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Thank you all , Maz, maz.aust and Lynnie for the welcome.
Joe,
I absolutely 100% stand behind my comments, which were based on hundreds of hours of research by myself, not third party information or hearsay, my own research.
Frankly, I find your comments an insult, not only to me but every one else that has made an informed decision to choose AP therapy as their treatment and I resent your accusation that I am spreading miss-information using “hyperbole” and “enthusiasm” to make a point.
The decision to go with AP therapy for myself was based on exactly the comments I made. I don?t need to convince you or anybody else what treatment they should adopt.
I think it fair to say that most of the people here have already made their own informed choice about their treatment.
This is, is it not a forum about AP, run by AP?ers for Ap?ers. Having said that, I have not the slightest doubt that should someone on any form of treatment come here, They would receive the same fantastic support.
If your wife has made an informed decision to go with conventional treatment, good for her. I wish with every fibre that she gets relief from this awful life robbing disease.
As for me, and it?s already been said, I?ve had all the convention I want from my own Doctor, who incidentally miss- diagnosed my condition for 5 years. Miss-treated my PR related rash with shampoo and only concurred with my diagnosis after I told him what my disease actually was, and then outright refused me antibiotic treatment, stating there are no medical grounds to do so.
Oh and one more thing, I?ve been on antibiotics just over a week and it?s cleared up a waterworks infection that according to my Doc I didn?t have.
I have no wish to upset anyone and I apologise in particular to tbird2340 for the way the thread has digressed and who was only after a little re-assurance.
To quote your own words Joe “The best we can do is look at all the existing data and go from there.” lets put this to bed leave it there.
I only have enough energy for the PR fight I?m already in, so I won?t comment further on this subject.
[user=13]Parisa[/user] wrote:
Please respect our wish to dedicate this site to the antibiotic treatment of autoimmune conditions.
I do. It's when posters misrepresent other treatments and my views that I speak up. I also would challenge you to find a post where I am anti-AP. I've always said it is what I would try first, is the safest treatment, and I believe in the infectious etiology although I feel that is not the only piece of the puzzle. I've also never proclaimed biologics as “wonder” drugs, so I don't know why you quoted the word. I always say they don't work for everyone and they have side effects. Forgive me if I don't buy into the view that they are evil poisons concocted by the big mean pharmaceutical companies who want all our money before they kill us.
If you've paid attention, I never start a thread about biologics (as others do) so accusing me of promoting them is going a little far. I will respond with evidence based rebuttals when someone demonizes them, as I believe nobody is served by scare mongering and fear tactics.
It's easy to see why some people, including the ACR, see AP proponents as cult-like when you can't even accept rational, evidence based opinions.
[user=1137]Noel[/user] wrote:
I absolutely 100% stand behind my comments, which were based on hundreds of hours of research by myself, not third party information or hearsay, my own research.
It only takes me a few minutes of searching to find research that directly rebuts your original assertions. It was not my intention to insult you, and I apologize. I also hope you, and everyone, finds a treatment that delivers them from the horrors of these diseases. I might be wrong that people here want accurate information. Maybe it helps the placebo affect if one feels morally superior and self-righteous about the treatment they have chosen at the expense of other treatments. That would be an interesting area of research.
[user=30]lynnie_sydney[/user] wrote:
When you censure or belittle others on the board who are making an effort to provide solid relevant information. no one belittled Joe. But, in this instance, Joe did not provide solid, relevant or substantiated information. He just shot Noel down. As I said in my post, I respect Joe's generally balanced points of view.Sorry Lynnie, I have posted links many times to research substantiating my information. But if you are going to call me out for not providing substantiated information, shouldn't you do the same for Noel? I saw no links in his post to substantiate his questionable views regarding conventional meds. As for relavance, why not question the relavance of posting about conventional meds in the first place? I was merely responding, I didn't start it. As for “solid”, if you can find something that disputes anything I posted, I would be interested in reading it.
