Ventolin restricted

[Lotti_321-]

I’m having a bit of battle with my GP surgery’s pharmacy over the amount of ventolin I’m prescribed. I’ve had 13 vent inhalers since March 20 ( I know it’s a lot), however with frequent flare ups & attacks in the past 12 months they’ve been needed. Vent works and I see a difference but often in a position where needs to top it up again before the 4 hrs mark. I am aware this and using it more than 3 times a week it’s uncontrolled.

I’m on everything possible right now to try maintain control (even xolair) we just aren’t winning for any long period time. Even despite when I’m on pred, 2-3 weeks after finishing them I start asthma & eczema flare again. Both me & my consultant are trying to avoid long term pred.

I don’t want to be in a position of running out of vent. I don’t actually know what my question is I just wanted to rant that it’s frustrating to jump through hoops to get the prescription ( I know they are doing it from a good place to try & protect me)

[twinkly29]

If it's what your consultant is using at the moment (or rather knows/understands the "overuse" because at the moment there is no other choice), could you ask him/her to write to GP asking them not to restrict it/to prescribe "X" number of ventolins?

[Lotti_321- in reply to twinkly29]

Yeah the hospital are aware as they regularly view my prescription records to check. I’m hopeful seeing him next weeks (fingers crossed it doesn’t get cancelled)! So will definitely speak to him about it, as I’ve had a couple of occasions recently where my request have just been rejected without any follow up!

[twinkly29 in reply to Lotti_321-]

I definitely would. Ok it's not ideal and I'd actually acknowledge that with him - but if it is the only option at the moment then the GP surgery are being kind of dangerous.

[Lotti_321- in reply to twinkly29]

Thanks Twinkly I will do, I had to laugh when they said I was there most complex asthma patient at the surgery so then I was like maybe need to be a bit more flexible with the repeat prescriptions!

[twinkly29 in reply to Lotti_321-]

Yes! Get a brain people! Also 🌟 for your accolade 🤣

[Lotti_321- in reply to twinkly29]

I have to laugh! I said to my dr thanks for the back handed compliment!🤣

[adenough]

I’m on 4 ventolin per month, taking loads every couple of hours!

[Poobah]

I was using one Ventolin every couple of months and in September my pharmacy explained that they had received an e-note from the GP practice that I needed to discuss this with my GP before they would prescribe any more Ventolin. Arranged a telephone consultation with my GP and he was rather bemused by the whole thing, as the alert is automatically done by prescription software - it keeps tabs on patient use of prescribed meds. GP updated my Ventolin prescription prediction so that no further alerts would be raised by the automatic prescription software, as long as I didn't exceed one inhaler every 2 months (it had been set at 3 inhalers per annum). Definitely talk to your GP or asthma nurse about their predicted use of Ventolin on your digital records. If they're reluctant to change it then get them to talk with your consultant.

[Lotti_321- in reply to Poobah]

Yep that is the issue with my record, they’ve put it really high that my next inhalers isn’t due before 2036!! Just so that it sends alarm bells to the practise if I request one sooner. I know they are trying to safety net me, but when they repeatedly tell you that you are their most complex asthma patient you think they’d listen to what I need! Thank you though I’ll speak to my consultant & try forming a plan

[TeachKat in reply to Lotti_321-]

I think that the predicted use thing is quite random- when I started on fostair and the gp decided it could go on the app for re-ordering it also said the ne t prescription would be in 2036! I actually get it every 30 days of course.

[Kerryl]

Hi there lotti I had this same problem with my gp surgery to the point they told me to ring an ambulance if I need more then they would give me. I rang my consultant and with in an hour the go surgery was on the phone to me to tell me there was a prescription ready to be pick up. Please get your consultant to contact your go surgery.

[Lotti_321- in reply to Kerryl]

Won’t be doing that, I’d never be off the phone from the ambulance & the ventolin keeps me out of hospital! I’ll speak to my consultant next week & try to figure something out. I know they are trying to safety net me, but when they repeatedly tell you that you are their most complex asthma patient you think they’d listen to what I need!

[Debbi0202 in reply to Lotti_321-]

I am prescribed 5 for 3 months if i get them monthly i get 2 but with 90 day script i loose 1 ive never had a problem plus sometimes i use all of them up till last year i would almost run out my brething was so bad now my meds are working better "breo and spiriva " that i have managed to put some away so i wont run out its very scary when that happens then u get anxiety attacks for fear of running out so u send yourself into a episode Im shocked to hear that 13 is too many for a year why have i not had any problems ?? Is it because of diagnosis thing?

[Lotti_321- in reply to Debbi0202]

I think it’s more of policy thing for my gp surgery, recently in the past 12mnths they’ve become very serious on more than 12 being prescribed in 12mnths for all their patients. I used to get 2 inhalers every time I requested them. Then they changed their policy to only 1 each time. I don’t think they are correlating severity with number of prescriptions

[Lysistrata Administrator Community Ambassador]

Hi, just saw this and wanted to respond [to teddyd] as while you may use them, home nebs aren't considered suitable for a lot of asthmatics, so it may be best not to recommend them to others.

