Quick Bactrim question

[mmthomm]

Hi all,

I'm a newly diagnosed (6 weeks ago) Wegener's patient so I'm on Methotrexate and I've just completed 4 weeks of RTX infusions and am very happily tapering down on my prednisone - down to 30 mg/day already so hoping sleep will return soon. :-) At any rate, I'm also taking Bactrim as a prophylaxis and I'm seeing a lot of mixed information about there about whether people continue to take the antibiotic for the long haul as a prophylaxis even if remission has been achieved or whether it's just something you take while the disease is active. I know that it's a conversation for my rheumatologist but just curious what other people's experiences have been since the research is sort of all over the place on this one. If taken on a "permanent" basis I'd also like input on whether anyone has had side effects (GI, etc.) as a result of long-term use of an antibiotic.

Thanks!
Maureen

[drz]

As long as you are on any meds to suppress your immune system, Bactrim or some drug to try prevent PCP is a good idea. Many people take it or some other drug for years since PCP is very bad thing to experience.

[annekat]

I have also read on here and elsewhere that Bactrim taken on a long term basis, perhaps indefinitely, actually may help to keep one in remission. I don't remember an explanation of why that would be so, however. Maybe someone knows something more about this.

[pberggren1]

I used to take Bactrim because I was high risk with my severe lung damage at getting deadly lung infections. I almost died from Mycobacterium Abscessus Lund Disease. I stopped taking the Bactrim because it was causing interstitial nephritis. I stopped it back in 2011 I think.

Maureen, if you are not at high risk you can probably go off the Bactrim fairly soon I would think. But I would get some info out of your doc why they want you to stay on it before making the decision to go off. Do you have a skilled Vasculitic doctor?

[Alysia]

I used to take Bactrim untill it elevated my liver functions. but being on mtx can be a contra indication to taking Bactrim because it can elevate toxicity of mtx. there is a thread about it.

[annekat]

I used to take Bactrim untill it elevated my liver functions. but being on mtx can be a contra indication to taking Bactrim because it can elevate toxicity of mtx. there is a thread about it.

This is true, but apparently it isn't always a problem, it just needs to be watched in the bloodwork or something. I'm not clear on what they look for. But my doc thinks I can take the Bactrim despite being on MTX, and he convinced my drug plan that it was OK to cover both at the same time. I also had a conversation with Sangye about this and she agreed it was OK, that the risk was not that great, and that the benefits outweighed it, FWIW.

[carriej22]

As someone who has had a lung infection - take the bactrim.

I still take it everyday; as last time was not something I ever want to repeat. Doctors were throwing everything at me because I couldn't breathe and ended up on a ventilator. There is nothings as scary as not being able to get a breath.

I never had any issues with mine in my liver functions... I take the generic brand and it is dirt cheap too.

[norcalian]

I'm allergic to Bactrim, so I take Mepron - which is gross. I have been taking it for more than a couple of years. I have an infectious disease specialist I talk about this sort of stuff with. I got off of Prednison and Imuran and I do RTX treatments every 4 - 6 months to maintain remission...however my ID Doc doesn't seem too interested in taking me off of Mepron. However, I had PCP and spent a log time in the hospital because of it. So that is probably why no one is moving to fast to get me off of it.

I have also heard that Bactrim can help maintain remission. My understanding is that it may have something to do with the thought that sinus infections can possibly trigger flares...and since Bactrim keeps those sort of infections at bay, it mitigates those sort of flares. However, it applies more to those with Wegeners from the neck up...at least that was my very basic understanding - anyone else hear something along those lines?

[annekat]

I have also heard that Bactrim can help maintain remission. My understanding is that it may have something to do with the thought that sinus infections can possibly trigger flares...and since Bactrim keeps those sort of infections at bay, it mitigates those sort of flares. However, it applies more to those with Wegeners from the neck up...at least that was my very basic understanding - anyone else hear something along those lines?

Thanks for that possible explanation. Makes sense. But I wonder why Bactrim as opposed to any other antibiotic? I know infections can become resistant to specific antibiotics over time. Seems like Bactrim DS, the kind taken 3x per week, is somehow designed for long term use. I'd like to hear any other insights on this, too.

[carriej22]

From what I understand (and I could be wrong) the DS means double strength, and some people take those every second day; but the regular one (which I have) is a lot cheaper and half the strength and is taken daily - it's easier on the tummy than the DS since it's half the drug dose, but you take it more often.

My Doctor told me it's the go-to med for keeping away the baddies (specifcally, pneumocystis-type pneumonia) and that as an added bonus it might help keep me in remission.