Experience of Using Alvesco (Ciclesonide)

[Clemenzaa]

Since being diagnosed with late onset asthma (I am 63) in October 2020, I have been prescribed four different medications for my condition. Fostair 100/6, Relvar 92/22, Fobumix Easyhaler 160 4.5 and Combisal 25-125. The reason for the range of products prescribed, is linked to the horrendous side effects that I have experienced, particularly inflammation of the mouth and throat, blisters and ulcerations of my lips and severe hoarseness, such that I can hardly speak. In many regards, the side effects that each medication has caused is significantly worse than my experience of asthma itself.

Clearly, mine is not a unique experience and like many other asthma sufferers, finding an appropriate product to control the condition, as I have learned, can be a both a protracted and emotional process. Whist there is a wide range of products used in the treatment of asthma, I understand that there are only a limited range of corticosteroids, four of which, Beclometasone Dipropionate, Fluticasone Furoate, Budesonide, Fluticasone Propionate I have already experienced with devastating effects.

One product that I have I come across in researching my condition and particularly the impact of the medications I have used on my ability to speak is Alvesco (Ciclesonide) a corticosteroid reliever. I understand that it works differently than the medications I have used thus far and tends not to cause hoarseness.

If anyone has used Alvesco or knows someone who has, it would be so useful if they were kind enough to share their experience of the product with me.

[Hidden]

Interesting you’ve posted this. I posted a couple of days ago concerning Alvesco. I’ve just been switched to it although I haven’t started it yet (was switched this week, but awaiting a new spacer device as the mouthpiece of the inhaler is not compatible with my current one).

The reason for my switch is there’s some evidence to suggest that my current inhaler (Flixotide 250 - which is fluticasone) is a contributory factor to recurring oesophageal thrush. This is despite the fact that I have a very thorough rinsing out technique after using my inhalers and have never suffered from oral thrush in my life. As I also suffer from reflux it can be difficult to tell what the symptoms I’m experiencing are caused by without a gastroscopy. Eventually, in desperation, I went through to the Asthma nurses of Asthma U.K. and was told about Alvesco.

It is a steroid inhaler - as are all the others you’ve mentioned. It is not considered a first line treatment for asthma in the U.K. (don’t know about elsewhere). Here you really need to get a consultant to say you need it. The reason is cost - it’s expensive! It comes in two strengths (80 and 160). I’ve been put on the 160 and I’ve been told to take it once a day only (in the morning).

Sorry I can’t be of more help. In a week’s time (assuming I have the new spacer device by then) I might be able to give you more information about how I’m coping with the switch, though as far as longer term effects are concerned I’m not going to know for a few months.

[Clemenzaa in reply to Hidden]

Thanks for your response. I too have been meticulous in both the inhaler technique and mouth rinsing process, but sadly to no avail.

I’m based in the UK also and am lucky enough to have a respiratory nurse. She has been the link between my Consultant and GP Practice. This has made the change in medication quite efficient thus far.

I haven’t yet spoken to my nurse about Alvesco, but given the range of medication I’ve tried already, I’m hoping we can at least give it a try.

[Polzovatel in reply to Hidden]

Hi

Will Flixotide 250 X 4 puffs a day be an equivalent of Alvesco 160 - 1 puff a day ?

I am thinking of trying Alvesco as well x

[Hidden in reply to Polzovatel]

It was for me. I’m currently on Flixotide 250 x 4 daily in winter and so was put on Alvesco 160. In the summer I can usually reduce the level of Flixotide I need by half. Whether I can switch on to the Alvesco 80 in summer remains to be seen. Taking Alvesco once daily will be a completely new routine after over fifty years of using an inhaler twice daily.

I should add that I was told by the consultant that Alvesco reduces the risk of thrush occurring (apparently to around 1 in a 100), it doesn’t negate it completely.

[Polzovatel in reply to Hidden]

Thanks for your reply . Do you know if Alvesco can reduce other side effects as well -I've got neuropathic pain for years which coincides with switching to Flixotide but my consultant keeps saying that Flixotide doesn't absorb in blood and cannot cause systemic side effects .I just don't believe in coincedents !

