First post here! Looking for a bit of advice

[mikepett2]

Hi

Sorry for the lengthy post, in advance! Just looking for a bit of advice about my uncontrolled asthma...any opinions or similar stories would be greatly appreciated.

I've suffered from allergic asthma (dust) for the past three years, and have seen countless doctors and specialists, only to benefit very slightly from treatments they have recommended. I also struggle with mental fogginess (unable to focus), a tremor, and anxiety (when my allergy is at its worst - mainly in the morning and early afternoon).

I'm currently taking up to eight puffs of Fostair daily (two in the morning, two in the evening, and the other four if I need them during the day). I've also got my salbutamol ventolin inhaler, which I'm needing to take around four times a day at the moment.

I've been seeing a respiratory specialist who seems to have run out of ideas. He's tried me on Montelukast and Spiriva, and tried increasing my Fostair and using it as a reliever (with my usual reliever). Nothing really works.

The respiratory specialist referred me to an allergist who has been trying to treat allergic rhinitis with antihistamines and nasal corticosteroids. It turns out I can't really take either of these. Antihistamines make me really tired (even the supposedly non-drowsy ones) and the nasal corticosteroids actually make my asthma worse, as well as leading to blocked nose and ears.

Basically, I'm unsure where to turn next. I have to wait three months between specialist appointments, which is far too long when I know within the first few weeks that the latest treatment hasn't worked. I think I need immunotherapy treatment, but the allergist seems very reluctant to go down that route (probably because of costs and duration).

From what I've read, though, I should be able to get my asthma under control, even if I'm suffering with a dust allergy. I've never been offered any other type of preventer inhaler other than Fostair, but from scanning through posts on here it looks like an alternative could help. Can anyone recommend a good preventer that could be used instead of Fostair?

The only way of controlling symptoms at the moment is dust avoidance strategies. I spend a lot of time hoovering, washing and changing bedding, and dusting around the house. This helps reduce my symptoms, but it needs to be done every couple of days to have any affect. I'm also looking at getting carpets removed and a new wooden bed frame and mattress.

My quality of life has been greatly affected, so I'm desperately looking for new ways to tackle this. I've had to reduce my hours to work part-time and I struggle to play sports or do any fitness activity, which used to be a big part of my life. I'm only 29 years old, so I feel like I'm missing out on a normal life.

I'm considering seeing a private asthma specialist, but have no idea what this would cost.

Thanks for reading! I appreciate any opinions or ideas.

Mike

[emmasue]

Sorry to hear that you are suffering. I am going through something similar. The doctor and consultant keep throwing different treatments at me to try to get my asthma back under control. I think the daily 5mg of prednisolone has helped. I am then able to increase it quickly to 40mg when my symptoms flair up. Also, I started using a sinus rinse whenever my nose is runny or congested. That has helped massively at least as far as my sinuses go. However, I still struggle with the asthma symptoms and they still don't know what to do. Good luck and hang in there. Hopefully they find solutions for you soon.

[mikepett2 in reply to emmasue]

Thanks for the reply! It's a difficult one to control, isn't it? I'll mention the prednisolone to my doctor...sounds like it might be worth a go. I've actually just started using sinus rinse in the last few days, and it does seem to be making a difference. Thanks for your suggestions and best of luck getting your asthma under control.

[emmasue in reply to mikepett2]

Thanks and best of luck! x

[Hidden]

Hi mikepett2

Welcome to the community. Sorry to hear you feel your asthma isn't well controlled and it's affecting your quality of life.

It may be useful to talk through your asthma management with one of our specialist asthma nurses on the helpline, they'll be able to help with your questions about medications and go through your situation in detail bit.ly/asthmacall. Please feel free to give us a ring on 0300 222 5800 (Mon-Fri 9am-5pm).

Take care, Dita

[mikepett2 in reply to Hidden]

Thanks, Dita. I'll give that number a ring!

[Hidden]

Hi Mike

Sorry to hear nothing seems to work..I would pester the GP for an earlier appointment, go to A&E when needed or to a walking clinic they can prescribe emergency treatment so you feel better while you are waiting.

Asthma UK helpline is the best to answer your questions.

Regarding a private consultant if you can afford it go to the Royal Brompton Hospital in London. I don't know if you live close by of course.

Take care xx

[mikepett2 in reply to Hidden]

Thanks for the advice! I think I do need to get an earlier appointment, but i'll give the helpline a ring in the meantime. I'll keep Royal Brompton in mind, in case i need to go down that route. Have you been treated there yourself? I know they probably won't be able to offer anything that NHS doctors can't, but seeing someone more regularly than every 3 months would definitely help.

[Lindahj203]

Hi Mike, If I were you, I would demand a change from Fostair. I had well controlled asthma for 20 years, on Seretide and was switched to Fostair late last year, and a change of nasal spray for my previously well controlled allergic rhinitis. I have a severe dust allergy. The ingredient in both Fostair and the nasal spray, was Beclomethasone, and caused an irritating cough, which got progressively worse and it was evident the Fostair did nothing to control my asthma and Beclomethasone aggraveted my symptoms. This year after a sinus infection, two antibiotics and 3 loads of prednisone, I am now on my fourth change of inhaler. Now coming off prednisone, and waiting to see if the asthma and allergic rhinitis will stabilize.

