Depressing Rheumy appointment

[PhilC]

[user=123]Fran[/user] wrote:

This joint damage has occurred while I've been on AP (since that's the only
 medication I've taken since I got RA).

Hi Fran,

Are you saying that you've only taken mino or doxy (or another antibiotic) for
your RA, and nothing else?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Maz]

[user=2144]rajah99[/user] wrote:

So are you saying that AP treatment is not going to prevent joint damage?

If someone has been recently diagnosed, and has very high RF readings ( above 600), that would indicate being more prone to serious joint damage,  then is AP not really suitable for them?

Im new with all this, and been reading as much as i can on this site almost every night for 2 weeks. But i cant get my head around whether AP slows the joint damage or just relieves the symptoms. I read the article that you posted, and the Prof implies this very conclusion.

Hi Rajah,

You might be interested to read this article that was in the last RBF eBulletin. The article covered a presentation at the last American College of Rheumatology meeting in the Fall:

https://www.roadback.org/EmailBlasts/ebulletin_fall09.html#ACR

As this presenter mentioned at the ACR meeting, tetracycline antibiotics have been proven to be safe and effective in the treatment of RA since the late 1940s, because they have so many properties in addition to their antibacterial ones, including properties that block enzymes that cause joint destruction.

The thing about AP is that it is not an overnight fix. If, after learning about the therapy, you choose to start it, it is important to know that there is usually a period of worsening in the beginning. This worsening (a jarish-herxheimer or “herx” for short) needs to be kept within tolerable levels, which is why Brown used low, pulsed doses, like 50 or 100mg on only a Mon, Wed or Fri to begin. The standard starting dose prescribed by rheumatologists is generally way too high (100mg twice a day, every day) and the herxing can become intolerable, increasing inflammation levels and, thus, greater risk of joint damage. This is likely why AP is not considered effective, both by patients and physicians who don't understand this phenomenon. So, starting AP low and slow is quite important for anyone with an inflammatory component to their arthritis.

I was also very severe in the beginning with every joint affected, however, I am now mostly pain-free, except for one peristent knee that is now also responding. I had to do this without the help of any type of immune-suppressant, because my highly seropositive RA was triggered by Lyme disease and coinfections. You can read about my progress in the my personal progress thread (which charts my labs) – link in my signature line below. I will not lie and say it was an easy journey…it wasn't and required a lot of patience and a good doctor to help me, but I am very grateful I have taken it. 🙂 Today, my immune system remains intact and, taking into account just how severe I was and how little hope I had, if I have joint damage in one knee, I consider this an acceptable risk/benefit to have taken. 

As you will read from the many accounts of other patients here, there is no guarantee that any of the standard rheumatological drugs will prevent joint damage. They may slow it (and may stop it for a period of time), but in my view, they also came with unacceptable longterm risks that I was unwilling to take. That said, I do consider myself very fortunate, because I was able to make this choice and did not have to work or look after small children while I was recovering. The journey is very different in each person's case and sometimes, in very severe cases, folk need supportive, conventional meds to help on their road back.

Rajah, I see you are newly registered here and just wanted to extend you a warm welcome! If we can support your journey in any way, please feel welcome to post at any time.

Peace, Maz

[rajah99]

Many thanks for the warm welcome Maz. And apologies Fran for jumping into your thread.

I have been discourteous for not introducing myself properly. Im male, 38, live in the UK.
Im currently not diagnosed with RA, but I fear I will be very shortly.

Ive had some mild stiffness in fingers for some time. I work on computers all day long so i  just happened to ask doctor about arthritis/carpal tunnel and he sent me off for some blood tests. I was actually very ill the week i took the blood tests, some heavy cold or mild flu. Anyhow, dr called me back and told me I had a RF of 640. However he said the xrays didnt show any problems with my hands or wrists. He told me i needed to see a Rheumy.

That was a shock result for me and i began to worry. but then my wrists started to hurt a little more, fingers began feeling a little more tender. i got sometimes a burning in the elbow. but mainly the forearm muscles and biceps and shoulders were feeling uncomfortable more than joints. no swelling in joints either, unless its so mild i cant really notice it now. hands feel better in hot water for sure.

So I went to see the Rheumy. Nice chap, tried to reassure me all was not lost yet, and RF was not a definite diag for RA. He sent me for more tests, antiCCP, ESR, etc. 

