Patients & Carers meeting August 2017
By GAtherton
DateSpeakerTitleTime startsDuration
August 2017Azad AzizA new clinical trial to test a drug designed to treat ABPA and SAFS0’00’00secs1’29’30secs
Patient NeilHaving a PEG feeding tube fitted and how easy it is to use and maintain
Led by Graham AthertonView meeting

Many of the people who attend our clinics have allergic forms of aspergillosis for example allergic bronchopulmonary aspergillosis (ABPA).  ABPA is characterised by high levels of IgE in the blood which causes many of the allergic symptoms that are so difficult to live with. Treatment with steroid medication (e.g. prednisolone)  has been used for decades to reduce the amount of IgE in the blood of ABPA patients and thus reduce symptoms, but those who have taken steroids will know that those drugs have a number of unpleasant side effects too eg weight gain, high blood pressure, bruising, blurred vision and many more (see NHS corticosteroid information )

Luckily doctors have started to find ways to cut down on both IgE levels and steroid dose. Many of our patients with ABPA will be given an antifungal medication which will usually reduce IgE and then allow steroid dose to be gradually reduced with your doctors help.

For some time it has also been possible to have an injection of a medication known as Xolair and that can very effectively reduce IgE levels, however it is not often used to treat ABPA as it is really designed to treat severe asthma. Xolair can also sometimes suppress a patients’ immune system a little too much and cause more frequent lungs infections and for many patients that is difficult to manage.

Happily there are new drugs in development that work in a similar way to Xolair so will reduce the need for steroids but these new drugs are specifically aimed at IgE caused by fungal infections. Consequently they should be much better suited to treat ABPA or even severe asthma with fungal sensitisation (SAFS) as both are caused by a reaction to fungal infections caused by Aspergillus. The National Aspergillosis Centre are one of the centres participating in a trial of these new drugs and suitable candidates for the trial will be approached in clinic, or if you want more information contact our clinical trials manager at Azad gave our patients a talk on this trial at our latest patients meeting (Friday August 4th) so you can also listen to the recording (see link below).

Aspergillosis patient Neil gave an illuminating talk in the same meeting on the benefits of having a feeding tube (PEG) fitted to allow supplementation of your normal diet. This is used when a patient is unable to put on weight and it too thin or is losing weight. Neil has put on 13 pounds in a few months thanks to his PEG and strongly recommends anyone who is asked to consider having a feeding tube to proceed with no misgivings. Thank you Neil!