Do you have a "rescue pack" (steroids... - Lung Conditions C...

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Do you have a "rescue pack" (steroids & antibiotics) at home ready to use when you feel the start of a flare up of your condition?

MarkPilling profile imageMarkPilling594 Voters

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99 Replies

I keep Doxy in my medicine cupboard. I'm currently on long term steroids for another condition, so don't keep them in although when I land up in hospital, they increase the dose I'm on.

stone-UK profile image
stone-UK

Hi

Just started on ABs and one dose of steroids 20 mg. just using ABs until end 7 days.

Although breathing improved, cough and mucus still bad.

I don't normally have a mucus problem, so I suspect viral infection which will have to run its course upto to ten days.

The ABs are to stop any secondary infection joining in.

PollyP profile image
PollyP

The GP told me he wants to discuss with me before I start to use the rescue pack I have, but I don't usually do that because I am happy to use on my own ( after having this diagnosis for 11 years ) He is a GP new to me 2 and 1/2 years ago, tho would hate to upset him cos he is quite good :-)

Yes just started mine today

Barrington profile image
Barrington

Hi everyone, first time I've posted anything on here, didn't know anything about keeping a rescue pack at home, do you just ask your doctor? Barry

tomconn profile image
tomconn in reply to Barrington

Hi Barrington, first time on here myself but yes just ask your doctor ;-)

velvet55 profile image
velvet55 in reply to Barrington

Hello Barrington

Welcome

Most of us on here have ABs and steroids for an emergency, ask your GP

Velvet xx

barryg profile image
barryg in reply to Barrington

yes or your local respritory team

barry

paula66 profile image
paula66 in reply to Barrington

Yes your doctor should give you one.

in reply to Barrington

My copd nurse suggested it to me, but my doctor didn't. x

Mollysdad profile image
Mollysdad in reply to Barrington

Of course you must ask. I would have thought your COPD nurse or GP would have offered a package. Good luck.

Mags1953 profile image
Mags1953 in reply to Barrington

Hi Barrington.. Yes just ask your doctor.. I was so I'll this time last year I had to be admitted to hospital. That's when my doctor gave me the'rescue pack'.

Waiting for docs report

jolaine75 profile image
jolaine75

How do obtain a Rescue Pack

email removed by moderator

Polly4acre profile image
Polly4acre

I asked about one at my surgery and the Pulmonary Nurse told me it was not necessary, asked what stage of COPD I was and she said it was not helpful to know, just go by how you are feeling.Polly4acre

O2Trees profile image
O2Trees in reply to Polly4acre

That is unbelievably patronising and infantilising Polly - you are not a child. You asked and you have a right to know. That kind of attitude makes me furious. Don't accept it - I always ask for a copy of my lung function test results to which you're also entitled. If you have your own copy you can ask questions here, and even better call up the BLF helpline whose nurses are well informed, friendly, will talk you through what you ask, and will not treat you like your pulmonary nurse has done. 03000 030 555 office hours.

Current thinking is that doctors and other healthcare practitioners work with patients with long term conditions as PARTNERS. These conditions present differently in each person who has them, and you are the expert as to how your condition is affecting you. Don't be intimidated and stand your ground. Take someone with you for back up.

Good luck! :)

markchambersuk profile image
markchambersuk in reply to O2Trees

im suffering the exact same treatment from numerous "health/social care professionals" since my younger brother died on 01/09/15 from a massive stroke & following heart attacks & further strokes aged just 43 yrs with 6 kids under 17 !!! .

he collapsed in Boston hospital linconshire in A & E waiting room on 27/08/15 BEFORE he had been triaged ....... he had sat there waiting for approx 2 hrs @ a&e :( ........ it was then "too late" for them to "intervene" at any point apparently, only provided oxygen & pain relief the whole time for my poor bruv until he died 6 nights later :( .........i still cant quite take it all in to be honest ........

this "treatment" is killing people on a daily basis, in numbers probably in the 1000's ....... everyday ......

with more to come for sure with that Mr SCAMERON and his master plan of saving millions by denial of services leading to either death of patient or cash saving in short term but massive future spend when things worsen !!!

