Re: sorry Jeff ...................

February 22, 2003

on 2/22/03 11:32 AM, socjog, at socjog@..., wrote:

> Actually, it's lupus-like symptoms that can evolve into the actual disease

> or some form of it if not resolved.

> ***************************

> Hi Jeff,

> Nope never happened never proven . There was only one patient to date that did

> develop lupus but again it was not established prior to minocycline treatment

> if in fact she had dormant lupus to begin with . Minocycline therapy to the

> best of my knowledge has never been proven to be caused by minocycline therapy

> . Warm regards,

Socjog, you're just wrong here, the fact that minocycline can cause

drug-induced lupus has been known for a long time. You are talking about one

study which has been published recently, but if you check the literature,

you'll find drug-induced lupus has been associated, rarely, with minocycline

and a number of other drugs for years now. The one study you are aware of

happened to be among teenage acne patients, and easy group to isolate and

study, because that is the group who has used minocycline the most

previously.

To quote Arthritis and Allied Conditions, a standard rheumatology text, " A

variety of drugs have been implicated as capable of producing the whole or

partial clinical or serologic features of SLE. " Dr. Brown knew this, and

other doctors who are skilled in using AP know this, and take adequate

precautions.

Drug induced lupus is distinguished form idiopathic lupus by some

differences which can be found in serum autoantibodies, and by the fact that

stopping the offending drug, as with Jeff and minocycline, stops the lupus

symptoms.

Read the material on the rheumatic.org site, you'll find the information

there. Minocycline is also associated with autoimmune hepatitis and in rare

instances a dangerous brain swelling. It is not wise to be taking

minocycline and also deny the possibility of any adverse effects. These are

quite dangerous if you are the rare individual to whom they happen.

Like any drug, one should be aware of the potential down sides of any of the

antibiotics we use.

With this knowledge, I will continue to take my minocycline and be

incredibly pleased it helps my arthritis. If I wake up one day next week

with lupus or hepatis, minocycline will be the first thing I suspect, and

I'll stop it immediately to see if the symptoms subside.

--

Jean

jpro2@...

February 22, 2003

Hi ,

Sorry but I strongly disagree with you here it does not cause drug induced

lupus but rather a lupus like syndrome . You basically quoted from the test

exactly what I am saying . Minocycline has NEVER been proven to cause lupus

Period . Drug induced lupus is not and will not ever be the same thing as

having the disease lupus . It was an isolated study from several years ago

NOT new and the reason it is isolated is because they were never able to

reproduce those findings . Below you site

SNIP

A

> variety of drugs have been implicated as capable of producing the whole or

> partial clinical or serologic features of SLE. "

END SNIP

Features of is NOT the disease . Sorry but I disagree with you . It is an

easily misinterpreted study which the medical community those that choose

not to recognize this as a viable first option have twisted these findings

to scare people from using AP . Other AP drs are aware of this RARE

possibility and can easily distinguish this syndrome from lupus disease .

Which even you posted below and I agree

SNIP

Drug induced lupus is distinguished form idiopathic lupus by some

> differences which can be found in serum autoantibodies, and by the fact

that

> stopping the offending drug, as with Jeff and minocycline, stops the lupus

> symptoms.

END SNIP

Thanks for pointing out that this is RARE . To say minocycline causes lupus

is ridculous and not evident . Warm regards,

socjog

Re: rheumatic sorry Jeff ...................

> on 2/22/03 11:32 AM, socjog, at socjog@..., wrote:

>

> > Actually, it's lupus-like symptoms that can evolve into the actual

disease

> > or some form of it if not resolved.

> > ***************************

> > Hi Jeff,

> > Nope never happened never proven . There was only one patient to date

that did

> > develop lupus but again it was not established prior to minocycline

treatment

> > if in fact she had dormant lupus to begin with . Minocycline therapy to

the

> > best of my knowledge has never been proven to be caused by minocycline

therapy

> > . Warm regards,

>

> Socjog, you're just wrong here, the fact that minocycline can cause

> drug-induced lupus has been known for a long time. You are talking about

one

> study which has been published recently, but if you check the literature,

> you'll find drug-induced lupus has been associated, rarely, with

minocycline

> and a number of other drugs for years now. The one study you are aware of

> happened to be among teenage acne patients, and easy group to isolate and

> study, because that is the group who has used minocycline the most

> previously.

>

> To quote Arthritis and Allied Conditions, a standard rheumatology text, " A

> variety of drugs have been implicated as capable of producing the whole or

> partial clinical or serologic features of SLE. " Dr. Brown knew this, and

> other doctors who are skilled in using AP know this, and take adequate

> precautions.

>

> Drug induced lupus is distinguished form idiopathic lupus by some

> differences which can be found in serum autoantibodies, and by the fact

that

> stopping the offending drug, as with Jeff and minocycline, stops the lupus

> symptoms.

>

> Read the material on the rheumatic.org site, you'll find the information

> there. Minocycline is also associated with autoimmune hepatitis and in

rare

> instances a dangerous brain swelling. It is not wise to be taking

> minocycline and also deny the possibility of any adverse effects. These

are

> quite dangerous if you are the rare individual to whom they happen.

>

> Like any drug, one should be aware of the potential down sides of any of

the

> antibiotics we use.

>

> With this knowledge, I will continue to take my minocycline and be

> incredibly pleased it helps my arthritis. If I wake up one day next week

> with lupus or hepatis, minocycline will be the first thing I suspect, and

> I'll stop it immediately to see if the symptoms subside.

>

> --

> Jean

> jpro2@...

>

February 22, 2003

on 2/22/03 12:25 PM, socjog, at socjog@..., wrote:

> Thanks for pointing out that this is RARE . To say minocycline causes lupus

> is ridculous and not evident .

Socjog, you are engaging in some rather poorly worded semantics.

Here's what I see, and I think we do agree:

Drug induced lupus looks and acts very much like idiopathic lupus, but they

can be distinguished by certain differences in blood test, and by

withdrawing the offending drug. How easily that distinction is made is going

to be dependent upon the education and awareness of the patient and doctor,

and a willingness to entertain the appropriate suspicion.

Here's where I think the situation needs further clarification:

To begin with, you seem to be saying it isn't even necessary to be aware of

this. Perhaps this is just your writing style, which is a little imprecise.

According to my references, the lupus symptoms usually subside quickly, but

sometimes it takes many months. In some very few cases, the symptoms never

subside. If you continue taking the offending drug, permanent organ damage

can occur, particularly in the case of autoimmune hepatitis. Certainly it

can cause unnecessary misery, so it is important to determine if the drug is

causing the symptoms. If stopping a drug which causes lupus would stop the

symptoms, whether the offending drug is minocycline or any other drug which

can cause this, it is very important that the drug is stopped before more

drastic treatment is initiated, such as the use of prednisone, or before

permanent organ damage ensues.

In the cases where the lupus symptoms do not subside, I agree with you that

it would be impossible to be sure whether the disease was drug-induced or

idiopathic, and was going to happen in that time frame anyway. I believe it

is irresponsible to say lupus could in no way, not possibly, be caused by

minocycline. You and I are not in a position to know this. It really doesn't

appear that enough research has yet been done to make this determination.

The important point is to be educated and be aware as you take

pharmaceuticals, especially any that you intend to take on an ongoing basis,

perhaps for the rest of your life.

The important point is to not deny the possibility that some drugs can cause

drug-induced lupus, whether you want to call it drug-induced lupus or

drug-induced lupus-like syndrome is irrelevant. The symptoms are real, and

in the case of some organ involvement, damage can be permanent.

To tell someone who reports drug induced lupus or hepatitis or increased

intracranial pressure that they probably just had a Herx is irresponsible.

To continue to argue with them is about a confirmed diagnosis is pointless.

