RE: & , response re alternate therapy

[Guest guest]

> I'll ask a lot of questions and report anything I think would be

helpful

> to this group in hopes that some are interested.

>

> thanks for your responses and information.

>

> Bev Hannon, Iowa

>

I'll be interested! I've been on minocycline for about 2 weeks.

Sierra

[Guest guest]

Bev,

I am certain that we have many members who have been incorrectly diagnosed.

It is common. It has happened to me and is an ongoing concern of mine

regarding the group. But that's not the point.

You mentioned your nephew and his friend's mother to, I assume, lend

credence to an unproven theory. I said, " we have indeed heard

many success stories here " in answer to your assertion that " most of you

have not gotten better " - a statement which, I assume, is meant persuade

members to try a treatment regimen based on an unproven theory.

In clinical studies, the diagnosis of participants is clearly defined and

confirmed by the study team. The results of any given trial are interpreted

with the assumptions made by the study team in mind.

Most members here are using therapies backed by scientific evidence that

demonstrates benefit in rheumatoid arthritis. To extrapolate from a single

group member's experience with a particular therapy and make a generalized

conclusion about that treatment would be inappropriate.

People may read the studies, listen to the stories here, discuss any issues

of concern with their own physicians, and then make a treatment decision. If

they choose to skip the first step, although I don't recommend it, that is

entirely up to them.

When there has been no formal study of a particular theory, and claims are

made related to that theory via testimonials, that is only anecdotal

evidence, or hearsay. How a diagnosis was reached in the subjects of

anecdotal cases is often unknown and undocumented.

If anecdotal evidence is presented as proof as a theory, then the subjects

of that anecdotal evidence should be judged by standards similar to that of

a clinical trial.

Members here need not be scrutinized in the same way; we aren't trying to

prove the safety and/or efficacy of a given treatment here - the trials have

already done that for us.

The starting points for discussion by people using proven therapies versus

those using unproven therapies are inherently different.

In the cases of your nephew and his friend's mother, before they began

treatment with Dr. Sinnott: How old were they? Did they have other diagnoses

in addition to RA? Were they both rheumatoid factor positive? How many times

the ULN? Did they have rheumatoid nodules? Did they have erosions or other

signs characteristic of RA visible on either x-rays or MRIs? Were their

acute phase reactants measured and elevated? Did they have swollen joints?

Tender joints? How many and which ones? Did they have morning stiffness? For

how long each morning? What about fatigue? What were the values of these

measures after treatment with Dr. Sinnott's therapy?

Aside from your nephew's age, I don't know any of the answers to these

questions. I can find data like this about study subjects. How certain

groups of such subjects responded to specific therapies and methods is

known. There are many more unknowns about Dr. Sinnott's patients, methods,

and results. It's difficult to draw meaningful conclusions about his work

and his patients because scientific data is absent.

Again, none of this is to say that minocycline isn't useful in RA. The

research indicates that it is. The American College of Rheumatology (ACR)

lists it as a DMARD. RA patients are prescribed minocycline by

rheumatologists (the recommended dosage is 100 mg twice a day) and, if their

disease is well-controlled and there are no serious adverse effects, they

may remain on it indefinitely. Wouldn't this be equivalent to the " low dose,

LONG term " criteria you stated? How would Dr. Sinnott's treatment be

different from this?

As for whether minocycline can induce a drug-free remission in rheumatoid

arthritis (and lupus and systemic sclerosis and psoriatic arthritis and

multiple sclerosis and fibromyalgia and ...) as a result of the eradication

of an occult, persistent infection: that is unproven. If any person or group

can achieve an 80% remission rate in patients no matter what rheumatic

disease is present, then show me the money!

Regarding Dr. Sinnott, I said: " If he could demonstrate that aggressive,

erosive, deforming disease could be halted by his methods, that would be

impressive. " " Halted " is the operative word, not " restored. " Although, as a

side note, there is evidence that some DMARDs, in addition to slowing or

stopping the disease process, may actually repair erosions.

I referenced MIRA because you claimed " no government studies will be done. "

Whatever negative fallout may have occurred after the trial, today in 2006,

minocycline is listed as a DMARD by the ACR.

As for treatment of systemic sclerosis (scleroderma) with minocycline, here

is a summary of the most recent study I could find:

************************************************

Arthritis Rheum. 2004 Feb;50(2):553-7. Links

Minocycline is not effective in systemic sclerosis: results of an open-label

multicenter trial.

Mayes MD,

O'Donnell D,

Rothfield NF,

Csuka ME.

University of Texas-Houston Health Science Center, Houston, TX 77030, USA.

Maureen.D.Mayes@...

OBJECTIVE: To determine if minocycline therapy improved skin thickness in

early, diffuse systemic sclerosis (SSc) by > or =30%, a level of improvement

unlikely to occur in the natural history of the disease as determined by

recent controlled trials. METHODS: Subjects with diffuse SSc of < or =5

years' duration were treated with oral minocycline for 1 year. The primary

outcome measure was the modified Rodnan skin thickness score (MRSS).

RESULTS: Of 36 subjects initially enrolled, 31 returned for at least 1

followup visit and were included in the analysis (modified intent-to-treat

analysis). The group consisted of 23 women and 8 men, with a mean age of

51.7 years (range 26-82 years) and a mean disease duration of 23.5 months

(range 6-60 months). The mean MRSS at entry was 22.7 (range 12-43), and at

the final visit it was 18.6 (range 2-48). There was no statistically

significant difference in the change in skin scores between the

minocycline-treated subjects and subjects previously reported in the

D-penicillamine (D-Pen) trial. In addition, when adjusted for disease

duration, a comparison of MRSS in the minocycline trial subjects (including

all subjects active at each time point) and the previously reported D-Pen

trial subjects showed no difference and no treatment effect. Fourteen

subjects did not complete all 12 months of treatment; 10 of them withdrew

due to disease progression. Disease duration was significantly shorter for

the noncompleters than for the completers (P < 0.03).

