'm not a medic, but from the sounds of it there is a fair but more they can ""add on"" for you at this point, so hopefully you will be able to achieve some control. At 16 a diagnosis of severe brittle must e quiche scary, I know it's taken a fair bit of time to sink in for me, but at least it gives the professionals something to work with - I am only 25.
Re at home neb, at the min my cons, gp and I don't think it's a good idea to have one, because: I live 20 miles away from my nearest hosp, I always leave getting help until really late and I can deteriorate crazy fast. Having one I think at crisis point (cons agreed) would make a dangerous situation more so.
Auk nurses are awesome
I hope you're home soon, and start to feel better!
Laura x
• in reply to
Laurs, I hope you feel better today and can get away without an upping of prednisone when you see your doctor.
Thanks Beth how are you doing at the min?
Yesterday was one of the best days I've had in a while. In the AM was able to sing bits of a colaratura soprano aria without a problem aside from being out of practice - haven't been able to do that in a long time. Afternoon went walking with friend, she commented that I was doing better than her. Was late for an appointment (with pulmo no less) and had to run for bus and then run from bus stop to doctor's office. No problems at all. My legs needed a rest, but not my lungs. And when I slowed down, breathing slowed down with me. Then I walked another 1-2 km to meet my husband for dinner, again without incident. Pretty amazing day.
I was glad this happened on the day of my appointment with my pulmonologist. My sense is that when asthma isn't all that controllable, part of a doctor's job is expectation management rather than fixing things. I've also noticed that when a doctor only sees people when they are ill, they tend to assume that is the best the person can achieve. The last time we talked he was trying to convince me that 75% of personal best was ""good"". But to me, 75% is not good. I'd really like to spend most of my waking hours in the green zone as I did yesterday (nights/early AM are still a problem). I think it was important for him to see me doing well, so that he understands what I'm losing and so that he knows what can be achieved.
Unfortunately, my fab day wasn't enough to convince him to let me go down to 25mg. He wants me to stay on 30mg another week and then try a slightly slower taper of 10 days/5mg. And I was hoping to convince him to taper 5mg/5 days....
Annie: hope you feel better soon.
i've written this message 3 times now and keep flipping deleting it accidentally!!
I'm currently on salbutamol, seretide 500, and have just recently been introduced to symbicort 400/12 and an atrovent inhaler. I was admitted to hospital on saturday night after one of my worst ever asthma attacks; my flatmate found me in my room, passed out and blue. I was initially taken to a recuss unit, then transferred to the respiratory ward.
I spoke to one of the docs on the ward today, he said they're going to try me out with atrovent nebules when I eventually go home. It just seems like everything has escalated pretty quickly; this time last year I was only on salbutamol and clenil modulite.
And ooh, yeah it sounds like you're probably better off without a nebuliser. To be honest, I don't think I should have one either as i know it'd make me never ever ever consider dialling 999 any more. And damn, that was the first time I'd seen you post that you were doing okay.. stupid pollen always ruins things! Hope you feel better soon xo
Gosh not good have you been in itu? It's not a good experience. Hopefully they will get you sorted soon!!
It's unusual to be on both seretide and symbicort consecutively, but then the specialists obviously know a lot more than me I was taken off the seretide when put on symbicort.
I got the ""brittle"" diagnosis after my gp referred me to a respiratory consultant because of the number of serious attacks. The cons is very good and reassures me that there are things he's still willing to try. But also hammers home the potential severity.
I am fuming with my lungs tonight taken 8 puffs (inc my maintenence) of 400/12 symbicort, 8 puffs of atrovent and about 40 of salb, plus a citerizine on top of the fexofenadine and its not doing much - 10 with spacer = a neb?! Doesn't feel like it. Hoping to abuse the salb until I can get to see my gp tomorrow and not need the men in green I don't like the fact the I can't cope with less than 35mg pred. On sooo much other medication too
This is exactly why I can't be trusted with a neb - always push the boundaries.
That attack sounds scary asthma can seem to go downhill quickly tho, mine has certainly got worse over the last couple of years, but that's cos of recurrent chest infections etc.
Hope your out soon and they bring it under control!!
Laura x
Hi Laura,
Sorry to here you're struggling again today. I hope you managed to enjoy yesterday without too much trouble. The pollen count has been crazy here today (there was an interesting piece on Breakfast this morning about hayfever and the weather as I was getting ready this morning-I like the look of low allergen gardens!) so I'm also back to suffering (with a pred taper too). How many ore months until the autumn? (when I have about a month before the cold air and virus triggers start!)