--

Jean

jpro2@...

February 22, 2003

Hi

When l started therapy l used minocycline. My ANA was normal with no titer.

After a few months my ANA came back positive with a high titer and l was

told l had antibodies to Lupus. l stopped the minocycline, my ANA came

back negative but the titer was still high and has not come down yet, and

this is years later. A friend of mine who flies into Boston and is treated

by Dr. T. had the same problem on the minocycline and he took her off it and

now she has Lupus. How do you figure...

Ginger

Re: rheumatic sorry Jeff ...................

> on 2/22/03 11:32 AM, socjog, at socjog@..., wrote:

>

> > Actually, it's lupus-like symptoms that can evolve into the actual

disease

> > or some form of it if not resolved.

> > ***************************

> > Hi Jeff,

> > Nope never happened never proven . There was only one patient to date

that did

> > develop lupus but again it was not established prior to minocycline

treatment

> > if in fact she had dormant lupus to begin with . Minocycline therapy to

the

> > best of my knowledge has never been proven to be caused by minocycline

therapy

> > . Warm regards,

>

> Socjog, you're just wrong here, the fact that minocycline can cause

> drug-induced lupus has been known for a long time. You are talking about

one

> study which has been published recently, but if you check the literature,

> you'll find drug-induced lupus has been associated, rarely, with

minocycline

> and a number of other drugs for years now. The one study you are aware of

> happened to be among teenage acne patients, and easy group to isolate and

> study, because that is the group who has used minocycline the most

> previously.

>

> To quote Arthritis and Allied Conditions, a standard rheumatology text, " A

> variety of drugs have been implicated as capable of producing the whole or

> partial clinical or serologic features of SLE. " Dr. Brown knew this, and

> other doctors who are skilled in using AP know this, and take adequate

> precautions.

>

> Drug induced lupus is distinguished form idiopathic lupus by some

> differences which can be found in serum autoantibodies, and by the fact

that

> stopping the offending drug, as with Jeff and minocycline, stops the lupus

> symptoms.

>

> Read the material on the rheumatic.org site, you'll find the information

> there. Minocycline is also associated with autoimmune hepatitis and in

rare

> instances a dangerous brain swelling. It is not wise to be taking

> minocycline and also deny the possibility of any adverse effects. These

are

> quite dangerous if you are the rare individual to whom they happen.

>

> Like any drug, one should be aware of the potential down sides of any of

the

> antibiotics we use.

>

> With this knowledge, I will continue to take my minocycline and be

> incredibly pleased it helps my arthritis. If I wake up one day next week

> with lupus or hepatis, minocycline will be the first thing I suspect, and

> I'll stop it immediately to see if the symptoms subside.

>

> --

> Jean

> jpro2@...

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

February 22, 2003

Ginger,

Likewise my ANA was normal and then increased coinciding with fevers. My

Sed Rate also increased. Both returned to normal after discontimuing the

minocin, but I do recall my Dr commenting that sometimes they do not return

to normal. Whether he knew specifically of this through a patient or he

only was aware of it, I do not recall. Regardless of how its classified or

termed, and regardless of its frequency, an autoimmune response to the

antibiotic is initiated in some cases, and if not addressed, can potentially

have long term implications.

Jeff

----Original Message Follows----

From: <gincur@...>

" socjog " <socjog@...>, " AP rheumatic.org "

<rheumatic >, " Probert " <jpro2@...>

Subject: Re: rheumatic sorry Jeff ...................

Date: Sat, 22 Feb 2003 14:20:12 -0500

Hi

When l started therapy l used minocycline. My ANA was normal with no titer.

After a few months my ANA came back positive with a high titer and l was

told l had antibodies to Lupus. l stopped the minocycline, my ANA came

back negative but the titer was still high and has not come down yet, and

this is years later. A friend of mine who flies into Boston and is treated

by Dr. T. had the same problem on the minocycline and he took her off it and

now she has Lupus. How do you figure...

Ginger

Re: rheumatic sorry Jeff ...................

> on 2/22/03 11:32 AM, socjog, at socjog@..., wrote:

>

> > Actually, it's lupus-like symptoms that can evolve into the actual

disease

> > or some form of it if not resolved.

> > ***************************

> > Hi Jeff,

> > Nope never happened never proven . There was only one patient to date

that did

> > develop lupus but again it was not established prior to minocycline

treatment

> > if in fact she had dormant lupus to begin with . Minocycline therapy

to

the

> > best of my knowledge has never been proven to be caused by minocycline

therapy

> > . Warm regards,

>

> Socjog, you're just wrong here, the fact that minocycline can cause

> drug-induced lupus has been known for a long time. You are talking about

one

> study which has been published recently, but if you check the literature,

> you'll find drug-induced lupus has been associated, rarely, with

minocycline

> and a number of other drugs for years now. The one study you are aware of

> happened to be among teenage acne patients, and easy group to isolate and

> study, because that is the group who has used minocycline the most

> previously.

>

> To quote Arthritis and Allied Conditions, a standard rheumatology text,

" A

> variety of drugs have been implicated as capable of producing the whole

or

> partial clinical or serologic features of SLE. " Dr. Brown knew this, and

> other doctors who are skilled in using AP know this, and take adequate

> precautions.

>

> Drug induced lupus is distinguished form idiopathic lupus by some

> differences which can be found in serum autoantibodies, and by the fact

that

> stopping the offending drug, as with Jeff and minocycline, stops the

lupus

> symptoms.

>

> Read the material on the rheumatic.org site, you'll find the information

> there. Minocycline is also associated with autoimmune hepatitis and in

rare

> instances a dangerous brain swelling. It is not wise to be taking

> minocycline and also deny the possibility of any adverse effects. These

are

> quite dangerous if you are the rare individual to whom they happen.

>

> Like any drug, one should be aware of the potential down sides of any of

the

> antibiotics we use.

>

> With this knowledge, I will continue to take my minocycline and be

> incredibly pleased it helps my arthritis. If I wake up one day next week

> with lupus or hepatis, minocycline will be the first thing I suspect, and

> I'll stop it immediately to see if the symptoms subside.

>

> --

> Jean

> jpro2@...

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

February 22, 2003

Jeff,

l do agree with you. Your doctor must be experienced in this field. Thanks

Ginger

Re: rheumatic sorry Jeff ...................

>

> > on 2/22/03 11:32 AM, socjog, at socjog@..., wrote:

> >

> > > Actually, it's lupus-like symptoms that can evolve into the actual

> disease

> > > or some form of it if not resolved.

> > > ***************************

> > > Hi Jeff,

> > > Nope never happened never proven . There was only one patient to date

> that did

> > > develop lupus but again it was not established prior to minocycline

> treatment

> > > if in fact she had dormant lupus to begin with . Minocycline therapy

> to

> the

> > > best of my knowledge has never been proven to be caused by

minocycline

> therapy

> > > . Warm regards,

> >

> > Socjog, you're just wrong here, the fact that minocycline can cause

> > drug-induced lupus has been known for a long time. You are talking

about

> one

> > study which has been published recently, but if you check the

literature,

> > you'll find drug-induced lupus has been associated, rarely, with

> minocycline

> > and a number of other drugs for years now. The one study you are aware

of

> > happened to be among teenage acne patients, and easy group to isolate

and

> > study, because that is the group who has used minocycline the most

> > previously.

> >

> > To quote Arthritis and Allied Conditions, a standard rheumatology text,

> " A

> > variety of drugs have been implicated as capable of producing the whole

> or

> > partial clinical or serologic features of SLE. " Dr. Brown knew this,

and

> > other doctors who are skilled in using AP know this, and take adequate

> > precautions.

