Never Ending Cough!

[Bakbre]

I will apologise now for this very long post! Any help or information would be appreciated.

I have UCTD, RA & Small Fibre Neuropathy and was diagnosed originally in 2004 with just the UCTD.

I wrote on here 18 months ago regarding a never ending cough/chest infection that I kept getting antibiotics for. It would clear up but then back it would come back. My GP sent me for two chest xrays and 3 CT scans and they showed nothing. After yet another chest infection he wrote to our local Chest Consultant and asked for an emergency appointment. As sod's law goes when I went to see him, my cough wasn't very much in evidence whereas the week before I was coughing for England! Anyway he said that he thought it was nothing to do with my chest but was something to do with the back of my nose, though when I asked why would that make me cough, he didn't really give me an answer, but mumbled something about air/sputem getting into my airways. He also took a blood test and a sputem test. He then arranged another chest xray in another weeks time but this time I had a dye inserted into my veins and he told me he would send the results to my GP.

So back to my GP again and he showed me the letter he had received from the Consultant. In it the Consultant was more or less was telling the GP off for asking for an emergency appointment as he didn't think I was an urgent case. My GP wrote back to him (showing me the reply as well) telling him that as far as he was concerned it was very urgent and that he wanted me to be seen again asap and more tests needed to be carried out. 2 days later I got a quick appointment with the Consultant (I had had the dye chest xray by then). This time the infection was back with a vengence. In between coughing I told him that I had seen his letter to my GP and I was concerned that he was not taking my illness seriously enough. With my other problems I thought that I should be given at least a little urgency because 18 month's worth of chest infections/coughing was not right, especially with my other problems. He said that his letter to my GP was not intended to infer I was not urgent but at the time he thought it wasn't my chest that was the problem but now he knew it was.

That is when he told me that he had discovered that I had got a disease called Bronchoietasis. I won't go into too many details but the continuous infections have actually done damage to my lungs, widening some of my bronchial tubes. He said there is no cure but it can be treated to stop the infections so no more damage could be done. I am now on 2 weeks worth of antibiotics and 1 week of 300mg of steroids to try and get the infection under some sort of control. I have been given this breathing tube thing which I have to go to the Physiothery department at the hospital to be shown how to operate it. I will also apparently have to be on small doses of antibiotics in the long term.

The problem is after 1 week of the antibiotic/steroids I am still coughing fit to bust. Has anyone else suffered from this and has someone got any suggestions to help stop me coughing. I have tried various cough syrups, lozenges, inhalers and a nebuliser but nothing seems to help. I am going absolutely crazy, not sleeping and at the moment look like something the cat dragged in. Even the dog's getting fed up with me!

HELP!

[svfarmer]

Hi sorry can’t offer any advice but it’s horrendous what you have been going through - sending big hugs 🤗

[Jmiller623]

Have you tried guaifenesin/mucinex? I found that this help dry my lungs and sinuses out. All this mucus just started coming up in blobs when I took it. Now I’m hooked and take it almost everyday. It’s helped with my breathing and cough tremendously.

My usual regimen is allegra twice a day, steroid inhaler twice a daily, daily saline nasal rinse followed by nasocort spray and guaifenesin. The shortness of breath and constant mucus production from lungs and nose drove me crazy but CT always showed nothing despite disgusting mucus. This regimen has improved my quality of life. Obviously discuss with your doctor.

I feel for you. Hope things get better. Your GP sounds like a good advocate.

[Bakbre in reply to Jmiller623]

Thank you for your reply. Luckily I have an appointment with my GP tomorrow and I will discuss it with him and yes you’re right he is very helpful and he does seem to back up his patients, at least he has been very good with me.

I hate this disease and how it throws things at you. You get an illness, they treat you and you get it under some kind of control, then along comes another illness and on it goes again.

I am sorry I know I am whinging and usually I am a very positive person but at the moment I am feeling very sorry for myself and negative.

Eventually I am sure I will start to feel better and I will come out fighting - that is as soon I can stop coughing!

Thanks once again for taking the time to reply and I hope you continue to feel better.

[Jmiller623 in reply to Bakbre]

I’m sorry Bakbre. Complain away. This illness alternates between shallow hills and very deep valleys. I hope you find a hill soon. Sending hugs your way. Let us know how the GP appt goes. ❤️

[Krock1]

I have had a very similar history over the past few years. I had a persistent cough for about a year that would be treated with antibiotics and b12. The symptoms would die down but it never really cleared up. My lungs were usually clear until but in the end i got pneumonia. About that time the pulmonologist figured that the real problem was GERD. This is a side effect of Mixed Connective Tissue Disease, which I was diagnosed with a year later.

I control a lot of the symptoms such as the coughing with changing my diet. I found that alcohol, coffee, chocolate and certain other foods can generate GERD episodes. Also, antacid helps. Recently, i was also diagnosed with bile reflux. When I agitate my system one of the symptoms is a persistent cough generated in my esophagus.

[Bakbre in reply to Krock1]

Thank you for replying. Luckily I have a follow up appointment with my GP tomorrow and I will discuss all this with him. When I was first diagnosed it was with undifferentiated connective disease, that was in 2004 but this coughing only started about 18 months back. Since then in 2015 I started with RA, then Small Fibre Neuropathy and now this! Like

you I start coughing, then antibiotics, it die’s down, I stop taking antibiotics, back the cough comes!

I hate this disease, not only for me but for everyone who has to suffer Lupus illness AND what we have to put our families through.

Anyway I’m sure it will die down eventually and they will get it under some kind of control but I only hope that that comes quickly!

Again, thank you for replying and I hope you are feeling better as I know getting the diagnosis can sometimes be a very long time and it’s only then you can get treatment and some kind of relief.