Annie - I hope you manage to get a bit more stable too. My asthma was at its worse when I was in my late teens (although recently it has started to get that way again in my late twenties) and it was a very difficult time. So much going on without having to deal with the asthma too. Luckily the support of a good cons/GP/asthma nurse got me through it. My teachers and lectures were also fantastic and really supportive with work of when I was struggling.
Hiya, yesterday was great thanks though even the spacer came out in front of people haha!!
The pollen count this year is crazy - just don't seem to be able to cope with it at all. Where abouts in the country are you? I'm in the peaks, so surrounded by countryside and pollen lol. Sounds like what you were listening to was interesting!! I am looking forwards too to the latter part of the year, but then start with chest infections and cos of he wind and cold weather from about September ... hmm
Getting concerned this eve - 10 salb Woking for about 30 mins then pf back below 50%. The taper doesn't like me either!!
What are you reducing by/how fast? Hope it works for you!! You coping ok with work?
Laura x
I was in ITU was about a year ago, I had pneumonia and my lung collapsed. Worst time of my life And really? I'll mention it to a doctor tomorrow then, find out if I need to be on both. I know it can be tough and draining, being on so many medications at once but as long as they keep you stable, that's all that matters. I'm taking daily injections and weekly blood transfusions for a rare form of anaemia too, I pass out a lot :/
I'm incredibly bored tonight, want to be up and moving but am stuck in a bed with tubes attached to me, yay _._
p.s. by the sounds of how you're going tonight, I think it may be a wise idea to go to the hospital Laura, trust me, remember when you kept telling me and I didn't listen, then passed out? 56 puffs of inhalers is WAY too much to just stay at home. Please go to OOH, in case it gets a lot worse than it already is, in a short space of time.
really hope you feel better soon,
Annie
I'm sure the space enjoyed that! I went for first drinks with someone my friend is trying to set me up with yesterday and my inhaler had to come out then (I did take it out of the bar but still had to explain it).
I'm in Yorkshire so exactly the same problem and I work in a very rural school which is surrounded by oil seed rape! I usually get a few weeks September rest bite before all the new children share their new germs! I'm on a quick taper (5mg a day). They wouldn't usually taper as I am on a short course but as This is the second course and my history of maintance pred, they like to er on the side of caution. I hope I can get to Fri when I have an appointment with asthma nurse but my pf is down a bit and have needed my reliever a fair bit. Have managed at work though which has been good.
Hoping you start to pick up soon.
Take care
Heya,
Annie, if I go to ooh they'll just send me in, would rather avoid that tbh, last time i went they said i was too compleceted and on too many meds (could only increase pred)I think a visit may be inevitable tonight though - I will see how it goes and hope my gp has some words of wisdom tomorrow. Not going back up on the pred though!! 30 is more than enough! I am on: symbicort 400/12 - 2x2 + upto 4 more prn, atrovent - upto 8 puffs prn, salbutamol - as required, pred 30mg (tapering to maintenence of 20), 10mg montelukast, 180mg fexofenadine, 70mg alendrolic acid (once weekly), 20mg omeprazole, nasonex and citerizine (if required) - crazy as have NO control!!! Will see how it goes!!
Kayla - gosh that sounds a fast taper, if you're still symptomatic could you slow it down a bit? I've been on 35 at least for over a month - now going down by 5mg every 5 days til I get to 20. Cons and I want to reduce it and just see what happens - hoping an admission is not inevitable being surrounded like that must be a nightmare!! Rural areas have just way too much pollen!
Sure the spacer enjoyed its venture outside - everyone looked at me as if I was about to die, then went on the ride hehe.
Hmm rambling tonight - symb/salb/atro sent me massively tachy
Well Im 4 days into a severe exacerbation which began in literally 15minutes - fine to unable to blow PEF at all in that time, quite scary I must say. PEF currently sitting at 50-60% but has been as low as 30% over the weekend. Urgent Care dr upped my pred from 35mg (my current 'maintenance') to 60mg but still not very helpful. Called the hospital, resigned myself to being admitted, and they've given me outpatients for 10days time!!! Its one of those times I am soooo grateful for my home nebuliser.
I am so sorry that you are going through a rough patch Sparkle.
I hope things improve for you soon.
Hiya, soo happy that you had such a good day yesterday those good days really put things into perspective, don't they? And knowing they do happen, make the bad days easier to cope with! Or this is what I find lol.
