Co Trimoxazole

[juli-pa]

Hope everyone is ok with this heat. I just wanted to ask if anyone is on a maintenance drug Co Trimoxazole & if so how long have you been in remission. My consultant has said that by December we will start steroid reduction & cease rituximab but carry on with the co Trimoxazole. Although i am excited to start reducing the steroids I am also worried about flaring.

[Grizzly-bear]

I’m guessing they’ll only keep you on Co trimoxazole for a year after your last rituximab infusion as that’s how long the immune system can take to come back, but they may keep you on a little longer to be on the safe side to prevent infections whilst immune system still dampened

How long have you been in rituximab? Consultants don’t seem keen on weaning people off immune suppressants but when I hit the 2 year mark with rituximab I’d like to try, as scary as it is.

[juli-pa in reply to Grizzly-bear]

I went to remission after first infusion & have stayed that way. November will be my 2 years of rituximab &steroids fingers crossed. Hope you are keeping well.

[Grizzly-bear in reply to juli-pa]

Good luck to you coming off rituximab and lowering steroids, hope all goes well

[stuc]

Hi JuliI have been on co- trimoxizole since I was diagnosed with GPA in 2017. I am still currently taking azathioprine and have been in remission for about a year, I have had 3 flares since diagnosis with a course of rituximab for each one. My rheumatologist not keen to take me off the co trimoxizole at the moment in case of infection.

[juli-pa in reply to stuc]

Thank you

[Warralife in reply to stuc]

That’s interesting. I too was diagnosed in 2017 and was initially put onto co-trimoxazole whilst having cyclophosphamide infusions and being on high steroids. When I was put onto azathioprine, I was taken off co-trimoxazole because apparently they work against each other. How do you thought it was interesting that you’re still on it but I appreciate each case is different.

[juli-pa in reply to Warralife]

Hi yes I have been on it from the very start of my treatment nearly two years. My consultant has said my last rituximab will be in November then slowly start to reduce steroids until I stop but I will carry on with the co Trimoxazole but hasn’t mentioned any other drug.

[stuc in reply to Warralife]

That is interesting, my rheumatologist did consider stopping them just before my last flare but decided to keep me on them. He has been a brilliant specialist for me since diagnosis so I have no reason to doubt him but as you say, every case is different

[Cherishe77]

I am on Co-trim since 6 years. Never had steroids because I was diagnosed in an early stage . Even though I have had some flare ups over the years it’s pulling me through and I find it a life saver but that can be different for everyone. Be sure to drink lots of water because it’s not the best for your kidneys and let your kidney values check twice aYear.

[juli-pa in reply to Cherishe77]

Thank you

[Cherishe77 in reply to juli-pa]

You’re welcome. I hope the Co-trim will work for you as it does for me. Stay strong and healthy

[MAC12]

Hi there. I was diagnosed with GPA 11 years ago and after being successfully treated with cyclophosphamide have been in remission ever since. I’ve been on co-trim pretty well ever since without problems and my consultants who are excellent think I should stay on it for life. I was concerned about long term use of antibiotic but they reassured me that it’s an old one and wouldn’t make much newer ones ineffective if I needed them for something else. Good luck.

[juli-pa in reply to MAC12]

That gives me some faith. Thank you for your reply. Glad you are staying well x

[MAC12 in reply to juli-pa]

Thanks for the reply. Just to give you a bit more info, I am also on a low dose of azathioprine as well as co-trim and have been for over 10 years now without any problems. My consultants say that co-trim not only helps prevent lung infections which are a risk with GPA, but also probably helps in some way with controlling the GPA. They say it isn't clear yet how this works. But to sum up - I have had no problems with taking these drugs long term and feel very well. All best wishes

[juli-pa in reply to MAC12]

I did read somewhere that cotrimoxazole helps patients stay in remission . Fingers crossed I have felt sell & back to exercising since being in remission I just hope it lasts. Thanks again.