> >

> > Drug induced lupus is distinguished form idiopathic lupus by some

> > differences which can be found in serum autoantibodies, and by the fact

> that

> > stopping the offending drug, as with Jeff and minocycline, stops the

> lupus

> > symptoms.

> >

> > Read the material on the rheumatic.org site, you'll find the

information

> > there. Minocycline is also associated with autoimmune hepatitis and in

> rare

> > instances a dangerous brain swelling. It is not wise to be taking

> > minocycline and also deny the possibility of any adverse effects. These

> are

> > quite dangerous if you are the rare individual to whom they happen.

> >

> > Like any drug, one should be aware of the potential down sides of any

of

> the

> > antibiotics we use.

> >

> > With this knowledge, I will continue to take my minocycline and be

> > incredibly pleased it helps my arthritis. If I wake up one day next

week

> > with lupus or hepatis, minocycline will be the first thing I suspect,

and

> > I'll stop it immediately to see if the symptoms subside.

> >

> > --

> > Jean

> > jpro2@...

> >

> > To unsubscribe, email: rheumatic-unsubscribeegroups

> >

February 23, 2003

,

Do me a favor and dont assume what I am saying . I think it is quite clear

my position. I'll comment one more time regarding your remarks and then

enough said as far as Im concerned here its just not a debatable issue .

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

>

> > Thanks for pointing out that this is RARE . To say minocycline causes

lupus

> > is ridculous and not evident .

>

> Socjog, you are engaging in some rather poorly worded semantics.

>

> Here's what I see, and I think we do agree:

>

> Drug induced lupus looks and acts very much like idiopathic lupus, but

they

> can be distinguished by certain differences in blood test, and by

> withdrawing the offending drug. How easily that distinction is made is

going

> to be dependent upon the education and awareness of the patient and

doctor,

> and a willingness to entertain the appropriate suspicion.

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

RESPONSE

Nope do not agree because there is no drug induced lupus but rather a lupus

like syndrome BIG difference in words not semantics but an important

difference to understand exactly what was seen .

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

>

> Here's where I think the situation needs further clarification:

>

> To begin with, you seem to be saying it isn't even necessary to be aware

of

> this. Perhaps this is just your writing style, which is a little

imprecise.

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

RESPONSE

Nope never said that . This is what YOU think I was trying to say and how

you came to this conclusion goes beyond my thinking since I didn't even

remotely state anything near to this above comment of yours. My writing

style was most definitely very clear and to the point perhaps your

interpretations are a bit presumptuous

>

> According to my references, the lupus symptoms usually subside quickly,

but

> sometimes it takes many months. In some very few cases, the symptoms never

> subside. If you continue taking the offending drug, permanent organ damage

> can occur, particularly in the case of autoimmune hepatitis.

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

RESPONSE

Where are you reading this ????????

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

Certainly it

> can cause unnecessary misery, so it is important to determine if the drug

is

> causing the symptoms.

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

RESPONSE

Then you better never take an aspirin for aspirin by far is more dangerous

then minocycline and can cause far more " misery " . We are talking about a

drug that is used for children to treat acne that is how benign this

minocycline drug is . There are no warnings or precautions of organ damage

as you claim above in the PDR or any drug medicine reference book and or

literature . Almost any drug has a potential to cause problems but you can

not neglect to look at what is the percentage of these problems caused by

the amount of patients currently using this drug . Minocycline is NOT new to

the market the drug is over 40 years old . It was proven safe and effective

by the NIH, NIAMS and the list goes on and on . Now if your talking about

ONE study were ONE patient had developed lupus after 40 yrs of their drug

consistently being used on the market without issue your not being realistic

.. Plus that ONE patient it was NEVER determined whether or not she had lupus

PRIOR to ever taking the medication . So you are at a much greater risk for

developing problems if you were to take an aspirin . Many drugs have an

outrageous reaction here and there and granted it is wise to be aware but to

take one reaction and make a claim that a drug has the potential to do this

is a gross diservice to all those here considering using this very safe,

effective and benign therapy .

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

If stopping a drug which causes lupus would stop the

> symptoms, whether the offending drug is minocycline or any other drug

which

> can cause this, it is very important that the drug is stopped before more

> drastic treatment is initiated, such as the use of prednisone, or before

> permanent organ damage ensues.

>

> In the cases where the lupus symptoms do not subside, I agree with you

that

> it would be impossible to be sure whether the disease was drug-induced or

> idiopathic, and was going to happen in that time frame anyway.

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

RESPONSE

NO not cases CASE !!!! Yes this whole scenario started for a British study

and ONE case of lupus was reported but as I said it was never determined if

she had lupus prior to minocycline therapy ALL other patients ceased in

these " lupus like " symptoms once the drug was discontinued

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

I believe it

> is irresponsible to say lupus could in no way, not possibly, be caused by

> minocycline.

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

RESPONSE

Well I vehemntly diasagree with you as to there is no evidence to suggest

what you are saying is true . Lupus is not caused by minocycline . I usually

like to base my comments on what is known not what might occur .

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

You and I are not in a position to know this. It really doesn't

> appear that enough research has yet been done to make this determination.

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

RESPONSE

I most definitely am in the position to read the information available to

me and I know that lupus is not caused by minocycline !!! I also know the

drug is on the market for over 40 yrs and has not had the FDA initiate a

label change regarding this drug and or its use which if the study

mentioned was credible the FDA would have done so as was done with Enbrel .

There just has not been credible evidence to warrant any concern here .

> The important point is to be educated and be aware as you take

> pharmaceuticals, especially any that you intend to take on an ongoing

basis,

> perhaps for the rest of your life.

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

RESPONSE

. The important thing is to know your above comment but it is more

important to know what percentages versus the amount of patients using a

drug when and if this reaction can happen . Your comments here could

definitely dissuade someone from trying a viable treatment . Plus your

comments are subjective judgment .

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

>

> The important point is to not deny the possibility that some drugs can

cause

> drug-induced lupus, whether you want to call it drug-induced lupus or

> drug-induced lupus-like syndrome is irrelevant.

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

RESPONSE

LOL Its NOT what I want to call it. It is what the facts are drug induced

lupus doesn't exist but drug induced lupus LIKE syndrome is a rare

possibility if you do not see the importance of this wording well then I

really can not help you to understand the relevance here !!!

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

The symptoms are real, and

> in the case of some organ involvement, damage can be permanent.

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

RESPONSE

Abolutely ridiculous and not founded and not proven .

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

>

> To tell someone who reports drug induced lupus or hepatitis or increased

> intracranial pressure that they probably just had a Herx is irresponsible.

> To continue to argue with them is about a confirmed diagnosis is

pointless.

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

Are you accusing me of doing this because I never have!!! Maybe your

confusing me with someone else . Enough said you obviously do not see the

need nor the relevance in how one simple little word can change an entire

outcome of what is read . I appreciate this exchange of dialogue and I think

we both made our point . Let the group judge for themselves dont want to

beat a dead horse . Regards

socjog

February 23, 2003

Hi Ginger ,

Was your friend screened for lupus prior to taking minocycline ???

socjog

Re: rheumatic sorry Jeff ...................

>

> > on 2/22/03 11:32 AM, socjog, at socjog@..., wrote:

> >

> > > Actually, it's lupus-like symptoms that can evolve into the actual

> disease

> > > or some form of it if not resolved.

> > > ***************************

> > > Hi Jeff,

> > > Nope never happened never proven . There was only one patient to date

> that did

> > > develop lupus but again it was not established prior to minocycline

> treatment

> > > if in fact she had dormant lupus to begin with . Minocycline therapy

to

> the

> > > best of my knowledge has never been proven to be caused by minocycline

> therapy

> > > . Warm regards,

> >

> > Socjog, you're just wrong here, the fact that minocycline can cause

> > drug-induced lupus has been known for a long time. You are talking about

> one

> > study which has been published recently, but if you check the

literature,

> > you'll find drug-induced lupus has been associated, rarely, with

> minocycline

> > and a number of other drugs for years now. The one study you are aware

of

> > happened to be among teenage acne patients, and easy group to isolate

and

> > study, because that is the group who has used minocycline the most

> > previously.

