Co trimoxazole: Hi, And a good New year to All... - Vasculitis UK

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Co trimoxazole

sorefeetsoldier profile image

Hi,

And a good New year to All.

How long should a person take co trimoxazole??

Any knowledge is appreciated.

Thanks

17 Replies

Hi. It depends on if it's been used as treatment or as a prophylaxis. I take a low dose for 4 months over winter.

I'd expect when used as treatment, it wouldn't be used beyond a month.

Thank you for your reply

Sfs

Hi, I have been on it for approx 7 years. I am now down to taking one tablet 3 times a week

Hi chsskg,

I have been taking one 80/400mg tablet every day for 7 years, I see I'm not alone.

Thanks again

Sfs

Hi, I have GPA and have been taking Co -trimoxazole since diagnosis 6 years ago. My Consultant (Rheumatologist) told me that I would need to take it for life as a prophylaxis against chest infections. I take it 3 times per week.

Kenneth profile image
Kenneth in reply to egre

I have GPA & have been on Co-trimoxazole for about 12 years now, 3 times a week. Had my treatment of rituximab on 21st December. I am now having it only once a year

Hi Kenneth,

Thanks for your reply, I have been on it for 7 years (1) 80/400 mg tablet per day.

Reason I'm asking for info ..like you I take to avoid pneumonia .

4 weeks ago I had pneumonia and was treated with amoxicillin.

So I was thinking of stopping the co trimoxazole !!!

Thanks again

Sfs

sorefeetsoldier profile image
sorefeetsoldier in reply to egre

Hi egre,Thanks for your reply I also been taking one 80/400mg per day for 7 years and recently had pneumonia which was treated with Amoxicillin.

Many thanks again

Sfs

Hi. I have GPA and have Rituximab every six months. I’ve been taking one tablet each day for nearly 4 years now as a prophylactic against pneumonia. The consultant always double checks with me that I’m taking this daily. Thanks.

I take it every day. I asked my consultant about this at my last visit. He said its primary purpose is to prevent sinus infections, since they find that the sinuses never fully recover and prone to infection even in remission.

Hi, I've been on septrin since 2019. I have GPA since 2010. Initially sinus and lungs - induced for16 days. Flared in kidneys in 2019 from probably a Prolia injection. Nephrologist has me on Septrin since as a prophylactic. I live in Ireland btw. Used to be on methotrexate until that flare but switched to rituxi. Advent of covid stopped rituxi and now on Mycophenolate (couldn't tolerate Imuran). He figured better be on a daily dose in case of covid making it possible to stop as against a six monthly dose of rituxi - his words - 'like firing a shell, you can't call it back'. This site is great, learn more sometimes from fellow patients to be honest.Happy new year to all

Mike

Hi Mike,

Thanks for your reply, That's what I said to my Neph Doc when I rejected the offer of retux once it in you you can't take it back so I stayed with Azathioprine.

He didn't like the rejection btw.

Cheers

Stay safe

Sfs

H Sfs,You're right to stand your ground. I had a severe reaction to Aza (just like the reaction I had to Pfizer booster, AZ for 1st 2 vax) and tolerate Mycophenolate fairly well. It's all a bit hit and miss with the medics when it comes to vasculitis I'm afraid. I'm lucky I've 2 good consultants when it comes to GPA - respiratory and renal in 2 hospitals here in Cork. Both take a special interest in vasculitis. Respiratory guy saved my life in 2010. I was initially diagnosed with pneumonia and lung cancer by an ENT guy!! Respiratory guy just got me in time, 3 days after misdiagnosis. Sinuses were hemorrhaging and lungs were in a bad state which required ICU and being induced for 16 days. Had a rheumatologist from the same hospital also looking after the GPA meds - old style, didn't like questions. Now retired thankfully. Flared in kidneys in 2019 probably due to Prolia injection. In fairness to the nephrologist he agreed that he could see why it could trigger a relapse. I found a case online on an ANCA site where it caused a fatal vasculitis flare in kidneys. Normally these people bat away any suggestion, suspicions from patients. I live in Cork which isn't exactly one of the world's leading medical hotspots. So, I feel lucky to be honest.

Just remember you can used to anything and you just have a new normal, just as long as you're not in severe pain etc. You get used to being sick:)

All the best

Mike

Hello, I was diagnosed with GPA in October 2016 after a lengthy illness, my team put me on this from the start amongst a lot of other stuff (chemo, Prednisolone etc...etc) and have been on it ever since. I was told its a preventative antibiotic that guards against upper respiratory tract infections - as prevention is much better than to get an infection with my GPA as it could cause lots of damage to my lungs etc - hope this helps

Hi, I took co-trimoxazole once a day for two years, from when I was first diagnosed with GPA. My consultant said there is clinical evidence that taking co-trimoxazole can help reduce the likelihood of relapses and upper respiratory tract infections when used as prophylaxis for ANCA vasculitis, and it’s generally fine to stay on it for several years if it’s being used in this way. I only stopped taking it as my consultant put me on methotrexate which can interact with it.

Hi,

Your reply is very much appreciated, many thanks.

Take care,

Sfs

Hi there, I have GPA which has been in remission for 10 years. I take co-trim daily and my very good consultant thinks I should stay on it for life for similar reasons as others have said. I have no side effects that I am aware of. Best of luck!

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