[Investigator1]

Hi juli-pa I was diagnosed with GPA in December 2019 and Steroids and Cyclophosphamide followed till March when found my self in remission. Now I was taking Co Trimoxazole until then. When I was then put onto Azathioprine my consultant stopped it. The Azathioprine wasn’t effective and later that year transferred to Rituximab I have been steroid free for over a year. I haven’t had Co Trimoxazole since March 2020. To be honest I don’t think about it now and I don’t think about getting infections, I am ultra careful and I am not being flippant it’s just that the way I do things has become imbedded in my psyche. Maybe I am lucky (I had the bout of Covid but hey! That was a one off and did everything to avoid it) because I have stayed clear of infection, had colds but they have cleared up after a couple of days. So onward and upward.

[juli-pa in reply to Investigator1]

Thank you

[eh66]

I was diagnosed Jan 2021. I had 2*cyclophosphamide and rituximab infusions. I have been in remission over a year now. I was weaned off steroids after about 3 months (90-0 mg). I still have to take Co trimoxazole indefinitely (for sinus damage) along with Atorvastatin and Ramipril (my Cholesterol and blood pressure are in normal ranges) but my consultant says they have other benefits for Vasculitis. I expect have to receive rituximab infusions for another 6 months to a year. I feel pretty good and have had no flair ups but I watch my resting heart rate like a hawk (currently mid 50s) since it hit 80 in Jan 2021.

[juli-pa in reply to eh66]

Thank you for your reply some interesting responses .

[DazVin]

I have GPA first diagnosed 2016, started on various drugs of which Co-Trimoxizole was one of these. Relapsed in 2017 quite badly and was changed from Cyclophosmadine to Rituximab infusions plus back up to a high dose of Prednisolone. Due to the severity of my relapse my team have kept me on annual maintenance of Rituximab and I still take Co-Trimoxizole amongst a lot of other drugs

[juli-pa in reply to DazVin]

Thank you. Are you now in remission?

[DazVin in reply to juli-pa]

As far as I know yes - but still on a lot of drugs plus an annual maintenance dose of Rituximab as they want me to continue with this because of the severity of my relapse in 2017. I weened off of Prednisolone in 2019 but felt really bad - they did more tests and confirmed to me that my adrenal gland had not "kicked back in" as it should have done when I tapered off Prednisolone, this is rare to happen they said but not unheard of. I now have to take Hydro-cortisone for life or risk going into an adrenal coma is I think the term they used? I also developed peripheral neuropathy in both feet and lower legs which is extremely painful and has to be managed with strong pain killers or nerve blockers, these are Pregabalin and Amitryptalin - they said that this could be caused by either the Vasculitis or the chemo as either can do this - I suspect the vasculitis. All in all its a really nasty disease that attacks on multi fronts. I was told that the Co-Trimoxizole is a kind of preventative antibiotic that helps protect the upper respiratory tract from infection.

[juli-pa in reply to DazVin]

Oh sorry to hear how poorly you have been. IT is certainly an awful illness & some people seem to be worse than others. Wishing you all the best.

[ZiggyDiego]

Hi I’ve been on Co-trimoxazole on and off since 2017. First with cyclophosphamide, then aza, then mycophenolate, then rituximab which has been the only drug that stops me relapsing. Had to come off prednisolone as couldn’t tolerate it, but stayed on rituximab. I’d be very wary of stopping both at the same time. I had to stop Co-trimoxazole when trying methotrexate (as well as the rituximab) to stop me flaring. Had repeated infections so stopped the methotrexate & resumed co-trimoxazole. I often have lung issues brewing but it stops them getting out of hand. I’m in remission of sorts but flare frequently. Hope that helps.

[gilders]

Co-trimoxazole is an antibiotic, not a maintenance or therapeutic drug. As there is evidence that when the body is fighting an infection you're more susceptible to flares, it could be considered as a preventative.