> >

> > To quote Arthritis and Allied Conditions, a standard rheumatology text,

" A

> > variety of drugs have been implicated as capable of producing the whole

or

> > partial clinical or serologic features of SLE. " Dr. Brown knew this, and

> > other doctors who are skilled in using AP know this, and take adequate

> > precautions.

> >

> > Drug induced lupus is distinguished form idiopathic lupus by some

> > differences which can be found in serum autoantibodies, and by the fact

> that

> > stopping the offending drug, as with Jeff and minocycline, stops the

lupus

> > symptoms.

> >

> > Read the material on the rheumatic.org site, you'll find the information

> > there. Minocycline is also associated with autoimmune hepatitis and in

> rare

> > instances a dangerous brain swelling. It is not wise to be taking

> > minocycline and also deny the possibility of any adverse effects. These

> are

> > quite dangerous if you are the rare individual to whom they happen.

> >

> > Like any drug, one should be aware of the potential down sides of any of

> the

> > antibiotics we use.

> >

> > With this knowledge, I will continue to take my minocycline and be

> > incredibly pleased it helps my arthritis. If I wake up one day next week

> > with lupus or hepatis, minocycline will be the first thing I suspect,

and

> > I'll stop it immediately to see if the symptoms subside.

> >

> > --

> > Jean

> > jpro2@...

> >

> > To unsubscribe, email: rheumatic-unsubscribeegroups

> >

February 23, 2003

Hi Everyone,

I was so very sick on and off for about 10 yrs with nothing ever

showing up in the tests, they meaning even Cleveland Clinic could not find my

RA and Lupus. I had times of remission and attacks. Finally it showerd up and

it still plays games. When I was at my worst my sed rate said like 24 which

was not high, it went to 85 and plays around even now, but make no mistake

the tests are better now but still you can have it and things just do not

show up at all. Finally the biopsey showed alot but sometimes tests to ME

mean little. This was and is a hard time for people who have to work and make

a liveing, so even the tests and drs. don't always have the answers as pain

is pain and things do hide. Just My View from Ohio

February 23, 2003

Hi Everyone,

It appears we now know what causes RA and Lupus now the drug that works

for so many out here and keeps us well also makes so many sick???? Well maybe

but I have always heard LUPUS like was rare and when stopping the drug it

stops. Of course one could be wrong, I also have know many over my 15 yrs on

this AP and never heard all this. Also I talk with Dr. Sinnott from Iowa and

he just said if in doubt go to Doxy as it is safe and will not cause a

problem.Just My View here and NO I am not a dr. just a life=long RA and Lupus

person who can now say I have a life. I truely hope this does not scare some

of the New people from a treatment that has saved so many out here with

enough trouble getting the Drs. and the AMA to give it. I can only say I have

talked to people all over the world who have had the great results I have and

I bet alot on here also. But it is nice for us to have these great debates on

here. from Ohio

February 23, 2003

Hi Socjog,Yes she was. She did not have Lupus, just the beginning of RA. Dr

Trentham did a thorough job, and was quite acurate. She is very pleased with

him, she would have to be to fly out to Boston to see him. He did tell her

that sometimes in rare cases Minocycline can cause Lupus. To say that a

drug cannot cause another disease, in my experience and opinion is wrong.

My daughter has a friend who had pneumonia and was put on penicillian.

Within 4 days she came down with RA. Now whether this was an allegic

reaction, l do not no but she has full blown RA, and the doctor told her it

was from the drug, which was very honest of him because they never admit it

is their drugs. Hope this helps.

Ginger

---- Original Message -----

From: " socjog " <socjog@...>

<gincur@...>; " AP rheumatic.org " <rheumatic >;

" Probert " <jpro2@...>

Sent: Saturday, February 22, 2003 8:32 PM

Subject: Re: rheumatic sorry Jeff ...................

> Hi Ginger ,

> Was your friend screened for lupus prior to taking minocycline ???

> socjog

> Re: rheumatic sorry Jeff ...................

> >

> > > on 2/22/03 11:32 AM, socjog, at socjog@..., wrote:

> > >

> > > > Actually, it's lupus-like symptoms that can evolve into the actual

> > disease

> > > > or some form of it if not resolved.

> > > > ***************************

> > > > Hi Jeff,

> > > > Nope never happened never proven . There was only one patient to

date

> > that did

> > > > develop lupus but again it was not established prior to minocycline

> > treatment

> > > > if in fact she had dormant lupus to begin with . Minocycline

therapy

> to

> > the

> > > > best of my knowledge has never been proven to be caused by

minocycline

> > therapy

> > > > . Warm regards,

> > >

> > > Socjog, you're just wrong here, the fact that minocycline can cause

> > > drug-induced lupus has been known for a long time. You are talking

about

> > one

> > > study which has been published recently, but if you check the

> literature,

> > > you'll find drug-induced lupus has been associated, rarely, with

> > minocycline

> > > and a number of other drugs for years now. The one study you are aware

> of

> > > happened to be among teenage acne patients, and easy group to isolate

> and

> > > study, because that is the group who has used minocycline the most

> > > previously.

> > >

> > > To quote Arthritis and Allied Conditions, a standard rheumatology

text,

> " A

> > > variety of drugs have been implicated as capable of producing the

whole

> or

> > > partial clinical or serologic features of SLE. " Dr. Brown knew this,

and

> > > other doctors who are skilled in using AP know this, and take adequate

> > > precautions.

> > >

> > > Drug induced lupus is distinguished form idiopathic lupus by some

> > > differences which can be found in serum autoantibodies, and by the

fact

> > that

> > > stopping the offending drug, as with Jeff and minocycline, stops the

> lupus

> > > symptoms.

> > >

> > > Read the material on the rheumatic.org site, you'll find the

information

> > > there. Minocycline is also associated with autoimmune hepatitis and in

> > rare

> > > instances a dangerous brain swelling. It is not wise to be taking

> > > minocycline and also deny the possibility of any adverse effects.

These

> > are

> > > quite dangerous if you are the rare individual to whom they happen.

> > >

> > > Like any drug, one should be aware of the potential down sides of any

of

> > the

> > > antibiotics we use.

> > >

> > > With this knowledge, I will continue to take my minocycline and be

> > > incredibly pleased it helps my arthritis. If I wake up one day next

week

> > > with lupus or hepatis, minocycline will be the first thing I suspect,

> and

> > > I'll stop it immediately to see if the symptoms subside.

> > >

> > > --

> > > Jean

> > > jpro2@...

> > >

> > > To unsubscribe, email: rheumatic-unsubscribeegroups

> > >

February 23, 2003

In a message dated 2/23/03 9:43:54 AM, gincur@... writes:

<< Hi

Who is being critical of AP? Not l. Who is scaring any of the new folks? >>

I am a little leery now about AP. I had no idea that one could get lupus(or

a lupus like condition) from it.

However, I know of no effective " cure " for AS that does not have

risks.....and bad side effects.

So this is not a " deal breaker " for me, personally.

I do think that these risks from AP should be discussed, however.

I don't see any reason that anyone should be defensive.

The more knowledge we have, the better...

I appreciate all the comments...

Pris's dime

Show Biz tricks !

Your pig can play golf, soccer, bowl, jump thru hoops, even " ham dunk " ..

