Re: Question about Methrotrex?

[Guest guest]

I think you can take two roads, either suppress your immune system with

drugs like methetrexate, and suppress the arthritis, or enhance your immune

system and do the AP. But i don't think you can do both. Two different

philosophies here.

Usually methetrexate gives up on you after a period of time leaving you to

try the next drug. And usually people taking it get sick often because of a

compromised immune system. And it seems like people taking it get a lot of

joint replacements too. For some it works great, but it wont last forever.

Either you have to quit taking it because it goes toxic on you or it just

quits working. When it does quit working you will end up worse than you were

before if you use the analogy of a dam holding back the water.

rheumatic Question about Methrotrex?

> From: " Donna SAPP " <DONNA_SAPP@...>

>

> I have noticed that in the Arthritis books and on this websit some people

say " stay away from methrotrex " ? Am I hearing this correctly? I have

noticed that some people take it. What exactly does this medication do and

are some of you taking it with the AP to get over the hill? Sorry I'm so

ignorant in these medications. Thanks.

>

> Donna Sapp

> in the South

>

>

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

[Guest guest]

Is that your own personal experience with the drug ? Or is that what

you have heard? Remember even our Dr. Franco and Dr. Trentham will use it if

cases are bad enough. And remember there is another school of thought on how

the AP works - (O'Dell's studies), which would suggest that it inhibits

collagenase enyzme activity which promotes inflammation, rather than

actually attacking an infection. Under that scenario, I see the two working

together.

Your final statement makes an assumption that does not hold true for all

people. And I know plenty of people who are on it who don't have joint

replacements. I don't mind people speaking out against it (heck there are

plenty who speak out against the AP!) - I just hope that everyone speaks

from solid scientific evidence. My experience is positive so far - that

does not mean much though because my experience is only anecdotal. I think

you have to look at the stats. Mind you, if you do have nasty side effects

and it does quit working for you and then you're worse off than before, I

have no doubt that you would be opposed to the drug. I'm just not so sure

we can come out and make blanket statements that condemn the drug based on a

rather small percentage of folks who have problems with it (obviously no

consolation if you are one of those)

Mark

Re: rheumatic Question about Methrotrex?

> From: " " <veggie@...>

>

> I think you can take two roads, either suppress your immune system with

> drugs like methetrexate, and suppress the arthritis, or enhance your

immune

> system and do the AP. But i don't think you can do both. Two different

> philosophies here.

> Usually methetrexate gives up on you after a period of time leaving you to

> try the next drug. And usually people taking it get sick often because of

a

> compromised immune system. And it seems like people taking it get a lot of

> joint replacements too. For some it works great, but it wont last forever.

> Either you have to quit taking it because it goes toxic on you or it just

> quits working. When it does quit working you will end up worse than you

were

> before if you use the analogy of a dam holding back the water.

>

>

[Guest guest]

I might also add that I am not suggesting that methotrexate is the answer.

Far from it - I don't think rheumatologists think it is either. If they

did, then why all the excitement over Enbrel,Arava, and Remicade? They keep

searching for something that will work with the least number of side

effects - so far they don't have the answer. In the meantime if the AP is

working for you, you would be nuts to stop it, as it appears to be

relatively safe when compared to all the other options.

Mark

[Guest guest]

Hello All,

I just want to throw in what I've been told by my doctors, followed by

some of my opinions, about methotrexate.

First off, it does seem to " work " in the majority of cases. " Work "

meaning controlling inflammation, controlling sed rates and other

indicators of infection (generally assumed to be autoimmune

infectious-like reaction).

Secondly, I've been told by both of Marks and my's rheumatologists

(Kempf and Seigel) that it won't work forever. Now they always qualify

this with " They have people who have been on MTX for 20 years " Your

guess as to who " they " might be would be a good as mine, but this

probably

come about because neither of these docs haven't been practicing for

20 years yet. Dr. Siegel even hinted to me that those who are on the

20 year plan seem " special " that they could last that long. Kinda funny

actually in that when they mention these patients it is in the same

context that would be considered " anecdotal " if they were talking

about AP successes.

Thirdly, all my other doctors (only one rheumy in that bunch) that i've

seen in the last 18 months (about 5 of them) have said how methotrexate

used for life is definitely a BAD idea and not good for ones body, even

at these " low " doses. That is about all they have to say on that....