Sparkle, so sorry you're going through such a rough patch! Its scary when this happens *hugs* hopefully the pred will help to sort it out and that then you can taper! Prednisolone isn't ideal, but it does a job. I hate the stuff and hate needing it, but then the side effects of not taking it are much worse.
I avoided going to a&e yesterday, perhaps stupidly - pf spent a long time at 30% and wasn't responding at all. Used over half of a new salbutamol inhaler! I went to work today, after getting no sleep. My line manager took one look at me this morning and told me I needed to go home, which I explained why I didn't want to. Lasted less thenan hour before he insisted. I've not dared contact my go today though because he would have told me off again for not getting help, he would up my pred again and said about how he was out of his depth - he is awesome, I just really don't want to keep bothering him. I did ring my cons' secretary to see if he had any ideas, but when she called back (i'd actually fallen asleep briefly when she rang) she answered a question I asked 2 weeks ago. Though she and my resp dept are fab. Really struggling again tonight and fed up of these attacks.
Sorry for complaining.
Laura x
• in reply to
Sorry for complaining.
Letting off steam is part of the process too. It's ok to vent.
If you are avoiding your GP because you know he'll up the pred, that should tell you that you need to talk to him.
Hope you feel better as the night progresses, but you should still call the GP in the morning as unpleasant as the thought is.
Don't want to up the pred, but don't want to be admitted either. Going to phone tomorrow though - hopefully he will suggest phoning cons himself. Don't want to up the pred because of the long term side effects. I can't help thinking that at 25 this should not be having such an impact on m life. If it continues to be so out of control I'm going to have to consider a change of career etc because its not fair on my class for their teacher to be off so much.
Hoping for a few good days again soon
Laura x
Hiya, update:
I spoke to my GP on the phone this afternoon, couldn't get to see her. She could hear the struggle I was having etc.
We have basically decided NOT to up the pred, which is what I wanted, but what we then discussed is scary - its something I knew, but just hard to hear. My GP and I discussed how 30mg is the point any even vague control is lost, but we are continuing to taper anyway - go down to 25 on Saturday. It is looking as though an admission is going to be inevitable whilst tapering - but that we need to get to that point I need to be more forthcoming with calling the emergency services, as my reluctance is what worries her the most. She spoke about how we are still in an ""experimental"" phase of treatment options, but according to the consultants correspondence, they are looking at other (scary) add ons.
I am happy they want to continue the taper, but scared of where its leading. PF struggling to reach 60% most of the time and taking so much medication.
Sorry for the whinge. Just seems to be ruling my life at the minute.
Laura x
Glad to hear about no pred increase.
For me it was a major turning point emotionally when we started making the decision to just let certain exacerbations go and not treat them. Over the last several months the standards for when to up the pred and when not to have gradually shifted for me. There are symptoms I tolerate on a daily basis that months ago would have triggered an increase in prednisone.
When that first started happening I was really upset about it: I didn't like the idea that we'd given up on actually getting me healthy. Now, i try to take it in stride (most of the time - I still have my moments). If we treated ""minor symptoms"" with pred I'd never get off the pred. On monday I was discussing the taper with my pulmonologist:
Pulmonologist: ""don't go up unless its serious"".
Me: ""how serious? as in I'm sick enough to be turning blue?"".
Pulmonologist: ""how about symptoms at rest"".
Me: ""huh? I have those very often. We'd never get me off of prednisone. How about when I'll ill enough that I'm giving myself pep talks to breathe""
Pulmonologist: ok, that's fine.
I know that we can get my breathing night and day in the green zone without symptoms if we blitz me with steroids, BUT we can't keep me in the green without using loads of maintenance steroids. So even though in theory, I could be breathing 100% (no permanent airway remodelling has been found) we don't so far know how to keep me there. We can't keep pummelling me with steroids for benefits that are short term. So, de facto, a certain level of symptoms has become the norm for me. It is upsetting and frustrating if I think about it too much. To cope I try not to think too much about what could be and instead am working on focusing on what i can do with what I have rather than trying to get back to what I know my body is capable of.
I hope things improve without upping the pred. If it is any consolation, after nearly two months mostly at 30mg with a few excursions down to 25mg and 20mg, I am able to get some moderate improvement in exacerbations at 30mg. Two months ago, I needed to be at 35mg to keep from going downhill. I was also losing control after a few weeks on 30mg.
So maybe after more time going back and forth between 30mg and 25mg or 20mg you too will be a bit more stable at 30mg? Here's hoping.
