horselover23

[horselover23]

I am interested to hear from anyone who is suffering severe Asthma, how it is managed, I am currently taking Salamol and Forstair but it is not working too well

[Homely2 Administrator]

I am severe asthma with poor control, non eosinophilic. I am under a general hospital consultant, who sends my file regularly to a tertiary centre for comment and uses the tertiary centre resources as he wishes. If this set up fails I will have to go direct to tertiary centre and talk re biologics, but I may not qualify for them, it is harder for non eosinophilics, and will have to be diagnosed yet again, for the fifth time in three years, I am truly fed up with continually being diagnosed each time I am transferred

A year and a half ago I was like you on fostair, fostair 200 in my case, plus salamol. I then lost control for nine months or so, lots of pred, hospital etc.

When I started to lose control, when I came out of a and e, they gave me a monthly meeting with a severe asthma nurse, who sorted out my spacer technique, and tried fostair 100 mart on me, montelukast and then spiriva. I ended up on a mix of fostair 100 mart, fostair 200 and spiriva. The consultant organised lots of tests to check the diagnosis.

Then in September the consultant altered my meds to alvesco, fostair 100 and spiriva. These have given me some control

but not enough, so they have doubled my alvesco, and giving me access to a respiratory physio. Hopefully that will get my control back.

So at present I have a good GP asthma nurse, good hospital asthma nurse and a hospital general respiratory consultant and we are making progress but slowly.

If I was you I would ring a nurse at the asthma UK helpline on 0300 2225800, office hours and work out a plan to go forward. Then go and see your medic and discuss the plan with them.

Asthma can be truly scary so you cannot just live with it, you have to get the correct medical support.

[janet65]

I had asthma since the age of 4 after whooping cough. My poorly controlled asthma came on suddenly. In 2016 I had some testing by a respiratory consultant who said I had severe asthma and bronchiectasis. She struggled on trying to get my breathing under control. Like you I ended up on fostair 200 and a reliever, neither really controlled my breathing. I had 4 yrs of many abs and prednisone. Then I was referred to the Royal Brompton hospital for heart & lungs. I had more testing for a whole day and the recommendation was that I qualified to be tried on a Biological injection. My levels of eosinophils were extremely high meaning that allergies were the main trigger for my asthma. So I have severe eosinophilic asthma. The injections been a complete life changer for me. I still have to use the fostair morning and night as a precaution but since July 2020, no abs or steroids. Good luck to you.

[Patk1 in reply to janet65]

That's gd news.which 1 ru on Janet65 x

[janet65 in reply to Patk1]

I'm on nucala. It's working very well for me. xx

[Patk1 in reply to janet65]

I'm on fasenra.working gd for asthma but for me,wears off 2wks before it's due ((

[janet65 in reply to Patk1]

I have heard of that happening to other people. Hopefully your provider with look into that. I actually have a face to face appointment with mine on Monday, first since before lockdown. The rest have been video chats but no testing of course. Good luck xx

[Patk1 in reply to janet65]

Thanku.yes she said another maybe better for me.having lft etc soon and mdt meeting to decide.is yrs 8wk or ea 4 wks?mines 8.last 2wk feel dreadful .gd luck with Yr appointment x

[janet65 in reply to Patk1]

Thanks. Mine is every 4 weeks. I really don't notice any difference between one day and the next though. xx

[Ghoulette]

Hi. I'm severe asthmatic under the severe asthma clinic at my local hospital.

I started with adult onset asthma which deteriorated over a number of years and am now classed as severe asthma which has largely been poorly controlled.

My medication is Fostair 200/6, Spiriva Respimat, Uniphyllin 400mg, Montelukast, Fexofenadine, Omeprazole, acetylcysteine, Salbutamol and Ipratropium nebs (I have a home nebuliser), ventolin inhaler, Dymista nasal spray and Nelimed nasal rinse.

I was on Azithromycin but I recently stopped this to see if it was this that was causing my IBS/bowel issues to flare up. I used to be on 40mg prednisolone daily, but after being admitted to hospital for a 2 week wean to check if I was eligible for biologics, it was discovered that I have Adrenal Insufficiency and so was switched onto hydrocortisone. I still have a rescue pack of Doxycycline and Prednisolone to start at home when I have a chest infection to try and keep me out of hospital (I had multiple admissions last year).

I have also recently started the new Tezelepumab biologic injection (I have my 4th injection next week). It has taken years for me to get this as I don't qualify for the other biologics because the steroids consistently dampened my eosinophil count.

I also had a course of pulmonary rehab (referred by the hospital ) which I found really helped and I actually managed to get back to work (I had been out of work for around 2 years due to my asthma).

If your asthma is poorly controlled you should ask to be referred to a hospital clinic as they have more scope to add in additional meds.

[MikeWhite in reply to Ghoulette]

sounds very similar to my asthma story

I’m on Xolair now.

pred also caused diabetes, low thyroid, low testosterone & high bp but kept me alive

[Jollygood]

hello

I am also a horse lover (I’ve got 2) which is probably not helping my asthma but there you go, you can’t help what you love, can you?

Have they tried you on anything other than fostair? Personally I found that fostair didn’t help in the slightest. Things have improved greatly for me on relvar. It was the consultant at the hospital that changed me onto that, not the gp.

I agree with what has been suggested above, you need to push for a higher referral.

[Dilly1958 in reply to Jollygood]

My consultant asked me if I smoked, had any pets or strangely died I have a compost heap!!! He said he was fed up with trying to help people who refused to make changes to help themselves !! I think I caught him on bad day. To be fair 75% of severe asthmatics present with obesity and over 60% have an animal al they are allergic to....

[Jollygood in reply to Dilly1958]

Oooh, a compost heap. That’s a new one on me. I hadn’t thought of that. We do also have a dog but she’s a non moulting type. I can see why the consultant says that but my horses will be with me until they pop their clogs. End of!!!

[Dilly1958 in reply to Jollygood]

our neighbour has had to rehouse their dog as their 5 year old is now severely asthmatic ... non moulting dogs can also trigger asthma sadly. I guess we all have to make choices between our own long term health, those of our families and having a pet.

[Tenth]

the salamis is a formulation of a very effective medication that has been changed by the use of a different propellant that is NOT effective at all. But apparently better for the “environment” and their plan is to discontinue the good version and replace it with this ineffective version. Very annoying and not good for us.

[Tenth]

the Salomol is a very inefficient version of a good medication. They say that the old propellant is “bad for the environment” but the new propellant is not good enough for the medication to be effective. Their plan is to discontinue to old, and much more effective formulation. For the good of the “environment” and the defeat of us.