First of all sorry if this turns into a bit of a moan or seems a look back to a few months ago - feeling very frustrated at the moment.
After a few weeks where my asthma hasn't been technically controlled but I have been able to get on with daily life, I have had a cold for a week now which has got down to my chest. I feel that I am in a better position than a few months ago as I have found an understanding GP and nurse but am once again faced with the clear chest, 99% oxygen so the idea of needing pred wasn't entertained and I am left feeling a bit like I've wasted my time/there time. On reflection, the only thing they didn't do was my peakflow which has only been about 70% for the last few days (and this has been very variable). I think my problem is that I am very reversible so I feel rough, take a few reliever puffs and get on but these only last an hour or so and often I need about 5 puffs to do this. I also haven't had a severe attack in over 10 years so when I say that I am waking up SOB and needing 10 reliever puffs, no one batters an eyelid. In fact the only thing that concerned the nurse was my heart rate was 160 and I was shaking! Therefore the advice I am given is try to limit the amount of reliever I take (but they can't say/don't know what to)! I have been taking a lot of reliever but mainly so I don't need to take time of work. There is an element of cough from a cold so I accept I will be coughing but things like going into the cold air (even for 2 minutes) have been setting me off today but the impression I got was that it is just a cold (slightly high temp, runny nose, sore throat, cough) which will make your asthma worse and your immune system is probably pretty rubbish because you haven't been well for months. As I said, this is an improvement in that there is a recognition that something is not right!
Not really sure what to do now.
1) Just let the cold ride it's course trying to limit reliever use as advised.
2) Phone up GP and ask for pred (I am reluctant to do this as I often feel that they think I am exaggerating/worrying-when I mentioned that I had spoken to an auk nurse, it was implied that I was researching!)
3) Phone OOH in the night when the bigger attacks are happening and the reversibility hasn't kicked in and O2 or chest are still showing that I am struggling.
4) Make an appointment and not take my inhaler before I go so that I am terrible (yes I know this is dangerous but that is how frustrated I feel about it).
Sorry to go on and sorry of this makes very little sense. Have literally just got back from the doctors and feeling very emotional about it all.
So sorry you are not well. If you are concerned that a cold will result in a long post cold flare then I'd consider talking that out with your GP.
If your current preventers are doing their job then the flare will probably die down when the cold resolves or soon thereafter. But if you have a history of needing a step up in treatment or else being sick for a long while that might be another matter.
I've been in both situations. There was a period where I could get away without preventers on a day to day basis, but if I caught a cold and didn't start in on them right away I'd be sick for weeks. This year of course I've been on loads of drugs. Although colds do make things worse I don't always need an increase in pred to avoid a long lasting problem.
As for your GP thinking ""research"" is bad, are you OK with that? I think we have a right to understand the different treatment options and how doctors choose among them. After all they are our bodies and at the end of the day we are the one's with final responsibility.
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Hi Beth and thank you for your reply.
I have periods of very different severities. There was a time when I wouldn't worry too much about a cold (I am mainly allergic) but it was a series of colds last year and pneumonia the year before which kicked off the last few years with my asthma getting worse. I am generally quite worried that my asthma is getting worse as I had a period of 5 years in my teens with severe asthma (nebs, maintance pred, frequent admissions in ITU and intubations). Over the last year, I have had this struggle for pred and this delay usually means that I need a good three weeks to get back to normal. My preventers are also not great at the moment either.
As for your GP thinking ""research"" is bad, are you OK with that? I think we have a right to understand the different treatment options and how doctors choose among them. After all they are our bodies and at the end of the day we are the one's with final responsibility.
No I'm not really ok with this but part of it is probably me being a bit paranoid anyway. I also put myself in their position and I hate it when people question me at work. As I have the problem of being well there, I often find GPs a bit dismissive. I was considering changing a few months back when one nurse accused me of doctor hopping (in reality I saw whatever dr was avaliable and went to a walk on centre 100 miles away from my home as I was visiting friends) and that it wasn't asthma as I could talk in fall sentences when I wasn't even having an attack - needless to say I haven't seen her since and declined the appointment I was offered with her. what made me stay is that I have found two doctors and two nurses who generally listen and, even though they don't really know what to do, are willing to accept how frustrating/difficult it is for me.
I can see why you are concerned ... and also get you on the high reliever use just to go about your business. My reliever use also goes up significantly when I can't just be sitting around waiting for my lungs to get well.
