After struggling on high dose steroids for over 3 years, and having tried almost everything under the sun (theophylline, methotrexate, silicate free diets etc), I have just started subcut terbutaline. At the moment Iâ€™m on 2mg/day taken by 6-hourly injections (0.5mg every 6 hours â€“ though Iâ€™m off to hospital today to get an infusion pump set up). This seems to have improved my lungs a little, however both my specialist and I feel I would get more benefit if the dose was increased. Heâ€™s looking at increasing it to 12mg however I think trying 6mg first would be a sensible idea. The issue is that I live in Australia and the only form of Terbutaline you can get here is 0.5mg/1ml ampoules (from AstraZeneca). Even at the low dose Iâ€™m on its costing me over $800 per month (4 ampoules per day) and going up to 12mg would cost almost $5000 per month, not to mention it would require me to open 24 ampoules a day. Obviously thatâ€™s not really an option. My question is how does everyone on this mediation in the UK get around supply issues? I read in one post, you could get it in 5ml ampoules. Is this 5mg (1mg/ml)? My pharmacy has told me that the UK and Norway have larger doses available (i.e. 5ml ampoules) but they cannot find any suppliers who make/stock it (they would be happy to import it if they could find a supplier). Does anyone know who the UK suppliers are? My specialist is trying to get the hospitals drug committee to give me approval so I can get it through the hospital but that will take months.
Sorry for such a long post, but I donâ€™t want to have to give up a medication that seems to be working because of supply issues.
Hope everyone is well (or as well as you can be),