O2Trees profile image
O2Trees in reply to markchambersuk

Im so sorry to hear about your brother Mark - devastating.

LADYOFLETTERS profile image
LADYOFLETTERS in reply to markchambersuk

I FEEL YOUR PAIN WE LOST OUR YOUNGEST BROTHER AND MY BEST FRIEND AGED 42 IN 2012, I WAS ON THE PHONE TO HIM TEN MINUTES BEFORE HE SUFFERED A MASSIVE HEART ATTACK AND SADLY WE COULDN'T GET IN THE HOUSE TO TRY HELP, THE POLICE HAD TO BREAK DOWN THE DOOR X

markchambersuk profile image
markchambersuk in reply to LADYOFLETTERS

omg hun, i am truly so sorry for your loss....... in such terrible circumstances ....... and to anyone else who has suffered any similar fate my condolences, its actually scary how many people seem to be going through very similar circumstances within their family etc, truly terrified me it has, but that fear has now mainly turned to determination that i have a new purpose in life, I HAVE TO HELP ANYONE SUFFERING A SIMILAR FATE.

i currently use my work learnt engineering problem solving tools & transfer them on to my own personal issues to work through every single issue i have, one by one until resolution. with 20 yrs in process based problem resolution within automotive engineering design & development roles (EDS/WIRING) I have these skills & i plan to offer this them to any one else & any issues that they need help with.........basically, to keep them alive !! (before the NHS kills them!!),

i will get them properly assessed for all needs (medical/housing/benefits/debt/divorce etc) and "buddy" them through each & every step of each issue until im happy that they are happy & all issues are resolved to their satisfaction !! well..... thats my new long term plan after retraining hopefully :)

ultimately though......this whole disgraceful business has completely shattered my deep and previously unshakable love/respect/trust & above all confidence in our NHS .........

that shift has been forced upon me by this governments underhanded restructuring of the NHS & its systems/processes which ironically are supposed to be in place to support people in all circumstances when their physical/mental health is identified as requiring intervention/support.

1000's must be dying each year, if not 10's of thousands ....... i cant bear thinking about it to much i really cant cuz i'll be next

in my brother case over 6 months before he collapse in A & E waiting room before even a basic examination or ecg/scan was thought necessary. he did not wake again after that, he didnt stand a chance

:(

Mollysdad profile image
Mollysdad in reply to O2Trees

Spot on. !

papageno profile image
papageno in reply to O2Trees

O2Trees

Good post! No good health care without partnership and reciprocity between Health Care professional (HCP) and patient! It is vital that patients are given copies of test results to take home, read and reflect upon, take to pharmacist or other professional for clarification etc... As for back up ABx and steroids, this too needs to be fully discussed with HCP to avoid misuse of antibiotics. In many patients suffering from respiratory condition flare up, there is always a crunch time when symptoms really get bad and when it is very tempting indeed to reach for the antibiotics in the medicine cabinet... The patient needs to define his/her indicators as well to differentiate between flare up which does not require ABx and exacerbations which do.

Dugy profile image
Dugy in reply to papageno

I seem to do well on the health care where I live. keep 2 weeks supply of a.b.s and steroids. only delays have been on oxygen assessment (originally) but now much better. I don't think I can complain .

talking crunch times for problems, lucky old me , mostly mid week and no problems so far, 12+ years.

Dugy.

edwardo profile image
edwardo in reply to Polly4acre

Sounds like your getting real high quality support from your respiratory team!!!!

Jeanjt profile image
Jeanjt in reply to Polly4acre

Sounds just like mine

dwitt profile image
dwitt

I can't take steroids. I have Xopenex HFX and haven't used it in years. I take daily Spiriva & Advair Disc 250/50

in reply to dwitt

And, Steroids are the first thing doctors want to give you when you have a COPD flareup.

I can't take steroids either as they cause troubles with my breathing. I have Xopenex HFX and take Spiriva and 500/50 Advair Discus (twice a day).

I am told it is unusual for the steroids to cause troubles breathing. Albuterol does the same thing.