Fourth, Dr. Kempf from the beginning has suggested to me that I take MTX

for 6 months in conjunction with minocin to get the inflammation under

control

and then try to wean me off. That doesn't sound so bad but every time

I've

asked him how many of his patients have been successful in getting off

the

methotrexate under this plan, he will not answer my question. I even

had my father with me on one appointment, who was fairly insistent on

getting

an answer to this, and again he would not answer this question. This

being

the case, I am forced to conclude that he has absolutely no patients

where

this has been the case. When I mentioned this to Dr. Seigel on my final

NIH visit he pretty much confirmed this, that MTX would have to be taken

for life.

Fifth, my understanding of Dr. Franco's use of MTX is generally early in

the disease when he is trying to get patients off prednisone (which he

apparently considers very dangerous) or trying to get the initial flare

under control. Again this is just my understanding and maybe someone who

is a patient of Dr. F can clarify this further, but it seems to me that

his goal in treatment is to ultimately get his patients off the

methotrexate, where I feel my doctors want me on MTX for life and they

won't think about it further.

Sixth, Damage can and does occur under MTX treatment. It may be slowed,

but the destruction marches on.

Seventh, Dr. Kempf on my last visit told me bluntly " the only thing that

cures rheumatoid arthritis is Minocin. Let me repeat that, he said " THE

ONLY THING THAT CURES RA IS MINOCIN " !!!!! Of course after saying that he

spent 5 minutes pushing methotrexate on me... Minocin may not

prevent erosions but if it can eradicate the disease entirely the real

equation (I am using made up arbitrary numbers here) might be something

like: You have erosions moving at speed 50 on minocin but after 3 years

the disease is gone leaving your eroded total at 150. With MTX your

erosion velocity is now only 20 but after 20 years your total would be

400. Again, that is completely made up as no one has seemed to study

this quantitatively, but it might make some sense. I really don't know

(and neither does your friendly neighborhood rheumy!)

All this being said, I still don't think of methotrexate as something

completely horrible that no one should ever take. I often wonder if it

might have been a good idea for me to have taken MTX earlier on in the

disease (in conjunction with Minocin) to get my initial MASSIVE

inflammation under control. Problem is I don't trust my rheumies.

I have been doing really great on my AP. I have stopped my cycles of

clotrimazole (since early december) for the time being and have enjoyed

2 full months at 90% or so. This last weekend my right knee and lower

right leg had some massive swelling. I took some extra bromelain, ginger

as well as using DMSO and it has now gone way down--not back to

" nominal " but not too bad any more. I mention this because this is my

great fear, that I will take more than " 2 steps back " and will be forced

to reevaluate my treatment position. But before I would start

methotrexate I will definitely fly out to California to see Dr. Franco

and get his opinion. I know I have never met the man but somehow I

already trust him and if he recommend MTX, then I would take it.

One final thought, age would play a role for me at least in my treatment

options. If I were 50 years old instead of 30 I might very well have

started MTX. When the docs talk about 20 years on MTX I keep thinking

that I would be only 50 and it scares the hell out of me, but if I were

50 my perspective on those 20 years would almost certainly be different.

At some point " quality of life " becomes a more important factor than

" quantity " , but at only 30 my quantity left is quite a bit and that is a

major factor in my choosing antibiotic treatment.

Of course, this is all just my 2 cents....

Take care all,

j.

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

ph A. Graff

Director of Digital Prepress

Graphic Communications, Inc.

(301) 599-2020

" The truth will set you free, but

first it will make you miserable "

[Guest guest]

I am a patient of Dr. Francos and when I first saw him in Sept I was on

Prednisone and Methotrexate. He definitely wants me to wean off the

Prednisone first and then we will address the methotrexate. I have lupus

and have been on the methotrexate for about 2.5 years - last summer when I

tried to drop it I have a severe flare that affected my lungs so I went

right back on. I started Zithromax in Oct and am down to 5mgs pred so

hopefully the end is in sight.

Liz

joegraff@... on 02/02/2000 01:46:12 PM

rheumaticonelist

cc: (bcc: Liz Harter/BCI)

Subject: Re: rheumatic Question about Methrotrex?

