Organising pneumonia

[Cough1234]

Hi all

Today I have had the results of my second lung scan. The first showed possible bronchiectasis for which I have had 11 lots of doxycycline in the last 8 months which is now not even effective with my consistent coughing up of green sputum.

My second lung scan says no bronchiectasis. It shows a diagnosis of bronchitis and organising pneumonia.

My gp will only keep prescribing doxycycline until I see my lung specialist on 16 March which seems ridiculous as surely more lung damage will be done with all the infection and coughing.

Does anyone else suffer with organising pneumonia that can offer advice.

I am 59 year old female and never smoked . I am fed up of feeling shattered all the time.

Thankyou in advance

[O2Trees]

This is crazy Cough. Have you not been asked to provide a sputum sample? Many GPs are woefully ignorant about bronchiectasis. Three more months taking an apparently non-effective AB is potentially disastrous.

You need to get proactive: call the BLF helpline (03000 030 555 office hours) and talk it through with their nurses. Also find out the name/number of your consultant's secretary and explain the situation to them. Then they can speak to the consultant and get you some advice.

I don't know anything about organising pneumonia but for now I think the sputum sample is crucial - it could indicate an entirely different AB - as pneumonia is very linked to bronchiectasis and you don't want yours to develop further, nor do you want to get colonised by bugs if you can possibly avoid it.

Good luck.

[cofdrop-UK in reply to O2Trees]

Snap 02😉

cx

[Cough1234 in reply to O2Trees]

Hi O2 Trees

Thank for the advice and will phone the helpline as advised.

Sputum still showing haemophillus influenza and has done in last 6 samples sent. Showing doxycycline should work but still coughing large amounts of sputum so having no effect

[O2Trees in reply to Cough1234]

Ive had HI in the past Cough, and doxy has never ever worked for me for any infection, even though it's supposedly the first line of treatment. Time should indicate something about efficacy and you've been on it for ages without any resolution.

[cofdrop-UK]

A very warm welcome to you. Has your GP sent off a sputum sample? I wonder what his reasoning is for prescribing you the same ab time after time, which is proving inaffective.

cx

[Cough1234 in reply to cofdrop-UK]

Hi Cofdrop. Yes my sputum shows haemophillus influenza and Doxycycline should work but I think I maybe resistant now

[cofdrop-UK in reply to Cough1234]

Was Doxy the only ab it was sensitive to. I sometimes wonder from my own experience as sometimes what the bug is sensitive to in the lab doesn't seem to know that once it's in my lungs! eg. the doxy I am on now!

cx

[annemarie58]

Hi Cough1234, I like you have bronchiectasis and emphysema, I had several lots of ab and steroids which didn't help. The only thing that helped was a very large dose of ab 3000mg daily for 3 months plus 6 wks of steroids which were reduced every 3 days, this was given to me by my consultant. I don't know if your consultant would be willing for you to try it. Good luck and hope you feel better soon x

[Jomorphey]

Interesting Doxcy didn't work for me either! My pnemonia was still there - specialist presecribed Septrin Forte which had never heard of.... not sure they are working either as still suffering symptoms and now completed the course. Hopefully sample will be back shortly. Hope you get some answer too xx

[Patty24]

You need steroids.....thats the cure...and I would advice you not to wait...pay and go see lung specialist private...u need treatment...it does not respond to antibiotics...the only antibiotic that will help a little is klacid or zithromax....but they wont cure it...go bk to gp...u cannot wait until March.Good Luck.

[Cough1234 in reply to Patty24]

Hi patty

I phoned my gp yesterday who is going to contact the respiratory consultant to see what is the best course of action . Obviously March is too long to wait. Can’t really afford private so hopefully will be prescribed the correct ab’s and steroids soon. Can I ask anyone on steroids if you put on weight which I am not looking forward to but will have to put up with as long as it heals this newly diagnosed condition, organisational pneumonia.

[Patty24 in reply to Cough1234]

That is good news, keep the pressure on and do follow up with your GP( and if you start to feel any worse don't wait, pick up the phone) hope you get some positive support and get to the bottom of this infection.Long term steroids may put a little bit of weight on( but if it is this (COP) you will hopefully start to feel better and more positive so the

[Patty24 in reply to Patty24]

That is good news, keep the pressure on and do follow up with your GP.(And if you start to feel any worse pick up the phone)Hope you get some positive support and get to the bottom of this infection.Long term steroids may put a little bit of weight on but if they cure your illness( u will loose it again after) The other side is u may not put any weight on...keep in touch.Good Luck.