Urgh. Just to let you know, been *sent in*. Will update properly when actually have the energy to cope with my phones predictive text soo tired at the min, would end up out the window
Laura x
I rather think this is time to focus on breathing and trying to be as comfortable as possible, not texting. Hoping this episode lets up for you soon and you receive the best and kindest care possible.
Hiyas all, thought I'd update!!!
Spent last night in ITU in the end apparently lucky to avoid being tubed - given IV magnesium chloride and hydrocortisone and antibiotics (stinking chest infection on top of really stroppy lungs not good!) plus other IV stuff. Back to back nebs etc and continual O2 via nasal cannula. O2 very low and CO2 high - not too keen on ABGs.
Still on the O2 and nebs every 1-2 hours - cons says not getting out anytime soon as even on O2 sats wont to above 94% without constant nebs (not my own cons, in a different hospital) and being moved to the resp ward at some point later today.
Had a proper telling off about not getting help earlier. And they have again upped the pred on top of the IV HC, so starting the taper again after a week on 40mg.
Even with all this and no sleep, lungs seem to be protesting less now so hopefully will stabilise enough soon to escape
Laura x
I hope they manage to get you a it more stable soon Laura so you can escape well. I hate ABGs-even writing it on a post makes me feel all shivery!
Yay, finally JUST been moved from itu to resp - also in a side room it doesn't feel as scary now apparently *stable* enough to leave there still on constant O2 and frequent nebs.
Last night, was waiting at mau to be seen when I had the big ""crash and burn"" which we had all (medics and i etc) been anticipating at which point was whisked into recus followed by 24 hours in itu.
I never want an abg done again!! But not too keen on the cannula either!!
Think this is a lesson to myself that risking that degree exacerbation I have been having really is not good. Admittedly when admitted yesterday my pf had been bouncing around the 50% and below mark, but it went from me listing my meds (albeit very slowly! Lol) to pretty much crisis within less than 5 mins. Really scared the nurse who was working with me. Not gonna get to that point again!
Want to go home now lol - not going to be for a while though
Thank you
Laura x
Oh Laurs, poor you, its horrible isn't it? Hopefully once the antib's kick in your lungs will co-operate a bit more and you'll soon be home.
Hiya, just an update as didn't want to hog the costa thread!!
Resus last night was awful, wasn't treated as I usually am and how my resp team has requested, but ah well, might actually be a blessing as loads of other stuff has happened.
I wasn't seen by a doctor in ccu until about 4 hours after going there from resus, so was in pretty bad shape (2l O2 but no nebs - mega multidosing on salbutamol and atrovent) and by the time the dr got there my pf was around 30% and my chest moving pretty much nothing. The dr was really concerned and got the registrar who is resp to come see me. He wasn't happy with my lungs and put me back on b2b nebs and ordered iv mg, which I needed in resus lol!!! Before the mg had a chat X-ray and they weren't happy with my lungs so looking at a pretty long stay as they are being stupid atm
I've also spoken to a resp cons I've met a few times (before being given the mg) so he has now seen me acutely unwell and can compare it to the other times he's seen me, on the other side of an acute attack he said my lungs were awful lol. He's made a lot of changes to my meds ... he's putting me onto fostair - he smart version but also adding cyclesonide (sp?!), I'm not in the therapeutic range for uniphylline, so being put upto 600mg a day of that plus a week of 60mg pred?! Had to convince him not to give me 70!! Ugh, can you imagine?!! He's also *hopefully* going to give me a trial of home nebs
The home nebs is the thing which is going to make me behave and not push to get home - I need to prove to him that I can and will be sensible!!
There are also things in the background he has mentioned ... Xolair, subcutaneous terbutaline and methotrexate. Don't fancy the last 2 so hoping the above works. He keeps popping back to check up on me ... which I think is really nice - really impressed at how understanding he is being for a Resp cons
Kinda gone from meltdown earlier (where I actually cried at the dr) to feeling a little more positive about what the future may hold - lungs apparently sound (and deffo feel) better than they did ... still having tons of nebs thrown at me though - always good in hosp, being able to breathe is nice
Than you for all your kind words and support on the costa thread
It is good that the cons saw you when you are at your worst and that he is upping his game plan too to match your symptoms. I hope you really do start to feel better soon. More hugs on the way xx
So glad to hear that they are thinking of some additional options to help get you stable.
Hugs to you laura.
Fingers crossed that the new drugs will help you and your stroppy lungs and you gain a bit of control of your asthma and life.
