Re: Re:New : Which med. to choose?

August 24, 1999

Why would you give metho a " miss " vs. Enbrel or Arava? The latter are at

this point, unproven drugs, with some potentially serious side effects (not

that metho or antibiotics are harmless). Lodine is also on a par with

Relafen for safety, if there is such a thing with Nsaids. It should be

noted that Enbrel, Arava, and RA-SPES are outrageously priced. Bromelain,

circumin, ginger might be some good herbal anti-inflammatories, if they work

for you. I've taken them for so time, but see minimal effects.

Mark

> From: cadlard@...

> He is also correct that you need an anti-inflammatory to keep the

inflammation

> down while the antibiotic kicks in.

> Dr. Mercola said recently that Relafen is one of the safest. I'd give the

> methotrexate a miss. Some of the group are using Enbrel and Arava so might

be

> able to help you with their experience.

>

> Your other choice would be to use one of the herbal anti-inflammatories.

Some of

> the group are using RA-SPES with good results and other choices are listed

in

> Dr. 's clinic notes at www.rheumatic.org/martin.htm.

>

> Keep us posted,

> Chris.

>

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

August 26, 1999

> Why would you give metho a " miss " vs. Enbrel or Arava? The latter are at

> this point, unproven drugs, with some potentially serious side effects (not

> that metho or antibiotics are harmless). Lodine is also on a par with

> Relafen for safety, if there is such a thing with Nsaids. It should be

> noted that Enbrel, Arava, and RA-SPES are outrageously priced. Bromelain,

> circumin, ginger might be some good herbal anti-inflammatories, if they work

> for you. I've taken them for so time, but see minimal effects.

Mark,

I agree that Enbrel, Arava, Celebrex, et al, are outrageously priced at

$8,000-$18,000 USD per year (in my locale); But I hardly think you can

lump any herbal, RAS, drug or anything else that comes in at <

$100/month into the same cost category. That's a pretty broad brush.

Personally, I never had any luck with bromelain nor curcumin, and ginger

puts me into a flare. But others have written with positive results on

these, so there is that individual tailoring issue again.

--

Geoff Crenshaw -----------------------

Captain Cook's Cruise Center ** Usual Disclaimers **

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

Religion: Man's attempt to discover God

Christianity: God's offer to save humankind

August 26, 1999

I have been told by more than one Dr that of the nsaid's Relafen and Lodine

are less likely to cause GI problems, but at the price of increased risk of

liver and kidney toxicity. One apparently thoughtful discussion with an RD

indicated that he weighs the relative risk to the different systems involved

in the particular individual--older folks might be MORE at risk with Relafen

and Lodine, because their liver and kidney function might not be as robust.

I would guess this might be true with different disease entities, too--if

your particular disease caused stress or injury to these organs, I would

think it would an important factor.

I have no liver or kidney problems, but loads of GI sensitivity, so the Rd

tried me on Relafen and Lodine. They didn't cause as much GI trouble as the

others, but still enough that I decided they caused more misery than they

alleviated, and so I discontinued them.

Celebrex and Vioxx don't cause me any GI distress, which is a miracle as far

as I am concerned, but the $100 bottle of either of these doesn't give me as

much joint pain and stiffness relief as a $2 bottle of Walgreens brand

ibuprofen. Also, they are new, and their hidden risks are yet to be

discovered. For me personally, ibuprofen caused about the same GI upset as

Lodine and Relafen.I know others can take the drugs with less GI problems. I

will sometimes take the prescription dosage of ibuprofen for a few days,

until the GI problems kick in.

Another class of nsaids is the non-acetylated salicylates. (Aspirin is an

acetylated salicylate) They are easier on the stomach and gut,but don't

provide as much pain relief, especially if inflammation is the cause of the

pain.

The stronger DMARDS, and prednisone, etc. are supposed to do more to control

actual joint destruction, as opposed to to nsaid's, are they not? I would

think the risk of a carefully monitored course of one of the stronger drugs,

to keep the joint structures intact until the Minocin kicks in, might be

worth it. What about Asulfadine? I understand it is one of the safer

DMARD's.

Jean

----------

>From: cadlard@...

>rheumaticonelist

>Subject: rheumatic Re:New : Which med. to choose?

>Date: Wed, Aug 25, 1999, 9:42 PM

>

> From: cadlard@...

>

> I guess my personal viewpoint is showing here and others may disagree with me.

>

> When my daughter was in excruciating pain (she has systemic scleroderma,

> rheumatoid arthritis, Raynauds and fibromyalgia), before we found out about

the

> antibiotics, her rheumatologist advised her to take methotrexate. On the basis

> of her multi-disciplined lab experience, she flatly refused.