Anyway, if you are interested:
DISCLAIMER: I KNOW THIS SITE IS FOR INFORMATION AND SUPPORT OF AP. PLEASE DISREGARD THESE LINKS IF YOU HAVE NO INTEREST IN OTHER TREATMENTS
Efficacy:
http://www.drugs.com/clinical_trials/enbrel-etanercept-first-biologic-published-efficacy-safety-data-up-decade-continuous-moderate-5951.htmlExcerpt:
Data from two long-term, open-label extension studies presented at ACR showed that ENBREL provided improvement in the signs and symptoms of RA that was maintained for up to 10 years in adult patients with early rheumatoid arthritis (ERA) or long-standing RA (LRA). Approximately one-third of patients who started either study continued on ENBREL throughout the decade of use.Safety and side effects of biologics:
http://www.bio-medicine.org/medicine-news/Study-Reinforces-Safety-of-Long-term-Biologic-Treatment-for-Rheumatoid-Arthritis-20632-1/Excerpt:
As part of the study, researchers analysed 2,054 patients receiving this biologic treatment for up to nine years by monitoring them for serious adverse events (SAEs), serious and opportunistic infections, sepsis, malignancies and lymphomas.Researchers found that the overall rates of SAEs were similar to control groups (0.11 pt-yr and 0.17 pt/yr vs 0.11-0.20/pt yr), as were serious infections, and reports of opportunistic infection were rare, that means that there were improvements in disability whilst title=”See more about “safety”” class=”red” onclick=”window.open('http://search.bio-medicine.org/more.asp?m=safety');”safety was also sustained over the long-term in the patients.
Methotrexate as a safe long-term treatment:
http://www.springerlink.com/content/qtx36122x4736213/Please bear in mind these were studies I found quickly, but I assure you many more like them exist.
Joe,
I stand by my statement that statistics are tricky, and easily manipulated to meet the desired end result. In 2007 alone the sales of Enbrel accounted for $3.2 Billion in sales for Amgen and $2 Billion in sales for Wyeth. That is 5.2 billion, not million, BILLION.Are you so sure that the studies you place so much trust in are not tainted by that kind of money. Trust me they are likely tainted. I worked for a biotech research company that did some work for one of the big pharmaceutical companies, looking for new drug candidates. I witnessed more that my fair share of unethical scientists, and upper management that would have sold their mothers to get a piece of that kind of action. It happens all the time. I watched as supervisors would remove data that did not suit them. Don't even get me started on the corruption in the FDA.
For that reason I place more stock in what people on this board tell me as to what works for them, or does not work for them, than studies that are paid for and pushed by big pharma.
Starla
I agreed with you that statistics are tricky. I don't dispute the fact there are unethical people in every profession, including the health profession. I am also not under the illusion that there are not doctors out there who are not taking advantage of the anti-drug company sentiment and misleading patients into years and years of alternative treatments and hokery in order to line their pockets. It goes both ways.
Joe,
Don't forget that right on the insert with the biologic and in bold print is the warning
“People have died using this drug”
It also instructs you to not take this medication if you have a cut. I always have a cut somewhere.
Biologics are far from safe.
As you know, I am one who was unable to take Enbrel. I developed one infection after another.
Below is part of an e-mail I received. My friend told a friend of hers about me and roadback. Here is her experience with Enbrel.
Thank you so much. This is great information. FYI, in addition to> the RA, I also have had sarcoidosis since I was 28 and went into
> remission
when I was around 30. Susan is so right about the meds. I've been on
> Predisone for almost 3 years now which is really taking a toll on me.
> Aside from the 30 pounds I've gained, it's damaging bone, etc. Weight
> gain for me is very stressful as the more I gain the less it seems
> that I can do. I've also been on all of the other RA medications and
> they can do you in for sure. In November I almost died from a blood
> infection. Guess what caused it? Yes, Embrel (sp?). The up side is
> that they found blood clots in my legs which might have gone
> undetected if I had not been in the hospital. I've been very
> fortunate in as much as I can still ride Tucker. I've been on blood
> thinners since November and was advised not to ride. BUT, I'm very
> careful when I ride and I only ride Tucker. It's really helped with
> my depression (I've also just started taking cymbalta, an
> antidepressant which seems to be working for me). Anyway, thanks so
> much for all of this good information.
Another personal story was from a lady whom I met when she looked at a house I had for sale. Her husband had RA. He did all the RA medications until he finally died of lymphoma. He crippled inspite of the medications.
I met another lady while riding. Her mother died of congestive heart failure which was a complication of her RA. She did the standard medications. I remember reading in the beginning that it is unknown if the disease causes these complications or the medications for the disease. She crippled inspite of the medications.