CONCLUSION: The degree of change in the MRSS was similar to that expected in

the natural course of this disease. Based on these data, minocycline is not

an effective therapy for SSc.

PMID: 14872498

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed & cmd=Retrieve & dopt=Abstra\

ctPlus & list_uids=14872498

************************************************

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] & , response re alternate therapy

>I appreciate our discussion.

>

> As to whether my nephew and his friend's mother really had R.A., my

> nephew went to at least one family Dr. and a Rheumatologist, I don't

> know about the friend's mother. If my nephew was diagnosed by two Drs.

> with R.A., but they were both wrong, then that would apply to everyone

> posting on this list too, wouldn't it? Even if a Dr/Rheumatologist

> diagnosed them with R.A., how do we know they really have R.A.? We need

> to apply the same standard to everyone.

>

> If I remember correctly as soon as the MIRA study results were

> published, the AMA came out with a warning that antibiotics were being

> used too frequently which seemed to cast doubt on the wisdom of using

> antibiotics for Rheumatoid conditions. Also I don't think there was any

> follow up after the 48 weeks to know if there was lasting help from

> antibiotic treatment or not.

>

> I will ask Dr. Sinnott if he has tried or intends to publish his

> clinical information.

>> Why doesn't Dr. Sinnott publish the findings from his practice in a

>> rheumatology journal? A few well chosen case studies complete with lab

>> values and x-rays and/or MRIs before and after treatment would go a long

>> way. If he could demonstrate that aggressive, erosive, deforming disease

>> could be halted by his methods, that would be impressive. That sort of

>> evidence would be far more convincing than testimonials.

> I don't think he or other antibiotic therapy practitioners have ever

> claimed they can restore previous damage. However, I've read

> testimonials from Scleroderma patients whose skin has returned to normal

> or almost normal after antibiotic therapy. Practitioners believe they

> can put the R. diseases in remission in about 80% of the cases with low

> dose, LONG term use of antibiotics. Some patients are on low dose

> antibiotic therapy usually including IVs at times, for more than 48

> weeks, more than a year, otherwise the disease flares again because the

> cause has not been thoroughly eliminated.

>

> I'll ask a lot of questions and report anything I think would be helpful

> to this group in hopes that some are interested.

>

> thanks for your responses and information.

>

> Bev Hannon, Iowa

[Guest guest]

I want to jump into this conversation quickly if I might.

First of all, I need to say that I see 's points clearly as well as

Bev's. My only warning would be, " don't discount testimonials so quickly. "

It is true that testimonials are different than clinical trials, but even if

something is shown to have a high success rate after clinical trials, it

still might not work for you.

A couple of examples. My 13 yod is on Humira injections once per week and

MTX injections once per week to treat her RA. After a few months of this

treatment she experienced excruciating eye pain. At the suggestion of her

rheumy I took her to the eye doctor who examined her twice. The first time,

she saw no evidence of damage that would cause this eye pain so she sent us

home and told us to come back in a week just incase the eye pain was being

caused by something she couldn't see yet. The pain continued and was so

severe there were days she would just stay in a darkened room with sun

glasses on. The following week, we brought her back, but there was still

nothing visible to the doctor.

I asked my rheumy if the drugs could be causing this problem and he said no.

I asked him if the combination of these injections on the same day was too

toxic for her and might be causing this problem and he said there was no

clinical studies that this would be the case, nor had he ever seen this in

30 years of practice. So, I took it upon myself to split up the injections

by about 3 days. Within two weeks the pain had subsided.

Second example: For several months my daughter had been taking 40 mg of

Prednisone in addition to the injectables. We started weaning her at the

beginning of June, going very slowly, but every time we lowered the dose she

could barely walk. For several months we had also been giving her a dietary

supplement called Reliv because I wanted to make sure she had high doses of

calcium while on Prednisone, and I wanted to give her liver every possible

chance of staying healthy while on MTX. During the awful flares we decided

to double her Reliv consumption. At that time she was taking 35 mg of

Prednisone. From that point on we've been able to continue weaning her by

lowering her dose of Prednisone 2.5 mg every 2 weeks, with no negative side

effects. She's currently down to 7.5 mg and will hopefully be off it

completely before Thanksgiving (something for which we will be truly

thankful). We started her on Reliv completely based on testimonials of

other people because it isn't a drug and therefore has not been subject to

clinical trial. It has become a critically important part of her therapy

even though we also continue to have her on Humira and Mtx.

Sometimes testimonials are important in giving us information that could be

very helpful to us.

That said, I have a prescription for Minocin that we haven't decided yet on

using. Our rheumy told us that though he believes it does help with the

symptoms of RA, 9 out of 10 patients he has put on it discontinue use

because of stomach problems and the 10th person stops using it by around 6

months. I will be curious to follow your progress Bev and I wish you well.

Right now, is doing well on the combination of MTX, Humira, folic acid

and Reliv, plus the Prednisone which we are continuing to wean her from.

There are side affects to Minocin as well as these other drugs so we haven't

decided if we want to go that route. Reliv is helping avoid the side

affects of Humira and MTX, so we feel very safe with those drugs at this

point.

Anyway, these are just the thoughts that keep coming to mind as I read this

particular discussion.

Lori