" Potbellied Pig Behavior and Training " book at

www.valentinesperformingpigs.com

February 23, 2003

Hi Pris and Everyone,

Yes I agree we can and should talk about any subject we want but about

being defensive well right or wrong for whatever reason people get some wrong

info and then we play romper room on here.

I doubt if many on here but there are some even know about the hard time

we have even had getting AP??? believe me you have no idea the drs. and the

People who need this and it still is hard but thanks to this support from

people far more knowledgeable than I try to show the way, and this is not a

NEW WAY either but I bet many of you just happened to find it, yes it is

important to talk about Facts and what others know and heard but like I HAVE

said I have talked to many and I have heard it is drug induced and RARE and

when the drug is stopped so is the LUPUS in drug induced lupus. I think my

own idea is these diseases change over time in many cases, like my dr. told

me it depends on the degree of RA or Lupus as he said a severe case of RA is

as bad as Lupus. I personally think we may have many and certain ones act up

at different stages of this progress. Again that IS my feelings and do not

even wish a debate but feel free. Alot of things said on line are takein

wrong and people do get defensive oh so what its a line of info so whatever

just say it and get over it I will I PROMISE. JUST MY VIEW from Ohio

February 23, 2003

Hi Ginger ,

I personally know Dr T and I think you mis understood what he was saying

which is extremely common in this regard hence the controversy . I never

said a drug can not cause another disease I would make such a blanket

statement but to say minocycline causes lupus is just inaccurate and that is

what I said . . Dr T who is a Harvard medical professor and is a

rheumatologist at Boston's Beth Israel knows better then to make such a

statement that is just not proven . He may have spoke of a rare possibility

of a lupus like syndrome .

Lupus can come on at any time and they can have positive labs or not have

positive labs . Every study I ever read regarding this lupus like syndrome

once the medication subsided so did the labs and the symptoms . If your

daughter remains with a positive ANA how can you claim it was caused by

minocycline when in fact you do not know if she had the underlying disease

anyway .?? If this is so rare I find this quite odd that you had 2 such

cases in your own experience . For me I have been around patients for 20+

yrs and have never once seen such an occurrence and this includes 6+ yrs

with minocycline patients . JMO that I fine this highly unusual .

Penicillin has never been documented as causing RA . There is an illness

called infective arthritis which when one is exposed to a infection RA is

seen to exhibit itself . This is probably what had happened during her

pneumonia illness . JMO Warm regards,

socjog

Re: rheumatic sorry Jeff ...................

> > >

> > > > on 2/22/03 11:32 AM, socjog, at socjog@..., wrote:

> > > >

> > > > > Actually, it's lupus-like symptoms that can evolve into the actual

> > > disease

> > > > > or some form of it if not resolved.

> > > > > ***************************

> > > > > Hi Jeff,

> > > > > Nope never happened never proven . There was only one patient to

> date

> > > that did

> > > > > develop lupus but again it was not established prior to

minocycline

> > > treatment

> > > > > if in fact she had dormant lupus to begin with . Minocycline

> therapy

> > to

> > > the

> > > > > best of my knowledge has never been proven to be caused by

> minocycline

> > > therapy

> > > > > . Warm regards,

> > > >

> > > > Socjog, you're just wrong here, the fact that minocycline can cause

> > > > drug-induced lupus has been known for a long time. You are talking

> about

> > > one

> > > > study which has been published recently, but if you check the

> > literature,

> > > > you'll find drug-induced lupus has been associated, rarely, with

> > > minocycline

> > > > and a number of other drugs for years now. The one study you are

aware

> > of

> > > > happened to be among teenage acne patients, and easy group to

isolate

> > and

> > > > study, because that is the group who has used minocycline the most

> > > > previously.

> > > >

> > > > To quote Arthritis and Allied Conditions, a standard rheumatology

> text,

> > " A

> > > > variety of drugs have been implicated as capable of producing the

> whole

> > or

> > > > partial clinical or serologic features of SLE. " Dr. Brown knew this,

> and

> > > > other doctors who are skilled in using AP know this, and take

adequate

> > > > precautions.

> > > >

> > > > Drug induced lupus is distinguished form idiopathic lupus by some

> > > > differences which can be found in serum autoantibodies, and by the

> fact

> > > that

> > > > stopping the offending drug, as with Jeff and minocycline, stops the

> > lupus

> > > > symptoms.

> > > >

> > > > Read the material on the rheumatic.org site, you'll find the

> information

> > > > there. Minocycline is also associated with autoimmune hepatitis and

in

> > > rare

> > > > instances a dangerous brain swelling. It is not wise to be taking

> > > > minocycline and also deny the possibility of any adverse effects.

> These

> > > are

> > > > quite dangerous if you are the rare individual to whom they happen.

> > > >

> > > > Like any drug, one should be aware of the potential down sides of

any

> of

> > > the

> > > > antibiotics we use.

> > > >

> > > > With this knowledge, I will continue to take my minocycline and be

> > > > incredibly pleased it helps my arthritis. If I wake up one day next

> week

> > > > with lupus or hepatis, minocycline will be the first thing I

suspect,

> > and

> > > > I'll stop it immediately to see if the symptoms subside.

> > > >

> > > > --

> > > > Jean

> > > > jpro2@...

> > > >

> > > > To unsubscribe, email: rheumatic-unsubscribeegroups

> > > >

February 23, 2003

Hi Socjog,

Here in lies the problem. Read the post below again. l never said my

daughter had a high ANA. l said my daughters girlfriend who is in her

twentys, had pneumonia and took penicillian. She developed RA after four

days on the antibiotic. This is a given. She is in a wheelchair now. The

doctor did tell her it was from the drug. Read the first post o f which l

stated that l had a high titer with a positive ANA after taking the drug

minocycline. l developed antibodies to Lupus. The ANA after stopping the

drug returned to negative but the high titer remains. l have experienced

this.l also stated l have a girlfriend that had the same problem and was

flying into Boston to see Dr. T. for her treatment. He took her off

minocycline as she developed Lupus. No signs of it for two years prior and

all the lab and testing that she had done showed nothing.

lf you know Dr. Trentham personally then you should have known quite a while

ago he was the head of rheumatology at the Beth Israel Hospital in Boston

until its merger with the New England Deaconis. He no longer is the head

Doctor, someone else is. lt is no longer the Beth Israel Hospital. My

girlfriend who has been his patient for over 8 years told me this and l did

read it when all the mergers were going on in Newsweek Magazine. Not coming

from that area, l do not no him at all. But my friend stated that he said

her Lupus came from the minocycline and l would tend to believe her.

Do you have a medical license? Are you a doctor? l am a retired nurse

practioner but certainly not a doctor. l can only speak of my experiences or

what friends have told me. When you say you know Dr. Trentham personally

does this mean you are a patient of his, or do you socialize with him? Just

curious? l just wanted to say that so far my daughter is very healthy and

for this l am so grateful and hope she continues to have good health. Thanks

for your response.

Ginger

Re: rheumatic sorry Jeff ...................

> > > >

> > > > > on 2/22/03 11:32 AM, socjog, at socjog@..., wrote:

> > > > >

> > > > > > Actually, it's lupus-like symptoms that can evolve into the

actual

> > > > disease

> > > > > > or some form of it if not resolved.

> > > > > > ***************************

> > > > > > Hi Jeff,

> > > > > > Nope never happened never proven . There was only one patient to

> > date

> > > > that did

> > > > > > develop lupus but again it was not established prior to

> minocycline

> > > > treatment

> > > > > > if in fact she had dormant lupus to begin with . Minocycline

> > therapy

> > > to

> > > > the

> > > > > > best of my knowledge has never been proven to be caused by

> > minocycline

> > > > therapy

> > > > > > . Warm regards,

> > > > >

> > > > > Socjog, you're just wrong here, the fact that minocycline can

cause

> > > > > drug-induced lupus has been known for a long time. You are talking

> > about

> > > > one

> > > > > study which has been published recently, but if you check the

> > > literature,

> > > > > you'll find drug-induced lupus has been associated, rarely, with

> > > > minocycline

> > > > > and a number of other drugs for years now. The one study you are

> aware

> > > of

> > > > > happened to be among teenage acne patients, and easy group to

> isolate

> > > and

> > > > > study, because that is the group who has used minocycline the most

> > > > > previously.