Two weeks later I havent had those results back yet. :doh:  Rheumy gave me 21 days of arcoxia (etoricoxib).  I didnt really feel i needed it, but began taking it anyway. im still hoping it might be other than RA, but sometimes i do feel inflammation across my chest, and im thinking now my knees feel a bit stiff. Funny how when u think u might have something u suddenly start noticing it all ? 🙂

Anyway, been reading everything under the sun, and discovered you guys. I think this AP would be my preferred choice of treatment. If the anticcp comes back positive maybe rheumy will diagnose RA, even without swelling or major pain.

Im wondering at that stage maybe i should start on the AP anyway…. nip it in the bud so to speak? If i have high RF and high antiCCP, i guess it means im more at risk from deformity and problematic disease, so i wouldnt want to delay a treatment that may take a while to kick in.

Ive read many of your personal stories, and youve given me much more hope.

[rajah99]

Oh and i did see that paper before, Maz. Interestingly I live in the town right next to Wycombe, so im going to try and locate the doctor who gave that study: “M.H.Q Adwan of Wycombe Hospital”. Would be good to have a local expert, we seem to be in short supply of them in the UK.

[PhilC]

[user=20]Joe M[/user] wrote:

This article does a good job, in my opinion, of objectively reviewing the major studies that have been done with minocycline for RA.  It discusses lab findings, clinical findings, and joint erosion.

http://www.nras.org.uk/about_rheumatoid_arthritis/newly_diagnosed/
which_drugs_are_used/minocycline_therapy_for_rheumatoid_arthritis.aspx

The problem with articles like this one is the research that they are based on. Researchers have either chosen to ignore Dr. Brown's work or they are completely oblivious to its existence. Because of that, any conclusions that they are able to draw from their results are not necessarily relevant to the antibiotic protocol developed by Dr. Brown, and may be misleading.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[APbeliever]

Rajah, I was seronegative on my anticcp, RF and everything and rheumys were still unsure about the diagnosis for the past 18 months. However, after last friday I am told they finally decided I had RA due to erosion in my feet. This is the really bad part about RA specially if you happen to be seronegative. Like you, I work with computers all day long and the pain is unbearable  in my fingers and wrists. 

[Maz]

[user=2144]rajah99[/user] wrote:

Anyway, been reading everything under the sun, and discovered you guys. I think this AP would be my preferred choice of treatment. If the anticcp comes back positive maybe rheumy will diagnose RA, even without swelling or major pain.

Im wondering at that stage maybe i should start on the AP anyway…. nip it in the bud so to speak? If i have high RF and high antiCCP, i guess it means im more at risk from deformity and problematic disease, so i wouldnt want to delay a treatment that may take a while to kick in.

Rajah, it's very nice to meet you and don't worry about jumping into the conversation when you feel moved to do so. It takes a while to get used to this forum software and all newcomers are very welcome. 🙂

If this helps, you're within an hour from Guildford, Surrey, where a very good AP physician practices. He actually came to the US to train at Dr Brown's clinic shortly after Brown had passed away and uses both oral and IV antibiotic therapy. If you'd like his contact info, just let us know and one of us would be happy to send it to you.

Other British research that may be of help to you is a study published in 2006 that was carried out at Charing Cross Hosp and paralleled Brown's work. I have been led to understand that the Guildford AP doc was somehow involved in these studies:

https://www.roadback.org/EmailBlasts/ebulletin_summer09.html

British Study Parallels the Legacy of Dr Brown

Researchers at Charing Cross Hospital in London, England, have recently published results of a single-blind randomized trial in the Journal of Rheumatology, the purpose of which was to demonstrate, “…the potential clinical efficacy of combination antibiotic therapy in treating rheumatoid arthritis.” Twenty-one patients with active rheumatoid arthritis were selected for the twelve-month study, which included treatment closely mirroring Dr. Brown's antibiotic therapy, using intravenous infusions of clindamycin and oral tetracycline. Study authors conclude that, “Combined antibiotic therapy with intravenous clindamycin and oral tetracycline may be useful in the management of active RA,” and that, “A double-blind, placebocontrolled trial of therapy is justified.”

Source: http://www.jrheum.org/content/33/2/224.abstract

It is true that RF can be elevated in a number of conditions, including infections, although one does not need to be seropositive with anti-CCP for a confirmation of an RA diagnosis. Some RAers are also completely seronegative, which, as APBeliever has experienced, can be a bit confounding.

One very good thing in your favor is that you are very early in your disease, if is indeed RA, and by starting AP early you have every reason to believe that you can turn it around relatively more swiftly than more entrenched, longstanding disease. You are also still young and male, both of which bodes well for a good recovery.  

