What more

[Happy-51]

Hello

Well I’m back to my asthma specialist Monday for my ct results.

My PF has been much lower since I last saw him and I’m constantly wheezy now.

I’m on montelukast 10mg, seratide 250 and ventolin inhaler.

What more could I go on? I have had brittle asthma since 1 years old.

I’m constantly told to lose weight but with course after course of steroids it’s impossible.

I’ve very much neglected my asthma over the last 10 years, treating it with contempt because it annoys me so much.

I’m taking my ventolin 10 plus times a day and still wheezy so I guess something’s going on.

I just want to go armed on Monday and get the right help.

[EmmaF91 Community Ambassador]

Hi - sorry to hear you’re regularly wheezy 😔

There is still lots out there to try! For me the best preventer is relvar Ellipta 184, but I also take spiriva - a long acting anticholinergic bronchodilator (I use the handihaler which is technically only licenced for COPD but I can’t take the respimat version which is an MDI). There are also LABAs you can take on top of the preventer/reliever pumps.

There are also theophylline/aminophylline tablets which are a pain but very good (you have to have your levels monitored by BTs and are advised to avoid caffeine as it can alter your levels).

If you have allergic asthma you can also try out the various antihistamines, and most find fexofenadine the best. For allergies and PND theirs also nasal sprays and I’ve found avamys the best (it’s a spray not a squirt 😉).

Then you’ve got maintenance pred, which isn’t fun but most are on low levels (mine is 10mg).

After all of this there is also biological treatments if you are eligible for them. Xolair for high IgE, mepolizumab/reslizumab for high eosinophil count.

I hope this explains at least some of the options out there!

If you’re using your ventolin that often then you definitely sound like you need something more! Good luck on Monday.

[Happy-51 in reply to EmmaF91]

I’m on fexofenadine already, and whilst it helps all little it doesn’t control my allergies which are MANY.

The trouble with nasal sprays is my nose bleeds really badly when using them.

[EmmaF91 Community Ambassador in reply to Happy-51]

Fexofenadine 120 or 180? I’m on the 180 which works a bit better but still have to take an OTC antihistamine on top if I come into contact with an allergen. My GP is aware of this and happy for me to do so.

Avamys is the only spray I can use, as the rest make me feel ill and cause more nosebleeds... I still get very mild nosebleeds occasionally. I have to take nasal drops in the summer which help more than the spray, however usually cause more issues (and tastes worse 🤢)

Good luck getting it all sorted

[Happy-51 in reply to EmmaF91]

I’m actually not sure, I will have a look, hoping for a overhaul come Monday as nothing is helping right now.

[Lysistrata Administrator Community Ambassador in reply to Happy-51]

Crossed fingers re your appt! Maybe ask about Dymista - a friend with severe allergic asthma is on it after being on Avamys and said it was definitely better for controlling hayfever - thoigh mot sure if the nosebleeds issue will be better. You might be a Xolair candidate with all those allergies which may help with them generally as well as the asthma.

[EmmaF91 Community Ambassador in reply to Lysistrata]

Dymista is a steroid/antihistamine mixed nasal spray... worked well for me but again short term (only in hay fever season) as I did get more nosebleeds on them (and wanted it to be effective next season 😅)

[Kelshaw2011]

Hi i am on seretide 500 flixotide 500 braltus zonda and ventolin inhalersfor my brittle asthma but also have 6 5mg salbutomol nebulisers every ,day 15mg pred ,uniphyllin twice daily 500mg, carbocisteine, montelukast ,azythromycin 3 times a week ,fenofexadine , dymista nasal spray adcal and alendronic acid i also have oxycodone and gabapentin for pain and am still not controlled i am due to start mepolizumab injections and have bronchial thermoplasty aswell my consultant says its a very aggressive my asthma i also take lansoprazole ,gliclazide for ateroid induce diabetes there is a lot of medication out there but wot will work for one might not work for another its trial and error but i have been uncontrolled for 3 years now hope u can get ur medication to control ur asthma soon

Good luck

[Happy-51 in reply to Kelshaw2011]

Wow that’s an awful lot of meds.

I think as I have avoided asthma specialist for so many years my Gp has just been giving me anything. Totally my fault for not bothering.

Being this ill recently really has given me a huge kick up the bum and now I’m using a spacer, doing PF etc.

Before I just had given up caring.

I didn’t even know about most of the drugs about now so thanks for the reply.

[asthmatim]

I am not sure what type of brittle asthma that you have. But was on most of those before but I still had symtoms and attacks while I was just on these. My proffessor tryed me on Spiriva respimat and this stoped my night time attacks. But I still had daytime symtoms so he try me on thyeothlin and azthmicine (sorry for the spelling). The azthmicine use to be used as a antibiotic but a medical study in Australia found that it can really improves brittle asthma reactions in the day time. Both of these made a big difference to my condition. Unfortunately may health has still declined but it is not dew to the medicine fault it is more to do with the scarring in my lungs. So now I am about to have my 2nd bronical thermoplasty. The 1st one went ok, so my respiratory team said that they are happy for me to have the next one. Once have that I will have one more. Hopefully it will give me a better life after the 4 and a half years of hell that I have been through. The best thing that I can tell you is do your own research and find medical papers on the internet. The only person who knows your condition better then anyone is you. Stand up and fight for your care. In my walk with this horrible disease is doctors and other allied health workerd only treat the numbers and not the person. As hip-hop songs goes: You got fight for your right to be healthy.