I just wondered whether it is possible to develop any sort of steroid resistance or tolerance? And if so how and why might this happen?
Admittedy my asthma has become much worse over a period of time, but dosages of steroids which in the past used to help (going back to early teens) is now not working. I have tried several times to taper down, but 30mg seems to be the point at which any control is lost and still sympotmatic upto 40.
I don't seem to get a lot of side effects at 35mg and below. Well, except for a lot of asthma symptoms!
I am just wondering, because I am a real science geek. Perhaps its just because my asthma is now much worse (severe brittle diagnosis).
Has anyone got any experience with this, or able to shed any light?
there was a study published very recently and reported in all the main press (BBC etc) that showed that Vitamin D at high doses is effective in treating asthma in people who are steroid resistant.
Steroid resistance is definitely a 'thing'. I'm the opposite - I'm very responsive to even small doses of steroid (I get a lot of side effects). Do you get many of the pred side effects?
There are all sorts of possible variables, from absorption to metabolisation, which I believe can vary pretty wildly - so the rate at which you reach peak dosage and the rate at which you eliminate the steroid can be so fast that you get much less overall impact than a slower metaboliser.
I'd say it's something to take as a concern to your GP and get them to speak to your specialist. Or is there a nurse or secretary you can ring to pass the question on to your consultant directly?
hth,
Cx
Cheers curiouser glad I'm not just going mad!! Lol
Do you think you're the opposite because of your adrenal issues?
When I've been on 50-60mg pred I get the works, insomnia, moon face etc, but at 40 and below the only side effect I've really noticed it that my periods are always slightly late and a little odd. At 40 my face is a bit rounder, but saying that I'm the only one who notices it, even my mum doesn't. At 35-40mg pred still get asthma flares, which can be concerning, but control seems to go at 30.
That's why I wondered if tolerance/resistance happens if you're on long term pred. I just wondered tbh whether there could be some other contributing factor which is aiding the worsening asthma? Put 2 and 2 together, but might be getting 22 lol. Just curious!
I need to ring cons secretary today anyway, so might just ask that question whilst there as my question is about my pred taper - at the 30mg point now and doing some major yoyoing again. Need a bit of reassurance I'm doing the right thing lol.
I'd not heard of the vit d thing, I take alendrolic acid as a precaution (family history of osteoporosis), would that have an impact at all? It does something with the absorption of calcium/vit d?
I am not sure I understand the role of metabolism? I put on weight easily (always have and no worse with pred), would that mean my metabolism is slower and therefore vitamin d absorption should be better?
hi .iv not heard of vit D thing either .im on15 mg steriods an day at min .strated on 20 6 months ago .got fat face .fat eveywhere .cant get any lower on preds .
Hi Laura
I'm also the opposite, and get a barrage of side effects even at low doses, including significant osteoporosis and amenorrhea, but can still have serious attacks on 35mg.
I'm curious.. You mention you're on alendronic acid - aren't you on a calcium/vit D combo too? They are usually prescribed together.
Alendronic acid, like all bisphosphonates, inhibits the osteoclasts from breaking down the old bone too quickly and gives the osteoblasts a chance to rebuild more effectively. This improves the density of the bones and reduces the risk of fractures. It won't have a positive effect on your asthma. Might be worth talkin to your consultant about the vit D research though
You can metabolise different things at different rates, so I don't think you can infer the rate of your metabolism of glucocorticoids from how you deal with calories. I believe 'metabolism' in this context just refers to the rate at which the drug enters, is used and then is eliminated from the body.
When I went to the Addison's AGM recently there was a lecture by a good Endo, and he was essentially saying that if you think of the steroids as petrol, some people have a very efficient engine, and can go for miles on a little bit, and others have a much larger engine and need plenty just to get around the block. Just like with cars, you can't tell from the outside how the engine is set up inside.
In addition, how you 'drive' your car will make a big difference. In acute illness and stress we normally make a ton of cortisol. In steroid patients this ability is squished, so you've only got what you've taken - and if you use some up because of the stress of dealing with, say, an asthma attack, the levels that are supposed to suppress your over-eager immune system might not be there until after your next dose, so inflammation increases again. Again, different people need different levels of steroid both to respond to a stressor and to keep their immune system behaving. In theory 40mg is a high enough dose that there will always be enough left over to keep that immune system in check, but it's not always the case, and 30mg less so.
On top of that, absorption varies a great deal - especially with the enteric coated drugs.
The adrenal issues I have don't effect my sensitivity to steroids directly, but they're how I've learned about it. On the level I'm on - equivalent to about 3-4mg of Pred, I have pretty bad side effects. An IV booster of 100mg of HC gives me worse side effects, really quickly, and then it seems to take a long time for them to go. Annoying!
It would be worth asking about your fosamax and Vit D. I just found out yesterday that I need to take it. Do you take Adcal or anything as well, to make sure the Vit D is there so that you don't get depleted?
Cx
Thank you both!! I'm not on adcal, I think the only reason I was put onto the alendrolic acid was when I mentioned to my cons about my mum having osteoporosis. Is this something I should ask about? Is it a cons or gp question? The bone density issues steroids can cause concern me, eventhough I don't appear to have any significant side effects. Also on omeprazole.
I used to get much worse side effects when on pred than now, which is what made me wonder if there could be a degree of tolerance or possibly something else going off? It just seems odd that things have changed. 30 mg pred and asthma plays up, 40 a bit more control. In the past a 5 day course of 40mg would happily deal with a flare up.
