Clickable: LUPUS INFORMATION & LUPUS RESOURCES.
I asked my rheumy about AP. This is what he told me, not my opinion--AP has been around for a very very long time (decades), and research has attempted to prove its efficacy since its inception. For the people who respond to AP, it is usually because they have latent Lyme's disease or something in that class of diseases--in other words, something that would readily respond to antibiotics. The research that has been done has been majorly flawed and never corroborated. Evidently, there is a doctor in the DC area (where I reside) who "specializes" in AP. It is my rheumy's opinion that this guy is not just a quack, but a swindler. He tells everyone that comes to see him that they have RA (in fact, many do not). He prescribes them antiobiotics and follows them for a year. If they get better, he proclaims them cured. If they don't, he simply refers them on to someone else. My rheumy got a referral from him, a young lady who had tendonitis in one wrist. This AP guy told her she had RA and put her on AP for a year. She got better after a year, but what he didn't tell her is that tendonitis resolves itself in one year, with no tx.
That being said, my rheumy told me that he likes to keep an open mind and if I wanted to try AP, he would prescribe them. I chose not to. I'm not trying to be "down" on AP, but I'm a researcher and a firm believer in numbers to support these claims that AP is the cure. I'm very distrustful of anything that claims to be a cure for diseases that are not even truly understood to begin with. On the other hand, AP is probably less toxic to the body than many of the DMARDs we take. If you can find a doctor to prescribe them, perhaps it can't hurt to try.
Sure it is indeed a legitimate treatment and sure it does work in many MANY scenarios.
But here's another thing, long term antibiotic chemotherapy can cause severe arthritis in varying areas of the body; tearing of ligaments; potentially lethal super infection; and inflammatory bowel disease as colitis, ulcers and ulcerative colitis.
What are we really looking at? Several treatments that "can" cause a "possible" remission of RA and MCTD's. DMARDs, TNFs and biologics do not even promise this nor does any medication in that matter.
I believe it's just another step in the latter that is a very crucial step indeed! It is there just as any other, and it is there as another option.
**this is by the way...a very good conversation/debate**
the best to you both! rock on!
I have not based my conclusions regarding AP on one doctor's opinion. I have thoroughly researched it myself; I have read some primary sources (professional journal articles). There are very few studies that support the claims of AP and RA. I have encountered numerous claims regarding AP on the internet (the roadback stuff), but those are simply testimonials. There is very little based on real numbers from clinical trials. Until that's available, I'm not willing to be the guinea pig.
CaMama, my rheumy basically said the same thing your's did--he has prescribed AP for patients in the past who really wanted to try it. It hasn't worked for any of them. He wasn't completely down on AP--he specifically said that he was certainly open to the idea. It has just been his experience that it doesn't work for most people.
Yeah, I saw that your doc had a similar response as mine. I did read on one site that it seemed antibiotic therapy worked best for 'mild' arthritis and they categorized it with Plaquenil (which I'm on and am getting good results with.) I figure - do the research, if I feel ready to try something in addition to Plaquenil, I think I (based on how my research goes) would like to try that before goign on another TNF inhibitor......we'll see.....
Welcome Mikey! Yes, this site is great and can really be a lifesaver when it comes to peace of mind, not feeling so alone, a place to ask questions, and a place to just vent with a lot of understanding ears!
Erin, yes, I'm having good results from Plaquenil. I wish they gave it to me years ago. None of the NSAiD's ever did a thing for me. Methotrexate made me feel so rotten, I honestly don't know if it did - plus, I took it with azulphidine, which was great for my colitis so who knows what did what......SO, other than Remicade, Plaquenil is the only other med I can actuall FEEL a major difference. Is it as awesome as Remicade? No, I do still have some issues. But, on the plus, my tiny little veins don't have to be tortured every 7 weeks, and considering I finally started having allergic reactions with severe flares, constant infections, low WBC, toxic liver, swollen eyes, an so on.....
I will warn you (as I did before) it irritates your bowels in the beginning for a week or two. With your Chron's, I don't know what that might mean.
I wonder if my rubella theory is true and if that means AP therapy would work for me.
hey El, hey camama:
well, i don't know what's going to happen. i see the GI doc on wednesday. getting the promtheus test...and i guess discuss what's next or what to add in conjunction to everything.
i won't start anything until the test comes back, that i know.
so hopefully i'm just not @ a therapeutic level of Imuran & it'll be as simple as putting me up to 100mg Imuran/day. i'de hate to start on something new all over again. but i do need an antiinflammatory of some sort...anything. i need something beside prednisone, i mean how much of it can i possibly take?!!??!!
i know the Crohns will be an issue, and the bleeding will be an issue (happened on the cox2s and most nsaids)
well, we shall see!
he's a smart guy...i'm not worried.
Hi Mike, you mention that you have more problems with fatigue than anything else right now? I can tell you that once I started Enbrel (5 months ago), the fatigue almost completely disappeared. The effects were quite noticeable after about the 3rd weekly injection. I didn't even realize how fatigued I was until the Enbrel kicked in. Prior to that, all I wanted to do on my time off was sleep!
Although enbrel has done great for the fatigue it has not taken care of my joints yet, but combining it with mtx may do the trick.
Post Edited (erin kachmar) : 8/7/2006 7:05:19 AM (GMT-6)
Yep, I did the Promethius test, it took me almost 3 months of the Immuran to feel like it kicked in. It also took a bit of "finessing" to figure out the dosage that worked for me, I started at 150 mg of Immuran, it was too much, went down to 100 mg and got off Pred and was taking 400mg of Plaquenil, seemed to keep both diseases under control until I started feeling crappy with the Crohn's, flared and ended up in the hospital for a week, pumped with steroids and Entocort - LOVED that med, it worked along with finally figuring out the correct dosage of Immuran - 125 mg.
What dosage are you at with Immuran? How long have you been on it? I know for some people it takes up to 6 months to feel better - that is what my GI told me.
With having Lupus and Crohns, I also don't have that many options of what I can take - Immuran, Entocort, and MTX are my options. Have not done the MTX yet, since Immuran seems to be working well at this point - knock on wood, having a bit of a Lupus flare but coming out of that with an increased dose of Plaqunil.
I am also lucky that both my GI and Rheumy are very willing to work with each other and actually talk about what they each feel works for me with each other. It is rare I am sure.
Good luck with your GI appt, keep me posted, I hope that they are willing to try some more options.