I have been using Salamol for a number of years and would normally have 3 or 4 in use at any one time (1 at work, 1 in my gym bag, 1 in the car, 1 at home) and it has never been a problem.
All of a sudden I have been getting push back from Doctors for ordering so many. In fact i was told this week that "Salamol puffers are normally ordered 3 or 4 times a year max".
I no longer have it on repeat, I need to request each time I order other items.
For the first time in my life (40+ years) I feel as though i'm not personally in control of my asthma and it is very frustrating.
Would welcome others experiences. Particularly keen to understand if the Dr's quote "Salamol puffers are normally ordered 3 or 4 times a year max" is accurate.
Thanks
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Wolfshead
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Simply restricting the amount of salamol you can order is hardly helpful and potentially could leave you with no meds when you have a nasty asthma attack
I used to use a lot of salamol, and could order what I liked. I am now restricted to four a year, but they put me on fostair 100 mart, which reduced my need for salamol, so I am OK with the restriction.
I would ask for a face to face review with an asthma nurse of your asthma meds and also a check of how you actually use your inhalers, to work out how to adjust your inhalers so you need less salamol.
Pre the meds review I would ring asthma UK on 0300 2225800, office hours, and have a chat with the asthma UK nurses to get some ideas.
Agree with Homely2, imo it’s very bad practice to limit your bronchodilators unless the gp is confident your asthma is well controlled, and if you’re needing to replace them often, it probably isn’t. What they should do is help get your asthma under better control FIRST!
Having said this, I’ve never had any problems in ordering ventolin, 2 at a time. I’m on biologics but still need to use it regularly
Lots of people recently been put in same position.i put a note at end of prescription order,stating what conditions I have+ why I need 2 a month.no further probs - I get my 2 a month.like u I have 4on the go but find 2 a month keeps me in stock,as don't all run out together
They are following NICE guidelines -Child 6–17 years
100–200 micrograms, to be taken when required for symptomatic relief, review prevention medication if salbutamol usage is 3 times a week or more, or if nocturnal symptoms occur.
If taken only 3 times a week then 6 puffs and as a normal inhaler holds approximately 200 then yes 3 or 4 a year allowing for an asthma attack (10 puffs).
If you are using your more than that then you should be making an appointment with your Gp/asthma nurse and ask for a review as it shows your preventative inhaler isn’t working properly.
I can understand your worries of not having your inhaler at various places but it should be with you at all places (shopping/sport/holidays) not just in places you sometimes are.
If you follow any of the asthma Facebook groups then this is a common concern but all GPS are just following NICE guidance and trying to make asthma treatment more effective for everyone
Just to add that there is NICE guidance for adults as well. These principles apply to adults as well as children - ie if someone is using a lot of salbutamol reliever then their asthma control and preventative medication need reviewing.
Obviously the flip side is that the GP does then need to actually review and advise on how to optimise preventive medication and reduce the need for reliever. They should follow guidance, but they're not all perfect and may not always follow it, or may misinterpret.
I have seen some people saying their GP restricts reliever but then just says 'you shouldn't need that much so don't take that much' and doesn't offer a review, instead of actually investigating why reliever usage is high and how it can be reduced.
I had the same issue a few years ago. I used to keep one at my parents (200 miles away), one and work and one at home. I was told I couldn’t do that. So yes anxiety about not forgetting an inhaler goes through the roof. I’m now down to one inhaler in my handbag and a spare at all home, because sometimes they don’t work but I did have to have a conversation with gp to convince them.
If you forget where your Salamol is, put a reminder on your mobile phone. My Salamol inhaler is in my rainproof jacket pocket. If I go out I have it with me. If I have to hand my jacket up at work, I transfer it to my trousers pocket, always putting it back in the jacket when I put it on. I rarely use that inhaler as my preventer inhaler works.
"I’m now down to one inhaler in my handbag and a spare at all home, because sometimes they don’t work"
This worries me - I often make my daughter carry two inhalers around with her in case one of them fails for whatever reason, but I always thought I am just being paranoid. Does that actually happen, that an inhaler doesn't work somehow? She used to carry epipens and with epipens you are told to always carry two.
I get through 1 or 2 Ventolin Accuhalers a year, that's about 60 to 120 doses. As a female, I just keep it in my handbag and that goes everywhere with me. Otherwise, it would be a bind trying to remember to swap it between coats and jackets and different places it could be kept. So I completely understand your point and the important thing is, overall, how much do you take in a year.
If you take no more than 2 or 3 doses of Salamol a week then that would indicate that things are under control, asthma wise, so you'd only be ordering inhalers rarely. But if your use is higher than that, it may be a good thing to have an asthma review with your asthma nurse or doctor. Once you explain you have a busy lifestyle and feel more assured in having a rescue inhaler in different places, they may relent. After all, your Trimbow is a fixed prescription and cannot be increased or used as a rescue inhaler, so having Salamol to hand is important in your asthma plan.
I think it all depends on the area you live and even down to the GP Surgery and even your condition you suffer from as i have heard so many different stories.
