Routine Bactrim ( Septra) use in prevention of flares

[Bajarel]

Does anyone have any information about the use of routine Septra in the prevention of flares? There seems to be some link between carriers of Staph aureus (the bug that causes MRSA) and Wegener's disease flares. But I don't know anymore than that.

[drz]

Does anyone have any information about the use of routine Septra in the prevention of flares? There seems to be some link between carriers of Staph aureus (the bug that causes MRSA) and Wegener's disease flares. But I don't know anymore than that.

Bactrim is often used for protection when your immune system is compromised. Some of us can't take it due to sulfa allergies.

[Palmyra]

Does anyone have any information about the use of routine Septra in the prevention of flares? There seems to be some link between carriers of Staph aureus (the bug that causes MRSA) and Wegener's disease flares. But I don't know anymore than that.

My daughter spent a year on flagyl (metronidazole) as an anti-inflammatory measure to address Crohn's disease. My understanding was that it was not used to prevent infection for those immunocompromised, it was used at a low dose to reduce general inflammation. Antibiotics have been used at low doses for some years to reduce general inflammation for those with chronic autoimmune conditions, as well as cardiovascular disease and periodontal disease (my area of specialty).

Most on this site are familiar with Bactrum use to prevent bacterial lung infection prophylactically, but it can possibly have an anti-inflammatory benefit as well.

I am ever interested in this topic, so please let us know of any information you might be privy to that would discuss this in depth.

[pberggren1]

I was put back on Bactrim a couple of weeks ago due to a possible infection. Not sure where though, but most likely the lungs. My CRP and ESR shot up so we upped the pred to 30 as well.

Now, the last few days I have felt like I have a flu or something like that. I go for labs and see the doc on Tuesday so hopefully I will find out more then.

[elephant]

Phil, hope you feel better soon. Feeling like you have the flu can mean WG flare. Hopefully its not.

[Palmyra]

Wow Phil, you have really had the 'go' this past year. I hope all goes well, and that it is NOT in the lungs!

[pberggren1]

Thanks guys.

I'm pretty sure I'm not flaring. No other Wegs type symptoms and all blood work is looking good.

Actually it has been a rough ride for the past 3 years. I think the M. Abscessus started back in 2009.

[NicShaf]

When I was first hospitalized, they were giving me IV bactrim for whatever they thought I had, and I started feeling better. I asked my Rheumy about it a couple months later, he said that it does treat some of the symptoms, or at least lessens them a bit, but it isn't enough of a treatment for remission. I remember my nose not feeling as stuffy as it had for months before my diagnosis...but bactrim and pred alone would not have healed the nodules in my lungs...unfortunately:(

Feel better soon, Phil!

[Elena]

I've been taking Bactrim 3 times a week since my diagnosis in April 09. I've been told it is both to prevent new sinus infections and some bacteria that could settle in the lungs.

[Sangye]

I don't know if there's been any research done on Bactrim and Wegs--easy enough to check on PubMed. But it is used by many rheumies to keep Wegs at bay. It didn't help me at all.

I suspect it helps those whose Wegs is the result of infection. I'm fairly certain mine is due to toxins, so an antibiotic wouldn't help.

I would love to see a study comparing Weggies who had an infection prior to developing Wegs and those who did not. Just reading our posts I can usually tell whose case seems to be infection-based and whose isn't.

(Note to newer folks: No one knows what really causes Wegs. The most common hypotheses are infection or toxins.)

[Al]

...Infections, toxins, physical trauma, or, indeed, anything that stirs up an immune reaction of the WG kind. I haven't seen any papers specifically on Bactrim and WG. But there are studies suggesting Staph aureus may, sometimes, be a proximate trigger for WG flares. (The ultimate trigger is a tougher nut to crack.) And it is true that chronic sufferers of sinusitis and rhinitis are often carriers of S. aureus. It is also true that chronic carriers of Staph are somewhat more at risk for WG flares than non-carriers. Unfortunately, this correlation is not terribly strong: There are many chronic Staph carriers who have never had WG flares. I think a more useful bit of information would be what proportion of WG flares is preceded by certain types of infection. In my case, both major flares had been preceded (with a lead-time of four weeks or so) by some bronchial infection (of what kind, whether viral or bacterial or fungal, I do not know--that was never tested). Alternatively, my shingles flare (surely made possible by the cytoxan treatment) may have greased the wheels for the second flare. If so, there was about a 3-4 month offset.