My pulmonologist asked if I would like a rescue pack of azithromycin (Z-Pack) for if I need it over the weekend when doctors are not available. So I have a couple packs.

ldwilliams profile image
ldwilliams

My GP told me to ask for them as soon as i have used the current one.

As he does Not want me to go to the surgery unnecessary

Do Have to get past whoever answers the phone when iIcall and ask for a repea, as we aren't supposed to do repeats over the phone, but once iIexplain they have all been fine and my request for AB has always been agreed

Already on steroids anyway

LADYOFLETTERS profile image
LADYOFLETTERS in reply to ldwilliams

CAN YOU NOT APPLY FOR REPEATS ONLINE AS I DO AND IT GOES STRAIGHT ELECTRONICALLY TO THE CHEMIST, WHO DELIVER THEM THE SAME DAY X

in reply to LADYOFLETTERS

That's a very good system wish my doctors was like that

Dugy profile image
Dugy in reply to

I thought all health centres were switching to that system.

Dugy

in reply to Dugy

Not at my doctor yet. I ask at my chemist they request a repeat from my doctor and the chemist text me when it is ready I live in Scotland

ladytelita profile image
ladytelita in reply to LADYOFLETTERS

Great system you have. I have to wait three working days for repeats and then dash to the surgery over 8 miles away during its opening hours. It's a country branch from a main surgery based over twenty miles away and they have been known to forget to bring it to the closer branch in the past.

We have a different GP available on each week day with only 2-2 & a half hours worth of slots for each of them and only for mornings. The surgery is open only three afternoons from 2.30 for a few hours and only a nurse is available in that time. I dread the day I need them urgently.

P.

in reply to ldwilliams

I have all my prescritions on repeat through my chemists. I just go in and order from them. As soon as I have run out of my rescue pack I order some more through them too. x

Sheilab123 profile image
Sheilab123

A definate yes

Jjude profile image
Jjude

Never been offered a rescue pack and wouldn't know if I needed one. Don't know what a flare up is.

Jjude

in reply to Jjude

A flare up is when your coughing more than usual and bringing up a lot of mucus and your breathing is worse

rusty4ever profile image
rusty4ever

only because i asked for one for over the holiday period in case

gireneg profile image
gireneg

my previous doctors refused to give me one yet at the same time handed me information about the rescue pack. it could have saved me from having a flare up had I had one at home. Thumbs up to my new doctor

ank92 profile image
ank92

Only learned about rescue meds at pulmonary rehabilitation as quite a lot of the group had them so I asked my g p and he gave them to me straight away and I just have to order again when I first start to use them. They really do help when I get a flare up .

Lyd12 profile image
Lyd12

Just antibiotics

lejaya profile image
lejaya

I have rescue antibiotics at home but not pred

Shirat1 profile image
Shirat1

Being from USA I'm not sure they do that here but it sure would help to avoid a full blown flare up. Especially for those of us that have dealt with it long enough to decern the signals!!

I'm stage 4 but they seem to avoid abs until you are well into an illness.

June24 profile image
June24

Find it hard to get them of Doctor I am copd

bonniemillie12 profile image
bonniemillie12

yes started mine today feel really rough today

stone-UK profile image
stone-UK

Hi

Aswellas a rescue pack you should also have management plan which explains what to take and when and at what point you need to dial 999.

Which is usually the third stage of worsening of you symptoms .

sheila1kerry profile image
sheila1kerry in reply to stone-UK

Sorry to sound ignorant but what is the third stage of symptoms worsening? This is like a new language to me.

stone-UK profile image
stone-UK in reply to sheila1kerry

Hi

As we are all different.

From your normal, first you would try using your blue inhaler up to the maximum to control your breathing.

If getting worse still you would start your steroids 4/6 tablets once a day.

If it still continues to worsen you would need to consider calling a Ambulance. At this time you have difficulty in completing a sentence.

With mucus you start your ABs as soon as there is increase in the change of colour.

You may also have sputum sample tubs to send to GP for testing.

I don't have huge mucus problem, so not sure of procedure.