This post explains more:

healthunlocked.com/asthmauk...

[teddyd in reply to Lysistrata]

It was only a suggestion to discuss it with her consultant.

[Lysistrata Administrator Community Ambassador in reply to teddyd]

Yes, but the consultant may very well not be happy to agree, for reasons given in the post I linked to. It's not anti-neb, but explains why many doctors are reluctant to give them. Anyone can read these posts, so I thought best for Lotti and others reading to have the information and context.

[teddyd in reply to Lysistrata]

I have deleted the post . Dont want to give any body advice that could be misleading.

[Lotti_321- in reply to teddyd]

Thanks both Teddyd & Lysistrata! It has been suggested to me by a local pharmacy. I think there reluctance will be the fact I can often still go south even despite being on pred for several days. Will discuss options with consultant (hopefully next week!)

[Mickeyboy2020]

Hi same here for me, I’m on long term pred and have been for years, also have a monthly infusion of ramilisibub ( I think that’s the name ) but as I’m reducing my steroids ( now down to 10 mg daily ) I’ve found I’ve needed my ventolin more.I take 2-6 puffs a the day or as and when needed. I take the accuhaler of which has 60 doses so I’m using 1 every 2 weeks approx. Gps pharmacy called me the other day asking why I get 2 prescribed at a time ( silly question) I told her it was because I need them and that the Royal Brompton hospital ( who look after me for my asthma) are aware of what dose I’m on.

My gps and local hospital are not that clued up on my asthma ( that’s why I asked for a second opinion years ago and they sent me to the Brompton) and for them to actually question what meds I’m on instead of consult the hospital is ridiculous.

It gets the stage now that she I request meds from chemist online the GP actually refuse my request it’s an absolute joke

As for the Covid jab I can’t understand why all gp surgeries are not open and administering the jab, I live 5 doors away from my gp and they havnt actually been open since March as far as I know all dealings are done through a side window with a receptionist

Some gps are getting off lightly I reckon staying at home doing everything on a phone or video call and I read the other day that they’re going to make a fortune administering this jab, how’s that right!

If it’s that bad why aren’t gps open 24 hrs a day working shifts to jab everyone

Sorry to rant on but it’s just my opinion

Stay safe all

[Js706 in reply to Mickeyboy2020]

Just to say that actually GPs have remained open and working throughout the pandemic. Yes most issues are being dealt with via phone/video appointments but that is to keep everyone as safe as possible and they are still seeing people in person if it is required.

Also the money being given to practices for the vaccines isn’t going into the pockets of staff, it’s so they can organise sites to give the vaccine, buy equipment to store and administer it and pay staff to give it.

[Travelling in reply to Mickeyboy2020]

I think the GPS are ready to go with the jabs except they haven’t got them. That’s what my GP ha told me and he’s a good ‘un. There are problems with a world wide lack of glass vials and that’s slowing production.

[Lotti_321- in reply to Mickeyboy2020]

That is frustrating when the royal Brompton are aware and yet they still refuse. I’ve not found that with my gp surgery when I’ve needed to be seen then I am and at no point have problems not been sorted out during lockdown. The lock door i think is there purely as otherwise people may assume they’ve got say an ordinary chest infection & in fact have covid and be spreading it through the surgery. I know mine & heard from others they are geared up to start vaccinations, some are just waiting for their delivery! It’s certainly a strange and sometimes equally as frustrating time.

[Mickeyboy2020 in reply to Lotti_321-]

Thanks for reply

[Superzob]

I wonder whether someone is missing the point here. The fact that you are taking so much Ventolin is surely a sign of bad asthma control. Rather than simply preventing you from obtaining further supplies, surely you should be provided with more effective long-term treatment, and the Ventolin kept going until that is achieved?

[Lotti_321- in reply to Superzob]

We’re all in agreement that I’m not as controlled as they’d like. However I am on max therapy unless I go down the route of daily steroids or steroid injections which i really don’t want to want to if I can help it. At the moment im having a few attacks a year and then repeated flare up in between the attacks which are treated with pred or in a&e. At the moment my understanding is that they want to try & keep the attacks at bay & keep my as stable as I am. Until it’s safe to do breathing test again / review if there are any further treatments

[Mezitonka]

Hi. I have COPD as well as asthma. When I was still a (heavy) smoker I only got one ventalin per month, which ran out within 14 days leaving me quite weasey, sometimes putting me in AE with a severe exacerbation (I was also on seretide and braltus). However, as soon as I gave up smoking, 4 years ago, the GP's visiting chest nurse automatically put me on 2 ventolin - without even asking! So, it can be quite arbitrary. If you have used an average of 13 in 11 months, then that is just over 1 per month, which is not at all excessive. You need to put more pressure on. Write to the respiratory dept of the local hospital/NHS. If that doesn't work, take more strenuous measures. Keep trying, don't give up. If you need the ventolin, you need it. Good luck.