No More Ventolin?: Just put my repeat... - Asthma Community ...

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No More Ventolin?

Mandevilla profile image
37 Replies

Just put my repeat prescription in to be told Ventolin can't be issued because I already have a regular inhaler, the RelvarEllipta.

I have talked myself hoarse explaining that the Relvar is a MAINTENANCE inhaler and the Ventolin is a RELIEVER inhaler without getting anywhere. I've literally just had my annual review two weeks ago with the asthma nurse who agreed that I was managing well on the current regime which includes a few puffs of Ventolin a month, and now they're saying I don't need it...

Is this some kind of new drive to cut down the cost of asthma care in the UK? Well, it's definitely going to work...if only because it will kill off half the people suffering with asthma.

Feeling so stressed right now. Has anyone else experienced this, and if so, did you manage to get round it? And if so, how?!!

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Mandevilla profile image
Mandevilla
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37 Replies
Homely2 profile image
Homely2Administrator

Who is telling that you cannot have the ventolin.

I was once told that I could not have a medicine by a pharmacist, so I got my gp surgery to ring them, which worked

Mandevilla profile image
Mandevilla in reply toHomely2

I went to the pharmacy and was told it had been taken off the list so I needed to go to the GP. I went to the GP and they told me I didn't need it because I had the Relvar.

Homely2 profile image
Homely2Administrator in reply toMandevilla

I would ring the asthma UK helpline, to get your facts and language totally right. Then ring and ask to speak to a different gp.

Mandevilla profile image
Mandevilla in reply toHomely2

Good idea - I'll try that. Thanks

Poobah profile image
Poobah in reply toMandevilla

Keep us posted Mandevilla and good luck with the GP.

andy121 profile image
andy121

My doctor stopped my reliever by doing a medication review which I wasn’t aware of. When I had a review the nurse said all asthma patients should have at least one so she added two back on repeat for me. I also contacted the asthma uk which explained we should all have one,

so I’d follow homely’s advice and contact the lovely helpful asthma uk nurses then see your asthma nurse, as I’m finding gps crap when it comes to asthma control especially these younger ones now, sorry I could moan all day about the system 😂

Good luck I hope you get it sorted

Mandevilla profile image
Mandevilla

Rang the helpline and the nurse said she thought the GP had possibly misunderstood the type of inhaler I'm on. It has a broncho dilator in it, but it's not the kind that you can use as a reliever as well as a maintenance dose, but she wondered if he thought it was. (He's never actually seen me in person, just given me a couple of phone appointments. It's usually the asthma nurse I see)

I couldn't get through to the GP this afternoon, so I'm going to go back down to the surgery tomorrow. Fortunately, I think I've still got plenty left in my 'home' Ventolin although the one I carry round with me is running out, so at least I've got a few days to sort it before it becomes really worrying! I'll let you know what happens.

Evie751029 profile image
Evie751029

Some Drs have their heads so far up where the sun don’t shine it’s not funny. My fill in Dr let me change to the Breztri Inhaler which is basically Symbicort with a drug similar to atrovent in it. I couldn’t tolerate the Spiriva which is basically tweaked atrovent. I was on 800/12 of Symbicort a day split in 2 doses and Dr Genius said you’ll only need one puff twice daily. My Asthma Australia NP educator was furious when I rang her in tears 24 hours later stressed, wheezy and out of breath again. This clown of a Dr halved the steroid dose of an Asthmatic in the middle of a flare with a chest infection. So no your post didn’t surprise me but it did make my eyes roll in irritation as once again one of these people we are supposed to trust with our health failed agin. Did you know you can order the standard Ventolin puffer off of Amazon for between 5 to 10 bucks? It might be different where you live but I have a British acquaintance that buys hers from the pharmacy over the counter. I know you can buy them here on Amazon and over the counter.

Ts777 profile image
Ts777

Maybe make a formal complaint to the surgery?

You are supposed to be involved in any decisions about your health management. They can't just make an arbitrary decision on your behalf.

