My Mum is recovering from pcp pneumonia, she stopped taking cyclophosmide about six weeks ago and tapered pred down to 7.5mg. The pneumonia seems to have cleared up although she still coughs, so her Dr is now suggesting she stops taking septrin. This concerns me as its unknown territory for me. How long were you kept on septrin after stopping cyclophosmide?
Any input Is welcome thanks.
i was put on septrin after being diagnosed,after 12 sessions of chemo I was taken off it,i then had constant chest infections for 12 months and doctors didn't seem to know why
it was then I actually asked to go back on septrin,and since then ive had no chest problems
Hi Quinster, were you taken off septrin immediately after stopping cyclophosmide? Are you still taking steroids and something like Aza? Has anyone explained how long your immune system will take to recover?
Still on Septrin, had ten pulses of cyclophosphamide. No talks about stopping Septrin, also still on prednisilone and maintenance drug Mycocphenalate.
My husband who has WG came off Septrim when he finished the Cyclo and before starting Azathrioprine
This appears to be a somewhat controversial subject, especially as there is no evidence that I'm aware of to show how Septrin (aka co-trimoxazole) directly benefits vasculitis patients. My understanding is that, at the typical doses used (480 or 960mg), the antibiotic doesn't have thedirect 'strength' to act as a traditional antibiotic on its own. The belief is that it acts on an up or downstream process which in turn helps vasculitis patients.
In my case, Dr David Jayne of Addenbrookes has told me to take 960mg indefinitely. I've been taking it for about 6 years now, before, during and after cyclophosamide (which didn't have any impact on me) and I've been immunosuppressant free for over three years, apart from my annual Rituximab. I have GWP/WG with ENT and respiratory issues.
If a clinician ever asks me to change my medication, my first questions are always 'Why, what are the implications and what evidence do you have for suggesting the change?'. Unfortunately, medicine is far from being a simple science and is probably more akin to the dark arts or alchemy 
but joking apart, it can be unhealthy to simply accept what you're told as sadly, 'doctor doesn't always know best'. The single most important lesson I've learned (after learning to be a patient patient) was to take responsibility for my condition and involve myself, in an informed way, in every aspect of my treatment.
Please would you share any reasons given for stopping the Septrin?
Healthy wishes.
Martin
If it doesn’t make sense, do some research and get to know herbs and vitamins. I always went home and checked on the medication to see if it was helping or hurting us.
I've been taking septrin for years since diagnosis with GPA 13 years ago. When my Rheumatologist Consultant was asked if I could come off it he indicated it would be a permanent medication for me to protect the lungs (which have been the subject of two major flares)
Flaxseed oil is good for lungs, plantain as well as some other natural herbs. Take care
I've been on Septrin (co-trimoxazole) for 5years.. Now take 960mg on alternate days.. One reason is I do get urinary problems and apparently it helps with this..Also have lung complications..
I have had WG since 1994. I have been on most of the treatments, Campath with CD4, Cyclophosmide, Microphenotate, Methatrexane & finished my last course of Rituximab 2 years ago. I am under Dr. Jayne at Addenbrooks & have been on Co-trimoxazole for the last 12 years
I had my last infusion today cyclophosmide and my dr as told me to still take my seprin I have to see him in two wks time
I had last cyclo infusion 2weeks ago ,have started azathioprine and im reducing steroids 15...20 alternative days for a month.Im still taking septrin 3 times a week until the pills run out the supply I got from hospital.Not sure if I will have to take them after that though.
How are you actually feeling?
Has anyone suffered a bad reaction from the dye in a CT scan, if so how did it affect you? 
What exercise do you do and how often? How easy did you find getting your fitness back following treatments and to what level?2 weeks ago I stopped taking Methotrexate 25mg by s/c injection ( it was wearing off after 5 days ) and have switched to mycophenolate.
How long for Rituximab to work for Wegeners?
