My Dad was first diagnosed with ipf about 2 and a half years ago. For the first 16 months it didn't seem to be affecting him and he carried on as normal. Then he has been on a very rapid decline. Starting with steroids, occasional oxygen, to increasing steroids and levels of oxygen including big tank in the bedroom. He was referred to a specialist in Sheffield who concluded that it was all being caused by his epilepsy medication tegretol. Poor man has not been able to drive since a seizure 14 months ago. We had hoped that he would get some trial medication as he still had 48% lung function. It took 4 months to transfer to a new epilepsy medication and now he is down to 20% lung function left. The specialist wouldn't answer my mum when she asked directly "is he still in the middle stages of this disease". Now he is having to wait for a CT scan and depending on what they find they could try immunosuppressants but this would be a "last ditch attempt". He now has a home oxygen monitoring system where he has to send his results down the line. 1 week ago his levels were 90. He is now down to 75. Does this disease progress this quickly? What can we do?
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