I think it's hugely disrespectful as well as unprofessional :(

Am I wrong?

whatallergy profile image
whatallergy

I don't know what it is with ventolin but they seem to swapping people to Salamol too instead of Ventolin which is an awful inhaler and makes me worse. Be firm, tell them you need one for the rare occasions you get asthma. they literally save our lives. This is crazy isn't it.

meonwanderer profile image
meonwanderer

My experience a couple of years back was that Ventolin was taken off repeat prescription list but I can still order it as an individual item as and when needed. Usually speak to Asthma nurse when required and she sorts the one off prescription. Good luck!

KBalders profile image
KBalders

My son has the same problem it’s been going on for a couple of years. It seems the belief is that if your asthma is properly controlled you do not need the ‘blue’ inhaler!!! ? But as we all know not having this is enough to bring on asthma - I really hope you find a solution to this. Sending my best wishes to you

RhiAngMaiDen profile image
RhiAngMaiDen

My Ventolin has been taken off my continuous prescription. I have been advised that if I need one to drop a note to my GP and they will arrange one for me to pick up from my local chemist. No problem and very efficient .

Superzob profile image
Superzob

From the limited research I have done, I understand that Relvar is not licensed for the MART treatment of asthma as the Vilanterol component is too slow-acting to be used as a reliever. If this is correct, then I would expect you to need a separate reliever.

Mandevilla profile image
Mandevilla in reply toSuperzob

That is correct.

I went down to the surgery this afternoon and was told that the GP is still 'considering' my request and I can go back Monday afternoon for a response. 😠 If it's not favourable, then I'll try the asthma nurse - she won't be in till Tuesday, so couldn't speak to her today.

Superzob profile image
Superzob in reply toMandevilla

Hope you get it resolved quickly - this sort of approach seems unnecessary and is very frustrating!

CANINE12 profile image
CANINE12 in reply toMandevilla

Can you see a different GP at your surgery for asthma care? I hope your GP sees sense and prescribes your ventolin as it's obviously needed.

Patk1 profile image
Patk1 in reply toMandevilla

Ridiculous.try not to get upset.hope uhave enough to be going on with x

This is, very upsetting for you. Hope u get it sorted. I have ventolin on repeat script. Can only order 1 a month but better than none. You would think a Doc would know the. diff between a preventer and a reliever inhaler. Keep pushing with them. If not resolved put a formal complaint in at surgery.

Mandevilla profile image
Mandevilla in reply toOscarpebbles2021

To be honest, I don't think our doctor would know what asthma was if it jumped up and bit him. This is the guy who thought it was fine for me to be using Ventolin multiple times a day in the past as 'that's what it's there for'...

Debbieroselewis profile image
Debbieroselewis

Ventolin disappeared off my repeat a while ago too, because Symbicort is supposed to act as preventer and reliever. I only need a low dose of Symbicort most of the time, but had a scare 2 years ago when I had Covid and physically couldn't suck it down strongly enough so wasn't getting a full dose. When I explained this to the Asthma Nurse she agreed I should have a Ventolin I can use with a spacer, just for emergencies.

Mandevilla profile image
Mandevilla

I am rapidly losing the will to live...which is probably just as well, because I'm unlikely to live much longer at this rate anyway!!!

After a lot of to-ing and fro-ing on Friday, I was promised Ventolin by Monday. Monday I was told today. Today, I get a message from the pharmacy to say my prescription has arrived. Go down to pick it up and it's something called Beclometasone, with instructions to take one puff twice daily. I have never had this medication before. Asked if it is a reliever and the pharmacist went off on a long rant about how it's not a reliever, it's a preventer and I need to take it twice a day and I should be trying to control my asthma by being responsible about taking my preventer and if I take it regularly I won't need my reliever as much and...finally managed to interrupt to say that I'm already on a daily preventer, which they have just reissued me but I am nearly out of reliever and I was promised it would be here by now so where is it. Was told they couldn't help, so I needed to go back to the surgery.