Though we're working towards a 20mg maintenence (not going too well lol) I suspect this is going to be a shot term thing, lots of other things have been mentioned, there is reluctance all round to keep on the steroids.
The metabolism analogy makes sense - you'd think being a biologist I'd be less dense lol.
Cheers for all the info!
Laura x
• in reply to
Hi Laura, I would absolutely discuss AdCal or similar.
Excerpt from BNF:
Osteoporosis
Osteoporosis occurs most commonly in postmenopausal women and in those taking long-term oral corticosteroids (glucocorticosteroids). Other risk factors for osteoporosis include low body weight, cigarette smoking, excess alcohol intake, lack of physical activity, family history of osteoporosis, and early menopause.
Those at risk of osteoporosis should maintain an adequate intake of calcium and vitamin D and any deficiency should be corrected by increasing dietary intake or taking supplements.
I recall a GP telling someone recently that having at tin of sardines daily was enough. When you looked at the calcium comparison it just doesn't compare, supplements vastly outweigh what you would get from a tin of fish, never mind the vit D content. Vitamin D is vital as it helps the body to absorb calcium. So if you are deplete of vit D, no amount of calcium will help if its not able to be absorbed and utilised by the body.
What is less known by folk, is that PPI's (like Omeprazole) are implicated in osteoporosis too. The BNF recommends the following:
1.3.5 Proton pump inhibitors
Cautions
....Patients at risk of osteoporosis should maintain an adequate intake of calcium and vitamin D, and, if necessary, receive other preventative therapy (see section 6.6)....
Hope that helps
• in reply to
I recall a GP telling someone recently that having at tin of sardines daily was enough. When you looked at the calcium comparison it just doesn't compare, supplements vastly outweigh what you would get from a tin of fish, never mind the vit D content. Vitamin D is vital as it helps the body to absorb calcium. So if you are deplete of vit D, no amount of calcium will help if its not able to be absorbed and utilised by the body.
I asked about diet vs supplements at my DEXA scan, when they gave me a leaflet of calcium content of different foods to stick to my fridge. Tin of sardines is 400mg (if you crunch the bones, yum), and 2 Adcal D3 tablets = 600mg of calcium, but they said that dietary calcium is generally better absorbed than calcium given via supplements, so perhaps that's why they give more?
Apparently phytic acid - present in wholegrains, nuts and pulses - can mean that all the calcium passes straight back out of you though, so that sardine-and-kidney-bean salad my partner thinks is so high in calcium probably isn't that great.
But yes, without the Vit D it's not going to be used anyway - seriously, we need to start a campaign to have spontaneous bank holidays when there's a sunny Friday or Monday
Thanks for the info on Omeprazole - I knew I'd read that somewhere and couldn't remember where.
Laura - I'm sure it says on the Fosamax leaflet that you *must* be on a Vit D supplement while taking it - or at least be having your levels monitored.
There's nowt on fosamax leaflet saying you must be on a vit D supplement whilst taking it. But the BNF states ""correct disturbances of calcium and mineral metabolism (e.g. vitamin-D deficiency, hypocalcaemia) before starting and monitor serum-calcium concentration during treatment"" While Im not on alendronate, I do have my levels monitored at Papworth.
That said, I have never known anyone be on a bisphosphonate without Vit D/Calcium supplementation. However all the folks I know already have diagnosed osteoporosis, the horse had already bolted.
Sardine and Kidney bean salad? Ugh, would rather have my PEG feed LOL!
• in reply to
Sardine and Kidney bean salad? Ugh, would rather have my PEG feed LOL!
I'll pass that on
Thank you so much for all the information!! Certainly helped a lot!!
Is alendrolic acid the generic name for Fosamax? I am on the 70mg version once a week. I have another appointment with my cons and the resp nurse in 4 weeks time, so should I discuss it with them then, or do so before? STUPID reason not to contact my GP: I seem to live there at the moment, they are amazing, but if I ask for yet more medication, are they going to think I have a real mental issue? I though the alendrolic acid was meant to help prevent to prevent bone density issues - does it cause problems with the absorption and metabolism of calcium? If so why have I been put on it rather than adcal? Will leaving it til 18th July cause any long term problems? Have so many questions lol.
I've never broken anything in my life, but there is a family history of osteoporosis, which I made sure I told my consultant!!
My GP put me on Omeprazole last week as was having issues with stomach pain etc - think its the combo of meds.
Will the ICS (currently taking 3200mcg a day of Budesonide) also effect the overall bone density and steroid issues?
What do you guys reckon? Is it just the asthma being a pain in the backside, explaining why the steroids don't work as well as they used to OR something else going off in addition, or both? I know you can't answer from a medical point of view, but you clearly have a lot of personal experience!! Its a discussion that I am going to have with my consultant in 4 weeks time ... just gives something to go with.
Thank you
Laura x
Hi Laura, alendronic acid is the drug, aledronate and fosamax are the trade names for it.
Lynda
Laurs, your response to steroids sounds very much like mine and at similar dose levels. When I was first officially diagnosed with asthma, a medrol dose pack would make an exacerbation go away completely. Then after a year or so, it stopped being the miracle cure. At that point the diagnosis switched from plain asthma to ""chronic asthma"" - I was in my mid-late 20's at the time. Since then the asthma has come and gone, sometimes more of a problem or less, sometimes ignored more or less. But never really able to get fully under control even with steroids once I get stuck in a run of several months of bad asthma.
