Hi, diagnosed 3 years ago with WG and started Sirolimus treatment 5 months ago. Have been reading this site on and off for a year or so and wonder if anyone else has been on Sirolimus without other meds and their experience?
My WG is all ENT related, and I am also asthmatic. So just on Symbicort inhaler and Sirolimus - next surgical review in April. So far Sirolimus seems to be holding off the inflammation and only down side has been a few mouth ulcers and chest infection following a cold.
Have you checked with a rheumotolgist for further treatment like rituxamid i go to two rheumotolgist one is at yale - my primary and the second is doing a study forthe natioal institute of health( NIH) and he has seen over 400 WG patients and both of them agreed to go on this path if your interestedin looking up to seeif go to the wegeners site to see if theremight be a centernear you my diagnosiswas 18 months ago with kidney, artery & vein stenosis,shortness of breath and a stroke plus nowwith mild to severenuerapathy in both legs good luck with your treatment and i hope some of thisinfo is helpful for you
By way of an update, after 6 months on Sirolimus I've had surgical reviews and I'm symptom free. I'm declaring that a success. It's far less toxic than all regular treatment options and I'm surprised nobody else has been tried on it...
Hi it's only taken me a year to rely - apologies.
I didn't want any drugs through the I/V route, 6 hours of being medicated this way not going to end well and the stats didn't seem compelling.
Sirolimus for 6 months held off issues for another 18months. Just had surgical review and inflammation back but limited and no airways obstruction, so I'm going same again and started treatment this week. Fingers crossed.