Went back up to the surgery where they insisted that I've been on Beclometasone in the past - not under that name I haven't! And certainly not during the period they say I've been on it, when Relvar is all I've had. I asked if it was the same thing as Clenil, which was my previous preventer, to be told it isn't. So I definitely haven't had it before.

Told that the request for Ventolin will go to the doctor for signing off and that it 'should' arrive within 48 hours. Pointed out that I've already been told this twice and what happens if I have a full blown asthma attack while waiting for them to sort it out. "Sorry, there's nothing else we can do. No, you can't speak to a GP. No, you can't speak to the nurse. You just need to wait for your prescription to be ready."

Mandevilla profile image
Mandevilla in reply toMandevilla

(Just googled Clenil and Beclometasone and see the the latter is the active ingredient in the former. So I have had it, just not in that form. But not for over a year because it wasn't strong enough to keep my asthma under control. And it still doesn't explain why they are issuing that at the same time as my current preventer inhaler...)

Poobah profile image
Poobah in reply toMandevilla

Absolutely abysmal care. Unforgivable. I'm angry on your behalf. How on earth can communication go so wrong? What if you hadn't known any better and just assumed the new inhaler was a rescue, but with a different name, and the pharmacist hadn't talked about the nature of the inhaler?

Definitely a lesson, which I learned long ago after a mix up by a pharmacist, to check your meds before you leave the chemist, just in case someone has made a mistake - in this case the GP surgery. At least you were able to check straight away that the error wasn't the pharmacist's and get back to the Drs to address their error (again).

Mandevilla profile image
Mandevilla in reply toPoobah

It's not the first time I've been issued with the wrong inhaler due to the doctor's error, which is why I always check meds before leaving the pharmacy now - I don't want a perfectly good inhaler being thrown away just because they can't return it to stock once I've taken it out of the door. The last time this happened was when I was on Clenil and the GP mistakenly issued Sobrobec instead - which might not sound a huge issue, except that I had a major reaction to something in the Sobrobec and it triggered an asthma attack, so if I'd been someone with poor memory or reading skills, I could easily have used it without realising it was the one that made me so ill.

My OH says I should put in a formal complaint, and I may do once this is sorted, but right now all my focus is on getting the Ventolin. Although we are in a rural area and this GP is my only option, so I'm a bit nervous about annoying them if I make a complaint!

Patk1 profile image
Patk1 in reply toMandevilla

I'd make an urgent appointment with Yr asthma nurse .itsappalling x

ChromoneLover profile image
ChromoneLover in reply toMandevilla

Actually, Clenil IS the same as Beclomethasone - that change of name confused me last year!

If you check the active ingredient in Clenil, on the information leaflet, you will see that it is the same drug - I do wish they would list the alternative 'trade names'!

Mandevilla profile image
Mandevilla in reply toChromoneLover

I googled it when I got home and realised it was the same as Clenil - but that still didn't explain why it was being issued as a subsitute for Ventolin, nor why they insisted it was what I was currently taking when I hadn't used Clenil for over a year beforehand! Anyway, all sorted now - until the next time the surgery computer crashes...

Mandevilla profile image
Mandevilla

For anyone who still has the patience to follow this saga (I salute you!), after being told yesterday that it would take 48 hours, I had a text from the chemist this morning to say my prescription was ready to collect. Went down expecting I'd probably been issued something else, but it WAS the Ventolin!!!!

And in a final twist to the tale, it's on repeat...

I don't normally need a huge amount, but I've put in for a repeat to be on the safe side and I'll cancel the repeat after I get that one. In future, I'll put a request in for a new one the moment I open the box for the old one and hopefully, that will give me plenty of time to go through this whole saga again! All this stuff about not stockpiling medication to protect the NHS is all very well, but after my experience of the last few days, I'm now more interested in protecting ME!

Poobah profile image
Poobah in reply toMandevilla

Hurrah! I'm pleased your perseverance paid off, and not before time.

