Need some advice- Debating whether to try AP or Enbrel….

[klynn141]

Hi,

I will try to make this short, but I really need some advice from others that have had Moderate to Severe RA that have had successful results going through AP THerapy.  I guess I need a little push.  I “think” this is a safer alertnative to Enbrel and the drugs i'm currently on (Methotrexate and Prednisone). I'm having side affects and my Rheumy keeps pushing and pushing to take Enbrel…Well, I filled the prescription, it's sitting in my frige, But I just dont have the guts to take it.  After reading it could activate Latent TB wich I have been tested postitive for and on treatment for it for 6 months, after reading that it could cause cancer and other horrible infections, I would ALMOST rather be in pain then take this.

Have any of you had day after day of pain involving many , many joints thats chronic and ongoing not just little flares here and there,  had days where you cant open a jar, or walk very well, have lumps from your RA in your feet or hands, feel so doggon rotten and exhausted, cant keep up on housework and it's affecting your quality of life….then gotten on AP Therapy and had success, even if it did take a few years?

I watched Dr . Brown's video, I ordered Dr. Schimmel's (sp) book and am waiting for it to arrive. I have my Rheumy appt tomorrow and am debating whether to just take the stupid Enbrel to her for my first shot, or try and wait to see an AP Therapy dr. which i did get an email on thats near me.

There's so much debate over AP Therapy, I'm amazed at it. A lot of people on other forums seem angry almost when the topic gets brought up, but if this has truly worked for others than that is a good thing and dont understand why you wouldnt want to tell others about it. Is it because Dr. Brown's research is too old now compared to all the new research with RA that his opinion of it being  a bacterial infection isnt true to most doctors?  Can a person still take Methotrexate along with Minocin then slowly taper of Methotrexate once things start getting better? Just wondering what other's have gone through or what their doctors might have told them with these questions.

Thanks for any comments, or advice you may have.

Kelly

[amyid]

I have moderate RA, with some of the symptoms you have described, but not all. I have had trouble holding a knife to cut food, brushing my hair, joint pain in major and minor joints- though I have no outwardly obvious joint deformaties. I also commonly experienced crushing fatigue, aches all over, brain fog, etc. When I was diagnosed in 08 I was immediately put on prednisone and methotrexate by my Rheumy. When she wanted me to try more drugs with more intense possible side effects, everything inside me screamed “WAIT>>>THERE HAS TO BE ANOTHER OPTION!!” That is when I started researching and came across the Road Back Foundation. AP was my choice after I did a LOT of reading–it made sense TO me- FOR me.

I did a series of IVs in Iowa and more at home. I tapered of the methotrexate and pred. The AP protocol (Clindy IV's and Minocin) helped me tremendously!!!!! A while back I had to stop my minocin for other health issues and of course all my symptoms came back– hard!

So now I am set to have another IV series, am back on my Minocin (and sadly, small dose of pred.) to get going again.

I am also being tested for Lyme and found out I also have a magnesium deficiency that is certainly making my aches worse.

I guess my advice…and it is just my advice… is that you give AP a try. It does not work overnight. But I believe 100% that it is a route to try before other drugs that can have dire side effects.

But you are your own best judge. Your hesitancy says that you are concerned about the Enbrel…don't discount your instincts. Weigh your own research, body knowledge and pain, etc. along with the Dr.'s advice. I also highly recommend you consult with an AP doc if you can.

Best of luck to you!:D

DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂

[Maz]

[user=2603]klynn141[/user] wrote:

Have any of you had day after day of pain involving many , many joints thats chronic and ongoing not just little flares here and there,  had days where you cant open a jar, or walk very well, have lumps from your RA in your feet or hands, feel so doggon rotten and exhausted, cant keep up on housework and it's affecting your quality of life….then gotten on AP Therapy and had success, even if it did take a few years?

Hi Kelly and welcome to the RBF forum…nice to meet you, though very sorry you had to seek us out.

Yes, I am someone who started with swift onset, extremely severe RA in every joint and was so incapcitated that I could not do anything for myself. Just walking across a room was excruciating and I needed help to turn in bed, switch things on and off, squeeze toothpaste, shower, dress, get up and down from toilet, etc. etc. I went from being 46 and in the best health of my life since my early 20s, working out with a boot camp trainer, to being totally dependent on others for the smallest of things.

In my case, choosing antibiotic therapy was a no-brainer, as I knew I had Lyme disease…I live in CT and had two EM rashes that heralded all the classic flu-like and migrating joint symptoms that quickly morphed into all-out RA within 2 months. My immune system just crashed as it was during a period of mourning for the loss of my mother. However, learning about the controversies of antibiotic therapy for chronic infections was eye-opening and having to pay out of pocket for a physician to help me get well again was…well…shocking. When it was such a clear-cut case of chronic infection triggering my RA, it just seemed bizarre to me that the field of rheumatology would want to shut down my immune system so that I couldn't fight what was going on. So, I never saw a rheumatologist and never took anything immunosuppressive, even prednisone. Looking back now, I can honestly say I don't know how I did it and I don't know if I could do it again, but I'm stubborn and bull-headed…what can I say?

