Printable View
My rheumatologist has me taking both bactrim and methotrexate. These drugs are listed as having potentially fatal interactions. I've mentioned this several times to my rheumatologist but he just smiles and says "that's not a problem."
I stopped taking the Bactrim and am not having the "mock heart attacks" I was having... shortness of breath, massive chest pain etc.
Just wondering if anyone else is on this combination of meds and whether it is working.
I hope your not seeing the Rhuemy....sorry if I am being straight forward, you got to go to Mayo and see the Dr that JanW mentioned. The Bactrim was probably causing heart burn and you already have issues with your GI tract ( intestines).
I am and I'm not having problems with it, but I seem to encounter few issues with meds so I'm not a good example.
I am taking both, although my rheumy says I can go off the Bactrim anytime. I seem to feel better when I am taking it than when I'm not. I'm keeping an eye out for shortness of breath and chest pain. So far, so good. *knock wood*
Hope your doc (or a different one) can get things better sorted out for you. How much of each drug are you taking? I'm on 20 mg MTX/week, and 37.5/25 mg Bactrim MWF.
ScreaminMeanie your on a low dose of Bactrim, and you are taking it only three times a week, so your side effects. So glad to hear that it's working for you!
I was recently taking 800/160 daily and that was causing so much GI distress I had to stop.
I think that a lot of the contra indications that you read about drugs are just possibilities that have to be looked out for rather than something that is definitely going to occur. When I read about the drugs that I take, they nearly all say that they should be avoided if you have kidney problems, which I do. But my condition is closely monitored and the doctors are OK with me taking them. I don't have much choice really!
Bactrim interacts with tons of drugs. Like Jack said, most of the time it just means they need to monitor you. However, you should research (Google or ask a pharmacist) how the bactrim affects you so that you can watch out for yourself.
For example, a quick google showed me that Bactrim intensifies the mtx, meaning your body would react as if you had taken a higher dose. I don't know what that means for the low doses we take. For people with cancer taking huge doses of mtx, it could be fatal. Maybe it's not a risk with lower doses and that's why your doc brushed it off.
Considering that both bactrim and mtx are both very common wegs drugs, I'm sure many people take them iin combination. There is some popular thought among docs that bactrim does something to help keep us in remission, but there is no real research to back that up. It's very commonly used to avoid infection in those who take ctx especially, but the thought is that it shouldn't be given 'just because' you have wegs.
There was at least one trial run on Bactrim to prevent relapse which lasted for two years. Duing this time 82% of the Bactrim group remained in remission against 60 % of the placebo group. The conclusion to this report speculates that infections trigger relapse and this is why Bactrim helps.
Can you find that study Jack?
I recall reading that in a couple of places, too. That's one of the reasons I wanted to stay on it.Quote:
Originally Posted by Jack
This makes me think of the controversy about keeping Weggies on maintenance drugs "just in case." Staying on an antibiotic long-term also has risks-- creating antibiotic-resistant bacteria, developing an allergy to it, chronic disruption of normal gut flora, etc....
I'm with you on this one Sangye. And so is my doc too.
Plus I'm not allowed to get pregnant while on it. Since I am a 52 year old male, I find this HIGHLY prejudicial! :flapper:
By the way my doctor says the combination of MTX and Pred are making me paranoid, but I just think he's just saying that because he's out to get me. :flapper:
I don't want anyone to get the wrong idea about my last comment. Some Weggies have demonstrated that they need to stay on Bactrim to avoid infections and/or Wegs flares. In that case, the benefit outweighs the risk. My comment was directed at doctors who put Weggies on Bactrim indefinitely, without even seeing how they do without it.
I'd have to dig this up, but there was a study in one of the medical journals that indicated a persistent sinus infection could lead to recurrence and flareup. If so, then Bactrim would be a good idea to prevent or mitigate a sinus infection. This could be one of the reasons why Bactrim may mitigate recurrence. IMHO.
Trimethoprim-sulfamethoxazole (co-trimoxazole) for... [N Engl J Med. 1996] - PubMed result
MMS: Error
Some other interesting stuff here - co-trimoxazole wegener's - PubMed result
Unfortunately most of these are just abstracts.
Note: in the UK Bactrim is called Co-Trimoxazole.
Bactrim is also called Septra in the US. Apparently we can't handle drug names over 2 syllables. :laugh:
It's always so hard to say, right, because the samples are always so tiny (only 36 patients in one of the abstracts I opened).
Again, I think it's up to every patient to evaluate their individual case with their docs, but, I met many people who went on pred and immediately went on fosamex (with no evidence of bone loss) at the Symposium, I also met many patients who went on were on imuran or mtx and still on bactrim left over from the ctx days (when it shows a clearly clinically significant benefit in preventing a certain type of pneumonia). Doctors sometimes think that more is better as it is keeping away this dreaded disease; I don't think that true WG docs are nearly as nervous about treating the flare as it arises.
I don't think that "let's never have her flare again in her whole life" factors strongly into my doctor's treatment decisions about my case.
Yes, I totally agree. Dr Seo has never said or implied that the goal is to prevent every single flare. The goal is to get us into remission and hope we never flare, but that isn't realistic for most people with Wegs. The realistic goal is to get us into remission and be able to identify and treat a flare quickly, using the fewest (and least toxic) drugs.
Exactly. Research has found that most people will flare anyway. Those that don't are the rare few. Many docs now believe the goal is to treat the flare when it arises, not overtreat to prevent something that honestly could be very minor.
Flaring at my very worse, so far, I wasn't too sick to participate in normal daily activities. If that's the worst it got again, it wouldn't be life threatening.
Both my onset and last year's flare were "severe" disease activity (ie, alveolar hemorrhaging). Even so, Dr Seo isn't terrified about me flaring again. Neither am I, actually.
Having gone almost 20 years without a flare, my personal goal is to never have another one after this one. Reading here and finding out that's not likely is very disheartening. Especially since each successive one could be worse than the previous ones. :(
I don't think you should take it that way. Those are generalizations. You've already been unique, and I believe you will be again. :biggrin1:
I know how you feel Meanie. It has been 20 years since my disease has been active in any very significant way (lots of other problems though!) and I would love to be able to tell myself that it is all over. Then along comes a story about someone with a flare after 25 years. :(
The only encouraging point is that the last of my flares were not too bad and I am now so aware and closely monitored that anything bad should be stopped early. In the meantime, I'll just tackle problems as they arise and not worry about what might be in the future. :)
Thanks, Sangye and Jack. Those are much better ways to look at it. I've been feeling crappish the last couple of days, and that always screws with my normally high optimism level.
And I don't think you should ever assume that each successive flare will be worse. Remember, WG is NOT a progressive disease.
Last year's flare was bad, but it was NOTHING like the original onset of Wegs. Last year I had bad joint pain but wasn't completely crippled by it. I also wasn't gasping for breath and didn't need to be on oxygen.
The stats tell me that it is very possible to live life without a flare; it is very possible to live life with Wegener's.
Every one of you who has lived years between flares is a huge encouragement to me.
Your encouragement is vital to me.
Is this drug contraindicated with Imuran?Quote:
Originally Posted by Jack
ScreaminMeanie, these stats have NOTHING to do with you personally. These are global stats that provide a baseline for all Weggies under all circumstances.Quote:
Originally Posted by ScreaminMeanie
THANKS Jack, this is very helpful. I must be one of the few who can't tolerate Bactrim.Quote:
Originally Posted by Jack
Intolerance to Bactrim is quite common, but there is a desensitisation treatment for it that is very effective. Details are on the forum somewhere.