Along these lines, I can report that I visited the pulmo yesterday for an update. My cough (and sinus congestion) has gotten worse in the last couple of months (indeed, after Drac took me off Bactrim, as my creatinine was edging up, and Bactrim can influence that number). The pulmo thought that the cough was almost entirely related to nasal dripping. He took a culture, so I may have a data point soon....

Al

[Palmyra]

Yes, Al et al, regarding all of the above thread.

It is my impression that any provocation of the immune system is a no go, not so good for Weg. So, what is one to make of the following article...? We have so many microbial agents that may incite an inflammatory response, and antibiotic therapy is not always the clinical route of choice.

Medscape: Medscape Access (http://www.medscape.com/viewarticle/761374?src=mp&spon=17) There seems to be little to do regarding viral inflammatory triggers, no? My daughter lives in allergen alley (Austin,TX), with this time of year being the worst as to exposure to allergens. When tissues swell, they are predisposed to all pathogenic microbes.

Jane

[me2]

Clin Exp Rheumatol. (http://www.ncbi.nlm.nih.gov/pubmed/20412703#) 2010 Jan-Feb;28(1 Suppl 57):51-5.
Nasal carriage of Staphylococcus aureus and endonasal activity in Wegener s granulomatosis as compared to rheumatoid arthritis and chronic Rhinosinusitis with nasal polyps.
Laudien M (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Laudien%20M%22%5BAuthor%5D), Gadola SD (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Gadola%20SD%22%5BAuthor%5D), Podschun R (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Podschun%20R%22%5BAuthor%5D), Hedderich J (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Hedderich%20J%22%5BAuthor%5D), Paulsen J (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Paulsen%20J%22%5BAuthor%5D), Reinhold-Keller E (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Reinhold-Keller%20E%22%5BAuthor%5D), Csernok E (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Csernok%20E%22%5BAuthor%5D), Ambrosch P (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Ambrosch%20P%22%5BAuthor%5D), Hellmich B (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Hellmich%20B%22%5BAuthor%5D), Moosig F (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Moosig%20F%22%5BAuthor%5D),Gross WL (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Gross%20WL%22%5BAuthor%5D), Sahly H (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Sahly%20H%22%5BAuthor%5D), Lamprecht P (http://www.ncbi.nlm.nih.gov/pubmed?term=%22Lamprecht%20P%22%5BAuthor%5D).
SourceDepartment of Otorhinolaryngology, Head and Neck Surgery, University of Kiel, Kiel, Germany. [email protected]

AbstractOBJECTIVES:Nasal colonisation with Staphylococcus aureus (S. aureus) has been implicated in Wegener's granulomatosis (WG) disease activity. In this study, the frequency of nasal colonisation with S. aureus in WG was compared to healthy and disease control groups for the first time. Moreover, endonasal activity was correlated to colonisation.
PATIENTS AND METHODS:Nasal carriage of S. aureus of a well-defined group of 89 patients with WG was compared to 40 patients with chronic rhinosinusitis with nasal polyps (CRS), 35 patients with rheumatoid arthritis (RA), 50 hospital staff members and 25 subjects without regular hospital contact and correlation analysis of nasal carriage and endonasal activity of WG was performed.
RESULTS:WG patients showed significantly higher rates (72%) of nasal colonisation with S. aureus compared to CRS patients (28%) and healthy subjects without regular hospital contact (25%, 95%-CI), but not to RA patients (46%) and hospital staff members (58%). WG patients with nasal carriage of S. aureus had significantly higher endoscopically proven endonasal activity (p=0.01), significantly more often first manifestation of WG in the upper respiratory tract (p=0.02) and higher relapse-rates (p=0.052) than WG patients without such carriage.
CONCLUSIONS:Endonasal activity in WG is associated with higher nasal S. aureus colonisation rates and subsequent higher relapse rates. The higher frequency of S. aureus colonisation could be a consequence of a recently shown mucosal barrier defect in WG and facilitate chronic inflammation and granuloma formation in the upper respiratory tract.