You'll find a tremendous amount of hope here! Newcomers often ask where all the people in remission are…well, they're off out enjoying life again, as it should be…but occasionally an old timer in longstanding remission will pop in and wave to everyone. In the upcoming edition of the RBF eBulletin, we also have a new Remission Corner story of an RAer in remission. Should be coming out next week, if you want to sign up for your email copy. Also, if you haven't had a chance yet to read, The New Arthritis Breakthrough, it comes highly recommended, as it helps greatly to understand the rationale for the use of AP in rheumatic diseases. That book is such an inspiration…I must have read it now 5 or 6 times and kept me going through some rough patches.

Hang in there, Rajah! We're all here for you if you should need any support along the way…and lots of experienced APers here who can share what they have done to support their therapy.

Warm wishes for a swift recovery! 😀

Peace, Maz 

 

[Joe M]

[user=1429]PhilC[/user] wrote:

[user=20]Joe M[/user] wrote:

This article does a good job, in my opinion, of objectively reviewing the major studies that have been done with minocycline for RA.  It discusses lab findings, clinical findings, and joint erosion.

http://www.nras.org.uk/about_rheumatoid_arthritis/newly_diagnosed/
which_drugs_are_used/minocycline_therapy_for_rheumatoid_arthritis.aspx

The problem with articles like this one is the research that they are based on. Researchers have either chosen to ignore Dr. Brown's work or they are completely oblivious to its existence. Because of that, any conclusions that they are able to draw from their results are not necessarily relevant to the antibiotic protocol developed by Dr. Brown, and may be misleading.

Phil

Phil,
I thought this article was very complimentary of AP.  Did you read it? 

It may be concluded, therefore, that minocycline is a good drug in terms of symptom relief and joint swelling relief and improvement in laboratory measures of inflammation, but that it has no important affect on joint damage.

One of the studies reviewed in this article is MIRA, the study touted in Road Back by Scammell and Brown and commissioned by the NIH in large part due to the work of the RBF.  It is beyond the pale to suggest the researchers were oblivious to Dr. Brown's work.

If your concern is the studies did not follow Dr. Brown's protocol, I agree.  Mainly because Dr. Brown did not have a standard protocol.  His treatment plans were tailored to the individual, a tradition still in use by the majority of AP patients today.  Not only did Dr. Brown tailor the antibiotic dose, he was not afraid to add drugs like prednisone when needed.

Fran is not very specific about which joints are affected and the level of progression, but RA with joint damage can be a serious situation.  If Fran were to decide to try and stop the progression it is my hope she works with a doctor to review the choices available to her in an objective, advocate-free environment.
Joe

[Kim]

[user=20]Joe M[/user] wrote:

Fran is not very specific about which joints are affected and the level of progression, but RA with joint damage can be a serious situation.  If Fran were to decide to try and stop the progression it is my hope she works with a doctor to review the choices available to her in an objective, advocate-free environment.

Here's my UN-scientific opinion on the whole thing.  Just look at the joints of every patient in a rheumy's waiting room.  The ones I've seen are not looking all that great.  I'll take my joints over theirs any day.

kim

[katieb]

Hi Rajah,

Just happened to spot your post, and a number of things about your story sound very similar to how mine started off about 2 years ago.

My original RF was only 61, but it did go up to over 300 before it started coming back down. I too had difficulty obtaining a diagnosis in the beginning.

I have now been on mino for 21 months and am close to remission, with only slight problems in my wrists. I had x-rays of hands and feet in January which were compared to those taken 18 months previously. The rheumy described these as having 'some changes but nothing significant', and to be repeated in another year.
So looks like I probably was lucky enough to 'nip it in the bud', and I am hopeful that I won't now suffer much joint damage.

You can read the full story on my personal thread:

http://rbfbb.org/view_topic.php?id=1975&forum_id=3

I haven't updated that for about 9 months now, but reading it again, I now have no pain at all in shoulders or elbow, the knee bends as do all the fingers. Just residual discomfort in wrists, and soles of feet hurt intermittently.

Hope this helps you to decide what course to take. Personally I decided to take the mino before my diagnosis, as I felt it was a mild enough drug not to do me any harm.

Let us know how you get on !

Katie 🙂

[Fran]

Phil-  Yes, I have only tried AP and I started it within weeks of my first symptoms.  I have done mino in varying dosages until I could no longer take it, IV clindy, zithro and doxy.  Along with an enormous amount of various supplements I've tried over the years

---

probably just creating very expensive pee!