I am know as a severe asthmatic with uncontrolled Asthma on maximum therapy and Biological injections as well.
Currently I have 2 Ventolin inhalers every 28 days and also 60 5mg Ventolin Nebulisers every 28 days and even then my GP may prescribe more inhalers dependent on my usage at the time. But i also have Prednisone Steroid and Co-Amoxiclav on repeat prescription as well without having to see the doctor
I regularly supply the GP with updates on Peak flows, inhaler usage and symptoms, steroid and antibiotic usage.
I am also hospitalized every 6 to 14 weeks with life threatening exacerbation.
But i am also reviewed by the Royal Brompton monthly with the asthma nurses and every 6 Months with the Consultant.
If you are under a specialist hospital or consultant maybe get them to write to your GP asking them to issue more inhalers
Same thing has happened to me! I am 46, have gone most of my life without any asthma reviews by my surgery (only when needing medical treatment for winter coughs), since being diagnosed with asthma as a teenager and have always had my inhalers on repeat with no issues. Then they suddenly started sending me online questionnaires as a review (tick box exercise on their behalf!). Now they have suddenly started questioning my requests for more than one inhaler. Like others have said, I like to keep these in different places 'just-in-case' and a few years back started ordering more than one at a time as I have other medicines that I get in multiples so why not my inhalers, especially when I wasn't working due to ill-health (not asthma) and couldn't afford £10 for each inhaler. When I get down to one inhaler 'in stock' I put in another order for x3.
I previously put an order in for x3 and they put a note on my account saying it suggested that I needed to move to MART with a steroid inhaler, without even seeing or speaking to me - which I ignored!
I recently put an order in and yesterday had a message to tell me that they had only prescribed me x1 until I have a review as they believe my asthma is not controlled because I have needed to order x3 inhalers. The last time I put an order in was last April and I still have x1 in the cupboard! I exercise every day and my asthma is more exercise induced than anything else, maybe needing more in winter and hayfever times, or sometimes maybe due to dust or cat hair etc, so I think x2 inhalers in nearly a year is actually very good!
I have also found that the new salamol inhalers don't 'hit the spot' like the previous salbutamol inhalers did meaning I have to spray more of it to get the same effect. Of course they tell you it is the same ingredients so does the same thing but as the patient using the drug I think I am better placed to say what I found more helpful!
I had a bad cough/cold a couple of years ago which I believe was a chest infection but I saw the nurse practitioner before it actually turned into an infection (before it worsened with usual signs of infection) and they said it wasn't and out of the blue prescribed me a pink steroid inhaler and told me to follow-up with the asthma nurse in a couple of weeks.
At the follow-up the asthma nurse was really pushy and wanted to get rid of my blue inhalers and prescribed me a pink forstair inhaler permanently despite me not wanting to do this as I knew it wasn't my asthma, it was that I was still getting over my chest infection and I'd only gone to the appointment because the pink inhaler guidance said not to just stop the inhaler. She wouldn't listen to me though and spoke to me like a child and asked me to 'humour her'.
I put on half a stone on the pink inhaler in a matter of weeks and my chest felt worse on it so I gradually weened myself off over a couple of weeks and haven't taken it since. The weight fell off again and I felt much better for it.
I later found out that they were part of a trial to do with some equipment for the surgery and if they contributed a certain number of participants to the trial, after the trial they got to keep the equipment. They directed me to the trial after putting me on the inhaler but as I didn't want to be on the inhaler and had plans to wean myself off they didn't want me as a participant anyway.
I am therefore reluctant to get in touch with my surgery for this review as I don't trust the asthma nurse (she is the only one) and do not want to be forced into taking the pink inhaler again when I do not feel I need it!
I understand they are trying to limit costs to the NHS etc but when it is something that someone needs to live a normal life it doesn't seem very fair and I actually think having more than one inhaler and keeping them in different places like work and home etc is very sensible and actually should be standard practice ....i'm sure I even read it as advice somewhere when I was younger!!
Sorry for the lengthily reply, I just feel very strongly about this and am actually really angry that my surgery has started doing this....oh also I only picked up the message from the Dr by chance as they have suddenly started emailing me rather than texting me as they previously did and I haven't been on top of my emails for a while now! Sooooo frustrating!!
Thanks for that detailed response- sorry to hear your struggles too.
Interested re your point about putting on weight after use of puffers… I thought maybe there was a connection with weight… but have always assumed it was a matter of a few calories per puff.
For me it only happened around the time of being prescribed the inhaler. I did some research which seemed to suggest that it was only in higher amounts that steroids could cause weight gain but to me it was too much of a coincidence and on stopping the inhaler I lost the weight. Maybe I was just someone who was more susceptible to the steroids, who knows. I wouldn't suggest that people stopped their inhalers to lose weight though!! I only did this as I didn't believe I needed the inhaler in the first place. Being able to breathe and staying alive is obviously far more important than carrying a few extra pounds! No matter how much people may want to lose weight, your existence is far more important, esepcially to your loved ones xx
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