I also have minimal side effects and it does make me wonder about resistance. For me too, 35mg and up: shortened menstral cycle and facial rounding that no one can really see except people who know me very well, but nothing more than that that we can tell. 30mg - still some very slight facial rounding, but no other symptoms that we can see without testing. As for more hidden side effects:
We recently checked for diabetes (negative)
Bones (waiting for results - did test today)
Eyes (waiting for appointment)
The bones and eyes won't really tell me what pred is doing though. I was vit D deficient before I went on steroids. osteo also runs in my family - mother's first bone scan 3yrs after menopause had her bones at age 80 even though she was in her early 60's (family has late menopause). I suppose that could have started at menopause, but I do wonder if it begins earlier than menopause when there is that much bone loss at age 60. I had some minor excess ocular pressure at my last eye exam four years ago - not enough to treat, just enough to get a warning about wearing contacts too long.
Steroid resistance can be acquired: aside from absorption issues, some people have fewer receptors for steroids to act on. Also there is an acquired resistance that primarily affects the impact of steroids on T2 cells and has been investigated in connection with asthma. However, that kind of resistance still has the pred side effects because it only affects the action of pred where asthmatics need it most (grrrr) and not the overall body reaction to steroids. If I have a chance I'll try to find the links to some of the articles I read.
Hi Laura,
All GPs will have many, many patients on the various bone-strenghtening drugs - most of whom will be elderly. I'd definitely go and see them about it - particularly given that you've started the Omeprazole.
Newsflash: GPs really like it when you have something that they can fix / help with! They like to feel competent, just like the rest of us. Your bone health is something your GP is in a really good place to manage, so I wouldn't hesitate to take it to them. While we're still young there are apparently many things they can do to help remodel our bones - saving you a lot of trips to the GP for arthritis and fractures later!
It's not 'urgent', but equally there is no point in putting it off.
I totally understand about feeling like you live at your Docs, but it's just a fact that sick people need doctors. All the discourse about the burden of chronic conditions and how overstressed GPs are, flooding the news at the moment, doesn't help. But believe me, we are not the patients that GPs are complaining about, and the idea that the NHS would be fine if only it wasn't for the ill people is just silly
hth,
Cx
Hiya,
Thanks for all the information and sorry I haven't responded before now!! Looking at getting home today if all remains stable while they finish discharging me
Over the last couple of days I have had the opportunity to ask this question, and been given some interesting responses. When the respiratory consultant came on Friday morning, I spoke to him about the most recent flare up at 30mg pred and whether he thinks that I could have developed some resistance to the pred. He said like all medication your body becomes used to it. Also spoke about the Alendronic acid and omeprazole - he said that I need to discuss with my GP, but that I should be put onto it due to the high amounts of steroids I am currently needing.
I had another interesting conversation yesterday after eventually being moved to respiratory, the consultant there (not specialist respiratory though) said that I seemed to be very steroid responsive, as the attack which landed me in hospital while ""severe acute"" is calming down quickly. I am wondering though ... I had already taken 30mg pred that day, was then given 200(not sure of the units!) of Hydrocortisone, followed less than 12 hours by 40mg pred - there would have been some serious issues I reckon with tolerance if all that hadn't helped!!! I also think that the Magnesium Sulphate has played a big part in resolving it.
What have other people's experiences with the Magnesium been?
I will be discussing the points you guys have put above with my GP tomorrow
Can't wait to get home!! I was given the choice today about whether to stay in or go home (O2 sats stayed at 95% and above all night with no extra oxygen and only 2 nebs - being encouraged to be very liberal with reliever, and PF now at the top of yellow zone ... yay!), got to see GP tomorrow to follow up, got to contact my normal cons and get a follow up apt asap and ring 999 if I have to use 2x10 puffs of reliever.
Are there any questions I should ask my GP tomorrow? LOL I must admit, this *do* has shook me up and now everything is calming down, feeling pretty overwhelmed by it! How does everyone else get over this - both physically and psychologically?
Laura x
Crossing fingers for you Laura - hope you're on your way home! Definitely take it easy once you get there though.
I have no idea about the steroids, but I don't seem to have an entirely typical reaction. The first time I tried pred it didn't seem to do much. They figured at the time that meant it wasn't asthma, but a cons later pointed out that it could have halted me getting worse and it was worth trying - and in fact when he put me on a 3-week course again it did help, subjectively and objectively, and has helped since. Very weird. The cons I've just stopped seeing was convinced I didn't ever need pred, but he was also convinced that was because the 'asthma' component was well controlled and the rest was breathing pattern/larynx, which I am not convinced by at all especially given recent events (plus the fact that I've been working on the breathing pattern element and it has improved but not got rid of everything). So I think that was more based on some odd ideas about what was going on; I found it odd tbh because he seemed to acknowledge that I might have actual flares of asthma but that these would not require pred. even though any fairly mild asthmatic with a flare might need a short course, and I probably count as moderate. I don't know if he had a reason to think that, but I did find it odd given that he had documented evidence of it helping, though I get that he wanted to avoid pred where possible esp since he'd found it was messing with my Vit D in a big way. I appreciate his taking that into account but felt at times he was looking only at one side of the issue.