Gosh Laura, what a to do you had to go through in Resus.
I do hope with the new drug treatment things will become more stable for you.
Hugs to you.
Hugs, hope you get some stability soon. x
Blimwy you don't do things by halves bless you! I'm on Fostair and ciclesonide 160. Works for me, though I have home nebs (5mg salbutamol up to tds) too x
Yikes Laurs, thinking of you.
Xolair could be great for you if they find you're in the treatment range. I agree that methotrexate is scary, though I do know a couple of people on it for arthritis and they have found it life changing. Sub-cu reliever does sound drastic - especially to a needle-phobe like you - but I think it would be better for your body all round than being shoved full of huge doses of pred.
Also - it just dawned on me that while it's all kicked off into another gear for you over the last month or two it has been absolutely terrible weather for lungs. So hopefully once the pollen, humidity, dust and heat calm down you might find that while your asthma is still brittle and severe it's a little bit *less* so. I know we can't predict that, but I can't imagine there have been worse breathing conditions in the UK in a long time.
Best of luck - hopefully you won't be trapped for *too* long. Don't forget to ask about Spiriva as well - if you're an atrovent fan - they can always say no!
Wishing you at least a little sleep...
Cx
Hi guys,
Thank you so much for your well wishes and support! Didn't sleep too badly last night actually, about as well as you can in hospital on Resp HDU anyways lol - great as everyone on here has resp infections, I'm the only asthmatic yay!! But thanks for the hugs and kind words
Nursefurby - the cons is on about putting me on 320mcg ciclesonide 2x a day, seems a heck of alot of ICS on top of the fostair equivalent smart!! Though it might be more effective than symbi as don't think I get much of if in lol. Will have to see what he says later!! You're right I don't do things by halves - be nice to be a bit normal for a while lol!! Bit fed up of the home-hospital cycle now!
Curiouser - thank you I don't like the idea of methotrexate or subcut tbh both seem to be pretty extreme!! But it's reassuring I guess to know that there is still other things that can be tried if what's being done atm doesn't give control!! I deffo agree with you re the high steroids ... 60mg for a week is gonna kill me - its like we were talking about the other day isn't it? High maintenance = higher dose required to get control back!! At least planned taper from 60-30 seems to be relatively quick! So providing I don't flare again I'll be back at 30 within a couple of weeks. Ugh.
I seriously hope C that this is a mega blip this last month, as you say the weather and pollen etc. It does seem to have coincided with that! I reckon I could cope with the brittle attacks and a a couple of admissions yearly etc, if there was some control in between! 7 in 4.5 weeks seems a bit excessive lol - especially as they seem to have been all singing, all dancing ones!! As you say we can't predict, but its reassuring to speculate that this mega instability might not be a permanent thing!! It's one of the things I think I'm going to discuss with cons this am!!
Spriva - you can't take with atrovent, yeah? On atrovent QD and it makes a difference. What is more effective? Usage once a day or QD? The once a day is handier, but just wondered!! Excuse the bad English, have no brain left lol.
Hoping to escape soon probs be after the weekend now though tbh as need more IV stuff apparently cos lungs are doing very little at the min (pf struggling to reach 50% even post neb - argh!!)i - hopefully mg will resolve without other horrible stuff! Not come back from this attack as quickly as normal - combo I think of perhaps leaving it a bit too late/pushing it too far and resus being stupid!!
How is everyone else doing? Hope you're all coping with the weather!!
Laura x
Hey Laurs,
I think they found in studies that Spiriva once daily was equally effective as Atrovent 4 times daily, provided you can take it. ""Officially"" you shouldn't use atrovent as a rescue drug on top, but I think that might be ""unless a doctor tells you to"" - in the same way that we're only supposed to use 8 puffs of salbutamol in 24 hours. (Ha ha... was that hours? My body is saying sometimes it thinks they mean 24 seconds!)
I'd guess that this slower recovery is probably as much to do with the utterly awful pollen, dust and humidity - people with mild asthma are apparently dropping like flies, so for folk like you with lungs that are, frankly, pants, it's going to be a bumpy ride until the weather settles.
On the 'lots of ICS' - the problem is that a squirt doesn't equal a dose. In fact it varies by at least 3 fold - so the sicker you are the less of the drug actually gets absorbed and used properly.
