New Diagnosis?: Hi, I suffer from... - Asthma Community ...

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New Diagnosis?

21 Replies

Hi, I suffer from severe hay fever, and am currently on a blue ventolin/salbutamol inhaler due to suspected seasonal asthma (spent 2 weeks on prednisolone before being put on the inhaler) and have been for the past 2 months which has made a massive difference to me! My main symptom has been a horrendous, constant cough for over 3 months which responded to steroids then came back, and then responded to the inhaler! I have had 3 particularly bad bouts of tight chestedness and a slight high pitch/sinusey sounding wheeze, 1 which was the night before I started my inhaler, and 2 which have responded to my inhaler. I finally had my spirometry this week, but I have to wait nearly 3 weeks for an appointment with my gp to discuss the results. The nurse did say that my peak flow without inhalers is 135%? I don’t really understand it all yet and all she said was that my gp will discuss it all, but as she stated before the test my peak flow for my age/height is 300, so I worked it out to be 405 without ventolin if I have understood/worked it out correctly, and at the end of the testing she did show me my peak flow on the screen after having the nebuliser which was 535? So I assume that as there has been that difference, and the fact that steroids and inhaler make a massive difference to my symptoms that it is asthma? Although would my peak flow be that high without ventolin if it was? I wasn’t particularly symptomatic that morning but the test before having the nebuliser was awful, I was exhausted and couldn’t speak by the end of it and having the nebuliser felt amazing! The best I’ve been able to breathe for a long time!

Is it ok to continue with regular ventolin every day for so long? It will have been nearly 3 months since I started it by the time I’ve got in with a gp again to discuss the spirometry!

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21 Replies
Chip_y2kuk profile image
Chip_y2kuk

You may well have asthma with such a variation before and after ventolin... some people can ace spirometory (I do) but i used to do a lot of swimming and could swim 25 meters under water

Chip_y2kuk profile image
Chip_y2kuk

Your gp should be prescribing you a brown steroid inhaler and not leaving you on ventolin for so long... asthma management guidelines state you shouldn't be using it too often (something like Less than 3 times a week)

in reply to Chip_y2kuk

Thank you for the reply :) I did do a lot of swimming, but ear problems have kind of put that on the back burner this year, and I have 4 dogs so do daily walks, although again before I was on the inhaler, and with the heat wave we had that hasn’t been as much as usual...

Yeah that’s what I understood, about not using ventolin more than 3 times a week, although they know I’ve been using it every day! Since the pollen count has gone down I’ve been able to cut down but I find that I still have other triggers, perfumes/deodorants/aerosoles/polish etc....... and I’ve noticed I’m needing it more on the few days when I’ve been up early and it’s still been cold and damp outside...

Chip_y2kuk profile image
Chip_y2kuk in reply to

I'd he asking your gp about a brown inhaler when you see them which is the logical step... the ventolin has made a difference but ideally you shouldn't be taking that all the time... a brown inhaler will reverse the inflammation to open up your airways Mening you shouldn't need the blue one as much / at all

Chip_y2kuk profile image
Chip_y2kuk in reply to Chip_y2kuk

And if that doesn't work you can move up the stepwise management ladder to a combination inhaler/higher dosage of inhaled steroids there are quite a lot of options

in reply to Chip_y2kuk

Thank you for the advice, very much appreciated :) I will definitely be asking about a preventer and I’m logging when I use my reliver so when I see my GP I can show them... just frustrating because I’ve had to wait so long because of lack of appointments, hence the long wait for the spirometry (gp said they wouldn’t change/add anything until after that)

Chip_y2kuk profile image
Chip_y2kuk in reply to

A combination inhaler contains a longer acting version of ventolin, ventolin typically lasts up to 4 hours the longer acting version lasts up to 12 hours

So I wouldn't be overly stressed about taking ventolin daily for a few while

WheezyAnne profile image
WheezyAnne

Just wondering what you are taking to prevent you reacting to the pollen etc in the first place? Have you had skin prick tests at all? Do you use any nasal sprays? Prevention is the best, to stop the symptoms coming on in the first place. Are you on regular antihistamine? Have you ever tried a steroid nasal spray such as Beconase for your allergies? Note I am a lifelong Asthmatic with experience, but I am not a medical professional. If you have any issues whilst waiting to see your GP,don't forget that Pharmacists can help as well.

in reply to WheezyAnne

Thank you :) Oh yes, I take acrivastine 3x a day and I’m on Avamys nasal spray 2x a day, they help with the hay fever but this year has been horrendous! I also use a sinus rinse daily too, I steam as well but just with hot steamy water as I find putting anything such as olbas oil will help open my sinuses but trigger a nasty coughing fit! I haven’t had any kind of allergy testing though but my symptoms last from around early March to end of September/early October every year. Thanks for the advice re pharmacists, mine is very helpful and usually my first point of call before gps etc!