[WinWeight in reply to Lindahj203]

I have the same experience. The doctors tend to load us with medications. If you can just get a symptom free spell of 2 weeks and can improve. Is there anywhere in the country where your allergies are better? When my asthma is so bad I do this. Try to get your nose and eyes under control lungs will follow.

Asthma can get better without adding the whole pharmacy!

I discovered that I'm also allergic to wheat. I confirmed it with excluding it and then when I eat wheat again I start to cough and wheeze. This allergy seems to aggravate the dust problems.

[Lindahj203 in reply to WinWeight]

That is interesting about the allergy to wheat. Think I will try eliminating and see.

[Tugun]

Hi,

You are doing the right thing by seeking answers. Each person is different but by continuing to find answers, you will find things that are helpful to you. I would just suggest that you also look at ways to improve your immune system - also include diet and supplements. Just one more thing - When I was hunting for a mattress, I lay on one for about 5 or so minutes. I was going to buy it but I noticed that my lungs were beginning to close up a bit. It turns out that they had added pyrethrum (a natural insecticide) to the mattress to stop dust mites. I am allergic to dust mites but I am also susceptible to pyrethrum!

Wishing you all the best.

[green881]

I had the shots for dust mites, it was very effective. It's a whole series but really no big deal. It didn't eliminate the allergy but greatly reduced the severity.

Try Qvar and Serevent as preventer.

Sorry you're having such a tough time, good luck!

[Aqua65 in reply to green881]

Hi my asthma can be triggered by dust mites, I didnt know there are injections to reduce the symptoms what were they called? many thanks

[green881 in reply to Aqua65]

Allergy Shots - Subcutaneous Immunotherapy (SCIT)

I'm surprised nobody mentioned it, like especially your allergist? You'll need a skin test and blood test first.

Reducing dust where you sleep is often the most critical, so getting rid of carpets at least in your bedroom is a great idea, if not the whole house. Also change your bedding every so often the mites apparently settle into old pillows, covers and mattress. I just did this a few months ago and it helped almost immediately. Curtains can also be the worst (for me). You can google there is tons of info out there on dust mites.

That said the shots take a long time to work and you need to get asthma under control now, read some posts here, cycle through all the medications until you find some relief.

Best of luck!

[ChrissieMons]

Obviously, I can't suggest any medication as I'm not a medic, but there are somethings you might find useful such as an air purifier to help you sleep and breathing exercises to not only control your breathing but to calm you as you are understandably thoroughly fed up with all this. Make time to take your inhalers properly (always use a spacer and check your technique) and ask yourself if you can gradually reduce the number of times you take rescue inhalers, by breathing more slowly and concentrating on becoming calmer. It might not work, but you could give it a try. I'm glad the nasal rinse helps which means there is hope for a better management plan for you.

[Kashwi1]

I completely get how you are feeling. I am only 21 and have no quality of life what so ever. I have brittle asthma which has been extremely uncontrolled over the last 18monts where I have had 13 hospital admissions. My consultant have finally admitted that he no longer knows what to do with me. I am desperate for answers or some alternative treatment to try as I am beginning to get frustrated!!

[asthmatim in reply to Kashwi1]

Hi kashwi 1 I have brittle asthma type 1 and my resp team have finaly said they want me to go on omalizumab it has mixed results but it is the best treatmeant out there if all other things have failed. I will tell you that it has many sign effects that are known off. The other treatment they also told me about was bronical thremaplasty this is an opperation done in a hospital. I know there are some spelling misstakes in this reply but I want to let you know there is hope out there.

Hope to hear from you soon. Tim.

[Kashwi1 in reply to asthmatim]

Thanks for you reply that is encouraging. Omalizumab was mentioned but was told I did not fit the prescribing criteria.

[asthmatim in reply to Kashwi1]

I don't know you did not fit the criteria when you are have brittle asthma as for over here in hk you most have brittle asthma or a very high Ig E level in your blood test and if you do not only then do you not qualify. It has taken me 2 years of very bad asthma attacks and one stay in the ICU before my doctors have finally made this decision to put me on that drug. It is early days for me but so far so good. Maybe you need a second opinion. I did that and now I have the right team looking after me. Once again I hope that helps. Tim.

[Jenzzie18 in reply to Kashwi1]

I am currently on omalizumab have been since February. It has helped although still have my rough days. I have been put on it due to my very high IGE levels (around 900 at one point) I think it is more prescribed for severe allergic asthma but I may be wrong. The allergy side of my asthma is just one part. Xx

[trisham in reply to Kashwi1]

I have been having issues for the past 2 yrs .. in last 2 mo my advair was doubled to 500 an atrovent added to albuterol in my nebulizer .. along with prednisone. I tried a steam room about a month ago while we were out of town.. I googled it before i tried it). It seems to have helped me some. There are lots of articles on steam an asthma .. Just a thought i hope that your better soon ..

[trisham]

I can only speak for myself but when my asthma is out of control Prednisone is the go to drug for me. Cant believe you have not been prescribed this. I use Advair 500 one puff twice a day .. along with rescue inhaler. I do use saline drops in my nose a couple of times a day.. like u i am allergic to dust also allergic dust mites .. finally pulled up the carpet an put down laminate flooring. I have 2 himalayan salt lamps in my bedroom. I am also investing in cotton mattress covers that zip up all the way around your mattress. That keeps the dust mites off ur mattress.. i wish you the best an pray your. Drs can get your treatment plan figured out!! God Bless