Diagnosis is Severe Asthma with Fungal Sensitisation. SAFS.
Started on Kenalog (triamcinolone) 2 months ago and can breathe so much better now. Interested to hear from anyone else with similar experience. Having depot steroid instead of multiple courses of oral steroids seems to have worked thankfully. Just concerned about long term side effects. Anyone else had Kenalog long term?
Hey, I just got diagnoses with Aspergillosis and have had severe asthma for four years. Just kind of looking to figure out what to expect in terms of treatment for the fungus and whether or not it will cure my asthma, like one doctor is telling me. I haven't found any good information on this type of infection....
I only know what my GP told me if it should turn out to be Aspergillosis, that it would be managed by taking antifungals for the rest of my life and when caught early can be well managed.
I have a neighbour who suffers terribly & spends a lot of time in the Royal Brompton. Her husband told me that once there are pockets of the fungus in the lungs they're there & that's that. The pockets show up black on ct scans & sometimes are mistaken for cancer.
I will be looking up this Kenalog. All the best, P
PS not seen much about Aspergillosis on this site. Perhaps there are other sites.
Hi,
I am just awaiting diagnosis with aspergilloma/and aspergillosis. On my way to an appointment at the National Aspergillosis Centre in Manchester next Friday. The Docs down here just don't know enough about it. Would love to know how you are getting along.
Sian
The Kenalog was to get my lungs functioning better especially through the winter months. I had 7 courses in all. Further to that I fitted the criterai for Xolair so have now started on that and have had a significant improvement. The Aspergillosis website is very good and gives lots of info both for patients and for healthcare professionals. Good luck with your progress. The Centre in Manchester is full of experts to point you towards the best care and treatment.
Hi, I also have SAFS. Initially I was treated with kenalog injections after high doses of prednisolone for many months. However after the first dose I ran into problems within a week after the first injection. I developed steroid induced diabetes and was really poorly on an insulin pump for 3 days then commenced on insulin injections for times a day. I was in hospital with this for 9 days. Needless to say I was very reluctant to have a further kenalog injection but my consultant encouraged me to continue with the treatment which I did. I had approximately 6 months of these injections. Eventually after 18 months the diabetes disappeared thankfully.
My respiratory consultant has since told me that I was extremely unlucky and that I was the only patient of his who had developed diabetes following kenalog. So do not be alarmed as it may help you.
After kenalog I was then started on methotrexate which did not help. It was only when I started on amphoteracin nebulisers by my consultant in the national aspergillosis centre that my life was transformed. I had been off sick from work for 14 months, however within 6 weeks of starting these nebulisers I was able to climb the stairs without stopping on every step for breath. Eventually after 6 months of unpaid leave from work I was well enough to return.
Unfortunately things have taken a turn for the worse in recent months due to the development of yet another condition and I have had to stop these nebulisers on the advice of my respiratory consultant. I am hoping that I can be re started on these nebulisers soon in order to start improving.
Good luck x
PS It is good to speak to a fellow SAFS patient
Does anyone else do this
Nitrofurantoin and dizziness
Has anyone else got Polycythaemia?
Anyone else had this - blocked nose on oxygen 24-7