WheezyAnne profile image
WheezyAnne

How long have you been on Acrivastine? Maybe time for a change? I am on Ceterizine 2 a day, as one did absolutely nothing for me. I also take Piriton as an add on if reacting. I can see from previous messages, that you understand about Ventolin, and that a steroid preventer inhaler, or a combined preventer/long acting reliever inhaler would likely be suggested next. I feel that it would be best for you to ask your GP to refer you to the Allergy Clinic, whilst together you manage your symptoms.

in reply to WheezyAnne

Thank you, your advice is very much appreciated as so new to all of this :) I have been on acrivastine for years, switched to Avamys a couple of years ago after hay fever triggered a nasty bout of sinusitis, no other spray comes close to how much relief the Avamys gives me! Cetrizine and loratadine don’t do anything for me and Piriton wipes me out! I had been prescribed montelukast but it didn’t agree with me either, but the acrivastine does seem to really help me although with the heat and the high pollen this year it hasn’t worked as well as it normally does. Thank you, I think that sounds like a sensible way forward, definitely will discuss allergy testing etc when I have my gp appointment

andydandy profile image
andydandy

I can't 'do' steroids without feeling weak and cold and my pulse slows until it can barely be felt. My Dr. gave me Ventolin with a spacer (blue one) and to use two puffs every 4 or 5 hours. sometimes I can go for 7 hours if I'm sleeping. I call it my 'bong'. Anoro, Asmanex HFA, Symbicort, Breo and Singulair all nearly killed me.

in reply to andydandy

Gosh, how scary! I’ve had 30mg prednisolone daily and so long as I took it in the morning I was okay, although I was only meant to be on it for a week but as soon as I stopped, although my sinuses and hay fever had massively calmed down, my coughing started straight away was awful so GP gave me more to come down off them slowly, although the cough came back as soon as I’d nearly come down off them so then I saw a different gp after suffering a minor attack who put me on the ventolin, said he was surprised I hadn’t been given one before, and that has made a huge difference! Like you I’m 2 puffs 4x a day, although as the pollen count has gone down I’ve been able to cut down, and there has been the odd day here and there where I haven’t had any at all, but we had a few cold/damp mornings which has set me back quite a bit! Just waiting now for 2 weeks to discuss it all with my gp and find out exactly what the spirometry has shown if anything!

So........ interesting...... went to the pharmacy to collect my repeat prescriptions.... to see that my gp has refused my ventolin and there’s a note on my prescription to say come in to discuss inhaler......................... I have already booked an appointment ages ago, in 2 weeks time as it’s the earliest appointment available with any doctor after my spirometry, and I’ve tried ringing to see if there is any remote possibility of bringing it forward and typically can’t get through! Don’t think I’ll be able to anyway as there’s nothing earlier available on my online patient access booking! So now I’m panicking hoping I don’t have any more bad attacks so I have enough ventolin left to get me through another 2 weeks! So frustrated! Surely they can’t just refuse someone an inhaler! Especially as she was the one who told me to take it and make sure I always have plenty on me! And the nurse I saw last week for my spirometry said the same thing!

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to

I think I would keep trying and explain the situation ie that you do have an appt booked but your Ventolin has almost run out so.can you at least have one to tide you over? If you get them on repeat the pharmacist may also be able to help.

I get this quite a lot as I get through loads! I usually ring up and explain nd then they will issue it, but until I do they assume I am a normal asthmatic and that my usage is a big red flag. I mean it is, but there isn't anything they can do t this point! It may well be that a dr who doesn't know the background for you did this and will be ok with prescribing once they know the situation.

in reply to Lysistrata

Thanks :) Would understand if it wasn’t for the constant appointments I’ve had where I’ve been told to keep taking it when needed, and as my GP wouldn’t want to give a preventer until after the spirometry so I only have a reliever anyway so my usage will be higher than someone on a preventer so don’t understand why she’s suddenly changed her mind and refused it! Thanks for the advice, I still can’t get through (the perks of about 10 practices merging together and only one practice where all the phone lines go to!) but will keep trying!

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply to

Ugh very annoying but even more likely that it was refused by another dr based on general principles. Goo that they notice but frustrating for you! I'm under a specialist centre but often the duty.dr in GP surgery doesn't seem.to have access to or have had a chance to read notes eg they don't know about recent hospital admissions.

in reply to Lysistrata

It’s my own GP who does my prescriptions but I guess it could well be that it’s a different doctor has seen the request and refused.. especially as it’s not on repeat I just add a note asking for one when I order my antihistamines etc! Hopefully it will sorted before I run out! The trouble with ventolin is it’s so hard to judge how much is left!

andydandy profile image
andydandy in reply to

Does your inhaler not have a counter? If not, maybe your Dr. could issue a prescription for a ventolin inhaler with one in it. Mines blue and made by glaxo smith kline.

in reply to andydandy

Thank you for the advice! I didn’t know they did ones with counters on, I’m still so new to all of this! Mine is a blue GSK one, but it’s just a standard blue ventolin one! Definitely something I will ask about, I get so worried it’ll run out without me realising so would be very helpful and reassuring to have one with a counter on! I keep meaning to make a note of when I use it so I can work out myself how much is left, but I keep forgetting to write it down, especially when I’m busy at work!

So, I finally saw my GP after my spirometry, on the whole she was happy with it, but based on the reversibility and how much better I have been with the ventolin and has officially diagnosed me with allergic asthma! She has now given me a brown Clenil preventer and wants me to take it for the next 2 weeks then stop.... with the aim being to not need any ventolin at all. I am a bit confused though because she said to stop after 2 weeks..... but reading posts on here tonight I see people on this forum saying it can take weeks to actually start working! I guess if symptoms start up again I’ll call them! The reason my last ventolin request got denied was because it had obvioulsy been seen by a different doctor who hasn’t seen me or checked my notes and thought I’d had too many, but my GP said that as she was aware, and I’ve had no preventer only a reliever for the past couple of months, and I’ve been backwards and forwards and been tested and monitored she wasn’t worried and happily gave me one but on the advice that if I am actually using it I need to get seen straight away now I’m on the Clenil! Still getting my head around it all as I’m still new to all of this but I am so relieved that at least I finally have answers, and my GP has been very helpful and approachable and has listened to me and respected what I have to say!

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