Within about 4 months of antibiotic therapy, I had the lab evidence that I needed to confirm that antibiotic therapy was working for me….I had the classic early worsening that Brown spoke of (both in labs and symptoms) and then everything started improving in very small steps….in a kind of 3 steps fwd and 2 step back dance all the way.

So, has it worked for me? Yes, I'd say very well, but because I was so severe, I'd say it was absolutely vital to understand the therapy and the rationale for its use before plunging in. In my own very severe case, I knew there was going to be a risk of joint damage and I was willing to take that over other possible longterm risks from conventionally used meds. It's now been 3 years and 8 months since I started antibiotic therapy and I am still working on the last vestiges of my RA – I'm at about the 95% improved mark. I am loathe to say I am in complete remission, as I don't know if I will ever reach that stage, however I wake with no morning stiffness now and just have some minor residual swelling in one knee and ankle. There is possibly damage in these two joints, but I consider it a small price to pay for having been so sick and clearing the infections that were keeping me so sick. I may at some point in the future need a knee replacement, but there is no guarantee that one would not need joint replacements on conventional meds either down the track. My mother-in-law has been on mtx for 15 years now for ankylosing spondylitis and psoriatic arthritis and it has not stopped her disease progression, just helped to palliate her pain. She suffers from very serious joint infections in her toes and needs to take heavy-hitting codeine-based pain meds. She also has severe joint damage – fingers at right angles and her poor spine is completely fused with dowager's hump. All I take for occasional minor pain now is an Advil. I think seeing her condition and suffering also gave me further impetus to try to get at root causes.

Okay, so my case is on the extreme spectrum of degree of severity, but also in my choice of how to treat it (without any form of immune-suppression) and I could never presume to encourage anyone to follow in my footsteps. I am very fortunate to have a husband who works and can support his family and has loved and supported me through this process. There have been blips in my treatment, too, where my doc has had to change things up in my protocol and figure out new protocols for me. Working with an experienced physician has been vital in this process and I could not have done it without his belief in infectious causes and his expertise.

I was fortunate and found antibiotic therapy early…others often find AP later on, after they have been on conventional meds for a while, like yourself. In those sorts of instances, experienced AP physicians will normally keep patients on the meds currently taken, wait for the patient to stabilize on AP and then work with the physician to gradually wean off the other drugs, one at a time, very slowly. When Brown was around, patients had the luxury of being in-patients in his clinic where they were under his close supervision when other drugs were withdrawn and antibiotic therapy started. We don't have this luxury today….so everything is a “low and slow” process with AP and complex cases need careful, knowledgable oversight by a physician who believes in the therapy and knows what they're doing. On the other hand, some people just add minocycline as another DMARD to their current regimen and that's perfectly okay, too…whatever works.

While any one of us here can share our experience of AP with you, it's so important to really understand the therapy before choosing it and diving in. Gut health is of prime import while on AP and probiotics are a necessity. You've probably figured out already that it's not an overnight sensation, as with prednisone. It can take many months and sometimes several years of close monitoring and protocol tweaking to turn severe RA around. Also, the more longstanding the disease, generally the longer it takes for a patient to respond and, as with any medication, it's important to get fully informed to understand the risk/benefits of such a choice. You seem like a pretty well-informed person already, carefully studying the drugs you're being offered, which should stand you in good stead. Also, you've watched the Brown video and so you've seen the bone scans he used to demonstrate how long it can take for AP to kick in and reverse joint swelling and inflammation. The example he used was a patient who had longstanding, severe disease and it took 3 years for the joints to return to normal. Of course, any joint damage incurred before or after starting AP, before remission is reached, cannot be reversed. Flares can and do continue when on AP, but with time they should become fewer, less intense and shorted in duration.

I know it's a hard decision whether or not to take the Enbrel with your history of latent TB. I'd be very concerned, too, and, frankly, I'm surprised this option has been offered in this scenario, as it's one of the FDA black box warnings on the biologics. Wish we could help you in your decision about whether to take this drug or not, Kelly, but we're just fellow patients here and none of us can offer medical advice, just what we have done, personally. I can share, however, that there are a number of folk here who do take conventional meds in combination with AP. In these sorts of instances, tetracycline antibiotics work primarily for their immune-modulating capabilities, because a fully functioning immune system is required for the bacteriostatic anti-bacterial props of this class of antibiotics to work. In effect, tetracyclines don't kill bugs, they just disable them by interfering with certain enzymatic processes needed by bugs to grow and reproduce. It's the immune system that then goes in for the kill. This is quite important to know, because at some point, when weaning off the other drugs, herxing and drug rebound is likely to occur.