> > > > >

> > > > > To quote Arthritis and Allied Conditions, a standard rheumatology

> > text,

> > > " A

> > > > > variety of drugs have been implicated as capable of producing the

> > whole

> > > or

> > > > > partial clinical or serologic features of SLE. " Dr. Brown knew

this,

> > and

> > > > > other doctors who are skilled in using AP know this, and take

> adequate

> > > > > precautions.

> > > > >

> > > > > Drug induced lupus is distinguished form idiopathic lupus by some

> > > > > differences which can be found in serum autoantibodies, and by the

> > fact

> > > > that

> > > > > stopping the offending drug, as with Jeff and minocycline, stops

the

> > > lupus

> > > > > symptoms.

> > > > >

> > > > > Read the material on the rheumatic.org site, you'll find the

> > information

> > > > > there. Minocycline is also associated with autoimmune hepatitis

and

> in

> > > > rare

> > > > > instances a dangerous brain swelling. It is not wise to be taking

> > > > > minocycline and also deny the possibility of any adverse effects.

> > These

> > > > are

> > > > > quite dangerous if you are the rare individual to whom they

happen.

> > > > >

> > > > > Like any drug, one should be aware of the potential down sides of

> any

> > of

> > > > the

> > > > > antibiotics we use.

> > > > >

> > > > > With this knowledge, I will continue to take my minocycline and be

> > > > > incredibly pleased it helps my arthritis. If I wake up one day

> > > > > with lupus or hepatis, minocycline will be the first thing I

> suspect,

> > > and

> > > > > I'll stop it immediately to see if the symptoms subside.

> > > > >

> > > > > --

> > > > > Jean

> > > > > jpro2@...

> > > > >

> > > > > To unsubscribe, email: rheumatic-unsubscribeegroups

> > > > >

February 23, 2003

Hi Ginger ,

Well it doesn't matter who had the Elevated ANA but the fact remains

that you do not know if in fact lupus was present prior to minocycline

therapy .

Your daughters friend or whom ever being in a wheel chair is NOT because

of minocycline . If that were the case the drug would very much be in

question by the FDA and woud not be the choice drug used amoung young adults

to treat acne . . Im more inclined to think if she is in a wheel chair it is

from her RA and if she had pneumonia prior it could have been from that

organism known as infectious arthritis .

As far as Dr T yes he is still at Boston's Beth Israel ( still called that

even though it acquired the Deaconess medical Center ) as a staff

rheumatologist and leading researching using minocycline therapy for auto

immune disease IE scleroderma and rheumatoid arthritis . Yes he still

teaches at Harvard pre med. I did see him as a Patient and still do . He is

a brilliant man to state what you said he did sorry JMO I dont agree I do

believe you mis-interpreted what he had said because I have had many

conversations with him in this regard.

Your friend stated this that and the other thing and sometimes in this

transferring of information a it can gets misconstrued. I tend not to

believe your friend but rather the medical evidence put before us . Hope no

offense is taken as I just am disagreeing with information you are posting .

One final comment you do know that most of the information and case

studies have been involved with young adults ages 15-29 using minocycline

for acne . There is little evidence of older or younger auto immune disease

patients who have lupus (SLE) and getting worse on minocycline therapy nor

any info involving those using this protocol to treat auto immune disease .

Just for your information I have scleroderma and lupus and RA in my overlap

MCTD and am almost in remission . Wouldn't those on minocycline be more

prone to minocycline exasperating their symptoms and yet none is seen in the

documentation ??? I just think for those of us with auto immune disease this

lupus like syndrome only found in young adults being treated for acne is

not a significant concern. In the very documentation of the case studies

involving these young adults it is concluded as rare and not a significant

issue so why are we here discussing this ??? Im sorry but I do think we

need to respectfully agree to disagree here . I appreciate your dialogue

warm regards,

socjog

From: <gincur@...>

" socjog " <socjog@...>; " AP rheumatic.org "

Sent: Sunday, February 23, 2003 10:17 AM

Subject: Re: rheumatic sorry Jeff ...................

> Hi Socjog,

> Here in lies the problem. Read the post below again. l never said my

> daughter had a high ANA. l said my daughters girlfriend who is in her

> twentys, had pneumonia and took penicillian. She developed RA after four

> days on the antibiotic. This is a given. She is in a wheelchair now. The

> doctor did tell her it was from the drug. Read the first post o f which l

> stated that l had a high titer with a positive ANA after taking the drug

> minocycline. l developed antibodies to Lupus. The ANA after stopping the

> drug returned to negative but the high titer remains. l have experienced

> this.l also stated l have a girlfriend that had the same problem and was

> flying into Boston to see Dr. T. for her treatment. He took her off

> minocycline as she developed Lupus. No signs of it for two years prior

and

> all the lab and testing that she had done showed nothing.

> lf you know Dr. Trentham personally then you should have known quite a

while

> ago he was the head of rheumatology at the Beth Israel Hospital in Boston

> until its merger with the New England Deaconis. He no longer is the head

> Doctor, someone else is. lt is no longer the Beth Israel Hospital. My

> girlfriend who has been his patient for over 8 years told me this and l

did

> read it when all the mergers were going on in Newsweek Magazine. Not

coming

> from that area, l do not no him at all. But my friend stated that he said

> her Lupus came from the minocycline and l would tend to believe her.

> Do you have a medical license? Are you a doctor? l am a retired nurse

> practioner but certainly not a doctor. l can only speak of my experiences

or

> what friends have told me. When you say you know Dr. Trentham personally

> does this mean you are a patient of his, or do you socialize with him?

Just

> curious? l just wanted to say that so far my daughter is very healthy and

> for this l am so grateful and hope she continues to have good health.

Thanks

> for your response.

> Ginger

> Re: rheumatic sorry Jeff ...................

> > > > >

> > > > > > on 2/22/03 11:32 AM, socjog, at socjog@..., wrote:

> > > > > >

> > > > > > > Actually, it's lupus-like symptoms that can evolve into the

> actual

> > > > > disease

> > > > > > > or some form of it if not resolved.

> > > > > > > ***************************

> > > > > > > Hi Jeff,

> > > > > > > Nope never happened never proven . There was only one patient

to

> > > date

> > > > > that did

> > > > > > > develop lupus but again it was not established prior to

> > minocycline

> > > > > treatment

> > > > > > > if in fact she had dormant lupus to begin with . Minocycline

> > > therapy

> > > > to

> > > > > the

> > > > > > > best of my knowledge has never been proven to be caused by

> > > minocycline

> > > > > therapy

> > > > > > > . Warm regards,

> > > > > >

> > > > > > Socjog, you're just wrong here, the fact that minocycline can

> cause

> > > > > > drug-induced lupus has been known for a long time. You are

talking

> > > about

> > > > > one

> > > > > > study which has been published recently, but if you check the

> > > > literature,

> > > > > > you'll find drug-induced lupus has been associated, rarely, with

> > > > > minocycline

> > > > > > and a number of other drugs for years now. The one study you are

> > aware

> > > > of

> > > > > > happened to be among teenage acne patients, and easy group to

> > isolate

> > > > and

> > > > > > study, because that is the group who has used minocycline the

most

> > > > > > previously.