My GP is a bit confused though as I think he's not sure if pred helps me or not and I have to tell him I think it does. He does accept this but commented that even so, it doesn't seem to help as quickly as it might. I do seem to end up on longish courses, and I can't work out if this is somehow how I react or if it's just because I avoid getting it, or because for various reasons (see above) I've not been given it until things have got worse and so it takes more time to sort. The hospital were just going to put me on a standard short course but then I explained I'd been on longer weaning ones before and that at this point I'd probably need more than 5 days based on previous experience, so they then said see GP and go on weaning - though they wanted me to drop from 40mg to 20mg which GP thought was too much all at once - so I'm going down 5mg a day and to go back up a step if it gets worse.
I don't know how you can deal with everything you've just been through but I can imagine it must be a shock! I found my much less serious admission quite a lot to get my head round because it was the first time for me and there was a lot to process, and a lot of doubt of the kind of 'wow I didn't think it was bad enough to be admitted, am sure I've been worse than that but then how did I get away with it before, am I second-guessing, how bad did they think it was?' kind of stuff - I was babbling a lot to my very patient housemate just after I got out. It was taken seriously and obviously yours was too - in fact very seriously in your case and of course you have them telling you what might have happened which must be quite hard to take on board. I wouldn't want to second-guess as I can't imagine it's easy having repeated admissions either as many people on here do, but the first time you're admitted, or like for you the first time where it gets really serious, is a lot to get your head round.
That is I suspect pretty much NO help, I think I've basically just rambled! But even though I haven't been in your shoes, just wanted to say I think I can get how it must be a lot to deal with and to say take it easy. Right after I came home my head was all over the place just from the whole unexpectedness of even a minor admission but that did get easier the next day; you might take longer with all the extra things but hopefully it will be easier to deal with after the first day or two, and perhaps after you've spoken to your GP and cons about how to avoid something happening again at this level - I find having something practical in place helps.
I'll stop now...really not making sense! But crossing fingers this doesn't happen again for you.
I had my first admission in the beginning of may. I was also really weirded out that things had gotten to the point that my GP felt safer with me on hospital grounds than at home.
When I got home, I was breathing a lot better and had some of the best days in nearly eight months! However, I also was really wiped out and tired for the first few days home.
My only advice: listen to your body and give yourself permission to rest.
Crossing fingers for you Laura - hope you're on your way home! Definitely take it easy once you get there though.
Thanks Philomela, been home a couple of hours. Not fit to do anything at all mind, so going to be forced to take it easy. As I was (stubbornly) walking to the car I was really struggling and actually sat in there, puffed on my reliever for a while and genuinely wondered whether I was being stupid!! LOL
Laura
Sound like everything is doing it's job from your other post and I hope you manage to escape today with ABGs! Make sure you take it easy though! I know what you mean about feeling strange - when I had severe attacks and was in hospital, I found that it was a few days after when the real strangeness began. I suppose when you are really poorly you don't have time to think about it and then when you feel better you notice (if that makes any sense). I also found this with moderate attacks - when I was at secondary school, my care plan said I could carry on with the day after these if breathing better but I found I just felt odd after and usually went home(the teachers probably thought this was just as excuse!)
Thanks Kayla - the meds I have been on have done a good job!! Unfortunately my argument for not going back up on the pred last week though has not come to anything though 12 hours after that discussion I had been given IV hydrocortisone and put back upto 40mg pred with a view of tapering to 20mg reducing by 5mg every 7 days .... hmmmm.
What both you and Philomela have said about processing this in your own words makes so much sense. Kayla - On Thursday it was all I could do to let them stick IVs and do ABGs etc without going into meltdown, but I was told that if I didn't I would end up needing to be tubed. At the time I just gave them my hand, but looking back now how close that possibility was is scary. Do not like to think that I was so ill! LOL at teachers thinking you were skiving!!! I am NOT going into work yet again tomorrow ... really really feel for my kids soo unfair that in their last term their teacher is off so often.
I don't know how you can deal with everything you've just been through but I can imagine it must be a shock! I found my much less serious admission quite a lot to get my head round because it was the first time for me and there was a lot to process, and a lot of doubt of the kind of 'wow I didn't think it was bad enough to be admitted, am sure I've been worse than that but then how did I get away with it before, am I second-guessing, how bad did they think it was?' kind of stuff - I was babbling a lot to my very patient housemate just after I got out. It was taken seriously and obviously yours was too - in fact very seriously in your case and of course you have them telling you what might have happened which must be quite hard to take on board. I wouldn't want to second-guess as I can't imagine it's easy having repeated admissions either as many people on here do, but the first time you're admitted, or like for you the first time where it gets really serious, is a lot to get your head round. .
Yeah, I think its a difficult thing for anyone to process tbh. This is the first proper admission I have had, but realising now how many times I should have been admitted and just stayed at home struggling. But wont do that again, if I had done this time, things would have been much worse - when I spoke to the ITU team, I was told that I wouldn't have got to the hospital in time via ambo if I had crashed at home. I wont be at silly next time, I like being alive LOL, my asthma is just a flippin inconvenience!!
Your team sound pretty good when then came to personalising your experience especially regarding the pred
That is I suspect pretty much NO help, I think I've basically just rambled! But even though I haven't been in your shoes, just wanted to say I think I can get how it must be a lot to deal with and to say take it easy. Right after I came home my head was all over the place just from the whole unexpectedness of even a minor admission but that did get easier the next day; you might take longer with all the extra things but hopefully it will be easier to deal with after the first day or two, and perhaps after you've spoken to your GP and cons about how to avoid something happening again at this level - I find having something practical in place helps.
I'll stop now...really not making sense! But crossing fingers this doesn't happen again for you.