I met a lady in a doctors office. She had had RA for 10 yrs. Her hands were horribly deformed inspite of the standard medications.
These are people I have personally met.
I am driven to find and fix all my causes. My doctor seems to be doing a very good job so far.
I don't feel the standard medicines need a champion of their cause. They have the entire field of rheumatology and the Arthritis Foundation as well as an unlimited (so it seems) source of advertising dollars to promote their products.
Most of us came here because we were looking for an alternative to the standard medicines.
Susan
[user=20]Joe M[/user] wrote:
I've always said it is what I would try first, is the safest treatment, and I believe in the infectious etiology although I feel that is not the only piece of the puzzle.
Joe, I was following this thread for a while quietly, as many out here; I didn?t want to take sides. Especially that back when I started AP, Joe was the one who made me feel better about it. Back then I thought to myself wow he is with very fair and leveled answers/opinions. I liked that there was not much of emotions and not to bios. But now you contradicting yourself and I?m not sure where you stand?
If you are pro-AP, then why your wife is on Biologics? Also sometimes you sound like a rheumatologist yourself, are you?
No Anna, I'm not a rheumatologist, I'm a computer guy. Why is my wife on biologics? Because after almost a year of AP she still could not function well enough to care for our children or live anywhere near a normal life. I'm not saying that to discredit AP, it's just a fact. Luckily we found something that works for us. Susan's stories remind us that not everyone is fortunate to find something that works for them. I know there are people who think Michelle should have tried various diets, supplements, etc to enhace AP and it was her fault it didn't work, and so be it. AP would be the first thing I'd try with kids if they came down with it. So no, I am not anti-AP at all, and I'm not sure how I'm contradicting myself. I don't think a person has to be anti-conventionals if they are pro-AP, and vice-versa.
So how's it working for you? Hope you are well.
JoeNoel – just wanted to add something. I think I remember from the other site that doxy was the abx you were trialling. I'm wondering the reason that mino wasnt your choice (think brand called Minomycin in the UK as here????). It's generally thought to have better penetration than doxy and an extended spectrum of activity. Anyway, just something to ponder. You can read about my 21 year journey with PRA and my success with mino in the testimonials section. The link is below. Best, Lynnie
https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/490.html
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)My husband is a computer guy also, and we also have 2 small kids. I'm doing OK, I have bad and good days, in general I?m slightly better since I started AP, mostly it's my wrists that involved and to answer your question –I'm still working fulltime as a hygienist, which say a lot. And I expect myself to work only if I could be as good (performance) as before diagnosis. I don't know if I completely see it as infectious cause but if abx will help me on the long run, then it's all I ask.
Is your wife got no help at all from abx? What/how was she taken?? Did she try MSM?
It?s not my place to advise or even suggest, but you KNOW that she will never be able get off of the biologics, which means the longer she takes the more chance for her to have the side effects (especially cancer).
I know I've posted before about the tough choices that we all have to make in managing our illnesses. I'll try to make this post short but to the point. Some of us don't have to time to wait for AP to work. We have bills to pay, families to raise, and joints or eyes or other major organs that are being permanently damaged. Remember that abx don't repair damaged joints. I've also posted before asking if we would all be so against biologics if the side effects could be resolved, and we could greatly minimize the herxes from taking the abx. This IS a multilayered disease that involves bacteria and an overly sensitive immune system. IMO, if we could safely calm down our immune system while concurrently using abx the get rid of the bacteria, we would have the best of both worlds. And research is going on to make the biologics safer. I admire all of you who are diligent in taking AP and not giving in to other more dangerous meds like steroids or biologics. I have to say here tho that abx are not w/out side effects, I had to stop AP after a year because it hurt my stomach so badly. We all take probiotics because abx ALWAYS leave us open to several other bugs and fungus, so if we're going to talk about drugs that cause infections we have to include abx.
There have been many successes recently, which is wonderful. But I've noticed that most of these successes have been with people who have been recently diagnosed. It's a different story for those of us who have been sick for 10-20 yrs. AP is much slower to work and our disease have progressed farther, forcing us to quit work or school. I've posted a little bit about my struggle with AP, but not all, and I feel that it's now truth time. Warning: depressing turn ahead.
