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  • #299903
    linda
    Participant

    I finally got my first remicade infusion yesterday, the infusion clinic is in my doctor's office so all the patients there have some form of AI dx.  The university hospital where i'm receiving therapy is a major research center for AI dx, and they had a research tech in the center yesterday doing surveys; apparently a common practice. I started up a converstion with the tech about research in the use of antibiotics to treat arthritis, and explained that I had tried it, and was working on getting my stomach healed so that I could return to it. A lot of ears perked when I explained that I liked the abx because it doesn't have the dangerous side effects of the biologics. We also talked about how biologics and prednisone actually allow the disease to progress if indeed it is caused by bacteria.

    Since the nurses have to explain all of the possible side effects of biologics and the possibility of the creation of antibodies to them when they start an infusion, all of this info was fresh in the minds of those receiving infusions. I'm not breaking any rules, not leaving any literature or suggesting anyone try AP, just having a casual converstion about research in the field of arthritis.

    I have another appt in 2 weeks- and I have to say I'm looking forward to getting back on AP as I feel pretty rough today, altho after the first 3 treatments I only have to go in every 6 weeks. One thing is true about these biologics, they do work quickly; I already have a little less inflammation in my hands and fingers, and my R. knee can bend a little bit. No worries, I'm not planning on staying on remicade any longer than I have to.

    Do your docs want you to try Enbrel for a temporary amt of time, to get the inflammation down so that the abx can get to the bacteria? Or is it being considered a permanent solution?

    #309884
    suera
    Participant

    Linda,

    I am curious why you are on Remicade? My rheumy and ap doc want me to give Enbrel a try. I already take prednisone and MTX so am reluctant to take anything else that he wants to give me.

    Good for you to just casually bring it up, what I think is so awful about rheumy's is they don't even mention it as an option, why?

    Sue

    #309885
    linda
    Participant

    That last question is a loaded one, for sure. My remicade treatments cost 5,000.00/ ea. Enbrel, Humira, etc are also ridiculously expensive. I receive help from a Foundation that helps with medical costs and health insurance.  I don't know how good your insurance is, but if you need the info, the website is NeedyMeds.com.
    Anyway, my copay for each treament is 1,000.00, so I applied for the aid and rec'd the full amount of the copay for each treatment.   So, there's a whole lot of money involved in rx'ing these meds. Also,  consider the ramifications for the field of rheumatology if the infectious theory and AP/MP prove to be true. Any family practice doc can learn the protocol and rx abx, so why go to an expensive rheumy- they would become unnecessary. I don't think that all rheumies are relunctant because of those reasons, they are all indoctrinated with the conventional forms of therapy in med school, and it's akin to changing their entire belief system to accept Dr. Brown's theory.

    I'm not on remicade/mtx/pred by choice. I was on zithromax for a little over a yr, and I have had stomach problems for about 5 years. I have been treated for H. pylori and was better for a few yrs, but the symptoms returned after I started abx (I was also on pred and mobic- it was just too many meds for too long). long story short- my AP doc failed to tell me I should be on probiotics, I found out here 10 months after starting AP, he also failed to acknowledge or treat my stomach problems- the result was that I had to stop almost all meds. (yes, I fired him). I hoped that a short break and stronger stomach meds would help heal my stomach, but it is taking a long time, and my PsA has just exploded over the past 6 months. In order to function, continue to give my tummy more time to heal and prevent joint damage, I chose to go back to remicade. I was on it 5 yrs ago and it works very well, unfortunately it also knocks down our immune system and makes it easier for the mycoplasma to grow. Mtx prevents the formation of antibodies which cause the remicade to lose effectiveness over time. I tried to find a doc who rx'ed IV AP, but couldn't find one who contracts with my insurance.

    Getting started on AP early is so important, I wish I had found out about it years ago before I started developing all these side effects from NSAIDS and prednisone. Now I have to work with what I've got, it's going to be a longer road back for me than most- but I'll get there.

    linda

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