As you are so severe, if you do ultimately choose AP, my best fellow patient insights would be to get as informed as possible about AP prior to making your decision. Then, if you decide to pursue AP, to find an experienced AP physician, even if it involves travel, who can offer IV therapy (as recommended by Brown for severe, longstanding disease) and who will monitor your progress and who will also help with weaning you off your other drugs, when you're ready. Longstanding, severe disease can and does respond to AP, but it really helps to have a knowledgable, supportive AP physician to work with.

As for the politics of AP, Road Back doesn't engage in recruiting APers. People find Road Back and then choose or don't choose the therapy once they've learned about it. We're just here to support those who do make a personal choice to use it and it's a no-judgment zone if folk need other meds to help along the way. 😉

Do hope something here helps, Kelly, and am sure others will chime in with their personal experiences of AP here. We're all at various points of being on AP…some just starting out, some working their way back to health and some in remission….though, t'was ever thus that those who are in remission tend to go off and enjoy life again, as it should be!

Peace, Maz

PS I just spoke by phone with one of the founding members of the Road Back Foundation, Pat Ganger (her scleroderma remission story is in the Scammell book). She shared with me that Carol Lang (her story is also in the book), a longtime patient of Dr. Brown's has now been on AP for over 50 years and has maintained remission from severe RA for that time, remaining on her AP. Radiological images of her joints show no damage whatsoever, though she does have one knee with osteoarthritis.

[klynn141]

Thanks so much Maz and Amyid. I do appreciate your stories and advice. Doesn't sound like a fun process in the beginning (weaning off current meds, getting worse before getting better) that worries me…BUT… long term it would be much better I would think.  No worries of long term effects with Enbrel or activating TB. I want to be around to watch my sons grow (ages 9 and 13)! I can wait if I know its a safer way to go! I do worry about joint damage on the way.

Any suggestions on how to know how experienced an AP physician is except to just ask? I did get a referral emailed to me.

Thanks

 

Kelly

[Maz]

[user=2603]klynn141[/user] wrote:

Any suggestions on how to know how experienced an AP physician is except to just ask? I did get a referral emailed to me.

Hi Kelly,

Which state do you live in? I'd be happy to send you a list of the most experienced AP docs on RBF's list and, with luck, one might be within reasonable distance to you. If you also have a local AP doc, then they may also be willing to work with a more experienced one, like Dr. S. in Iowa, who can guide your doc on how to manage your case. Dr S is also very kind about new patients emailing him and offering them insights on good starting doses, so it might also help you to email him, even if you don't actually make an appt with this doc…when you get your book, there is a chapter by Dr. S in it, who trained under Dr. Brown.

In the meantime, if you do choose to begin AP, there is nothing stopping you starting minocycline while you are on your other drugs….but it is ideal to read the book and understand the low and slow approach to starting the therapy, first, if you can. When folk are on other DMARDs when they begin AP, often they will start on 100mg minocycline twice a day, daily, but this can produce breakthrough herxing at this higher dose. Sometimes it's better to begin low and slow and build up to tolerance….but Dr. S. would be able to give good insight to you if you shoot off a quick email to him. Just let me know where you are and I'll send you a PM with a list.

Only took me a few days to read the book and I've read it a good 5 or 6 times since, both to keep me inspired and to understand the fine details. I think it will answer many questions you may have on your mind about the therapy.

Have you managed to read all the info on the main site yet…under the Education tab? There is a plethora of info there, too.

Peace, Maz

[DragonSlayer]

Hello, Kelly:

I do not have RA, but have no mean interest in this similar disease to my own.

And I have to suggest some things, just from a logical perspective:

1)  AP seems to work, despite no “accepted” explanation.  Well, unless otherwise identified, perhaps AP is treating the cause of this disease instead of just symptoms.

2)  Tnf-a “chimeric” biologic drugs are very clever and sometimes very effective, but they do not treat the cause, and their mechanism is well-defined.  And these activities are very narrow; certainly not as drastic as eliminating the entire immune system.

And with these things in mind, I do not know whether AP and tnf-a drugs are mutually exclusive:  Couldn't we get effective relief from the biologic drug while the AP was taking a little longer to work? 

The obfuscation caused by the mixing of therapies would soon enough be eliminated when You gave up the biologic, if symptoms did not return to their previous levels.

So, if You have the opportunity to find relief using both, it is something to consider.  Even if I had achieved total 'remission' using standard drugs, I would go for the AP upon learning about it–just because it at least has a chance of providing a real–instead of apparent–“cure;” well it is closer.