What do you think would happen if you discussed your concerns about this years past history and preventers not doing what they should without directly asking for pred? Is it possible he/she just needs a nudge to think things through?
I completely understand as when I am bad this is exactly my problem. I had a period of about a year after my asthma came back where I had a couple of bad attacks requiring nebs, but mainly lots like you describe, constantly waking up in the night needing 8-10 puffs of ventolin before I could speak, but then resolving quickly after I'd had it. Lots of day to day tightness & coughing, which got much worse with colds so I would need a week off work to rest taking 2-6 puffs 2 hourly to settle things down. Bounced in and out of go and ooh without anyone ever doing anything, just constantly getting told no wheeze and good sats so nothing they could do.
No advice though sorry, a combination of increased seretide, changing antihistamine to fexofenadine and changing school so reducing stress has improved mine. I do think some pred is needed so you should be persistent, I do push for it when I know I need it because otherwise it drags on and I end up needing a week off to recover. Maybe a couple of days to rest until the cold goes? I know it's annoying but it might stop you needing more time later?
Thank you once again for replies. As ever, it is always good to know other people have the same experiences to keep you sane (no idea what I did the past few years before joining!)
I'm not particularly proud of my reliever use and decided it was better not to directly answer the how many puffs today question (which was 24). I just find it hard to sit still and always find returning to work stressful if I have time off (2 years ago I spent a week at work feeling really rough and then was told I had pneumonia and then signed off for two weeks on the first day of the Christmas holidays!) I am also currently at the stage where it would be better if I didn't run around but if I sit at home then I am generally feeling not ill enough to be off work. Luckily, I work in fab team and if I need a few moments to take my inhaler/cough etc then somebody will take over.
Beth - I have one GP who is kept experimental and thinks he is quite whacky trying Spiriva (after the cons suggested tilade he thinks anything goes). He also admits when he is at a dead end and shares my frustration of being discharged by the cons. I usually get pred after a few visits when they say I look tired and pale rather than anything else but at least I have it. Ironically, I saw a GP last month when not great but ok who said that as pred has worked so well in the past, then I should start it earlier (pf was starting to drop a bit) but I think they are concerned by the frequency I need it.
Hi everyone,
Just thought I would update. Last night, I went outside to put the bins out and the cold air triggered an attack which needed me to use 10 puffs of Ventolin (can't usually take it but do if a turbohaler won't do). This helped but I found I was needing to 'top it up' every half hour and got to 20 puffs in a hour before even attempting sleep. I phoned 111 who were wonderful. Initially, they wanted to call an ambulance but when I explained the situation, the lovely lady said I certainly need to be seen in the next hours and passed on to OOH with the strict instruction to phone again if inhaler use increased. I thought I would be in for a long wait for their call back but this was within 2 minutes and then I went down to their centre. Again thought I was in for a long wait but was seen quickly by the kindest doctor. Although there was no wheeze, she said I was clearly struggling and it could be explained by the fact that the reliever was keeping me going. She actually asked for my opinion on Nebs and pred - I said pred was needed but wasn't sure on the neb and she suggested I had a neb while she sorted out the pred (with the view it can't do any harm). She really was great - a balance between guiding you but letting you have a say and really listening while being lighthearted which is what you need at 10. I even laughed when she asked if I took anything other than my blue inhaler! The whole thing took 11/2 hours from phone call to getting home! Pred is already kicking in (given at the advised adult dose-made me think that the auk nurses would be pleased!) and I have been good and taken the day off work. My asthma nurse phoned me this morning to say she read the report from them and was checking how I was. She also wondered if they did SATs as it wasn't mentioned (she listened to me too much and went off what I said rather than relying on SATs but it would have been useful for future situations).
Sometimes when bad Ifantasise about having a neb, think I would jump on anyone who offered me one if I got to ooh. Glad you took the day off and at least you have the pred now.
KaylaCP - I am so glad you got the help you needed finally - that must not have been fun needing so much ventolin to calm things down. I'm glad you called OOH and got help and didn't just tough it out.
I don\ think that you (and your GP) also ought to push for getting reassigned to a cons - perhaps a different one? As you said you've been on a lot of pred in the past year - that can't be good and if more control and less need for pred is possible, someone ought to be helping you and your GP get you there.
Hoping you feel better soon.
