could i ask for some advice please off you lovely people regarding rescue packs? i have bronchiectasis and asthma. my rescue pack is coming up to its expiry date so i'll request another from doctors. i had such a chew on the last time to get the doctor to even agree to give me a rescue pack in the first place and even then, she would only give me the antibiotics and not the steroids. she insisted i'd need to bring in a sample before i could be allowed the steroids (prednisolone) but that could mean a delay of a few days before i start getting the right treatment. the ONLY time i've had an exacerbation and wasn't given steroids too was by the hospital and i went downhill really quickly. i struggle to produce anything to sample so how can i persuade my doctors that it's in MY best interests, not THEIRS, that i be given steroids and antibiotics in my rescue pack? does everyone else have both?
rescue pack: could i ask for some... - Lung Conditions C...
rescue pack
Make an official complaint to the practice manager. If that fails complain to the nhs trust for your area. Your doctor should take note of n.i.c.e. guidelines wether he agrees with them or not. You must have full rescue pack at home to hopefully prevent hospital admission. Exacerbation should be acted on with mini um delay.
Thank you for that. I know I won't have trouble getting the antibiotics but they've refused to give me the steroids in the past.
Yes I have both.
The fact that they are about to expire indicates that you have had them for a considerable amount of time. This shows that you have been responsible and not abused the privilege. I do not think you will have any trouble getting them renewed. Take the old ones to your pharmacist for safe disposable, do not flush them away into the drain or sewer.
Thank you. It really helps to know other people have both anti's and steroids. After the hospital prescribed anti's only and I really started struggling to breathe, I had to go to the emergency dept at the hospital; the doctor there said it's most common to prescribes steroids too because the anti's alone can lower your immunity and make you worse.
Maybe speak to your consultant or their secretary. If reccomended by them they could gmail a letter to your gp. Saying part of your rescue pack.
Thank you. Yes, that's certainly worth a try.
I am on a maintenance dose of 10 mgs prednisolone but also have a rescue pack of antibiotics and more prednisolone when needed.This has been such a blessing especially during shielding.I do hope that you can get this problem resolved quickly.
Naff lungs can have a tendency to misbehave at inopportune moments such as middle of night ,weekends ,bank holidays etc etc!
I have. Been giving 2 recuse packs as i have copd
Thank you. All this information is really helpful.
Thank you. Yes EXACTLY! It frightens me to think I could be ill all over the weekend and have to wait days before I get the steroids when I've shown that, for me, they work best taken together.
I have a rescue pack of both antibiotic and steroids for whenever I need them. I agree about the need to send in a sample first but what my doctor has advised is that I produce a sample then start the rescue course then once they get the result of the sputum test they can change the antibiotic if needed. Plus if you have Bronchiectasis your course should be for 14 days minimum
Thank you. Yes, the problem I have is that I really struggle to produce anything, whilst still coughing myself stupid! I've been told the same really; start the rescue pack and worry about the details later, the main thing is to start taking ANY antibiotic. I just don't want to get even worse before they'll actually prescribe the steroids too.
No.. Not usually steroids but always antibiotics. The whole point of a rescue pack is to have them handy for an emergency. GP is out of order. Hope you get them soon.. X
Thank you. It's good to know some do and some don't.
Hi lilypickle1,I too have bronchiectasis and asthma as well as copd, my rescue meds are antibiotics and prednisolone and it was a struggle to get the medication with my 1st surgery as they kept refusing it but after 2 pneumonia hospital stays and a different gp never now a problem. Keep on at your doc's to see that you need them in reserve.
Thank you. Well, thank goodness you're sorted now! Such a shame that you had to suffer while they learnt a lesson! It can be such a chew sometimes and you really don't want to feel you're 'in a battle' with your doctors.
I have the same conditions as you and My rescue pack needed replacing last month and I spoke to the doctors receptionist , she said to explain this to the pharmacy. I did and they were replaced with no issues at all. Maybe try that way, at least it saves you having to deal with your doctor. If you get no joy consider contacting PALS they are really good if you are being treated unfairly; which you are, after its called a rescue pack for a reason.
Good luck, keep safe
Thank you. Oh that IS a good idea! I've recently changed my dispensing chemist to one a lot nearer to home so they don't know me as well but I'm going to try it and see what happens!
Good luck, let me know how it goes@
My gp surgery wont issue rescue packs now unless you have severe copd, we have to phone in for them, my doctor is quite good and knows me so issues them when I phone x
Thank you. It IS good that they know you but even still, it's a faff-on that you could probably do without, either going yourself to collect or having someone else around that can go for you. My surgery is RIDICULOUS; they WON'T take 'phone calls for prescriptions, it MUST be done online.
It is a faff and I did try to explain when you are not well the last thing you want to do is get dressed to collect a prescription, but this is their policy now. If your surgery wont take a call then phone at 8 and request a call to the doctor for a chest infection, that what i do now when I am poorly I cant afford to wait for the infection the take control x
I have bronch and asthma . I have both pred and abs at home at all times but never use the steroids unless I really have to . In my view they suppress immunity. This is what I do: I have rescue doxycycline (two weeks) and, like you usually have little mucus. Timing is everything so I wait until I can get a sample up, they dont need much, then get that to doc. In the meantime I start the antibiotics. My doctor phones me 5 days later IF I'm on the wrong antibiotic and prescribes the right one. That's how it works and it works well. Good luck.