>

> I'm against this whole philosophy of poison and burn where treating the human

> body is concerned. I think the body has an integrity of its own and drugs like

> methotrexate have little place in any kind of disease. At best it might help

> some people temporarily, but it does nothing to alter the course of the

disease

> and I've seen so much damage caused by this drug. No flames please - I respect

> everyone's right to their own opinion and am just stating mine.

>

> The NSAIDS aren't too great either from a point of view of damage versus

> benefit. But some kind of anti-inflammatory is needed to keep pain under

> control. What to choose? Prednisone sometimes is the only thing that helps but

> it comes at a high personal price too.

>

> It's probably a case of trying whatever's available and see what helps,

starting

> with the herbals or RASPES and then the NSAIDS from the least damaging drug

> first. Dr. Mercola sent a table of NSAIDS, from the least/most harmful point

of

> view. Does anyone still have it? I know Relafen was considered the safest with

> Enbrel and Arava further down the list.

>

> Chris.

>

> Why would you give metho a " miss " vs. Enbrel or Arava? The latter are at

> this point, unproven drugs, with some potentially serious side effects (not

> that metho or antibiotics are harmless). Lodine is also on a par with

> Relafen for safety, if there is such a thing with Nsaids.

>

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

August 26, 1999

Re: rheumatic Re:New : Which med. to choose?

>

>The stronger DMARDS, and prednisone, etc. are supposed to do more to

control

>actual joint destruction, as opposed to to nsaid's, are they not? I would

>think the risk of a carefully monitored course of one of the stronger

drugs,

>to keep the joint structures intact until the Minocin kicks in, might be

>worth it. What about Asulfadine? I understand it is one of the safer

>DMARD's.

>

>Jean

>----------

I can only speak for my case, but I feel I need to comment here.

I was diagnosed with RA in 1977 (I think I had symptoms for another 10 years

before that). I was on gold IM from 1979 to Dec. 1989, and methotrexate

from 1990 to 1997. During all those years I was never really in a

remission: my RA would go from " simmering " to " boiling " , but would never

disappear. I presume joint damage was occuring during much of that time.

However, after I started methotrexate the permanent, disabling joint

destruction seemed to speed up: sometime in 1992, my finger erosion became

so severe that my fingers actually started to shorten; in 1993, 9 months

after my first sign of hip involvement (before that, my doctor had often

said, " At least you have good hips! " ), I was told I needed a hip replacement

which I had in 1994; both knees were very bad at the time of that surgery,

but I persisted as long as I could with them and had one knee replacement in

1997 and the other in 1998; I could go on with the major damage in all my

other joints, but I think you understand what I am saying.

I do not think it is a co-incidence that the damage became so severe and

disabling after starting methotrexate. Not only that, but I felt sick,

totally exhausted, and was in MORE pain for three days after every weekly

dose of methotrexate for 7 years. After seven years, my doctor said

methotrexate was no longer working for me (I have to wonder if it ever

worked " for " me or just " on " me. That statement was a blessing in disguise

because he agreed to prescribe Minocin.

August 26, 1999

No flames, but some thoughts as I read your post.

rheumatic Re:New : Which med. to choose?

On the basis

> of her multi-disciplined lab experience, she flatly refused.

What did this lab experience show her? Was she looking at results with

dosages of 10-15mg or in Grams (as in treatments for cancer patients)

>

> I'm against this whole philosophy of poison and burn where treating the

human

> body is concerned. I think the body has an integrity of its own and drugs

like

> methotrexate have little place in any kind of disease.

I bet a lot of cancer patients who are alive today would disagree with you,

despite hating to take these drugs themselves. If it hadn't been for drugs

like these, my mother-in-law would never have lived long enough to see my

wife and I get married. Though I shudder and I'm sure cancer patients

shudder at these drugs (and their dosages are huge compared to RA patients),

I don't find continuing erosions acceptable.

At best it might help

> some people temporarily, but it does nothing to alter the course of the

disease

> and I've seen so much damage caused by this drug.

I think it has been shown to slow the disease process down. I think that

was the whole idea of hitting RA early in it's course. I know it won't

eradicate the disease but it seems to be more effective in preventing the

damage than does minocycline. I still hold out hope for minocycline and

will need to pursue further testing perhaps as Dr. Chiu suggests in order to

find the particular drug that will work with my particular virus/bacteria

(although I am taking minocin and zithromax).

>

> It's probably a case of trying whatever's available and see what helps,

starting

> with the herbals or RASPES and then the NSAIDS from the least damaging

drug

> first.