You've been amazingly helpful its good to hear of others experiences!! And while all our experiences are different, we can learn from one anothers
I have had to take ALOT of reliever, but not enough in one go to need readmitting. But then even today in hospital needed nebs. Glad they have discharged me (after pretty much begging and promising I was ok!!) but probably feel safer in hosp. But I am upto nothing at the min. PF was top of yellow when I was discharged, now between 60-80%, its going to take a while to recover I think.
I am going to be quiet now and concentrate on relaxing and staying stable. My GP knows the score from my discharge letter and will decide tomorrow if I am still ok to be at home.
I will say yet again though, I really hate ABGs with a passion .... they didn't do them before discharge ... yay what is the normal range of CO2, O2, pH etc? I was told that I was ""very ill"" going by my ABGs but can't now remember what was said. I think I will probably phone AUK tomorrow and ask for some clarification, they are awesoms and hopefully might help process all of this *Brain Fried*
Thanks for the support and sorry for again whinging
Laura x
I think you're fully allowed to ramble/whinge/moan after that experience - sounds massively scary! While my asthma is not as bad as yours my experience has also made me wonder, as I compare it against other flares, whether there have been previous occasions when I should have done something. It's hard for me to know how bad this one was considered to be with all the suspected PE stuff on top, but it does make me stop and think about previous episodes and what to do in the future. Never nice being brought short against your own limitations and scary realisations.... glad I could help talking about my experiences!
I hope GP is helpful and defo like you say take it very very easy - basically would suggest duvet day tomorrow, and don't try to work (if you even managed any, my bet would be you'd have to redo it - I tried to work when bad in Feb and it just created more work!) Glad you didn't have to have more ABGs though - I lucklly missed out on that experience though from your other post the dr who did them sounds amazing.
Glad you managed to escape and i hope you are feeling pretty well, or at least well enough that you feel safe at home. I always find it makes me a bit nervous when i just get home from hospital, esp if i've been more ill than usual (i've never been on ICU but have been on HDU and that was bad enough) as i feel like as much as i dont want to be in hospital, i know that there things are much less likely to go wrong. I also think there is an element of letting go of control. You no longer need to worry about whether you need to ring 999, or when to take meds, or when to eat or sleep, its all sorted and decided for you and as frustrating that can be at the time, it also means you can relax. I often feel a bit strange for a day or so after i've been discharged, especially if its a longer/worse one! Its completely normal to feel a bit odd. If i were you, i'd ring up GP in the morning for a chat, or a nurse that you get on well with, and ask if they have a little bit of time just to listen to your random musings. This has become a 'routine' part of my care now, my nurse always rings me the day i get discharged and we either chat on the phone or if i'm well enough (or still in taxi from hosp) i'll wander down to the surgery and we just have a 20min chat, (she deals with people who ring up and want a same day telephone assessment so often by the afternoon she has time on her hands) and just 'debrief'. I find it reassuring, we talk about things that made me nervous during the admission, little niggling worries, even just ""OMG, there was this patient who did X, Y, and Z and i cannot for the life of me work out what was going on - it was really weird"" and whilst clinically she is probably not doing an awful lot of good, i found that i cope much much better after discharge if i've had that little bit of time to rant and feel like someone knows where i'm coming from - just a suggestion, it works well for me.
ABGs are bad, but not all are as bad as others, the guidelines do state to give a local anasthetic, some who are confident just go for it, but if you get one that starts digging around it micght be worth asking for one (its sometimes less painful without if they are good). Well done on coping with IVs, did you have the cannula in your elbow? I personally find an awful lot of benefit from magnesium, i know others who don't, personally i bounce back really well from it. I have been assesed by ICU cons before and told that i may well be heading up there and after Mg everything is heading back to normal! Annoyingly my cons in lancaster doesnt believe in it - thank goodness he's not in A&E, he'd give aminophylinne much more readily, and whilst i do benefit from that, its much slower!!
ABGs-wise, i dont remember the specific ranges, and i assume you dont remember the actual numbers either. I have found (and people - please correct me if i'm wrong) that they are less worried about low oxygen levels unless im on 15l through non-re-breathe as they can correct that quite easily. Its the co2 or pH that they *seem* more concerned about. I think in a 'normal' asthma attack co2 will be low as your resp rate will be high meaning you get rid of more co2, in Bradford A&E, they were worried when my co2 was within normal range, but near the top, and according to guidelines 'normal' co2 is actually a bad sign in an asthma attack. High co2 or high (i think i got that the right way round) is a really bad sign in an asthmatic, and thats when they have to worry about ventilating and stuff more. I have far less experience with low o2 as my co2 tends to go waay before my o2 levels do so i suspect they also worry about very/persistantly low o2 also, but i know the only symptom listed in the BTS criteria for a ""near-fatal"" attack is high co2. Hope this is clear and correct - if im worng anyone, please correct me
I hope you are feeling a lot better now, i suspect after such a recent scare you will be sensible if you do need to go back in. Would having a bag packed and ready help psychologically with the impact of having to go back? I know i find if i have stuff ready then i am less reluctant to call 999 as then at least i know im not going to be trapped.
Also - if going to GP tommoz it might help to take your copy of the discharge letter with you, i find that it sometimes takes them a while to come through!
good luck! feel better soon xxxxx
Beth (sorry I missed your post til now!!), Philomela and Soph - thank you soo much for replying please bear with my rambling (brain is not working now) lol.