Now the caveats are that I'm not a doctor and have no direct experience except with my own AP for AS and I do not know the effects of the biologics on things like candidiasis which could be a problem with the AP, along with things like C. difficile overgrowth.  Every case is different.

Good Luck, with whatever decisions You make,
John

[Pip]

Hey Klynn – nice to 'see' you again.

I was diagnosed 'early onset severe' Palindromic RA.  I moved into regular RA before I started AP, and reversed back to PRA on AP.  There is some debate on whether or not PRA is a subset of RA (more kill me now pain, less damage in the beginning) or if we're an entirely different disease.  My research says we're a 'subset' because something in our bodies is more efficient at lessening the damage of RA.  Some studies point out that our migrating pain is the bodies attempt at 'isolating' the joint; yet they do not say what it's being isolated from.  LOL

I've been on AP almost 4 years and was an early responder because I'd only did one Pred pack and I didn't have a lot to 'undo'.  In this time I've ice skated with my now 9 year old, mall crawled (and nobody can cover a mall like I can), boogie boarded and jet skiied.  I haven't surfed yet (my goal) not because I am unable to physically, but because I'm still not putting this body in a bathing suit and doing that much exercise.  LOL

You have a right to be concerned about the biologics reactivating TB.  There were quite a few studies which came out about a year ago.  You might consider going to http://www.pubmed.org and typing in the biologic's name and TB – ie Enbrel or etanercept and TB or Tuberculosis.  You'll get all the studies and that is much more eye opening on 'true risk' vs what your doctor will tell you.

I do know of people who tapered mtx while on AP.  Personally, I'm against it, but that's just me.  I've seen too many posts where people start feeling good and they're just not willing to feel bad again to taper.  My opinion, and that's all it is, opinion, is that it's better to herx and be done with it.  Why go thru that all over again?

As to why most rheumies are not into AP, I think it's multifactoral.  They're were taught in school it didn't work (old days) and then the biologics were invented.  Now they have 'newer better medicine' so why would we use such 'old stuff'?  It doesn't hurt that the drug reps are constantly in doctors office talking up the latest and greatest in the pipeline and buying the office lunch, or Pharma is paying for your doc to take Con Ed in swanky exotic locations. 

Dragonslayer – unfortunately, I disagree, and think tnf's and AP should be mutually exclusive.  If we're already on them, then we need to do all that we can to get off them as soon as possible. 

When I was first on non-AP boards, I noticed a disturbing pattern.  Heck when I was on the RB, I looked for pattern here – who did well, what were they doing to get that way, and if people had problems, what were the usual suspects?  I wanted to figure out who got the elusive cure and what they did to get it.  Mind you, this was before I found Pubmed.

On non-AP boards, the first pattern I found was the first biologic usually lasted about 3 years (average).  The 2nd lasted about a year.  And the 3rd, about 3 months.  And yes, I am well aware that some people can last longer, and others can last less.  Anyway, I wanted to know why that happened. 

I think I've finally figured that out, and may be wrong, but it's not something I'm willing to take a chance on – your mileage may vary. 

It seems that the their well-defined mechanisms utilize one pathway for delivery.  However, when microbes have that pathway blocked, they just take or develop a NEW pathway.  This is why the onsets of secondary diseases develop like, oh, Rhupus or MS. 

In some cases, like with MIL or other drug based toxicities, the microbes can take 3 or more pathways.  (And those other drug based toxicities are almost all caused by calcium channel blocker).  Think of it this way, if the drug is taking up the calcium channel, nothing else can use it. 

As for C. difficile, yes, it can be caused by the biologics without any abx in the body.  That happened to my then 14 year old niece.  Researching Pubmed, I was no longer stunned to see how common that was.

As for candida – that's what most biologic users die from.  I'd seen a study which said 'contrary to all yeast, fungus tests, on autopsy, these patients died from it'.  Well, we see here that many of us come up negative for yeast, but our 'gut' says we have it, and we treat for it and feel better.  At least we realize that's a possiblity and premptively treat for it. 

I'm seeing a lot of research coming out like this lately –

http://arthritis-research.com/content/pdf/ar2970.pdf

I just don't think the little gains are worth the risk.

JMHO,

Hugs,

Pip

[A Friend]

Hello John,

I just found some interesting (unexpected) information posted by a parent of a son with Ankylosing Spondylitis. 

I did a search on RBF BB to find the PM of a member who has been seeking information for treatment of her child with AS — and also saw your post here, and read your profile below.  (If you'd like to have the AS-related post, I can forward it to you by PM.)

Am wondering if while you were on AP protocols, if you were also using yeast/fungal protocols along with AP? 

Getting the starches out of your diet sounds (to me anyway) like a key to “nipping yeast/fungal overgrowth in the bud”… if indeed this is one of the big culprits in this disease.  

Hope you are doing well! 

AF

[Author]

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