Do you have plans for your sofa surfing day (other than breathing and resting up - which in some cases may be quite enough)?
Spookymilo - I think that I was just so shocked that someone who had never met me before and didn't have a lot of history, would actually listen and offer me a neb and pred that, on top of the shakes and amazingly high heart rate, I didn't know what to say.
Beth - the plan is to refer back. After I questioned the sudden discharge, my GP explained that I was probably the victim of a funding issue where my hospital are being put under pressure to discharge patients (we had a right old moan about it) which is why she sent a list of possible things to try and a note to refer me back if necessary. The only thing we haven't tried is seeing an immunologist for desensitisation but this is unlikely to be agreed as my asthma is not just allergic, I am allergic to many things and have severe allergic reactions. My cons was good (I felt she really understood what I was saying about impact on life and she once fitted me in before her clinic the following day when me GP phoned her up to ask for some advice) so I would be happy to go back to her and my GP thinks if he phoned her up, she would probably see me without waiting months for a referral. I have a telephone consultation with my asthma nurse tomorrow to discuss whether we should o ahead with a trial change in inhaler next week (basically I think Spiriva is helping me but they want me to stop it to see if it makes it worse). I am supposed to be seeing GP at the end of next week to discuss how it went so I will bring it up there. I have a list of questions to ask them!
Sofa surfing day has been spent on DVDs and paperwork. I also have some new fish which I have found to be very relaxing thing to watch! (I've always wanted pets but am allergic to just about everything furry and don't want a reptile). Got another day off tomorrow to make sure I am totally over it too.
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Beth - the plan is to refer back. After I questioned the sudden discharge, my GP explained that I was probably the victim of a funding issue where my hospital are being put under pressure to discharge patients (we had a right old moan about it) which is why she sent a list of possible things to try and a note to refer me back if necessary.
What a bummer about funding cuts. Do you have any idea of a time frame for being referred back?
Sofa surfing day has been spent on DVDs and paperwork. I also have some new fish which I have found to be very relaxing thing to watch! (I've always wanted pets but am allergic to just about everything furry and don't want a reptile). Got another day off tomorrow to make sure I am totally over it too.
I love fish - my GP has a tank in the waiting room which I really enjoy looking at. I also got to pet sit for my friends fish this summer when they were on vacation. The tank was at their house so after I fed them I'd sit for a few minutes just watching the fish.
Kayla - so glad you got a good GP finally at OOH! I could have written this post (except for the 'used to be severe' bit) as mine are so similar, and I've also had varying experiences with OOH: in June when I had a lot of trouble I got a series of really amazing ones but recently I seem to have had my year's ration and be back to the ones who just say 'ooh not sure what to do, your chest is clear and your PF is fine'.
Also had a recent frustrating experience in A&E which I posted about elsewhere and what you describe sounds v familiar. I am especially frustrated because for some odd reason (I didn't ask for it) my local hospital has just sent me my clerking write-up and figures from the second admission I had in June and it seems fairly obvious from that that I can seem not too bad, have reasonable if not brilliant PFs but not have such good blood gasses - they were not awful panic etc but had progressed beyond the initial stages and I think that was why I did get IV magnesium despite not 'ticking all the severe boxes' (I don't think of myself as severe and didn't think that was that bad - OOH sent me in - but on that occasion I had features from about 3 different 'severity of attack' features and it was weird. Plus I do 'quiet but not silent' rather than wheezing which I wonder - maybe harder to detect? Very confusing in general - if they don't want a confusing patient they have no idea how much we don't want to BE that confusing patient as I would much rather be textbook!
I'm really glad you are being referred back though as definitely something needs to change! Crossed fingers she can fit you in without a long wait.
I'm not sure about being referred back. I spoke to my GP today (as it was the last day of pred) and we have decided to leave it a while before stopping Spiriva (there are too many variables to know exactly what is going on. I asked about phoning the cons to see her again and he said that is the next step after we know what happens with the Spiriva. He has referred to the immunologists as suggested but agrees that they prob won't see me. He also thought it was a good idea to mention theophylline to my cardio cons when I see them next month. I tried to make some 'loose suggestions' which seemed to work this time which was good.
Philomela - I did think of you when posting and how you describe your asthma which does sound so similar (and frustrating) to mine. I think I got the term moderate persistent from you and now use it to refer to my severity (although I am technically severe my GP have started to talk about difficult asthma more too).
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