Pentreath profile image
PentreathVolunteer

I have steroids and antibiotics two weeks at home. I have bronchiectasis and asthma. GP said to start them straightaway if anything kicks off and to take a sputum sample to the surgery asap. They fit me in the same day to listen to my chest and take other tests. Can't fault them and it helps a lot to know that they are so caring and responsive. Am now on a second round after flare up nearly three weeks ago.

Claudine profile image
Claudine

Don't have steroids in rescue pack, just in my inhaler. But do have amoxycillin. Used to have Cipro but doc changed it because my last one expired! He said that amoxycillin would be better to start with and then if it doesn't work, I could get something else from him to try. I thought this was probably because of recent publicity about antibio resistance. Cipro is rather 'heavy duty' but that has done the job in the past.

Toci profile image
Toci

I have them but had to fight for them, and then had to argue that Amoxicillin was not suitable because flare ups were taking months of increasing strength antibiotics to settle. Now keep Doxycycline in.

Gp does not believe in them. He would rather you make an emergency appointment to get a script.

O2Trees profile image
O2Trees in reply to

So what happens at the weekend?!

in reply to O2Trees

I don't think you are supposed to get sick at the weekend. Last time (3 weeks ago) ambulance to A&E with four days in hospital. His answer was 'oh well, that was unlucky. You should have come sooner'.

I will ask the consultant in January.

sheila1kerry profile image
sheila1kerry in reply to O2Trees

Exactly! Also there are times when the gp is fully booked- what then if no rescue pack!

in reply to

Yeah, well that doesn't help you on weekends when you cannot get a doctor! He just wants extra money for you to come in, and at the cost of you becoming emergency sick. You need a good doctor who treats you right.

naresh62 profile image
naresh62

Have rescue pack,fourth day of first winter flare up feeling rather poorly naresh62

Arka10 profile image
Arka10

I have had a rescue pack for several years and it has. Kept me out of hospital several times, weekends and night times are the most popular times that problems arise so the ability to deal with the problem is very useful. Hope this helps.

in reply to Arka10

Ditto!

christyne profile image
christyne

What a good idea.

vectisboy profile image
vectisboy

Always the same never got them when most needed. Hi to all

James48 profile image
James48

I have resident pseudonomas and have Amoxycillin and prednisoline on standby for flare up.

sheila1kerry profile image
sheila1kerry in reply to James48

What are pseudonomas? I noticed this on other posts but had never heard this term before.

James48 profile image
James48 in reply to sheila1kerry

Hi Sheila, Pseudomonas is a common bacteria that can infect the lungs. Infections from this bacteria are more often associated with long term, chronic lung conditions such as bronchiectasis, cystic fibrosis and COPD. Far as I can tell, there doesn't seem to be a rule about who gets it. It can be acquired in hospitals. In nature, it lives in damp soil.

It is very difficult to get rid of and often nebulised antibiotics for months is the only way to treat it. For some people, once it's in the lungs, it stays there, this is called colonisation. It might be got rid of but it usually comes back at some point for people who are colonised by it.

There are some folk on this site who know a lot more about it than me,

James

friendly profile image
friendly

its only in the last four years that they let me have antibiotics as a rescue pack, the other sixty years i had to see the doctor all the time, but in them days you could just walk in to the surgery any day and any time.

Janettem profile image
Janettem

Nothing at home have to attempt a Dr's appointment which could be a few weeks.

sheila1kerry profile image
sheila1kerry in reply to Janettem

That sounds very unfair!

O2Trees profile image
O2Trees

Yes, Co-amoxiclav and Prednisolone. I phone the surgery to check whether to take them in the week.

But inevitably most flare-ups start after works hours or at weekends. Then i go by my knowledge and experience of previous flare-ups, and let my GP and respiratory nurse know as soon as i can that i've started them. Both of them have been through the signs and symptoms which mean i should start them.

FarmerD profile image
FarmerD

My problem with the rescue pack,I kept using it only to find out I probably did,nt have an infection.Also GP,s are not sure if it,s an infection either,they have to do a blood test to be sure.D.

