Alvesco is anyone using it? - Asthma UK communi...

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Alvesco is anyone using it?

ErnieErnie
ErnieErnie
12 Replies

Id be interested to hear from anybody who is using Alvesco particuraly what you think and how long it takes to work?

12 Replies
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risabel59

Hi there,

This is the best inhaled steroid you can get. You take a lower dose, because the uptake is better, and it is small particulate. It also means less side effects like, Oral Thrush. Its the best one I've used. I only wish it was available in some of the combination inhalers, but because manufacturers won't co-ordinate its not available in any of the combination inhalers. My only gripe with it is that the inhaler does not fit my spacer properly. So you do need to make sure your inhaler technique is as good as it can be. Worth getting it checked by a doctor or Asthma Nurse.

Alvesco is still pretty expensive, so if you get prescribed it, be very happy as they will try to give you almost everything else before this. Also in the States some insurers don't cover it or there is a huge co-pay.

I really like this inhaler, compared to others I have used.

R

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ErnieErnie

Thanks thats good to know I only got it as i paid to see a consultant. How long did it take to work?

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risabel59

Much the same as other inhaled steroids. You should notice a difference within a week, but it depends what else is going with your asthma.

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Matman
Matman
in reply to ErnieErnie

My understanding is that Inhaled Steroids are not very effective until about week seven or eight as it takes them a few weeks to reach full strength.

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ErnieErnie

Im in Norfolk and my asthma is ok until i get a cold which i did about a month ago and it turned into bronchitis which a course of doxycycline and 2 weeks of prednisolone helped and my bad cough went but now im left with pretty bad asthma and lots of inflammation with phlegm that is hanging around. I usually take seritide 250 2 puffs morning and night and dont usually need ventolin. The private consultant bolted on the Alvesco to tackle the inflammation which i think it is but very very slowly. Im hoping it will go down and this bronchitis has now happened 3 years on the bounce. My concern is that maybe the first bought did some damage as is each bought. The long term goal of the consultant is to have me just take Alvesco but that seems like a pipe dream at the moment. To make matters worse all the steroids have given me really bad heartburn.

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ErnieErnie

His name is Dr Kamath at the Norfolk and Norwich university hospital. He was very good. Well worth shelling out for.

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risabel59

Sorry to hear you have been unwell. It takes my lungs 2/3 months to recover after an episode like yours. So patience is a major boring factor in all this. I used to use Alvesco as an add on to Seretide but now it is my main corticosteroid. Which I use with a combination LABA & LAMA inhaler as well as montelukast, Antihistamine and Nasal spray.

If you go to boots you can get a 2 week course of Omeprazole over the counter if you ask. That may help the heart burn massively. Huge numbers of people with asthma also have Acid reflux. Which you can have without realizing it and in fact can irritate your lungs. So perhaps worth trying.

Hope you feel better soon

R

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ErnieErnie

Thanks for your reply sounds like we have similar airways when im well i keep pretty active and fit. What are your combo inhalers called as seretide works well when im well but not great when im ill.

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risabel59

So I was put on a Combination LABA/LAMA inhaler in January

Its called Ultibro Breezhaler, the drugs in it are Indacaterol and Glycopyrronium. It cannot be used by Asthma patients without a steroid add on. It's made by Novartis. It's not currently licensed for Asthma, but is in Phase 3 trials as an asthma drug in a triple drug combination inhaler. (Trial name QVM149). My consultant really wanted me to use this rather than Seretide, to try and cut my daily dose of inhaled steroids. He also was dead keen on me adding in a LAMA, I had tried Spiriva last year and did not think it made any difference. One of the best things about Ultibro, is it lasts for 24 hours, although I find I start noticing it wear off after about 20 hours. The worse thing is the poxy delivery system. No money went into developing that!! Its back in the dark ages of spin halers and capsules of powder.

So no G/P could prescribe this, but your consultant could if it was right for you. The problem for me is that I can be really well, and then be super sick within a 24 hour period. I am classified as high functioning brittle stage iv and sometimes stage v, depending on the amount of Prednisolone I'm taking. I also have Bronchiectasis.

I just went through a bad patch in Dec / Jan, but seem to have recovered now. Although consultant always super gloomy about outlook and what to do with me!!

Good luck with the Alvesco.

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Matman

Ref Alvesco - you seem to have found a very on-the-ball private consultant if he / she was smart enough to prescribe what others are saying is one of the very best Inhalers.

Is your consultant part f one of the major hospital teams and - if so - which hospital is he / she associated with? I ask as it always worth knowing which hospital teams seem to be ahead of the curve. (I've been researching Asthma for a couple of years now and have no recollection of coming across this Inhaler before).

Thanks in anticipation of your reply.

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risabel59
risabel59
in reply to Matman

The drug name is Ciclesonide. But because of cost it is a 3rd line drug in the NHS. Because I buy all my medications in U.K. privately it costs about 60gbp for a 120 dose inhaler (and even more in the states) that lasts me for between 20 & 30 days depending on how I am. However my consultant 's long term aim is to try to get me to 1 puff once a day, (with other add ons) so then it would last 4 months.!! Not sure that day will come, but am really well at present so here's hoping 🤞

My consultant now only see's private patients. He used to be at Kings college hospital, and in fact did the original trials for this drug some years ago, although I was first prescribed it in the states.

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Matman

Thanks for the reply. Appreciated.

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