I decided to stop doxy last week and I am going to try and figure out why I am so bad right now and then decide what to do about it.  My permanent damage appears to be in a couple fingers, right elbow and left shoulder.

Having four young kids makes me nervous for the future and my ability to parent.

Here's my question to the panel—I stopped doxy last Wednesday and today (monday) I'm noticing less inflammation and a little less pain.  Its not wonderful, but its no longer debilitating.  Is it possible the doxy is  aggravating my condition?  And if so, why would it just start aggravating it after I've been on doxy almost a year??  Or is this just the waxing and waning of RA?  My last clindy IV was 31 days ago…..does that have any bearing?  This is so confusing!

[Maz]

[user=467]katieb[/user] wrote:

I haven't updated that for about 9 months now, but reading it again, I now have no pain at all in shoulders or elbow, the knee bends as do all the fingers. Just residual discomfort in wrists, and soles of feet hurt intermittently.

Katie, when you went to see Dr D, did he test you for bartonella when he ran your IGeneX labs? Sole pain is pretty typical of this coinfection of Lyme.

Just a thought…

Peace, Maz

[Maz]

[user=123]Fran[/user] wrote:

Here's my question to the panel—I stopped doxy last Wednesday and today (monday) I'm noticing less inflammation and a little less pain.  Its not wonderful, but its no longer debilitating.  Is it possible the doxy is  aggravating my condition?  And if so, why would it just start aggravating it after I've been on doxy almost a year??  Or is this just the waxing and waning of RA?  My last clindy IV was 31 days ago…..does that have any bearing?  This is so confusing!

Hi Fran,

Just some thoughts to ponder….after being on doxy a year, to have a relapse might indicate unresolved opportunistic coinfections that are rising to the surface….bacterial, fungal, protozoal, etc. Here is a link to the main site about this and other things to potentially consider:

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/89.html  

A round of IV Clindy could definitely set off a round of herxing.

AP can take 3 to 5 years in some cases to bring a person to remission (see Brown video and particularly the bone scans taken of one patient over a period of several years…these are quite revealing). It's not that flares won't continue to occur…they will. It's just that these flares should begin to decrease in frequency, duration and intensity with time. It's the longterm trend one needs to look at with AP.

It sounds like you're at a crossroads, Fran. You have 4 kids to care for – no mean task when healthy! – so I empathize with your need to make some type of decision. In your shoes, I would probably look further for possible untreated infections….Lyme (Iowa is pretty Lyme endemic) and candida, for instance, as well as check for gluten sensitivities or other food offenders. I'd also be doing what I could to detox. This involves a lot of hard work and self-advocacy…something you may not feel up to doing right now. So, if you need extra conventional supportive meds while pursuing all this, it's certainly no failing. Everyone's situation is unique and we're all here to support whatever choice you make.

Peace, Maz

[katieb]

Hi Maz, That was well timed ! I haven't met Dr D yet, because of the snow, only spoken to him on the phone. But I am going down tomorrow (all the snow has gone at last !!). So I will certainly ask him about the Bartonella. I am also going to ask about the Band 31 testing. I did try to speak to Dr H at IGenex (on a Monday and on a Tuesday), but was told by the receptionist that I ought to be asking my own Dr that question. So I will !!

I'll let you know how it goes.

Thanks !

Katie 🙂

[Maz]

[user=467]katieb[/user] wrote:

That was well timed ! I haven't met Dr D yet, because of the snow, only spoken to him on the phone. But I am going down tomorrow (all the snow has gone at last !!). So I will certainly ask him about the Bartonella. I am also going to ask about the Band 31 testing. I did try to speak to Dr H at IGenex (on a Monday and on a Tuesday), but was told by the receptionist that I ought to be asking my own Dr that question. So I will !!

Katie, lots of info out there on bartonellosis. Here's just one from CALDA, a reliable, Lyme Literate source:

http://www.lymedisease.org/lyme101/coinfections/bartonella.html

Although doxy is used for bartonella, the fluroquinolones are probably most effective, as well as rifampin. Fluroquinolones come with warnings of tendon rupture, so I chose rifampin.

Sorry you got the brush off from IGeneX…I guess Dr H has been spending his days answering RBFer queries and the receptionist was told to tell folk to talk to their docs! :X Pretty annoying when one spends a fortune on these tests…perhaps they should have a service desk set up for these types of queries, eh? Still Dr D is pretty good, I think, and Ruth has just been through the whole bartonella business, so I'm sure she could fill you in on his MO.

Good luck, Katie, with your appt tomorrow…looking fwd to hearing how it all goes. 🙂

Peace, Maz

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