Mandevilla profile image
Mandevilla in reply toPoobah

Not as pleased as I am - as I went down to pick up the Ventolin, the weather shifted to that fine misty rain which is one of my biggest triggers. Sitting by my dehumidifier now and feeling ok-ish at the moment, but so much less stressed knowing I have a nice full Ventolin inhaler if I need it!

AirIsUnderrated profile image
AirIsUnderrated in reply toMandevilla

Hi there, prescription clerk here.

Ask the nurse to put your Ventolin on Variable Use Repeat. That way it won't fall off your list if you don't request another inhaler within 28 days (system default) or whatever timescale they have set up.

And as a word of warning, requesting another inhaler when you've only just had one is the best way of getting the GP to stop it until you've had a review. Unless you've had a consultation/hospital report showing that you've had an exacerbation, he will think you're over-using it, rather than keeping one in reserve. If you need an extra one (for example one for home, one for work/school) then say exactly that in your request.

I'm sorry you've had that experience. It sounds as if your surgery is a bit overloaded at the moment. I'm VERY glad you got it!

Mandevilla profile image
Mandevilla in reply toAirIsUnderrated

Thanks for the advice about the variable repeat - I'll speak to the nurse the next time I see her.

The annoying thing is that I literally had my annual review with the nurse about 3 weeks before this all started, when she said she was really happy with everything and to carry on!

Interesting to note about it potentially being a problem to request another inhaler too soon - it was the pharmacist who suggested I put in for the repeat as they'd been concerned at how long it was taking to sort out, so suggested I should keep one in reserve. The bizarre thing is that last year, this same GP was issuing multiple Ventolin inhalers I hadn't requested which is why I haven't had to request any for so many months because I've been using up the stockpile that HE created!

teddyd profile image
teddyd

My gp is ok but there has been a few times they have done something that really stressed me out . I got a phone call from the receptionist telling me not to use my steriods ( in my emergency pack) unless I have spoken to my Gp. This really was upsetting and very worrying. When I spoke to the respiratory nurse at the practice she was raging that this had not been discussed with her. She was very supportive and was going to make it clear to the Gps that it was a vital for my care plan. She then provided me with a card which allows me to get my emergency pack directly from the chemist.( this is in greater glasgow health board) Please stand your ground you know what works. I am on relvar 184/22 and ventolin . This is prescribed my the respiratory consultants. Good luck fingers crossed. XX

Haay profile image
Haay

I have just had the same issue which is why I joined this forum, to see if it was the norm. Been on Ventolin plus steroid inhalers for 40 years but now no ventolin allowed...

Mandevilla profile image
Mandevilla in reply toHaay

I'm sorry to hear that - when I rang the Asthma UK helpline for advice, they said they were hearing the same thing from a lot of people, so it seems there is a real pushback against Ventolin.

Who has told you that you can't have it? If it's the GP, it might be worth making an appointment with the asthma nurse if there is one at your surgery. I've found that the nurses at my surgery are way more up-to-date about treatment and much more helpful.

ChromoneLover profile image
ChromoneLover

Yet another example of Pharmaceutical companies withdrawing drugs without first notifying regular users, due to such things as CFC's in the aerosol propellant (you would think that they could find a less 'ozone-depleting' propellant!) or profitability of producing the drug/applicator. This happened to me with Intal®, which was originally available as a powder (in 10mg capsules), that could be inhaled with a propellant-free 'puffer' or 'Rotahaler', so now I have to order it from USA, as a nasal spray, and inhale via a nebuliser. The irony is that Sanofi are still making the 2%(w/v) sodium cromoglicate eyedrops, an over-the-counter medication, but not the 4%(w/v) nasal spray!!!

So, now it looks like I will also be faced with unavailability of Ventolin, although I know that Salamol has the same ingredient (Salbutamol), and is listed as an alternative!

When will they think to warn us patients first, before discontinuing the drugs that we depend on?!

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