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Thread: Is there a connection between RTX and lung infections ?

  1. #31
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    Bactrim was at one time, and I assume it still is, used prophylacticly for pheumocystiis carinii as described in the article you gave for aids patients. As I remember it they were finding that this infection was becoming the highest cause of death for people with acquired immune deficiency from this virus and Bactrim was used for that.

    I don' think that our immune deficiency is actually what we are using Bactrim for. Not for pcp.

    At one of the WG conferences in Kansas City I got to attend a small seminar and talk directly with the doctor who discovered that Bactrim had unique use in WG patients. His discovery was that Bactrim alone in some rare cases could induce remission of Wg . This was unheard of. But as one of the citations states --
    In Wegener's Granulomatosis (WG) chronic carriage of Staphylococcus aureus (S. aureus) is associated with a strongly increased risk for relapsing disease.

    I couldn't find the definitive article I was looking for by Dr DeRemee so I have to use the shot gun approach and just give the literature I could find- it consistently says pretty much the same thing:

    http://www.ncbi.nlm.nih.gov/pubmed/8880118

    JAMA Network | JAMA Internal Medicine | Treatment of Wegener's Granulomatosis With Sulfamethoxazole-Trimethoprim

    Co-trimoxazole and prevention of relapses of P... [Eur J Med Res. 2009] - PubMed - NCBI

    Vasculitis and infections: contribution to the... [Autoimmun Rev. 2008] - PubMed - NCBI

    [Wegener's granulomatosi... [Rev Med Inst Mex Seguro Soc. 2006 May-Jun] - PubMed - NCBI

    The relation between Staphylococcus aureus and We... [Intern Med. 2003] - PubMed - NCBI

    Infections and Wegener's granulomatosis--a cause and eff... [QJM. 1997] - PubMed - NCBI

    Staphylococcus aureus, tri... [Sarcoidosis Vasc Diffuse Lung Dis. 1996] - PubMed - NCBI


    What is the evidence for prophylactic an... [Curr Opin Rheumatol. 2011] - PubMed - NCBI

    Chronic crusting, nasal carriage of Stap... [J Physiol Pharmacol. 2008] - PubMed - NCBI


    Staphylococcus aureus and Wegener's granulomat... [Arthritis Res. 2002] - PubMed - NCBI


    As a side note , I met with Dr Deremee after the seminar and told him I was allergic to Bactrim. He told me that (at that time) it was not known which of the two agents in Bactrim were responsible for the beneficial result or whether both trimethaprime and sulfamethoxazole were necessary. He suggested I try the trimethaprime if I could not use Bactrim and see what happened. Most likely the sulfamethoxazole is the component that people have an allergy to.

    Well, I came home and started doing my own research on Bactrim use (the internet had just been invented) and found it was being used largely for aids patients with pcp. It was then that I discovered there was a desensitization protocol for Bactrim with a very high success rate. I printed out the article I found and took it took to my doctor. He had outlined some treatment using other drugs until I showed him what I had found . When I showed him the info he said "Lets do that" .
    I was able to desensitize to Bactrim and can still take it now. What is striking to me , even now , is that at that time, even Dr DeRemee was not aware of the desensitization protocol or he would have told me. It is common knowledge now in the treatment of wg and use of Bactrim.
    Sorry to be so long winded but you see way back then I had to work very hard to get information to stay alive.
    Last edited by me2; 05-04-2014 at 02:25 PM.

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  3. #32
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    Well, I didn't drone on long enough I wanted to add one more thing (LOL). On the Rituxan issue and Bactrim.

    I know that with Rituxan use we are now at increased risk of infection. We already were with Cytoxan and prednisone so I'm not sure what the current thinking is regarding Bactrim use and Rituxan. I have not seen any articles on it. But then I don't work that hard at staying informed anymore either.

    I would guess they would say something like "Well, they already take Bactrim for staph, it can't be anything but helpful for any other opportunistic infection caused by Rituxan"
    Just a guess. Drone finished.

  4. #33
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    WOW kirk, such an impressing research
    it will take me some time to look at all the links, but meantime, thank you so much !
    I wanted to say that bactrim IS NOT effective to all infections. for example, I have many UTI's, and in all cases, bactrim didn't fit to cure it.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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  6. #34
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    Too bad Bactrim doesn't help your UTI's Alysia. That would have been a good co-incidence.

    I will add one little drone addendum. I recently had sinus surgery to correct severe structural damage to my sinuses from years of having WG. I was having infections that would not go away and was on antibiotics for a long time (Cipro, not bactrim) The ENT fella took a culture of what was causing me so much trouble.

    When I saw my Rhuemy I said "Guess what the surgeon found growing in my sinus"
    He played along with me and said " Staph aureous"

    I said "Bingo, score one for the Rheumy"

    He said "It wasn't that hard of a guess, many WG patient have staph growing their sinus"

    Reading the above citations you get the picture why.
    Last edited by me2; 05-04-2014 at 05:10 PM.

  7. #35
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    I forget to mention that I can't use bactrim anymore because it elevated my liver functions beyond normal.
    I am glad, Kirk, that you are recovering. take care
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  8. #36
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    Thanks Alysia. I can't take Bactrim right now either because it is contra-indicated with methotrexate. You take care too. Its good to see you here.

  9. #37
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    Kirk, I take Bactrim with MTX and I think a few of us do here. I know there are contraindications and can't explain them but know that the doc thinks it's OK as long as certain things are checked for in the blood on a regular basis. I'll never have the time and energy to do the kind of research you have done in the past to be able to explain things precisely, so am thankful that the info is more out in the open now via the forum or the greater knowledge of the medical community, or whatever. As long as I don't have any problems with the Bactrim/MTX combo, then I will keep taking it.

    Thanks for all those links and the work you went to to put them into your post. I had read about Bactrim being used to keep people in remission and also about the s. aureus issue, that many of us are or could be carrying it. I'm sure it is true that Bactrim is used against that but don't see why it wouldn't also be used to prevent PCP, after all, we don't have AIDS, but our immune systems are compromised for a different reason, and we would still be susceptible to an opportunistic lung infection such as that. Quite possibly Bactrim helps us in many ways but that is just the one that gets repeated because it is easy for them rather than going into all the details.

    My pharmacist assumed I was taking Bactrim against UTI's and said that many people take it for that. But I guess it doesn't work for all of them, all the time.

    I'll take a look at some of those links when I get the chance.
    Anne, dx'ed April 2011

  10. #38
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    When I was first diagnosed I, it presented in my lungs and I was coughing up significant amounts of blood. I have gone through Citoxan, Methotrexate and Imuran mixed with Prednisone. I tend to flare about every two months though and the end of last month started to relapse but was able to catch it quickly because this disease has made me so much more in tune with my body.
    I start Retuxan infusions on the 21st and am hoping that it will help me get into remission for a longer basis. I have a friend who did Retuxan infusions and was symptom free for two years afterwards.
    Problem with this disease is that there really is no standard of treatment for it. They try a very small handful of different drug combinations and hope that they work for our particular situation. Unfortunately all of the drugs have side effects and we have to be careful and cognizant of what's going on with our bodies so that we can make changes when required. Retuxan is not a wonder drug and it's not going to be the right drug for every situation. If you are prone to lung infections you might want to steer towards another treatment option.

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  12. #39
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    Quote Originally Posted by gunnyl View Post
    I start Retuxan infusions on the 21st and am hoping that it will help me get into remission for a longer basis.
    .
    If you are prone to lung infections you might want to steer towards another treatment option.
    good luck with your RTX. I hope it will bring you to long lasting remission.
    btw, we are all prone to lung infections...
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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