DGro profile image
DGro

I know it's a fine line but we should make sure that we have a bacterial infection before starting antibiotics as they will not work on a viral infection ,we don't want to be taking meds we don't need and I know of some people that are now antibiotic resistant ,I have a rescue pack but keep mine for emergency use only ,although I have learned to recognise the signs of the different infections I still like to see my doctor first and always leave a mucus sample for testing ...

papageno profile image
papageno in reply to DGro

DGro, you are absolutely right. Rescue packs are for bacterial emergencies, not viral infections. By the way, it isn't people who are resistant, but germs, these very clever bacteria which have learnt how to resist anti infective medication, because our use of antibiotics is so abusive.

barryg profile image
barryg

JUST FINISHED AN ATTACK ALL OK GOT ANOTHER RESCUE PACK

Barry Gray

babbo45 profile image
babbo45

I use a steroidal preventer and nasal spray each day so unless things get worse I don't require any extra. As to the antibiotics my doctor prefers to check every time things tighten up and then prescribe them. I did take an emergency rescue pack of antibiotics on my trip to Japan last year, thankfully they weren't needed. After my present bout I think I'll ask for a script so as to be ready for my New Year holiday though she is reluctant to prescribe unless there is an infection in my lungs. It is a good idea to have a rescue pack though.

babbo45

Jaysha profile image
Jaysha

I have had one for a while. It saves time as normally i would have had to make a appointment at my doctors which is never easy. Life saver to me

jojam profile image
jojam

I have Clarithromycin & Prednisolone so I can manage my condition. I have them on repeat prescription so I can reorder as soon as I start taking them, I reorder online so do not need to phone surgery.. I have had 'stand by / rescue pack' for the past 6 years. I only use them when needed but it has kept me out of hospital since 2009 I have severe COPD.

Hi. I hadn't heard of one. I ring the doctor who then leaves a prescription for me . Weekends are a problem though so I will think about asking. Thanks guys.

James48 profile image
James48

I wish people in their profiles would say what illness they have and if it is COPD, how long they've had it and what stage they are.

It would help us all when asking and replying to questions. They can still remain anonymous. Cheers :)

papageno profile image
papageno in reply to James48

Good point sirjames!! Indeed, it would help make the discussions more insightful. Let's do it!

katieoxo60 profile image
katieoxo60 in reply to James48

Hi sirjames, I agree with you. My Profile shows COPD but no more than that as I am not staged. I was diagnosed in 2009 and further confirmed in 2011. I have to ring the doctors when there is a flare up and go to see them for a rescue pack which sometimes results in delay of treatment. :)

James48 profile image
James48 in reply to katieoxo60

Hi Katie, you don't have an astma or bronchitis element of your COPD - only emphysema? I understand COPD is emphysema and asthma/bronchitis. It is an umberalla term covering a combination of lung conditions. :)

katieoxo60 profile image
katieoxo60 in reply to James48

Yes I do have an Asthma / Bronchitis history plus Empyhsema on last visit to my local hospital. In 2009 I was diagnosed as Asthma/ COPD, in 2011 I was diagnosed confirmed at Leicester Glenfield unit as COPD . Oh and sirjames I have a family history of Asthma,but none of that is in my profile is it? Because it is personal, but not a secret as it is all confirmed in writing by the medics, including a top professor. As I understand it COPD is bronchitis & Emphysema not an umbrella name for all breathing & chest complaints and does not technically include Asthma. My sister is severe Asthmatic but she does not have COPD and her lungs are in good condition for her age & illness. This reply is a little off topic as we were discussing profile info issues, not personal histories. But now you have my picture & larger profile :) :) speak again soon

Offcut profile image
Offcut

My old doctors did and they were a great help as I could get straight onto fighting the infection. But when we moved 2002 and had to change doctors they refused to even consider the option and said I have to see them first before they give me anything!

I have had more hospital admissions for lung problems since the move and a major ICU lung failure in 2008?