--Kirk here: this isn't the exact info I was looking for, there have been other studies. I actually got to meet the doctor at a symposium who discovered the link between infection and relapse. It was based on his observations of one patient.
For some reason Staph has unusual capacity to cause WG relapse and this justifies the use of Bactrim prophylactically. Oddly, I have never seen anything that indicates Staph increases the initial incidence of aquiring WG.

[Al]

...For some reason Staph has unusual capacity to cause WG relapse and this justifies the use of Bactrim prophylactically. Oddly, I have never seen anything that indicates Staph increases the initial incidence of aquiring WG.
Kirk-- this may be because Staph is not homologous to any naturally occurring netrophil receptor. According to some theories, the original trigger may often be a bacterium that is homologous (that is, has identical stretches of proteins) to the naturally occurring LMP-2 receptor. (Bacteria like certain bad strains of E.coli fit the bill perfectly.) This does not let Staph off the hook, however: Once the immune system is trained onto one trigger, it is possible that any immune system agent provocateur can set off the deleterious chain of events. Staph could do the trick, as could other infections, toxins, or even physical trauma. For me, I am not so much worried about Staph crossing the "mucosal barrier", since I have no known sinus granulomas. But my pulmo notes that chronic nasal carriage (of S. aureus) can result in an increased risk of alveolar infiltration.

Al

[Al]

Oh, yes: Something else about this paper is interesting: RA patients are more likelt to be chronic staph sufferers than the population at large. I do not know if this is statistically significant, but it is provocative....

Al

[me2]

I had to look up a lot of big words (and acronyms) to figure out what you said Al but I think I get it. Still, a lot of questions.
I just watched the movie Lorenzo's Oil again for the first time in years. Wow, it hit me even harder than the first time. What an amazing story, and a real tear jerker.

It is very inspiring to me to keep asking questions. (My poor doctors huh?)
Now there is a lot of info about Lorenzo online too that wasn't there when I first saw the movie. I highly recommend it to anyone, weggie or not.

I am doing an informal study of the immune system right now and your comments here have helped . Thanks.
I'll let you know if I learn anything. ha
I talked to my shrink today about a book I just happened to see on his desk called "Psychoneuroimmunology". He said it is the 'new' Alchemy. Which means its mostly questions and shaky correlations I think. ha Still , interesting stuff.

You know, after this discussion here, I'm going to ramp up my nasal irrigation with mild antispeptic. I can't take bactrim while on MTX according to the doc ,so this IS something I could do to try and keep the 'colonials' at a minimum. The whole thing with colonies just never seems to work out good for indigenous population (me, in this case).

[Sangye]

Kirk, psychoneuroimmunology has been around for a long time but has gained a lot of traction since the mid 1980's. I highly recommend Candace Pert's book called "The Molecules of Emotion," which was published in 1999. Dr Pert is a pioneer in this area. She was also featured in the movie "What the Bleep Do We Know" where she gives down-to-earth explanations of some of her findings and theories-- with awesome graphics. Read the Wiki article on psychoneuroimmunology. It's fascinating, and hardly "alchemy." (That doctor needs to catch up with his profession!)

[me2]

Thanks Sangye,
I haven't watching bleeping anything since it first came out , I need to watch that again. Graphics would be especially interesting. I'll check out that book too , by Ms Pert.
I can see now my docs reference to alchemy needs more explanation. He is a Jungian analyst who moved to Olympia 18 years ago and started the 'Jung society'. A group for people interested in studying and applying Jung's work, mostly professionals in the first few years. I went to the very first meeting. I couldn't believe we had a real analyst in town.
So once a month for all these years I've been a part of the group and the study of Jung's work.
A period of his life and work was spent on alchemy and what was the truth behind it.
Only in very recent times have I seen the analyst professionally - purely because it was too expensive. Recently I discovered that my insurance company , which tried to kill me by denying me treatment once, would PAY for me to see the analyst. So, its my reward for staying alive in spite of their policies that I get to go to the analyst. It is of great value to me and I enjoy it.

So my doc's reference was between people with a common understanding that alchemy was much more than just a collection of junk ideas put together by fools - like we were taught in public school growing up. In fact it was a treasure trove to one with the right eye.
I took it also to mean that it might be a field somewhat in its infancy with great potential for further understanding.
So what in common parlance sounds like a denunciation was in fact an endorsement between two guys with an oddball background.

