For Sierra - Re: Minocycline

[Guest guest]

n,

The use of minocycline to treat RA is not a secret which rheumatologists

keep from their patients. As you probably saw in one of my recent posts,

minocycline is listed by the American College of Rheumatology as a DMARD

http://www.rheumatology.org/public/factsheets/minocycline.asp). It also

appears in the DMARD section in various publications of the Arthritis

Foundation. The recommended dosage is 100 mg twice a day. There are many

articles about minocycline (and other antibiotics) as a treatment for RA in

the various rheumatology journals (e.g., The Journal of Rheumatology, ls

of the Rheumatic Diseases, Arthritis & Rheumatism, Journal of Clinical

Rheumatology, and Rheumatology).

Rheumatologists offer the agents they believe are the most appropriate and

will likely be most effective for the patient's particular situation. There

is no evidence to suggest that minocycline should be used alone as a first

choice for aggressive disease. Under the right circumstances, it is a good

choice for mild to moderate RA or in combination with another DMARD for more

serious disease.

Not all other RA DMARDs are new or expensive. Methotrexate is one of the

oldest, most effective, and cheapest of the DMARDs. The toxicity profile of

MTX is well-established and the benefit/risk is very favorable. MTX has been

used for decades and is the gold standard. Worldwide, millions of people use

it for RA and other rheumatic diseases; most experience no serious adverse

events.

Hydroxychloroquine and sulfasalazine are also very good, safe, inexpensive,

and frequently-prescribed DMARDs.

As a specialty, rheumatology is relatively new. I'm not sure it's been

around long enough (since 1972) to be able to justify referring to

rheumatologists and their methods as " archaic. " And today in 2007,

rheumatologists are using revolutionary strategies and cutting edge

treatments to help patients with rheumatic diseases - six biologic

therapies, stem cell transplantation, and induction therapy, for example.

Biologics are indeed expensive, but they are changing many lives for the

better. Patients today are more likely than those from past eras to avoid

damage, live longer, and achieve drug-maintained remission.

Since there is no cure and because the nature of the disease is

heterogeneous, trial and error is an unfortunate component of treating RA.

The evidence is mounting that early and aggressive treatment leads to much

better outcomes. For many patients, rheumatologists will often suggest a

DMARD (or a combination) that has been shown to have greater efficacy than

minocycline, because the consequences of choosing an ineffective therapy can

be irreversible damage and inflammation and a disease that may spiral out of

control.

Many researchers and rheumatologists believe that if one misses a

theoretical " window of opportunity " (which is thought to occur early in the

disease course) to treat RA optimally, the chances for a good outcome are

reduced. From the moment the disease is apparent (and perhaps even before

that - i.e., when the labs alone are abnormal), the clock is ticking. " Wait

and see " was the previous, and failed, paradigm.

Patients must decide for themselves which way they want to go, but

rheumatologists have a duty to recommend what they believe is best based

both on the available research and their own clinical experience.

Not an MD

[ ] For Sierra - Re: Minocycline

>>>>I have been on Minocycline for 4 months and it is the best medicine

> I've been on for my RA. It is working beautifully for me and I'm ever

> so grateful. I have mild-moderate RA--was diagnosed several years ago

> and have been on the following DMARDS: Plaquineil, Methotrexate (2

> years), Arava (3 weeks), & Sulfasalazine (3 weeks).<<<

>

> Hi Sierra,

>

> Many thanks for your reply and it's great to hear the minocycline is

> working so well for you! Are you taking it as a substitute for the

> previous meds you mentioned or in combo with something else?

>

> I'm getting similarly good results with the tetracycline (same family of

> abx). I have been on it for several months and improvement has been slow,

> but definitely worth waiting it out, in retrospect, and putting up with

> the pain to get these results.