That's what I've tried for a year now and now I am beginning to have some

second thoughts. I wonder if metho would have kept me from having these

erosions? Don't get me wrong - I know there are risks with metho, but I

don't think it affects all people equally the same, just as antibiotics

don't either. I would be most interested in specific details of injury to

patients who are taking between 10-25mg per day and who have had their blood

monitored monthly. I would like to present that material to my doctors at

the NIH who seem to feel that this drug, if monitored carefully, can be

safer than even Nsaids. Without those details, I feel I can not argue

credibly against taking methotrexate.

Mark

August 26, 1999

From an editorial in the Journal of Rheumatology 1992;19:12, pgs

1831-1834 titled Changing Perspectives in the Treatment of Rheumatoid

Arthritis

Irving Kushner, M.D. and Neal V. Dawson, M.D. write:

" As we and a number of others have pointed out, there is very little

persuasive evidence that these drugs (MTX, gold, etc.) are substantially

improving the outcome measures of joint destruction, functional

capacity, ability to earn an adequate income or mortality. "

Pinals: " . . . none of these agents has an outstanding or lasting effect

on the disease. "

Klippel: " . . . medical management of RA has utterly failed to modify

thelong term outcome. "

Wolfe: " The long term prognosis of RA is bad. "

: " The drugs that we use provide good symptomatic relief, but do

not retard joint destruction. "

: " . . we can as yet do little to prevent the progression of

erosion. "

Fries: (Stanford) " . . . even during periods of drug response, there is

.. . . . progression of bony erosion. "

& Luthra: " There is little evidence that second line agents

yield benefit beyond three years. "

Authors - We use to call them remittive agents but don't use this term

anymore now that we know they do not cause remissions very often or for

very long.

In another paper in the J of Rheu 1990, Wilske and Healey write, " Our

greatest error, however, will be if we spend years writing " doing well "

in the notes of patients who become progressively crippled before our

eyes. "

There's lots more on this subject in my files - but this will do for

now.

Ethel

Ken and wrote:

>

> From: " Ken and " <kglg@...>

>

> Re: rheumatic Re:New : Which med. to choose?

>

> >

> >The stronger DMARDS, and prednisone, etc. are supposed to do more to

> control

> >actual joint destruction, as opposed to to nsaid's, are they not? I would

> >think the risk of a carefully monitored course of one of the stronger

> drugs,

> >to keep the joint structures intact until the Minocin kicks in, might be

> >worth it. What about Asulfadine? I understand it is one of the safer

> >DMARD's.

> >

> >Jean

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

>

> I can only speak for my case, but I feel I need to comment here.

>

> I was diagnosed with RA in 1977 (I think I had symptoms for another 10 years

> before that). I was on gold IM from 1979 to Dec. 1989, and methotrexate

> from 1990 to 1997. During all those years I was never really in a

> remission: my RA would go from " simmering " to " boiling " , but would never

> disappear. I presume joint damage was occuring during much of that time.

> However, after I started methotrexate the permanent, disabling joint

> destruction seemed to speed up: sometime in 1992, my finger erosion became

> so severe that my fingers actually started to shorten; in 1993, 9 months

> after my first sign of hip involvement (before that, my doctor had often

> said, " At least you have good hips! " ), I was told I needed a hip replacement

> which I had in 1994; both knees were very bad at the time of that surgery,

> but I persisted as long as I could with them and had one knee replacement in

> 1997 and the other in 1998; I could go on with the major damage in all my

> other joints, but I think you understand what I am saying.

>

> I do not think it is a co-incidence that the damage became so severe and

> disabling after starting methotrexate. Not only that, but I felt sick,

> totally exhausted, and was in MORE pain for three days after every weekly

> dose of methotrexate for 7 years. After seven years, my doctor said

> methotrexate was no longer working for me (I have to wonder if it ever

> worked " for " me or just " on " me. That statement was a blessing in disguise

> because he agreed to prescribe Minocin.

>

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

August 27, 1999

In article <37C593DA.6A5EE9BC@...>, Snooks <snooks@...>

writes

>In another paper in the J of Rheu 1990, Wilske and Healey write, " Our

>greatest error, however, will be if we spend years writing " doing well "

>in the notes of patients who become progressively crippled before our

>eyes. "

That is why it is very important to perform functional assessments at

each clinic visit so that you can objectively track progress ( or lack

of the same ).