Thank you. I can't remember the exact reasoning but the Dr. at the hospital said they are normally prescribed together because either the anti's can lower your immunity and the steroids bolster it, OR that the anti's treat the infection but the steroids help with the inflammation. I DO wish I could remember
Not sure that steroids are recommended for bronchiectasis alone, except inhaled ones. I have a rescue pack of doxycycline (14 days) for bronchiectasis and a resce pack of prednisolone for asthma flare ups. Both of these are on my repeat prescription list which I order on line from the surgery when needed and the pharmacy delivers them. Sounds as though I have a well organised GP practice!
Correct. The British Thoracic Society Guidelines on bronchiectasis say that there is no evidence to support the inclusion of steroids in treatment of bronchiectasis alone, but the guidelines acknowledge their use for those who suffer both asthma and bronchX.
Thank you. Maybe that's why I've always been prescribed them together? I only know that together, they work for me.
Thank you. Yes you DO, lucky you! I spent approx. 4 years telling my doctors that there was definitely something wrong and being fobbed off that 'well you've had x-rays and the good news is, your lungs are clear so there's nothing else we can do'. They weren't, and there was; a ct scan showed the bronch in my lower left lung. It was the emergency Dr who said I should INSIST on a scan and to see a consultant. Thanks to him I got a diagnosis.
yes, well, prior to being with this practice I spent 2 years like you being given 5 day courses of antibiotics and being told I didn't need a referral to hospital I seemed to be unwell most of the time. Even after I had taken myself off to see a cough specialist and he diagnosed bronchiectasis and advised I get my gp to refer for a CT scan to confirm it, my GP refused to do so. I just lost my temper and insisted.....he retired, the practice closed, CT scan confirmed diagnosis and i am under the care of the local bronchiectasis consultants. End of story.
It's brilliant when you get the right result but oh, the hassle you have to go through to get there! I'm sure my dr's thought I was some kind of hypochondriac, wasting their time. I actually felt like I was going mad; I could hear the crackling in my chest and kept getting infection after infection. And if I had a pound for every "It'll be post nasal drip, here's a spray"..... I'm so pleased you're under the umbrella care of the lung consultants now. Take care.
My rescue antibiotics recently went out of date. I have my rescue antibiotics in my repeat prescription so I requested some with a note to say they were to replace the ones out of date. All my various consultants write in their letters to my GP that I should have a 14 day course at home. If your consultant writes that the GP will have to provide them. You may find in the current situation they won’t question your request so much. Good luck.
Thank you. Yes, I don't have a problem with the anti's, just the steroids.
I've been told by a very good respiratory nurse that the NICE guidelines for bronchiectasis are: having a rescue pack of prednisoloneandantibiotics, having referral to respiratory consultant, twice yearly respiratory checks at gp surgery and sputum pots & tgd relevant form for testing. I'm sure you can check on NHS NICE guidelines on line copy and present to your gp. I would do the same but since I was told the above my newish gp (I moved towns) decided I dont have bronchiectasis so don't need any of the above . I'd fight but don't have the energy. I just hate him instead and hold on to old rescue packs (which are probably out of date too).
Good luck, hopefully your gp will see sense in this time of covid & keeping people away from surgeries and hospitals. P
NICE guidelines conflict with British Thoracic Society guidelines then if they recommend steroids as an add on treatment for non-asthmatic bronchX sufferers. But maybe I'm out of date. Perhaps one of the "sage old hands" on here who know members of the BTS commitee on bronchX can enlighten us.
So sorry that you don't have a good relationship with your GP I do hope that there is another GP within the practise you feel more comfortable with -or maybe a respiratory practice nurse?
As you know managing long term lung problems is a partnership of dodgy lungs that you know best(you live with them daily!) and the medical bods.
Good luck
Thank you. Yes, unfortunately I had to quote NICE guidelines to them before they'd agree to giving me my rescue pack! That is TERRIBLE! Does he think he's better qualified than your consultant? Please don't give up and give in! Get your consultant to write a letter to the surgery - sometimes that's the kick up the backside they need!
Bless you. Unfortunately since I moved towns it's up to this gp to refer me. It was after respiratory nurse laid down the law he decided I no longer have bronch so don't need a referral. I'll be changing gp practice as soon as things are a bit more normal. At least he's still allowed me the winter 3 x weekly antibiotic which really helps.
I was talking about exactly the same thing with a friend today. Her’s have both expired but the doctor, quite willingly, wrote a prescription for both without any question. By having them at home you’re saving yourself from going into hospital. Don’t ask, tell your GP what you want/need. Good luck.
Thank you. It makes perfect sense doesn't it, to have your rescue pack ready and waiting, in your own home? No problem with the anti's, just the steroids that they don't want to part with. What DO they think i'll do with them?
My GP has my rescue pack on auto renewal. If I have to use it (only once in past year) a replacement, including prednisolon was issued the same week.
Thank you. I THINK mine's on renewal too but only the anti's. All of you with both is great knowledge for me to take to my g.p.
