After being on a combination of methotrexate and leflunomide plus the usual hydroxychloroquine I suffered 3 bouts of pneumonia in 7 months causing bronchiectasis. Anyone else developed this?
Medication was stepped down to just hydroxychloroquine and mepacrine.
Will start azathioprine (imuran) if blood test comes back ok as it's not as powerful as first combination.
Looking for experience of azathioprine and any recommendations dealing with bronchiectasis, finding the deep coughing hard going.
Hello Purplebutterfly, there's a post here with some folks experiences of azathioprine:
healthunlocked.com/lupusuk/...
So sorry to hear of your bronchiectasis, it must be very distressing, the British Lung Foundation forum on HUK will have helpful tips and support if no-one here can help
Be well, stay safe xxx
Thank you for your reply, I'll take a look on the BLF. Take care x
Hello Purplebutterfly
Not sure if I can help but I can assure you you aren't alone. My first symptom of autoimmune disease was interstitial lung disease. I was treated with HCQ and steroids, which brought it under control. However, I was left with some areas of bronchectasis. In the 4 years since then, I've just had the one bout of pneumonia. The latest hi res CT scan shows "moderate" (?!) areas of bronchiecstasis throughout both lungs, but tbh, apart from being somewhat short of breath, it doesn't give me too much bother. I really feel for you over the cough though, it must be exhausting.
I was started on AZA about 18 months ago, and it was fine - but only for about a month. Then I woke up in a state of near collapse and couldn't tolerate it any further.
For me, the key thing has been not to take for granted that the doctors will anticipate trouble ahead. I do a peak flow measurement every week or so and try to keep track of things so as to be able to remind my clinicians of when I need other monitoring test like lung function tests, blood CK levels (I had myositis) etc. x
Hi whisperit,
Thanks for your reply. Peak flow meter is a good idea. I had my last hi res ct in october- before the last pneumonia. There were areas then with small area of collapse and enlarged lymph node (or nodule) The symptoms are worse now. Specialist nurse talked about some sort of medication to help clear the lungs but I guess I need to wait to see what she wrote in the letter to GP. (Only saw her on Friday).
I'll get a peak flow to go with the rest of my tests (blood pressure, urine dipsticks...Gonna look like a doctor's surgery soon lol)
I went for a scan 3 yrs ago and it showed mild bronchiectasis and recently I have been coughing my lungs out and have been referred for anorher CT scan to check if this has gotten worse. I have a very tight chest causing difficulty in breathing. I last used merthotraxate 10 years ago as it was affecting my liver. I am on hydroxychoroquine.
Sounds like me, chest tightness and productive cough. No infections when I was just on the methotrexate and hydroxychloroquine. Things got bad when they added leflunomide to the mix.
As I haven't been on either for a few months my joints are painful and everything is an effort.
They won't even give me my usual steriod injection as it will mildly supress the immune system so if there is any infection left in lungs it'll only cause it to flare up again.
Hopefully latest bloods will be ok and can start azathioprine....
It's all fun and games with our immune systems.
Hope you have a restful day x
Talking about suppresing the immune system, I was suprised when they prescribed am immunosuppresive drug called mycophenolate mofetil because they said my immune system us to active and its attacking my normal cells so they have to suppress it. I have been using it for few years now. Currently I have less joint pains. Only when it is cold.
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