-------

Regards, Dr Graham Chiu

Prospective Internet Observational Study in Arthritis

Home Page http://www.compkarori.com/arthritis/

Contribute at http://www.compkarori.com/arthritis/contrib.htm

Data Entry at http://www.compkarori.com/cgi-local/piosa.cgi

August 27, 1999

In article <001e01beeff5$182a3d80$LocalHost@oemcomputer>, HOLMES, MARK

T. <MHOLMES@...> writes

>That's what I've tried for a year now and now I am beginning to have some

>second thoughts. I wonder if metho would have kept me from having these

>erosions? Don't get me wrong - I know there are risks with metho, but I

You had the erosions before you started the AP. MTX has only been shown

to *slow* the development, not stop them developing.

-------

Regards, Dr Graham Chiu

Prospective Internet Observational Study in Arthritis

Home Page http://www.compkarori.com/arthritis/

Contribute at http://www.compkarori.com/arthritis/contrib.htm

Data Entry at http://www.compkarori.com/cgi-local/piosa.cgi

August 27, 1999

I had my first symptoms of this disease only 2 months before starting the

AP. Are you suggesting that erosion could happen in 2 months? Or that it

could start to develop before one even had the first symptoms? (My symptoms

came on literally overnight). I do understand that metho has been known

only to slow, not stop. I don't know of anything that will stop it, other

than perhaps an antibiotic if you can figure out the right one and eliminate

whatever other problems you have. I am still somewhat intrigued by all the

sinus/allergy problems that so many seem to have. I find it interesting

that all the doctors I mention this to just shrug their shoulders. Sure

seems to me like there is some connection here.

Mark

Re: rheumatic Re:New : Which med. to choose?

> From: Dr Graham Chiu <anon_emouse@...>

>

> In article <001e01beeff5$182a3d80$LocalHost@oemcomputer>, HOLMES, MARK

> T. <MHOLMES@...> writes

> >That's what I've tried for a year now and now I am beginning to have some

> >second thoughts. I wonder if metho would have kept me from having these

> >erosions? Don't get me wrong - I know there are risks with metho, but I

>

> You had the erosions before you started the AP. MTX has only been shown

> to *slow* the development, not stop them developing.

>

> -------

> Regards, Dr Graham Chiu

> Prospective Internet Observational Study in Arthritis

> Home Page http://www.compkarori.com/arthritis/

> Contribute at http://www.compkarori.com/arthritis/contrib.htm

> Data Entry at http://www.compkarori.com/cgi-local/piosa.cgi

>

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

August 27, 1999

In article <00b401bef027$219ed240$LocalHost@oemcomputer>, HOLMES, MARK

T. <MHOLMES@...> writes

>I had my first symptoms of this disease only 2 months before starting the

>AP. Are you suggesting that erosion could happen in 2 months? Or that it

>could start to develop before one even had the first symptoms? (My symptoms

No one knows the answers to these questions. What we do know from MRI

studies in early arthritis is that many patients do show erosions at

presentation which are not seen on x-ray. This has lead us to question

how erosions develop.

-------

Regards, Dr Graham Chiu

Prospective Internet Observational Study in Arthritis

Home Page http://www.compkarori.com/arthritis/

Contribute at http://www.compkarori.com/arthritis/contrib.htm

Data Entry at http://www.compkarori.com/cgi-local/piosa.cgi

August 27, 1999

I believe there is a connection and the finding of mycoplasmas in most

asthmatics and now treating many with antibiotics leads credence to the

antibiotic theory with RA. Maybe our immune systems have just gone

permanently overactive in the fighting of these things. As to allergies I

dont know. I do know my asthma has been better this summer than in years and

years, since I am on the antibiotics. I certainly think its possible that

other organisms can also be involved in the arthritis such as the ones Dr

Prosh treats with the antimicrobials. Or maybe we have differing

combinations of these organisms?

August 27, 1999

Mark " ya gotta do what ya gotta do " You know everyones opinion on the

dangers of MTX so it is up to you if you want to take a chance on it. It is

definately shown it doesnt stop progression of deterioration but maybe would

give you a few years of relief. Remember also when you are middle aged " a

few years " will fly by like minutes. At least you should know of all the

danger signs and be forewarned so that you can be aware if they start to

occur. Have you seriously considered trying to get the IV's?

I guess I have had this so long that I dont expect I could ever be normal

again, too much bone damage. Mine snuck up on me slowly and I just accepted

it till the breaking point hit. It must be much harder for you who went from

normal to crippled up in a few days.

August 27, 1999

Hi Mark! Geoff Crenshaw here.

Just a couple of cents...

" HOLMES, MARK T. " wrote:

>

> > I'm against this whole philosophy of poison and burn where treating the

human

> > body is concerned. I think the body has an integrity of its own and drugs

like

> > methotrexate have little place in any kind of disease.