Also - as much as it'd be lovely to get out soon, I've learned that getting 'better' can then help you get better properly. As in - it would be worth a couple of extra days of being in a better controlled environment (not that most hosps have aircon) with access to regular nebs and IV drugs, as it might lead to your lungs actually recovering to a much better 'baseline'. You don't want to be walking out of the hospital right on the edge of a readmission - all the A&E chaos and so on isn't worth it. I'd stay as long as you possibly can while the conditions are so lung-unfriendly out here. I know being brittle means you can bounce back super-fast at times - but maybe it's not unrealistic to aim for being a teeny bit less brittle before you leave?
I'm a total hypocrite of course - but in my case I know I have a neb at home, plus epi, and an amazing GP and also that my partner is pretty competent if things get nasty. The only time I've ever left truly unstable is when they've discharged me straight from A&E of course!
Good luck - I hope you have a few good days of things going in the right direction.
Cx
Have been reading with interest I am a diagnosed brittle asthmatic and a primary school teacher, I currently work part time in a very supportive school. I have periods of repeated admissions and times when I have big gaps between them. I was diagnosed at 19 and have had many years to get head round the implications of diagnosis. I have undertaken the brittle asthma protocol at the Brompton in London but I am now looked after by my local hospital by the resp and ITU teams in a shared care arrangement. I am lucky I have home nebs have had them since I was a child and both my consultants feel that they are right for me. And apart form that I wouldn't ever get of the hospital if I didn't have them and I live and work in a fairly rural area. Things for me are not always straight forward, I had a torrid time a couple of years ago and decided to leave my full time job and work as a supply teacher for a year only working when I was well was well enough, this really took the pressure of me and allowed me time to find a job that was right for me.
Personally I still hate hospital, fight against admission and get quite distressed with doctors etc, but what I think I am trying to say is although things aren't always easy a diagnosis of brittle asthma is not the end. From my own experience there are always options for treatment, I am at the moment undergoing testing for xolair...don't give up
I don't know much about methotrexate but my mum takes it for arthritis, apart fro regular blood test, I think she gets on ok with it
I hope this stay, whilst unwelcome, gives you some new ideas for management so you can get back home, and for longer this time. This weather has definitely been a struggle for me, so can't imagine how hard its hit you! Sending hugs
That's a good old dose of ciclesonide, I have 320mg once a day - plus Fostair twice a day (and spiriva - tiotropium)
Feel better soon.... x
Will update properly at some point. Struggling with this admission and lack of quick bounce back as Philomela said on costa thread for me. Lungs are being stupid!!
Just wanted to say Lynda - it's 2x160 ciclesonide I'm on once a day ... I spoke to cons after posting, I thought it was BD he wanted it taking, but its not - so my mistake lol!!
I have to consistently get a pf of 400 (pb 600) without nebs and can't get above 300 ... this morning was at 230 so doubt home will be happening today - the only way it will is if discharging cons/dr is not resp!! As when I am say doing nothing I look and sound really well!! This is usually the grounds they go on at the wkend with me lol.
Laura x
Sorry you are having such a bad time, I had a run like that last summer.
I take Ciclesonide twice a day, and Spiriva ( and all the other usual stuff, nebs, anti histamine , Seretide, azithromycin, steroids etc ec). The Ciclesonide and Spiriva helped stabilise thing better after I kept bouncing in and ou of resuss at an alarming/embarrassing rate last summer, so hopefully you will find them helpful.
Hiya,
Thank you everyone for your support, I WILL reply properly and individually at some point - this is just a quickie - my lungs are being vile.
SO .... I got out yesterday, I even told the discharging consultant that I wasn't well enough to be let out - a big thing for me as I am really bad for leaving way too early. Their view (and they aren't respiratory) is that I will be back in before long anyway so I might at well be at home - wouldn't discuss reducing pred below 30mg, as another admission before then is inevitable?!! That being said, my PF was less than 30% pre nebs and I was still on 2L of Oxygen - plus lungs apparently sounded horrendous and I was still being given a ridiculous number of nebs ... very confused at this discharge.
Meds changes: instead of symbicort smart (400/12) I am now on Fostair 100/6 (2x2 puffs + the mart regime) and ciclesonide (2x160mcg), currently on 60mg pred and 600mg(instead of 400mg) of uniphylline as I wasn't in the therapeutic range plus the stuff I was on before. I have to discuss home nebs at my next outpatient appointment.
Despite having been to ICU on a previous occasion (a big overreaction!!) this has been the worst attack I've had I think - though I got HDU this time :-). Had to have 2 lots of Magnesium and they considered Aminophylline - it also took a long time to resolve - it still hasn't really and I don't want to go back in any time soon (though obviously will if I need to!)