>

> I wonder why this treatment seem to be such a well kept secret from RA

> patients? If it works - even if for only a % of people - with so few

> side-effects, then why isn't it being used more? I don't understand the

> resistance by docs to at least try it on patients, even if results aren't

> immediate. What exactly do docs mean when they say they have had little

> success with it? Could they mean patients give up without giving it time

> to kick in or that other drugs are just more measurable in their immediate

> effects? Also, the dosing seems variable...better results seem to come

> with lower doses given every few days than continuous high dosing. Could

> there just be a lack of education here? For all their training and the

> respect due that we give them, docs can't know everything, afterall, and

> belief systems can be a very hard thing to change.

>

> Sadly, my doctor says, the field of rheumatology is sketchy and archaic at

> best with a lot of patients doing the " guinea pig " run around with some

> pretty toxic drugs. Would pharmaceutical companies really be altruistic

> enough to forego profits for researching cheaper, more effective

> alternatives or a cure? It's just not in the pharmaceuticals' best

> interests to do this and far more profitable to keep people chugging on

> the big money drug train.

>

> Hate to sound so critical, but I really think we all need to be our own

> best advocates and look at all alternatives and even suspend our own

> disbelief at times, no matter how ridiculous some alternatives may sound.

> For instance, there is a lot of " quack-busting " going on that says liver

> flushing is all hoo-haw and hogwash. I was pretty skeptical, myself, until

> after a series of pretty bad biliary colic attacks a few years ago, I got

> up the courage to try a flush from Curezone.com and it worked like a

> dream. My attacks stopped immediately and it was a much safer, healthier

> alternative to having my gall bladder removed. Truly, " the proof of the

> pudding is in the eating " with anything... Incidentally, for anyone who

> may be interested, liver flushing has been helpful for many with

> allergies, asthma, gall stones, drug toxicity, pms, arthritis....you name

> it. Check out Curezone.com for a full list of complaints that liver

> flushing helps.

>

> Thanks, Sierra, for your confirmation...I was beginning to wonder if my

> own improvement was imagined or solely due to the plaquenil.

>

> Peace, n

[Guest guest]

n and Sierra,

How long had you had your diagnosis of RA when you started taking anitbiotics?

What were your symptoms? And are you seropositive or seronegative RA? I figure

the more information I have to share with my rheumatologist next week, the

better.

Meg in Pennsylvania

---------------------------------

Don't be flakey. Get for Mobile and

always stay connected to friends.

[Guest guest]

I was diagnosed about three years ago and started antibiotics only 4

months ago. I am seropositive (44, I think--low) and had a positive

CCP test. First noticable symptom was a dull ache in one hip. Then a

sore knee. Two swollen index fingers. Tendonitis in an ankle. Lots of

dropping things, lots of fatigue. Extremely sore shoulders--for a

couple of days once I had trouble lifting my arms up to do my hair.

Occasionally I had fiery joint pain all over.

Sierra

>

> n and Sierra,

>

> How long had you had your diagnosis of RA when you started taking

anitbiotics? What were your symptoms? And are you seropositive or

seronegative RA? I figure the more information I have to share with

my rheumatologist next week, the better.

>

> Meg in Pennsylvania

>

>

> ---------------------------------

> Don't be flakey. Get for Mobile and

> always stay connected to friends.

>

>

[Guest guest]

I noticed that the current issue of Arthritis Today includes it in

their DMARDS list. Obviously, it is helping people.

Sierra

> Hi Sierra,

>

> Thanks for your email. I think you must be on the money with the

above. FDA

> approval carries all the weight and the FDA is heavily influenced

by

> pharmaceutical pressure, which is the unfortunate thing about all

this here in the US.

> Doctors take the hypocratic oath to " do no harm " and yet it seems

their hands

> are tied by good ol' " FDA approval " . Thank God for those docs who

are willing

> to step out of the box and really attempt to do all they can in

their patient's

> best interests and in minimally invasive ways where appropriate.

>

> Your story is so heartening - thanks for sharing!

>

> Peace, n

>

>

>