Be Well

RabMac profile image
RabMac

Never knew such a thing existed

hurries profile image
hurries

Only just received a home pack. Visited doc. about eyes and he found blocked lung! I have Sjogrens Syndrome as well so sadly have lots of health problems. My lovely doctor suggested a pack for emergency use.

jamesbanville profile image
jamesbanville

I ant got not nufin and i gets bad cof an cold an chest pane in my chest so I fink i need sumfink to make me beter.

dava profile image
dava

Yes I have a rescue pack had it a long time now but find I'm a lot better since using the salt solution in my nebuliser 1 a day,

letys profile image
letys

My GP would allow me to have a pack if I asked but would prefer to see me. I am fortunate in that the doctors in my Surgery are accessible during the week if I have a problem.

LADYOFLETTERS profile image
LADYOFLETTERS

I WAS RECENTLY ADMITTED TO HOSPITAL WITH EFFECTIVE COPD I THOUGHT I WAS GOING TO DIE AS I COULDN'T BREATHE, SO I HIT 999 THE PARAMEDICS ASKED IF I HAD A RESCUE PACK I SAID NO AS I'D NVER HEARD OF ONE , WHEN IN HOSPITAL I WAS ASKED AGAIN BY THE CONSULTANT WHO TOLD ME WHAT IT WAS, NEEDLESS TO SAY I NOW HAVE BOTH ON REPEAT AND A VERY GOOD CHEMIST , TOUCH WOOD I AM NEVER IN THE SAME SITUATION AGAIN.

dwitt profile image
dwitt

Steroids would inflame my Type 2 to have blood readings well above 600

Grast61 profile image
Grast61

Co-amoxiclav 500/125, 3x daily for 7 days, prednisolone 40mg 7 days worth and for good measure in the box is ventolin, phyllocontin spiriva and in the fridge fostair that is all in my rescue pack. I last about 18hrs with no meds before I get to the point of calling an ambulance

clematis5932 profile image
clematis5932

I have prednisolone and anti biotics plus a box of ventolin capsules. I also have an action plan plus telephone numbers of out of hours respiratory nurses. Consultant always asks if I have rescue pack as does Doctor and respiratory nurses. The Doctor has explained to my husband what signs to look out for before I start to take them if unsure phone either nurses or doctor if out of hours do not wait take them.

Colours23 profile image
Colours23

I phoned and asked for it the other day, and they sent a nurse to check me over, because I did not have an infection that day, she left without giving me anything, they don't trust me as I have been known to take steroids to get out the house as lack of oxygen that they still say I don't need it, well I have bought my own oxygen,now I can get out I will be visiting docs to try to get some. They want to keep me out of hospital but won't give me the meds to do it. They can't have it both ways so it will be 111 if they do not respond to me I'm fed up with them!

Lassell profile image
Lassell

Our surgery will not allow me to have them

Jeanjt profile image
Jeanjt

No my doctors are rubbish no meds in case of emergency no follow up appointments for my copd nothing absolute waste of time

ladytelita profile image
ladytelita

I wish they would give me that option as I tend to leave GP visits as long as possible or unable to see my GP for a long period. I was put back on steroids and antibiotics last Friday under strict orders to contact them or out of hours if I'm not completely better once the course is done. That's Xmas day! 😑

It's a big concern around this time of year since, since from around October time, my breathing is permanently accompanied by rattley noise on exhaling and frequently squeaking. My cough always sounds full of yuck. *sigh*

Not convinced they would give me a rescue pack tbh.

P.

in reply to ladytelita

I was only put on rescue packs last year when I kept getting one exacerbation after another. But everyone with COPD should have rescue packs it would save the doctors a lot of time. We know our own body's and know when to start them.

Joy123 profile image
Joy123

Yes I do.,

veganista profile image
veganista

Yesterday I voted no but this morning I went to the dr and he's started me on prednisone rescu pack and antibiotics. So yes not no

MELNEL profile image
MELNEL

I know I should ask for steroids for self management. I had done it last year and had a pack and used those in January this year.

I had some infection this year not because of my COPD and got some antibiotics. But somehow I have problems with most of them, there make me wheezing like a piggy pipes. And I know when I have a infection in my lungs they give me antibiotics and steroids.....

And I know if I would ask for it they would not give me any. Most of the time I need an appointment to see a doctor and it's very hard to get an appointment. And what really annoying is that I most get always a new doctor, that I need to start all over again on explaining...not easy really!!