> > > > > >

> > > > > > To quote Arthritis and Allied Conditions, a standard

rheumatology

> > > text,

> > > > " A

> > > > > > variety of drugs have been implicated as capable of producing

the

> > > whole

> > > > or

> > > > > > partial clinical or serologic features of SLE. " Dr. Brown knew

> this,

> > > and

> > > > > > other doctors who are skilled in using AP know this, and take

> > adequate

> > > > > > precautions.

> > > > > >

> > > > > > Drug induced lupus is distinguished form idiopathic lupus by

some

> > > > > > differences which can be found in serum autoantibodies, and by

the

> > > fact

> > > > > that

> > > > > > stopping the offending drug, as with Jeff and minocycline, stops

> the

> > > > lupus

> > > > > > symptoms.

> > > > > >

> > > > > > Read the material on the rheumatic.org site, you'll find the

> > > information

> > > > > > there. Minocycline is also associated with autoimmune hepatitis

> and

> > in

> > > > > rare

> > > > > > instances a dangerous brain swelling. It is not wise to be

taking

> > > > > > minocycline and also deny the possibility of any adverse

effects.

> > > These

> > > > > are

> > > > > > quite dangerous if you are the rare individual to whom they

> happen.

> > > > > >

> > > > > > Like any drug, one should be aware of the potential down sides

of

> > any

> > > of

> > > > > the

> > > > > > antibiotics we use.

> > > > > >

> > > > > > With this knowledge, I will continue to take my minocycline and

be

> > > > > > incredibly pleased it helps my arthritis. If I wake up one day

> next

> > > week

> > > > > > with lupus or hepatis, minocycline will be the first thing I

> > suspect,

> > > > and

> > > > > > I'll stop it immediately to see if the symptoms subside.

> > > > > >

> > > > > > --

> > > > > > Jean

> > > > > > jpro2@...

> > > > > >

> > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups

> > > > > >

February 23, 2003

l do agree. Doctors do not have all the answer. A lot of times they are

wrong. We are all different and this disease strikes us all differently.

That is why our personal experiences are so important and hopefully will

help others to talk with their doctors and make the right decisions.

Ginger

Re: rheumatic sorry Jeff ...................

> Hi Everyone,

> I was so very sick on and off for about 10 yrs with nothing ever

> showing up in the tests, they meaning even Cleveland Clinic could not find

my

> RA and Lupus. I had times of remission and attacks. Finally it showerd up

and

> it still plays games. When I was at my worst my sed rate said like 24

which

> was not high, it went to 85 and plays around even now, but make no mistake

> the tests are better now but still you can have it and things just do not

> show up at all. Finally the biopsey showed alot but sometimes tests to ME

> mean little. This was and is a hard time for people who have to work and

make

> a liveing, so even the tests and drs. don't always have the answers as

pain

> is pain and things do hide. Just My View from Ohio

>

February 23, 2003

Oh Good post so true the tests are useless really they only HELP in

diagnosing but often people think the tests do so much more . Rheuamtology is so

complex and they need a lot more information then what we currently have . These

test often have false positive and false negatives and vary with drugs we are on

.. Good point thanks for sharing. Warm regards,

socjog

Hi Everyone,

I was so very sick on and off for about 10 yrs with nothing ever showing

up in the tests, they meaning even Cleveland Clinic could not find my RA and

Lupus. I had times of remission and attacks. Finally it showerd up and it still

plays games. When I was at my worst my sed rate said like 24 which was not high,

it went to 85 and plays around even now, but make no mistake the tests are

better now but still you can have it and things just do not show up at all.

Finally the biopsey showed alot but sometimes tests to ME mean little. This was

and is a hard time for people who have to work and make a liveing, so even the

tests and drs. don't always have the answers as pain is pain and things do hide.

Just My View from Ohio

February 23, 2003

Yep this I sure do agree with you here !!!

Socjog

Re: rheumatic sorry Jeff ...................

>

> > Hi Everyone,

> > I was so very sick on and off for about 10 yrs with nothing ever

> > showing up in the tests, they meaning even Cleveland Clinic could not

find

> my

> > RA and Lupus. I had times of remission and attacks. Finally it showerd

up

> and

> > it still plays games. When I was at my worst my sed rate said like 24

> which

> > was not high, it went to 85 and plays around even now, but make no

mistake

> > the tests are better now but still you can have it and things just do

not

> > show up at all. Finally the biopsey showed alot but sometimes tests to

ME

> > mean little. This was and is a hard time for people who have to work and

> make

> > a liveing, so even the tests and drs. don't always have the answers as

> pain

> > is pain and things do hide. Just My View from Ohio

> >

February 23, 2003

Hi Socjog,

l have never spoken to Dr. Trentham. My info came from a friend who is also

his patient. He spoke to her not me. l think she knows better than l what

was discused.l would not travel to Boston to see any doctor as l am happy

with my local one. l explained to you (my friends words) that for two years

she had no problem. Dr. T had her on other drugs at this time. Then she

started taking the minocycline and the problem occured. Just her experience.

You have the right to disagree with any info that l post. l welcome it. Most

of what you post l do not agree with. lf Dr. T. believes so much in the

AP, JMO , why is his star patient " KATHLEEN TURNER " on many immuno

suppressants? This by her own admission. Oh well we might never no. Yes l

under stand that most of the people were put on the tetracyclines for acne

are young. My daughter being one of them at the time. She is now in her

fortys and yes l am old, (very old) so l guess l do not no as much as the

young folks! Old people taking the AP their opinions do not count. l

think her friend and the doctor can make the decision of what put her in the

wheelchair without any help from the public. My mistake for posting this.

Not ment to be offensive. My friend is not young and does have lupus. l am

sorry for your MCTD and am glad for your remission. l wish you many years

of health as l do anyone with any number of these disease. l personally

would never give out medical statements without presenting the

documentation. That is just me. l wish you continued success with your

treatment and health.

Ginger

Re: rheumatic sorry Jeff ...................

> > > > > >

> > > > > > > on 2/22/03 11:32 AM, socjog, at socjog@..., wrote:

> > > > > > >

> > > > > > > > Actually, it's lupus-like symptoms that can evolve into the

> > actual

> > > > > > disease

> > > > > > > > or some form of it if not resolved.

> > > > > > > > ***************************

> > > > > > > > Hi Jeff,

> > > > > > > > Nope never happened never proven . There was only one

patient

> to

> > > > date

> > > > > > that did

> > > > > > > > develop lupus but again it was not established prior to

> > > minocycline

> > > > > > treatment

> > > > > > > > if in fact she had dormant lupus to begin with .

Minocycline

> > > > therapy

> > > > > to

> > > > > > the

> > > > > > > > best of my knowledge has never been proven to be caused by

> > > > minocycline

> > > > > > therapy

> > > > > > > > . Warm regards,

> > > > > > >

> > > > > > > Socjog, you're just wrong here, the fact that minocycline can

> > cause

> > > > > > > drug-induced lupus has been known for a long time. You are

> talking

> > > > about

> > > > > > one

> > > > > > > study which has been published recently, but if you check the

> > > > > literature,

> > > > > > > you'll find drug-induced lupus has been associated, rarely,

with

> > > > > > minocycline

> > > > > > > and a number of other drugs for years now. The one study you

are

> > > aware

> > > > > of

> > > > > > > happened to be among teenage acne patients, and easy group to

> > > isolate

> > > > > and

> > > > > > > study, because that is the group who has used minocycline the

> most

> > > > > > > previously.

> > > > > > >

> > > > > > > To quote Arthritis and Allied Conditions, a standard

> rheumatology

> > > > text,

> > > > > " A

> > > > > > > variety of drugs have been implicated as capable of producing

> the

> > > > whole

> > > > > or

> > > > > > > partial clinical or serologic features of SLE. " Dr. Brown knew

> > this,

> > > > and

> > > > > > > other doctors who are skilled in using AP know this, and take

> > > adequate

> > > > > > > precautions.