I will post properly another time. Don't feel upto it currently - either physically or mentally.
Thank you for all your support,
Laura x
Hi Laura this might sound odd but I'm not sure if saying 'glad you're home' to you, feels quite right! There is NO WAY Papworth would consider letting me home in the situation you describe, their response sounds very puzzling - and shouldn't it be a respiratory bod that makes the decision with you? I do hope you're safe enough to be at home without oxygen as you have been needing it so much in hospital :/ hypoxia will also cloud your decision making if unwell.
I am no longer treated by my local hospital as I have open access to the ward at Papworth - but to give you a yardstick, Papworth admit me in a way better state than the local hospital used to discharge me! I think their (local) decisions aren't always solely about patients best interests, but pressure on beds etc. I used to have to fight even to get 3 days of IV antibiotics locally - now the absolute minimum I get is a 10 day course, plus IV aminophylline.
Please keep safe x
Sorry you're still struggling, can't believe they let you out even though you said you didn't feel safe. I would have thought they would be on very dodgy ground if you then had a severe attack. I would have been tempted to just go straight back into A&E since your peak flow was that low.
How very confusing and frustrating!
Hi All, just letting you know, Laura is not 100% but is currently well enough to be at home, bit of a team effort keeping an eye on her, me and Philomela are in regular contact with her and she's being very over cautious in her deciding whether she needs to go back. Fortunately Laura's nails are quick to change colour when she's hypoxic, so she can keep a reasonable eye on that at home, been speaking to her a lot and she's sofa-surfing and managing without needing too much vento. She's off to GPs tommoz, and i'm sure GP will make her go back ifd things are unstable, and there are others in the house with her to keep an eye on her!
Just thought i'd update (with Laura's permission obvs) so that no-one worries!
So frustrating when cons make strange decisions - i personally think that if a 'younger' person is saying that they need to be in hospital then chances are that they probs do as frankly no-one in their right mind would be in unless they really had to, the docs in lancaster have learnt that unless im jumping at the opportunity to escape im probably too ill to be at home! Esp as still having nebs and o2 on and off in hosp im really surprised that the doc discharged! But I'v ebeen reminding Laura that there is no issue in ringing 999 and she's told me she's got every intention of being sensible!!
Oh goodness Laura, what a time of it you are having, I am so sorry that you are still suffering.
It seems strange that they should discharge you from hospital like this.
If you do need to phone 999 for an ambulance then do so.
Take care.
Hi Laura,
So sorry to hear you are still struggling. It must have been very frustrating after you had geared yourself up for a longer stay.
Take care
Thank you soph for posting for me and making sure I'm behaving lol!!
Just to update everyone - still at home sat-mon was not great, but I was not going back in on 60mg pred!! So made the decision to drop to 30mg yesterday instead of 50 as I knew that I would likely flare on higher does and that it would cloud my judgement of when I needed help. Probably doesn't make sense to many people, but after talking to a few people I made what feels to me to be a rational decision!!
I had a really good day yesterday I think all the rain bringing the pollen down and perhaps the changes in temperature/pressure were positive contributors? I also wonder if I am entering into the therapeutic range for the uniphylline - even if its making me feel really sick at the min again!! I have the blood test tomorrow.
Struggling a bit more today - currently not needing to do anymore than the good old vento, but also aware of when I need help!! Won't be today though I don't think
My GP is being awesome - spent along time with me the other day talking through things and why everything is so unstable at the moment and trying to help out with the psychological impact it's obviously having on me. Also my most recent discharge letter says ""type 1 respiratory failure"" in response to my ABG numbers, so she spent along time discussing the implications if this and helping me to process it!! I'm sure I've had worse ABGs in the past but its scary to have stuff like that written down!! She has also said that she wants to see me at least fortnightly to keep a check on things! I think that this is fab and above and beyond what I can expect of her - eventhough with regards to my asthma there is nothing she can do now!!
Also had a positive physio apt, where it was decided that I have no additional breathing pattern problem, which is a good thing I think so I have 1 more appointment and then I'll be discharged from physio - something going well!! My cons is also referring me to ENT and arranging a chest CT to rule out any other factors which may be contributing to the current severity of my asthma!
Hoping things stay calmish and I need to make no more visits!!
Hope everyone else is well!! Laura x
Hi Laura, Ive been meaning to say hello for a few days but have been too busy concentrating on breathing myself! I hope you are doing a bit better.