[Al]

Kirk, psychoneuroimmunology has been around for a long time but has gained a lot of traction since the mid 1980's. I highly recommend Candace Pert's book called "The Molecules of Emotion," which was published in 1999. Dr Pert is a pioneer in this area. She was also featured in the movie "What the Bleep Do We Know" where she gives down-to-earth explanations of some of her findings and theories-- with awesome graphics. Read the Wiki article on psychoneuroimmunology. It's fascinating, and hardly "alchemy." (That doctor needs to catch up with his profession!)This is interesting, Sngye--I had not realized that there ws so much contemporary interest. I have not read the book or seen the movie yet, but these things fit into my own scheme: I view the brain as a part of the larger organ, the immune system. They both evolved for purposes of homeostasis (life regulation)--the latter for homeostasis within a chemical environment; the former for social environments. As it happens, brains can be remapped by many kinds of learning. If my conception is close to correct, this would imply, by analogy, that there may be relatively non-invasive ways to "re-train" the immune system. Of course, this is, for now, just a hunch. Yet I think it is worth pursuing--at least worth it in a non-financial sense. I'll go in search of more about psychoneuroimmunology next...

Al

[Al]

Kirk, it is true that, from a Jungian's point of view, the term "alchemy" means something much different than it does in common parlance. It is also true that, as scientists, most doctors will sniff at anything with a hint of "pseudoscience" (nevermind that Newton, one of the patriarchs of modern science, was--for much of his life--an enthusiastic alchemist). I find this an interesting discussion, as it asks provocative questions, like "what is wisdom?" And, "given that the purpose of science is to ask 20 questions of nature, how do we come up with that list of questions?"

As I recall, your Jungian is including your case in his book. How is that going?

Al

[me2]

Wow, some memory you have Al. I gave my analyst the 'final' dream of the material he was interested in. I haven't asked him any more about the book, but he is a serious fellow and I'm sure it will be done in due time. Still, I'll ask next time I see him how his work is going on that (next wednesday) and when I might expect some galleys. He said he was going to email me my portion first to see what I thought before advancing it to publishing. A little flattering I will admit to. I gave him complete rights to the material so he doesn't owe me any input. I'll keep you posted. It is about health directly and so might be of interest to anyone.
Every time I see him I run out of time before I run out of questions and discussion. Its tough to get everything in there. You can tell I really enjoy and value the work we do together. Yes, it is work.

[Sangye]

Very interesting, Kirk. I love Jung's work and understand now what you meant by alchemy.

When holistic doctors heard about the studies in the 1980's of "pychoneuroimmunology" they collectively said, "Duh." Chiropractors have talked about this for over 100 years! Still, we are thrilled to have research to prove it.

[me2]

Sangye,
I am going to see my chiropractor tomorrow. I will say that I was just reflecting today on how he is one of the great gifts to the health of my life. I know not everyone needs chiropractic as much or benifits as much , but this man makes my life so much better. He is a gifted healer. We see these in all different aspects of 'medicine'. I would include my 'scientist' doctor. Each has their gifts of insight and their limitations.
I wish you lived close enough to visit my chiropractor , I would pay for it. You and he would connect on a deep level I am sure. He is an indespensable part of my 'health' team. This means dealing with disease as well as promoting health - he understands when I need to talk about them seperatly.

[Al]

Sangye,
I am going to see my chiropractor tomorrow. I will say that I was just reflecting today on how he is one of the great gifts to the health of my life. I know not everyone needs chiropractic as much or benifits as much , but this man makes my life so much better. He is a gifted healer. We see these in all different aspects of 'medicine'. I would include my 'scientist' doctor. Each has their gifts of insight and their limitations.
I wish you lived close enough to visit my chiropractor , I would pay for it. You and he would connect on a deep level I am sure. He is an indespensable part of my 'health' team. This means dealing with disease as well as promoting health - he understands when I need to talk about them seperatly.Great review, Kirk! Goes along with my idea of importance of the "Healer" doctor, as opposed to someone who is merely a dispenser of knowledge.

Al