Consultation was positive. Attention was spotlighted upon the upcoming operation for bronchial stent/dilation. If another infection occurs in the meantime I will be admitted to hospital but the procedure will be carried out anyway.... it will not be put off. On the medication side it is possible I will be continuing with Rituximab AND Cyclophosphamide. This to be discussed in depth with Rheumatology. Although inflammation is present in the lungs it is recommended that there should be no increase in steroid dose so as not to compromise procedure.
I asked about the cough, which is a bugbear, but no relief from antibiotics is allowed. After the wide range of antibiotics I have had, they are hesitant about introducing another one..... so three weeks of coughing is in line, unless I can find some natural, non invasive way of controlling it. Basically the phlegm produced is too large/lumpy to get past the reduced diameter of the bronchial tube. it gets discharged in small pieces only. After the distress caused the last time with coughing too forcefully (burst blood vessel) I am taking this very carefully.
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No follow up apart from the operation on the 3rd April.... can't wait.
Sorry to hear about your ongoing problems.
Have they tried a medicine called carbocysteine? It's a mucolytic, basically it thins the mucous in your lungs and can make it easier to cough up. It's used a lot in patients with COPD.
Have they checked your immunoglobulin's ( especially IGG ) to make sure you aren't overly immunosupressed?
I have been using carbocisteine since day 1. I don't know about my immunoglobulin but I will wait until after the procedure before I make more waves. I will bring the subject up at the medication review.
Hi there i also have WG,i suffer badly with getting mucus up so my chest specialist put me on carbocistine tabs. 6 a day and that loosens it all, i had a cough for 3yrs and they have just discovered it to be my blood pressure tabs(Ramapril) stopped them and the cough has subsided.
Hi SandieB, The heavy mucus on my chest only started when I was diagnosed with pneumonia Nov/Dec 2016. Prior to that it was controlled by carboscisteine, but the pneumonia changed it into a whole new ball game. The good news is that it is beginning to lessen now. Thanks for your response.
Have you seen a physio? They teach you how to control the cough and give you breathing exercises to help bring up the phlegm. I hope your op gives you some relief.
Hi Mooka, I saw a physio in hospital and he showed me the breathing exercises. They do help up to a point with the phlegm. The cough is a different matter though. It is very hard to contro.... it seems to have a life of its own sometimes. However it appears to be easing now. Thank you.
Latest communication from consultant.... Stop Methotrexate immediately. Rituximab not to be continued and Cyclophosphamide is scheduled for 6 infusions in April. All other medications are OK. I have a pre- assessment for bronchial stent fitting on Monday and the procedure to follow on April 3rd.
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