I stopped AP over a year ago and starting up again in Sept at a very slow pace. I have been trying to get my life back for 3 yrs. I've been on prednisone for 12 yrs and am fighting the inevitable side effects. I've gone from 120 lbs to 200 lbs, then back down to 130 lbs during a remission brought on by Remicade where I was able to reduce the prednisone. Then I found out about AP and I wanted to try it because I knew I needed to get off of the prednisone and I was scared by the side effects of biologics. That was almost 3 yrs ago, my disease has returned with a vengeance and I'm now back up to 200lbs because of the high does of prednisone again. :headbang::headbang::headbang: I'm not sure I would be in this shape if I had just stayed on the biologic. I've had to quit school and work, and I have no social life because of the pain and fatigue. Having made no progress on a once /week dose of zith, I recently increased it to 2 pills/week. W/in 10 days I got the herx from @*@*. The pain has been unbearable to the point that I've contemplated going to the ER for a morphine drip. Many of you know how I feel about narcotics, so that is a big deal.I do believe that AP works, but I'm now convinced that for someone like me, I need the abx in IV form to get better. Considering how painful this herx is from 2 pills a week, I don't even want to think about what an IV will do. It's going to be painful and expensive but I've got to try it. However, the reality is that statistics show that AP does not work as well for people who have been ill for a long time, at best it may just stop further progression. My AP doctor in AZ told me the same thing. If this turns out to be true, am I supposed to live for the next 20-30 yrs sitting in my apt and watching tv, or sleeping, in constant pain? This is something I refuse to do. I would rather take a med that might cause a fatal side effect and REALLY live rather than take abx and just exist while waiting for a long slow death to relieve me from this pain.
Okay, depressing turn ends. I'm sorry if this is too real for this forum, but all of this debate is so pointless. Yes this forum was created to inform, encourage and educate about AP, but also to share other forms of treatment, not just for the arthritis or SD but for the herxes, gut problems, detoxing, etc. I don't ascribe to everything I read here, but I usually take advice that I ask for to see if it will work. Sometimes it does, and sometimes it doesn't. For those of you fortunate to have found AP early, I 'm happy for you. You may never be faced with difficult decisions about meds, and you may not have to face the immunological side of these diseases. But many people do have relapses after 5-6 yrs and have to decide what to do when that happens. Hopefully changing up their dosage or abx does the trick. I'm grateful for all of the opinions and information voiced here. I want to stay informed on any news about any drug therapy, for good or ill. But I also need support from people who understand that a this point, I need biologics, they are the lesser of 2 evils if I can get off the steroids. This is the only place I have found where I can find support like this w/out the fighting. We're fighting strong diseases so naturally we have strong opinions, but in the end we're all just trying to beat this thing the best way we know how. I don't know how the rest of you feel, but I need you guys; opinions, lumps, warts and all.
Sorry for the sappy reality,
longwinded as usual, linda
Anna, Michelle felt best immediately following the initial IV's with Dr. S. She was pain free for awhile, then the symptoms started creeping back in. We did another round of IV's about eight months in, but things didn't improve much. From that point it got worse and worse until she couldn't get out of bed most days. She did not try MSM.
I try to be optimistic and think she won't have to be on biologics the rest of her life. Either they will come up with something better and safer, or they will find a cure. I try to not think about the cancer thing, because the studies are inconclusive, and the cancer risk is increased from just having RA in the first place.
Thanks for asking-
JoeNo cult follower here. I have researched every treatment that my husband has been on. The conventional treatments were killing my husband because his autoimmune disease is caused by a bacterial infection. An infection that the rheumatologists couldn't be bothered to test for because they had their immune suppressing wonder drugs. Well, those drugs lead to pneumonia and three months on oxygen. It took my husband three years to wean off the prednisone and he now has osteopenia and cataracts and there are other damages we are probably as of yet unaware of.
I put the pieces together, I asked for Lyme testing and I have found the doctors that are getting my husband well. To say that we are blindly following AP protocol is inaccurate. As a matter of fact, because my husband has Lyme disease the typical minocycline doesn't work for him. My belief in AP isn't in the mysterious anti-inflammatory properties of antibiotics but in searching for the cause of the illlness and treating it. Not dismantling the immune system so you can relieve symptoms.
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