Beth - its bizarre when they feel you need to go in, especially when you've never been admitted before - this has been my first time. it was obviously the right time though as during my time there I needed to spend time in intensive care - not long though, and never lost consciousness. Though there was a point they said where it was coming to the point of needing to be intubated. Thankfully this did not happen. I got home this evening, and it is really strange, feel exhausted, but cant wind down. PF still very variable and needing a lot of reliever. I am not convinced it was right for me to come home BUT I literally begged the cons to allow me out. He was awesome and I can go straight back to the MAU if necessary - hope to stay stable enough until I see my GP tomorrow.
Philomela - Duvet day is deffo on the cards, I cant walk upstairs without it feeling like mt Everest! I don't plan on doing anything except going to my GP apt and sofa surfing - think its going to take some recovering from. Is your most recent flare not the worse you've had? I have had ""slow burns"" and ""acutes"" before (by my own definition) - but then this is expected with the brittle diagnosis I have. However a severe acute on top of a slow burn made things very dangerous and I think I now have a lot more respect for what could happen. I will have a good chat with my GP who is awesome! The ABGs could have been worse, but still wouldn't want to have them done again!!
Soph - thank you so much for your post, you've really helped and made me think. I wonder what you think of m y thoughts?! lol. Firstly I always thought it was ITU not ICU lol ... but that's unfortunately where I ended up, however briefly, thankfully didn't need to be intubated, though was apparently very close. This was a very brief 24 hour stay before being moved to respiratory. I was mega surprised they let me out today after only 3.5 days and a ICU stay - not complaining lol.
I get what you mean about being able to let go of control. You know that the staff will look after you, I am finding in my brain scrambled frame of mind that meds is a real effort, though would never NOT take them, its helpful when the nurse gives you a plastic cup with your meds and you don't have to think about it!!
In ICU the other day, the resp cons on duty came to see me, and told me that he hoped id be stable enough to go home over the weekend (was already in the pipeline to be moved to resp), but this was on the condition that I had a GP apt on mon. I phoned with him in the room and booked an apt. My favoured GP was fully booked, but after talking to her she said she would stay after surgery at night and see me. She is awesome!! So seeing GP tomorrow. Finding this REALLY hard to process though, so will probably ring AUK tomorrow. Your asthma nurse sounds awesome can I have her?!
I don't like ABGs, although the Dr doing mine was amazing!! I have never had such a dangerous (was told it was a ""severe acute near fatal"" attack - difficult to hear) attack. My cannula was in the back of my right hand - never had magnesium sulphate before, but responded well to it! All the staff commented on how quickly I bounced back. Didn't have aminophylline.
The person (she introduced herself as Dr so and so but was some sort of cons - amazing though) who did my ABG was awesome, very reassuring doing it and then came to explain. I cant remember what the pH was, but my O2 was dangerously low and CO2 far too high. They were very worried though as through pulse oximetry that my O2 was very low on constant nasal O2+back to back 02 driven nebs. This is scary and the ""near fatal"" is taking some processing.
I will 999 it if I need to. Though nag not packed - I don't want to feel as though my asthma is controlling my life! Taken a lot of reliever, but not 2x10 emergency puffs and I am seeing GP tomorrow - I will take a copy of my discharge letter. I don't like what it says on it I feel as though I need a lot of reassurance at the min.
I was admitted to a hospital which isn't my local and my cons isn't there. I have been told to contact for an urgent follow up. is there anything I should say to his receptionist? How soon do I need to be seen? As I've said before, I will ring AUK tomorrow, needing reassurance at the min. My asthma is scaring me at the min
Thank you all!!!
Laura x
How did you cope with the cannula in?I HATE them in my hands with a passion - far too sensitive for my liking! Docs who know me avoid doing them in my hand as i go from a reasonably happy (under the circumstances) and tolerant patient to a tearful mess when i have hand cannulas - they can mess around in my elbows and the backs of my arms for as long as they like, thats not too bad as far as im concerned. I now have all my blood tests done in my hands to save my other veins as much as possible!
It may well be ITU, i always think of it as ""intensive care unit"" so put ICU - i also say A&E even though technically these days i think its meant to be ED, something to do with the fact that they have minor injuries units for accidents!?!
Well done for avoiding being tubed - imagine that to be pretty horrible! But good that they were keeping a close eye on you! Out of interest did they put you on non-re-breathe (oxygen mask with a big bag on the front) when your o2 was low? As i mentioned, my co2 tends to be *much* more of an issue than my o2, i have been on non-re-breathe, but my co2 goes up on it (well - i think it does anyway) and so i wondered how they would deal with it when they have hypoxia to deal with at the same time!
I would tell the receptionist that you have been in hosp and were told to get an urgent follow up - and that you need to speak to your cons asap. I would imagine they'd want you seen pretty fast - mine will see me within a few days if needed, although it depends how stable you are as to how quickly you need to be seen. I would be surprised if it was more than a fortnight though! Maybe thats me being optimistic though!?!
I much prefer Mg to aminophylinne - amino makes me feel sick and tachy, i know my breathing is better on it though - i actually get a decent nights sleep when im on it
You can share my asthma nurse - can't lend her out too often - she's the only thing keeping me sane I stress her out something cronic though - she often speaks to me in the morning and then will ring me a couple of times throughout the day checking im not sat at home refusing to call an ambulance! No idea what im going to do when she'son mat leave - might need to get her to come in with the baby......... lol! She's sorted me out a few times though, and somehow manages to have me somewhere on a neb, keeping an eye on me, making phonecalls to patients, seeing patients and getting docs to sign scripts - wonder if she's managed to clone herself! She knows me far too well, she puts a pulse ox on my finger and can usually guess the reading based on how quickly i pull it out of sight! lol! she ends up grabbing my fingers to hold me still in exasperation! hehehe! im such a nightmare patient!!
