Problem with Bronchiectasis

[katie666]

Hi. I was diagnosed in 2009 with the very rare Yellow Nail Syndrome which comprises sinusitis, lymphoedema and bronchiectasis. Since then, I have had infections of the sinus and chest requiring antibiotics 3-4 times a year. Until this year, I took 500mh Amoxycillin for 14 days but in April this year, I developed a really itchy rash after 2 capsules and the GP changed them to Doxycycline 200mg for 14 days. I started with a chest infection 3 weeks ago and my GP sent off a sputum sample on Monday this week. I am awaiting my GP to prescribe the relevant antibiotics but they seem uncertain about which ones to give me. I am going to ask for doxycycline until a decision is made but will also ask for a referral to a bronchiectasis specialist now rather than my general respiratory consultant.

[Hidden]

Hi Katie. Many of us with bronchiectasis find amoxicillin doesn't work anyway, and doxycycline is a fairly common "rescue" ab. Azithromycin is good too, but many of us take that prophylactically anyway, at a reduced dose. Your GP sounds on the ball, giving you that dose and for 14 days. Lots of them try & fob bronchs off with 5 or 7 days, which is useless. It isn't a good idea to wait 3 weeks to start on antibiotics, though. Ask the GP to provide you with a spare pack so you can take them as soon as you get symptoms. You should also have spare sputum pots & an MCS (microbiology) form so you can do a sample before you take the abx, and drop it off at the surgery or, if it's near enough, the path lab at your hospital.

I've heard of YNS, really, really rare. You could be our only member with that! Is it something to do with Wilson's, and excess copper, or is that different? I'm amazed you're not already seeing a bronchiectasis specialist, definitely ask for that referral.

[katie666 in reply to Hidden]

Thank you so much for your reply - I was just so frustrated yesterday as my regular GP wasn't at work and the other GP's are loathe to hand out prescriptions for antibiotics which is great for the majority of people. Anyway, he rang me eventually and agreed to prescribe the Doxycycline for 14 days when I mentioned that I have bronchiectasis. I always had a supply of amoxycillin but when it brought me out in a rash this year and I started with Doxycycline, it escaped me to get a spare pack (my Dad died in the meantime and I had to arrange his funeral & wind up his affairs) I will definitely see my own GP again next week for another supply of Doxycycline for emergencies and ask for spare sputum pots, bags & forms. I'm only 3-4 miles away from my path lab at the local hospital so I can just drop samples in there.

To be honest, I was so busy trying to find out about Yellow Nail Syndrome (YNS) of which there is scant info, I concentrated on the lymphoedema which was giving me lots of probems and I'm afraid that I neglected the bronchiectasis. I had an awful cough but otherwise, I had more sinus infections than chest infections until this year. I am usually nursing one finger or another as the nails separate from nail bed then I catch them and need to remove them as they are so painful until they are removed. The research on YNS suggests that it is an auto-immune disease primarily affecting the lymph system. Other people with YNS on a forum/Facebook page, all seem to have similar backgrounds - sinusitis, lymphoedema, thyroid problems and some have bronchiectasis but not all of us. We try and help each other by sharing what little info which we do have. I am definitely going to look into a Bronchiectasis specialist - there is a unit in the Freeman Hospital at Newcastle, UK, which is about 20 miles away from me. I can self-refer via my GP. I will also look at Azithromycin for future use.

Thanks for listening to my tale of woe.

Katie

[Sohara in reply to katie666]

You got great advice from Hanne, and I cannot add anymore info than she did. Bronchiectasis specialist are very rare in the UK , but there are several hospitals that do have specialist units for Bronc make sure you get referred to one of those centres. You may be lucky and there is one up near you

Good luck with everything. YNS does sound a very difficult condition to treat

Love Sohara

[katie666 in reply to Sohara]

Thank you Sohara. I do seem to have found a gem in the unit at Newcastle - they also teach physio exercises to 'get rid of the phlegm' which I need to do as I almost vomit at times. I have even burst blood vessels in my eyes due to coughing so hard. I don't know if this is common or not.

I am now looking for an air purifier for our lounge and bedroom to try and give my lungs the best chance of staying as clean as possible. This is a minefield as all manufacturers claim to have the best purifier. I just know that it should have a carbon pre-filter and a HEPA filter but no ionizer - the search continues.

Katie

[Greatbanks]

I'm on those antibiotics again constant chest infections I ve bronchitis add from child then asthma. Now COPD ! They did not diagnose well back in the day so chests were not treated correctly . End result conditions got worse now COPD with it . Wish u luck getting treatment you require .

[katie666 in reply to Greatbanks]

Thank you for your reply. Sorry to hear about your bronchitis & asthma and COPD! That's a lot to deal with. I have always been relatively healthy and ran 40 miles a week till I was 40 years old so my lungs mush have been in good condition. My Bronchiectasis is due to my syndrome and fortunately, only started in 2009 so I am lucky in that respect. I also hope that I get my future treatment/monitoring which I require.

Katie

[Greatbanks in reply to katie666]

It's amazing that you ran like that wow

[katie666]

I used to run local 10 k's & half marathons - maybe 5-6 time a year. Best Half marathon time was 1 hour 50 minutes, 10 k in 43 minutes and I once ran a 5.30minute mile (downhill with a following wind) Cannot believe it now - it was another life.

Katie