Newbie having a tough time: Hi everyone... - Asthma UK communi...

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Newbie having a tough time

LisaLuv3000
LisaLuv3000

Hi everyone.

I'm new to the site and I'm looking forward to chatting to you all. :)

I was diagnosed with asthma about 12 years ago and have been lucky have had it under control for most of that time. I went from the brown qvar beclometasone inhaler to the pink fostair beclametasone/formoterol preventer about 4 years ago after I kept getting chest infections and it helped. However, I've now had two pretty bad flare ups of my asthma in the last 4 months.

In March, I reckon it was triggered by a chest infection. I ended up having 3 weeks of 40mg a day prednisilone, two weeks of clarythromicin followed by 2 weeks of dioxycycline, and was put on seretide 250, 2 puffs twice a day. I was seng for a chest xray that thankfully came back clear and after all this my asthma calmed down. I then struggled with severe fatigue and a horrible rash thanks to steroid withdrawal.

Three weeks ago I went from fine to my Peak flow dropping and the coughing and wheezing began again. After a week of steroids, nothing changed and I managed to see a pretty good GP who actually had read my notes and listened. I explained that I have a brother and sister with severe asthma and that they have found montekulast and spirivia helpful. She was not keen on spirivia because it's technically for copd but did start me on montekulast. Long story short, I missed 2.5 weeks of work and had 2 weeks of pred and a week of dioxycycline. Oh and I've been taking Ventolin, 4 puffs every 4 hours. Still coughing quite badly, and I'm still waking up coughing a few times a night, but asthma is under control.

I'm seeing the asthma nurse on Wednesday and I want to push for further testing. When I've seen a doctor or nurse, they've been keen to point out that its been hot and pollen levels are high, but I've dealt with such environmental factors before. When I was well in May, I led a School trip of 40 teenagers to Berlin in incredibly hot weather and was ok.

I'd like to think I've been unlucky but I can't help but worry that I'm deteriorating, especially because if how bad my sister gets.

I'd really appreciate any advice on what I should be asking for and how I can push for further support. These episodes have been quite scary; I have been very lucky in the past.

Any advice would be appreciated.

Thanks

:)

7 Replies
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Do you have a productive cough? If so, get a sputum sample tested to see which bugs are in your lungs. From there, if targeted ABs don't help, you might need a CT scan to test for other complications (e.g. bronchiectasis). In the first instance though, it might simply be that the ABs haven't quite killed the infection, which then tends to make it return with added vigour. Doxycycline is a very good AB, but you might need a bit more of it.

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Hi LisaLuv3000

Welcome to the forum. It might be worth giving the Asthma UK specialist nurse team a call before your appointment on Wednesday to talk it through. They'll be able to provide advice and support about what to ask for in your appointment and go through how you're feeling.

You can give them a ring on 0300 222 5800 (Mon-Fri 9am-5pm).

Take care,

Dita

See a specialist as you shouldn't need all that Ventolin. The prospect of the unknown is making you nervous, understandably, and that may make your condition worse, so find out all you can from a person who really knows about asthma.

If you are a teacher, as it seems, take advantage of the summer holidays to relax and find relaxation methods which work for you. Good luck!

Thanks much everyone. I have just had a really helpful chat with a nurse from Asthma UK and feel ready for my appointment with the asthma nurse this afternoon. Going to be asking for a referral to a specialist, a spirometry test and a new nasal spray called Avamys.

My coughing fits are less frequent in the day now thanks to rest and plenty of hot drinks. I just want to be able to sleep through the night.

Thanks again!

With regards to spiriva I have been placed on it despite no COPD. I have severe asthma and I have had it added into all my other drugs to try and help. Hope you can get a referral and things start improving. Xx

Hi everyone,

Thanks again for all the help and advice. I'm finally starting to see the light at the end of the tunnel after all this time!

I called the asthma nurse UK helpline, which was very helpful, so I felt well-prepared for seeing the asthma nurse at my GP. We did an action plan and she gave me a rescue kit of prednisilone and dioxycycline, but didn't think spirometry was necessary and said she couldn't refer to a specialist; I would need to see a doctor for that. Overall, her message was to be patien and wait until I'd been on Montekulast for a month. I was a little frustrated so I booked an appointment to see a doctor. I'm very glad I did!

The doctor did point out my weight gain, which was a bit upsetting given that I'd been going the gym regularly before all this kicked off. I asserted that my weight had always fluctuated but I'd never had issues like this before. He seemed to get the hint and took what I was saying more seriously after that, thankfully. He changed my antihistamines for hay fever (I was on cetirizine and I'm now on fexofenadine) and put me on tiotropium, as well as my normal preventer inhaler. He sent me for blood tests and said he'd refer me to a specialist if the new meds didn't have an impact.

I'm glad to say that these new meds seem to be helping; I started to notice a difference after a couple of days. The coughing fits are far less frequent, more productive and less straining. I should get the blood tests back soon; they took 3 different vials worth so they were testing for lots of stuff.

I'm hopeful that this flare up will all be over soon!

Thanks again!

Lisa

You're on a lot of Ventolin, did you say 4 puffs every 4 hours? What did the doctor say about that? I'm with others that you need to work to reduce.

In addition to sorting out the anti-histamines (which thankfully have worked!), if I were in your shoes I would try to continue to try different preventer combinations. You can get salmeterol in powder form (Serevent Diskus) and combine it with Qvar which you did well on before. I think nowadays they have labelled Qvar to max out at 320 so it's something worth trying with Serevent. Some of the new powders have finer particle sizes and may get to different part of your lungs. As far as I know they don't make a single beclomethasone/salmeterol combined delivery so you have to make your own. FYI I do poorly on fluticasone and I don't think they offer fostair in the US yet.

Other thing to try alongside is cromolyn I had this in childhood.

Of course sleep, balanced diet, eating regularly, exercise and trigger control/cleaning are all good as well as meds it all feeds off each other.

I am sorry you have having such a tough time and hope you will soon find the magic mix.

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