I really really hope you feel better soon - i suspect a big part of the process is getting your confidence back. remembering that you CAN do this - you've done it lots of times before - you survived a near fatal attack (and managed to escape fairly quickly afterwards) you do know when you need to ring an ambulance (as much as they need to tell you that you would have been in trouble if you hadnt been in - thats irrelevant - you WERE in, because you KNEW you needed to be - you CAN trust yourself to get in when you need to becuase you DID!!) You have a good cons, and hopefully with a bit of work you'll be able to get to a much higher degree of control, i dont know your medical history in its entirety but i have every reason to suspect there is loads out there that you can try that will make a difference to your quality of life, and with time will come experience so you can work out when things are not improving, get yourself in hosp faster and avoid all the scary bits as much! Might help to have a discussion (with GP or AUK) about when you're going in, and what you are doing if deteriorating - just sounding the ideas out to someone might help get your head around it - get a bit of control back!
Im very tired and feeling quite sorry for myself, so my ramblings may be a tad incoherent! hope you're fast asleep (and that i am too) good luck at GP tommoz - let us know how it goes xxx
ps. packing a bag may be less of a big deal when there is someone to get you your stuff, when i was in last week unexpectedly i ended up with no spare clothes, or PJs, or my laptop with all my TV programmes on it and no books etc - was going mad and no-one to bring me stuff!!
Hey Soph,
Thank you for your post!! Have a massive needle phobia, but I think I recognised just how ill I was had a bit of a meltdown, but they were so good with me!! Cannulas in hand HURT!! I wonder why they did put it there? Is it easier to access? They had to get it in pretty swift!
LOL I don't know whether its ITU or ICU, doesn't really matter though ... not happy that is where I ended up! It surprised me how quickly it was from me being in there to being allowed home! Not complaining though
Didn't have a non rebreathe mask, I had a nasal cannula on O2 plus oxygen driven nebs at the same time through a mask - couldn't get my head round that?! They were very concerned about gasses, I wonder if they were so low because I had been on a slow burn out for 4 days before (should have got help last Monday not left it til Thursday!)?! On a slow burn out perhaps blood gasses have *more time* to become dodgy?
I have phoned the resp cons secretary this morning who has said that she can't bring my apt forward unless on the say so of cons in hosp or my GP - discharge letter says for me to contact cons. I am seeing my GP this afternoon, so will ask her opinion and perhaps she can get onto cons? Otherwise will contact the hosp I was in and get them to contact? Argh dunno what to do, my brain is not working properly at the moment. With how I feel at the min though I think I need a follow up sooner rather than later!
I have never had aminophylline, but the Magnesium worked a treat certainly didn't take long to get me from really dangerous to on the up!
Your asthma nurse actually sounds awesome and seems to know you very well!! My surgery wont let me neb there if I'm starting, always get sent to A&E - not usually bad enough for admission - have a few nebs and am on my way!!
Thanks for your pep talk I do feel as though I've lost a lot of confidence, the ""near fatal"" description is scary!! I really hope that wherever we go next treatment wise more control is achieved - apparently us brittle uns are a right pain (according to resp cons haha!) Thank you for all your ideas
You're not rambling, you're very helpful Didn't sleep well at all last night grrr. Neither did you though by the looks of it? You still struggling?
I ended up in with nothing - didn't expect to be rushed in or kept in will go prepared next time!! Had a book but could not concentrate at all!!
Will post after GP apt, thanks again for your support Soph xxx
Glad i was of some help! I do tend to get a bit rambly when im tired. Lungs not being awful, but just being rather odd, hoping that im not getting a chest infection which frankly is the last thing i need!
Hand veins can be pretty good - mine tend to last a bit longer than my elbows but they sure do hurt! Hopefully in future you'll be in a bit less of an urgent situation and so they wont have to rush and you can vote for elbows - they let me have a say if i'm not in a hurry! Some docs just prefer to do hands though! My bit of paper withinfo about me on it specifies that i'd much rather they dug around in my elbows than did my hands - they do ignore that if they're worried about me, but tend to try to comply! Good that they were good. The thing is that it is much harder to cope when you're so busy trying to cope with not breathing!! But you've done it now - thats as bad as it gets and you managed that, so you can clearly cope. And hopefully the benefit of IV Mg will be enough of an incentive!! Did you get a stat dose of IV hydrocortisonr? that can make cannulas a bit more uncomfortable in my experience, HC isn't great for veins. When they have a drip of it i dont think its so bad, but when they just push it straight in it can be a bit brutal!
I suspect that by the end of a slow burn one you are really tired and so have less energy to keep fighting and so end up having bad sats as you cant keep forcing it as effectivly!?!
I would get GP to ring hosp and say that actually you do need to be seen asap! when is your appt meant to be? is it soon? Im sure the people who discharged you will ring and make it happen if no-one else can!
Asthma nurse is amazing needs some kind of medal for coping with me though! They are ok with nebbing me as i do often bounce back well if nebs given promptly, and also they know that often i would rather go home with nothing than go to hosp, so is suspect its better to neb me than do nothing!?!