Seeing the ciclesonide doses youre on, thought I'd say I'm on 320 twice a day (max, I believe) and thats on top of 4x250/25 seretide twice a day! I think some of the rules go out of the window when youre at our stage and under good consultants.
I see they are considering sub cut. That was suggested for me and I too wasn't very keen, so I asked if I could try Bambuterol. Its an oral beta agonist (I think its a form of terbutaline but I might be wrong) and currently out of fashion - my consultant hadn't prescribed it for years and even the hospital pharmacy had to order it specially - but as I had asked he agreed to let me try it. I *think* its helping! Obviously it might not work for you, but it might be worth asking before going for the more invasive options. Im also now on a drug called Roflumilast. Its licensed for severe COPD and has only had one trial in severe asthma - of 22 patients, 12 had good results. Im not sure whether its generally available for asthma (my inpatient cons did the one trial its had!) and its expensive enough to make my GP wince when she put it on my repeat, but again, I thought I'd mention it - if youre anything like me, you want to know exactly what all the possibilities are - if theres a straw to clutch, I want to clutch it!
Thinking of you and sending lots of love xx
Hi Sparkle,
Thank you so much for your continuing support!! I did post an update earlier in the day about whats going off now, but it didn't go up until I contacted the moderators - something to do with the recent spam posts and stuff.
Are you still really struggling? I saw what you wrote on the late nights thread, it doesn't sound good!! Are you trying to dodge another admission? That's what I feel as though I currently spend my life doing and knowing that another serious admission is inevitable before too long.
Your meds sound interesting!! I might mention to my consultant the next time I see him some of the things you have mentioned, just to see if there is any chance of trying anything else. Personally I would rather take some of the things I am on (particularly the 30mg (at least) maintenance pred) before adding anything else on - probably not gonna happen though at the min!! My consultant has taken me off Symbicort SMART (400/12 though unlicensed! with the maintenance being 2x2puffs) and put me on Fostair MART 100/6 with the maintenance being 2x2puffs (I've not been told how much I can use the MART version though so not. I am definitely feeling the difference in having 12mcg less of the formetarol component though :-/), also he's put me on ciclesonide - 320mcg. All that is alongside crazy amounts of other drugs - salbutamol, atrovent, montelukast, pred, uniphylline, citerizine and a load of other stuff to deal with side effects and stuff ... ugh.
I agree that good consultants will ""think outside the box"" for those who aren't textbook - we deffo don't fit into that bracket!! Unfortunately, while mine (and it sounds like yours is too) is great, there are some terrible ones out there too. My first one was pretty ""textbook"" and when things got tough, he went down the anxiety and breathing pattern route - which its been established I have neither!! The one I now see (only seen him as an inpatient, but he's seen me both well and acutely unwell) is willing to try things like home nebs (needs to be discussed in outpatients though - he does seem for this, which is refreshing as I've spent the last few months being told by others its too dangerous to allow this. One of the reasons being that it takes away the first line of treatment when I end up in A&E, but I always need IV treatment anyway AND always go to resus, so I actually think it would make me safer!!) and the other treatments which he has up his sleeve incase other things don't work. It also helps that he is asthmatic himself and difficult/brittle asthma is his area or interest. Its good to know that there are straws that he is willing to clutch at!!
Take Care Sparkle, sending lots of hugs and get well wishes!!!
Laura xxx
And ..... in again. Soo frustrated. Will update laters!!
Admission no 8 in 5 weeks! Resus were awesome tonight though huge thank you for keeping me calm in my meltdown state!
Laura xxx
Sorry to hear about yet another admission and wishing you a speedy and complete healing. Glad to hear you had a better experience in resus this time round.
Thanks Beth
Home now - super fast bounce back this time the whole team were pretty awesome this time - a combination of a couple of things I think 1. I couldn't face going in and as a result left it later than I ever have before, so treatment was started very quickly (not proud of myself for this, worried a lot of people and I WILL NOT be doing that again!! It's not clever.) and 2. My consultant has written something up which A&E have which says what treatment I always need in A&E.
Was also given IV adrenaline for the first time - I think this made a difference to the initial bounce back and then the normal stuff worked its usual magic
But yeah, HUGE thank you to the resus team the other night for picking up the pieces of my stupidity and my awesome friends for telling me how it is (you know who you are :-))
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I'm on protective meds to stop bone issues, looks like I'll always be on at least 20m pred unless they find some wonder drug! I agree though its good to find similar people 
brittle asthmatic?
my son has brittle asthma and i need advice 
Work and brittle asthma 