>

> I bet a lot of cancer patients who are alive today would disagree with you,

Early cancer treatment was predicated upon the following theory:

Administer poison adequate to kill the cancer, with hope

that the patient is able to outlive the cancer. IOW,

poison them both and whoever lives through it wins.

It was a real coin toss too. Early treatment went about 98% against the

patient.

Since then cancer treatment has changed radically. In the last 5-10

years dosage regimens have been altered, chemicals reduced, detection

increased and survivability improved. They are using less drug, more

directed radiation poisoning, etc., than in the past. So we have changed

from a 20/80 life/death ratio to now something more close to 80/20.

> I think it has been shown to slow the disease process down. I think that

Well now, that is the entire crux of the matter isn't it? Who lives

longest, the disease or the patient? If you get the disease at 78 yrs

of age, use whatever. There are very, very long odds against the disease

crippling you before you expire.

But if you get it at 20 or 30 or 40, or worse, 3, now you're in very bad

trouble. Even moving slowly, this disease will disolve your body while

you are still very much in residence. And thus the problem... slowing

simply is not an appropriate response to someone in that state.

> was the whole idea of hitting RA early in it's course. I know it won't

> eradicate the disease but it seems to be more effective in preventing the

> damage than does minocycline. I still hold out hope for minocycline and

I think you're right there... and I believe that's why McPherson-Brown,

et al, say to use some sort of antiinflamm in conjunction with the

tet's; So the tet's can get to the joints AND the damage is limited at

the same time.

Then the big question becomes, what antiinflammatory, doesn't it?

> will need to pursue further testing perhaps as Dr. Chiu suggests in order to

> find the particular drug that will work with my particular virus/bacteria

> (although I am taking minocin and zithromax).

Pardon my ignorance, but are there (probably) types of myco's that are

NOT covered by these drugs? In that case, you can arrange myco testing

personally with Dr. Millie Coker-Vann, a research partner of Dr. Brown

who's lab is in Gaithersburg, MD and who charges very reasonable rates.

All you will need is someone to --- SUCK YOUR BLOOD --- (Hahaha little

vampire joke there - couldn't resist.)

Dr. Coker-Vann's lab is listed at http://www.rheumatic.org

> > It's probably a case of trying whatever's available and see what helps,

starting

> > with the herbals or RASPES and then the NSAIDS from the least damaging drug

> > first.

>

> That's what I've tried for a year now and now I am beginning to have some

What have you tried? And what are you on now?

> second thoughts. I wonder if metho would have kept me from having these

> erosions? Don't get me wrong - I know there are risks with metho, but I

> don't think it affects all people equally the same, just as antibiotics

> don't either. I would be most interested in specific details of injury to

> patients who are taking between 10-25mg per day and who have had their blood

> monitored monthly. I would like to present that material to my doctors at

> the NIH who seem to feel that this drug, if monitored carefully, can be

> safer than even Nsaids. Without those details, I feel I can not argue

> credibly against taking methotrexate.

>

> Mark

I'm sorry, this is something I don't understand, " ...argue credibly

against taking... " I hear a lot of people take this approach, as if

they have given some control over their lives to their physicians.

A physician is nothing more than an expert at some particular endeavor.

He or she is human, despite any offering to the contrary, and what you

decide to do with and to your body is your decision, no one elses.

(Ignoring obvious situations of violence, imprisonment, etc.)

Just say no. If they won't work with you, hire someone else.

What is the advantage of giving, empowering, actually paying people to

allow you to empower them over you? This is a foreign concept to me.

Subordination I fully understand, but the doctor you hire is not someone

you are subordinate to, quite the opposite actually. You pay them, they

are subordinate to you. And they are quite adept at showing you just

where they will and will not subordinate themselves to your wishes.

Def - EXPERT (ex-spurt) ex: " a has been " ; spurt: " a drip under

pressure " . Try remembering that definition next time you encounter an

expert of whatever strip or nomenclature pre or postceeding his/her

name.

--

Geoff Crenshaw -----------------------

Captain Cook's Cruise Center ** Usual Disclaimers **

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

Religion: Man's attempt to discover God

Christianity: God's offer to save humankind

August 27, 1999

In that case, you can arrange myco testing

personally with Dr. Millie Coker-Vann, a research partner of Dr. Brown

who's lab is in Gaithersburg, MD and who charges very reasonable rates.

All you will need is someone to --- SUCK YOUR BLOOD --- (Hahaha little

vampire joke there - couldn't resist.)

Dr. Coker-Vann's lab is listed at http://www.rheumatic.org

It's probably a case of trying whatever's available and see what helps,

starting

with the herbals or RASPES and then the NSAIDS from the least damaging drug

first.