I htink confidence will come back with time, rememeber that GPs job is to help with that side of things too - dont feel like you're wasting their time - they deal with a lot of sniffly noses in a day, someone who needs a bit of reassurance after a scary experience is not a waste of time!! Hope GP appt goes really well and that you're well and truely on the mend! xxx
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... remember that GPs job is to help with that side of things too - dont feel like you're wasting their time - they deal with a lot of sniffly noses in a day...
And, as a friend of mine keeps reminding me, old men's bums, people who don't wash enough, foot fungus and viral sore throats in patients who still demand antibiotics. Compared to all those, you're probably a highlight of their session list!
Argh no, I hope you're not getting a chest infection on top of already dodgy chest!!!
Hate cannulas with a passion and I don't think I would like them anywhere lol. My veins are normally pretty good, but on Thursday they couldn't find them very easily and ""hands are the only option"" ?! I think I underestimated how bad things had become!
What info do you carry Soph? I don't carry anything but my steroid card!! I find if you feel ill and say that it is asthma you tend to get ""well so and so has asthma and ... etc etc"" lol. The majority of people seem to think its a quick puff of the blue and all is ok!
When I was in they didn't put either the Mg or HC via drip, went straight in by syringe into cannula ... needed it pretty quickly I think - it was weird - it did feel pretty brutal, you know the Mg, does it back of your throat and other localised areas feel warm? It did with me lol, weird sensation! I will just let them do it next time though. Hugely phobic of injections.
I don't know what was worse tbh, having the cannula or the ABG done!! The person doing ABG was amazing, HATE both cannulas and ABGs.
What you say about a slow burn makes sense!! I think I do that. My cons reckons being both a singer and playing woodwind (not enough breath control to do either atm) when struggling I over compensate with other muscles and don't realise/acknowledge when things are difficult. Last week I was on a slow burn for 4 days and by the time I got help was shattered - main motivator tbh. Don't get the ""severe acute"" on top though, not happened to that degree before - think it made things quite difficult to sort out at the time!!
My next cons apt is 3 months away need it way before then! Thanks for your ideas will discuss with gp today and if need be get onto the hosp I was in!
I am hit and miss with nebs - sometimes 1 sorts me other times I need b2b to think about maintaining o2 sats. You sound like another good avoider of getting help!
My GP is awesome, just feel as though I live there! And I always get told I know more than her. Feeling out of sorts and overwhelmed at the min!
Thanks Soph! xxx
My veins disapear pretty early into attacks, i think they go and hide when you're ill, and hand ones can stay prominent for quite a while, hopefully if you get help earlier next time (but still need IVs) then they'll be able to have a go at your elbows.
I carry LOADS of info. So it has all the stuff they ask, name DOB, adress, docs adress, next of kin, medication, and then a load of info that is more specific to me. So it does say things like ""i really dislike cannulas in my hands, my elbow veins are easier to get into than they look and if that is an option it is what i would preffer"", it says the types of treatment i have had in the past, and that ive never been tubed or into ICU, i prefer HC to be given really slowly as it makes my skin kind of burn and tingle unplesantly and it mentions that, says i dont have allergies, lists triggers, my best peak flow (and says that its not an excellent measure for me) mentions i am adrenal insufficient, and that im normally tachy at about 130+ during attacks (and that ECGs have always shown sinus tachy). I keep it in my handbag and then if im struggling and cant talk it means i can just give them my bit of paper and they can deal with me! Saves a lot of talking, all the paramedics i've given it to say how useful it is and that they wish more people had them!
I have always had Mg through a drip over 10/20mins i think so not had the burning thing, i do get that if they push the HC in too quickly though - very unlesant but it doesnt last long usually!
I'm not brilliant at getting help when needed, i usually try to get away with 111 (which rarely works) as i really hate going to A&E, i'd go if the docs were consistently good, but so many are so poor at what they do that its often a huge psychological barrier to convince myself to go in and have them bully me! sigh!
sorry to hear you ended up back in! hope you're feeling a bit better today hugs! x
I think the issue with them not finding veins/needing to get straight into hands *is* because I leave it too late. I'm sure you're he same though in that sometimes you come back quickly from it and feel like a fraud or others you *really* need the help!!
I've had really mixed a&e visits and get where you're coming from. I alsays ring 111 - did that mon who sent ambo. They were good(ish) in a&e, but felt a bit like I was wasting their time in the ambo ""you dont tick the boxes"" (then i showed my cons letter and discharge letter - they then promptly put on the blue lights!). They were better when I got onto the ward. I think I will follow your advice and write down what can happen with me in an attack. Because lack of wheeze confuses them!
I had both Mg and HC via iv, but both of them were pushed in via syringe rather than drip.
I think I ended up back in because I wasn't ready to come out on sun - the cons/dr gave me the choice. My own did yday though too, stubbornness made me say I'll go home, but tbh I don't think I'm ready to be at home at the min, though hoping to stay out. Cons apt in 2 weeks (brought forwards), so going to try to manage at home and ring asthma nurse tomorrow/fri. Hopefully sofa surfing and rubbish films will keep all ok!
Cheers for hugs and sympathy soph lungs really need to get a grip and give me a break!
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12 hours after that discussion I had been given IV hydrocortisone and put back upto 40mg pred with a view of tapering to 20mg reducing by 5mg every 7 days .... hmmmm.
had a bit of a meltdown, but they were so good with me!! Cannulas in hand HURT!! I wonder why they did put it there? Is it easier to access? They had to get it in pretty swift!
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