> > > > > > >

> > > > > > > Drug induced lupus is distinguished form idiopathic lupus by

> some

> > > > > > > differences which can be found in serum autoantibodies, and by

> the

> > > > fact

> > > > > > that

> > > > > > > stopping the offending drug, as with Jeff and minocycline,

stops

> > the

> > > > > lupus

> > > > > > > symptoms.

> > > > > > >

> > > > > > > Read the material on the rheumatic.org site, you'll find the

> > > > information

> > > > > > > there. Minocycline is also associated with autoimmune

hepatitis

> > and

> > > in

> > > > > > rare

> > > > > > > instances a dangerous brain swelling. It is not wise to be

> taking

> > > > > > > minocycline and also deny the possibility of any adverse

> effects.

> > > > These

> > > > > > are

> > > > > > > quite dangerous if you are the rare individual to whom they

> > happen.

> > > > > > >

> > > > > > > Like any drug, one should be aware of the potential down sides

> of

> > > any

> > > > of

> > > > > > the

> > > > > > > antibiotics we use.

> > > > > > >

> > > > > > > With this knowledge, I will continue to take my minocycline

and

> be

> > > > > > > incredibly pleased it helps my arthritis. If I wake up one day

> > next

> > > > week

> > > > > > > with lupus or hepatis, minocycline will be the first thing I

> > > suspect,

> > > > > and

> > > > > > > I'll stop it immediately to see if the symptoms subside.

> > > > > > >

> > > > > > > --

> > > > > > > Jean

> > > > > > > jpro2@...

> > > > > > >

> > > > > > > To unsubscribe, email: rheumatic-unsubscribeegroups

> > > > > > >

February 23, 2003

Hi

Who is being critical of AP? Not l. Who is scaring any of the new folks?

lt is a healthy discussion but unfortunately it never turns out that way.

Always critical remarks, well l guess we are all guiltyof this. l do

apologize.

Ginger

Re: rheumatic sorry Jeff ...................

> Hi Everyone,

> It appears we now know what causes RA and Lupus now the drug that works

> for so many out here and keeps us well also makes so many sick???? Well

maybe

> but I have always heard LUPUS like was rare and when stopping the drug it

> stops. Of course one could be wrong, I also have know many over my 15 yrs

on

> this AP and never heard all this. Also I talk with Dr. Sinnott from Iowa

and

> he just said if in doubt go to Doxy as it is safe and will not cause a

> problem.Just My View here and NO I am not a dr. just a life=long RA and

Lupus

> person who can now say I have a life. I truely hope this does not scare

some

> of the New people from a treatment that has saved so many out here with

> enough trouble getting the Drs. and the AMA to give it. I can only say I

have

> talked to people all over the world who have had the great results I have

and

> I bet alot on here also. But it is nice for us to have these great debates

on

> here. from Ohio

>

February 23, 2003

It is also very possible that the Lupus was hidden from the doctors in

the beginning (it's very hard to get a Lupus diagnosis) or that, in

reality, it's not Lupus at all....just the doctors giving it a label

because they don't have anything else to hang it on. This is what

happened to my mom. She pinged from one diagnosis to the next so many

times, we still don't know what she really has. She has been classified

with everything from RA to Lupus to cancer. They even recently took

back their Lupus diagnosis after they placed her on antidepressants and

she responded favorably. Now if I can just get her to find an AP doctor

in Toledo.

I find it interesting that people have been talking so much how

different our diseases are. They are in their affect on our bodies for

sure...but if you are operating from Dr. Brown's theories and practice,

we are all suffering from mycoplasma infections. The attack is the

same, but the ammo we use has to be modified to fight each strain.

That's why some people respond more favorably when they switch

antibiotics.

If you can at all do it, find an AP doc who is willing to work with you

through this tweaking process. You'll hopefully save yourself much pain

and suffering.

deano

On Sunday, February 23, 2003, at 11:07 AM, MUGGYPC@... wrote:

> Hi Everyone,

> I have always heard LUPUS like was rare and when stopping the drug it

> stops.

February 23, 2003

Socjoc,

You stated, " Maybe what you were experiencing was effects of the minocycline

attacking the organism "

Hmmm...

Last time I offered my thoughts on this (the herx discussion) I stepped on

some overly sensitive toes. Though this will be like walking out at night

into my dogs' backyard, I'll respond anyhow.

I came out the last discussion not even slightly smarter regarding your

question. Mostly because nobody was able to coherently explain the

difference between a reaction and a flare. So your 'Maybe' from my

perspective is a huge 'Maybe' and I got shelves full of maybe's and not

much understanding. If I rode out my fevers, stayed on minocin and then

woke up one morning cured, the answer would seem obvious and be just like

you suggested. But that's not the way it happened. Maybe there are those

who have been in a similar situation and have a good story from it - I don't

know. I'll tell you frankly though that there are plenty of people who

have more faith in this than me. Stories are great, but when the questions

stack up and the answers are filled with conjecture, its difficult to keep

humming the same tune. Don't know if I ever mentioned this, but after

stopping the minocin and staying off for months, I popped one 50 mg capsul

and that night broke out into a fever again. If the antibiotic was doing

its bit with such a small dose, then this whole thing should be a lot easier

that it is. I suppose that is what ultimately shaped my thinking on this,

that and my Dr detailing his knowledge of what he termed 'serum sickness'

(not lupus-like symptoms). I would love to believe what you are suggesting,

it just doesn't seem probable in my case. For that matter when I account

for the hereditary influences in my case, I am tending to believe that I'll

be one of the less fortunate for whom the AP does not work. Not commenting

on its general effectiveness, just that NOTHING in life is 100% - there are

just no absolutes to hang our hats on. I do appreciate your comment though,

as I KBO.

Jeff

----Original Message Follows----

From: socjog <socjog@...>

Reply-socjog <socjog@...>

" AP rheumatic.org " <rheumatic >

Subject: rheumatic sorry Jeff ...................

Date: Sun, 23 Feb 2003 09:36:08 -0500

Ginger,

Likewise my ANA was normal and then increased coinciding with fevers. My

Sed Rate also increased. Both returned to normal after discontimuing the

minocin, but I do recall my Dr commenting that sometimes they do not return

to normal. Whether he knew specifically of this through a patient or he

only was aware of it, I do not recall. Regardless of how its classified or

termed, and regardless of its frequency, an autoimmune response to the

antibiotic is initiated in some cases, and if not addressed, can potentially

have long term implications.

Jeff

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

Hi Jeff,

Maybe what you were experiencing was effects of the minocycline attacking

the organism . Sed rates and ANAs will increase when the AP is effective

the key is a good AP dr currently using this therapy can differentiate

between a lupus like syndrome which is NOT what you described and an AP

effective reaction . Having an elevated sed rate and ANA is not a lupus

like reaction. Are you currently on any antibiotic now ?? Did you know ANAs

can just about be effected by any drug ??? The other drugs that have been

know to effect an individuals ANA didn't render a lupus like reaction either

in fact no reaction other then an elevated ANA . This is very common with

MANY of our labs . Did you know Tylenol when taken intermittently can cause

liver enzymes to be elevated .??? The list goes on!!

An auto immune response as you call it may very well be the effective

reaction of the antibiotic working on the disease . The long term

implications from the disease can have potentially long term problems if

not treated in a timely manner which has nothing to do with the minocycline

.. Warm regards,

socjog

February 23, 2003

<<this will be like walking out at night

into my dogs' backyard,>>

I can't resist...What a good simile!

Ellen

rheumatic sorry Jeff ...................