[Hidden in reply to Polzovatel]

I’m afraid I can’t help you on that one. I’m not convinced that the Flixotide is the sole reason why a I’m getting oesophageal thrush. I was on it for thirteen years (eleven of them on the 250 accuhaler) with no problems at all. The thrush began after a bad dose of norovirus resulted in what have become recurring digestive issues - which also require medication.

[CallysMum in reply to Polzovatel]

Hi, fluticasone is absorbed at about 1mg daily dose. So yes it can cause systemic effects. Ciclesonide has a considerably lower threshold for absorption, that is why it can be taken at higher doses. There are some interesting research papers on the net comparing the two drugs. You ma want to download and read them and show them to your consultant.

[Clemenzaa in reply to Hidden]

Hi

Given your response to my earlier posting about the use of Alvesco, would it be possible to provide details of the spacer device that hopefully you have how obtained. A photo would be useful as well.

Despite alerting my GP about the issue of the Avesco mouth piece shape and thus the need for a specific spacer device for use with Alvesco, (on the basis of your posting) they have prescribed an AeroChamber Plus. I have seen photos of the Alvesco inhaler which are round and thus incompatible with the AeroChamber Plus spacer, unless the Alvesco mouthpiece has been modified in recent weeks.

Thanks in advance

[EmmaF91 Community Ambassador in reply to Clemenzaa]

The round mouthpiece fits in the aero chamber plus. If you look at the insertion place you have the ‘normal’ oval inhaler space but also a dented circle which allows the round inhalers in.

The mouthpiece is the same as it is for qvar which is a really common first inhaler drug, and often given to kids who always use spacers (just like adults should... but that’s by-the-by 😅)

Hope this helps and reassured you

[Clemenzaa in reply to EmmaF91]

Thanks for your response.

[Bexter02]

I was on Alvesco for nearly 6 years. They have swopped me to fostair last year due to supply issues of Alvesco. I liked Alvesco. Its fine particles and gets further down into the lung. I found it really did work for me. I have Eosinophilic asthma so found it helped me more

[Clemenzaa in reply to Bexter02]

Thank you for your response.

[CallysMum]

I have recently been changed from Fluticasone 4 X 250mcg/day to Alvesco, 160 4/day. And at week 6, I am seeing positive results. I am not waking up in the night anymore, Although I still have mucus on my chest first thing, which is soon coughed out in the morning, and no more is produced noticeably in the day. So far......so good.

[ewusia28]

Hi. I have been using Alvesco for about six years. It was the best inhaler for me. Because during this period, I did not need salbutamol once. My asthma was fully controlled. I had the Alvesco inhaler registered in Poland. When I came to the UK, my doctor prescribed other inhalers for me. Now my asthma is out of control. I also have hoarseness several times a day. At the moment I am waiting for biological treatment. I wish you health. I hope Alvesco will be good for you.

[Merryroundabout]

Did you manage to get Alvesco prescribed and was it helpful? I’ve been on a 12,month journey since referral to a consultant as it has such good reports and today I collected my first prescription (to trial so 🤞🏻). I’m currently on Qvar but have been getting increasing hoarseness and sore throat with that and Fostair.

[KCDC2024]

Hello everyone! I am writing you from Canada and it has been so interesting to read about the differences in UK versus Canadian treatments!! For example, no one I know uses Fostair here. I am a late onset asthmatic and have had difficulties getting control for the past year. Alvesco is the very best steroid inhaler if you don’t want to experience hoarseness and sore throat. That is important to me as I am a singer. I have been on Alvesco for 6 months now and it works really well and I have no side effects. The other really good inhaler to avoid throat issues is Zenhale if you need both a steroid and a long acting bronchodilator. It is very effective but unfortunately the Formoterol usually gives me bad leg cramps after a while so I only add Zenhale to Alvesco when my asthma starts to get worse from a cold.

Another interesting thing about the British health system is that you all seem to have asthma nurses which we don’t have here in Canada. I am a nurse myself and believe that specialized nurses have an important role to play in public health.

I really appreciate reading all about your different experiences with asthma - I have learned a great deal!!