From: Joe Graff <joegraff@...>

Hello All,

I just want to throw in what I've been told by my doctors, followed by

some of my opinions, about methotrexate.

First off, it does seem to " work " in the majority of cases. " Work "

meaning controlling inflammation, controlling sed rates and other

indicators of infection (generally assumed to be autoimmune

infectious-like reaction).

Secondly, I've been told by both of Marks and my's rheumatologists

(Kempf and Seigel) that it won't work forever. Now they always qualify

this with " They have people who have been on MTX for 20 years " Your

guess as to who " they " might be would be a good as mine, but this

probably

come about because neither of these docs haven't been practicing for

20 years yet. Dr. Siegel even hinted to me that those who are on the

20 year plan seem " special " that they could last that long. Kinda funny

actually in that when they mention these patients it is in the same

context that would be considered " anecdotal " if they were talking

about AP successes.

Thirdly, all my other doctors (only one rheumy in that bunch) that i've

seen in the last 18 months (about 5 of them) have said how methotrexate

used for life is definitely a BAD idea and not good for ones body, even

at these " low " doses. That is about all they have to say on that....

Fourth, Dr. Kempf from the beginning has suggested to me that I take MTX

for 6 months in conjunction with minocin to get the inflammation under

control

and then try to wean me off. That doesn't sound so bad but every time

I've

asked him how many of his patients have been successful in getting off

the

methotrexate under this plan, he will not answer my question. I even

had my father with me on one appointment, who was fairly insistent on

getting

an answer to this, and again he would not answer this question. This

being

the case, I am forced to conclude that he has absolutely no patients

where

this has been the case. When I mentioned this to Dr. Seigel on my final

NIH visit he pretty much confirmed this, that MTX would have to be taken

for life.

Fifth, my understanding of Dr. Franco's use of MTX is generally early in

the disease when he is trying to get patients off prednisone (which he

apparently considers very dangerous) or trying to get the initial flare

under control. Again this is just my understanding and maybe someone who

is a patient of Dr. F can clarify this further, but it seems to me that

his goal in treatment is to ultimately get his patients off the

methotrexate, where I feel my doctors want me on MTX for life and they

won't think about it further.

Sixth, Damage can and does occur under MTX treatment. It may be slowed,

but the destruction marches on.

Seventh, Dr. Kempf on my last visit told me bluntly " the only thing that

cures rheumatoid arthritis is Minocin. Let me repeat that, he said " THE

ONLY THING THAT CURES RA IS MINOCIN " !!!!! Of course after saying that he

spent 5 minutes pushing methotrexate on me... Minocin may not

prevent erosions but if it can eradicate the disease entirely the real

equation (I am using made up arbitrary numbers here) might be something

like: You have erosions moving at speed 50 on minocin but after 3 years

the disease is gone leaving your eroded total at 150. With MTX your

erosion velocity is now only 20 but after 20 years your total would be

400. Again, that is completely made up as no one has seemed to study

this quantitatively, but it might make some sense. I really don't know

(and neither does your friendly neighborhood rheumy!)

All this being said, I still don't think of methotrexate as something

completely horrible that no one should ever take. I often wonder if it

might have been a good idea for me to have taken MTX earlier on in the

disease (in conjunction with Minocin) to get my initial MASSIVE

inflammation under control. Problem is I don't trust my rheumies.

I have been doing really great on my AP. I have stopped my cycles of

clotrimazole (since early december) for the time being and have enjoyed

2 full months at 90% or so. This last weekend my right knee and lower

right leg had some massive swelling. I took some extra bromelain, ginger

as well as using DMSO and it has now gone way down--not back to

" nominal " but not too bad any more. I mention this because this is my

great fear, that I will take more than " 2 steps back " and will be forced

to reevaluate my treatment position. But before I would start

methotrexate I will definitely fly out to California to see Dr. Franco

and get his opinion. I know I have never met the man but somehow I

already trust him and if he recommend MTX, then I would take it.

One final thought, age would play a role for me at least in my treatment

options. If I were 50 years old instead of 30 I might very well have

started MTX. When the docs talk about 20 years on MTX I keep thinking

that I would be only 50 and it scares the hell out of me, but if I were

50 my perspective on those 20 years would almost certainly be different.

At some point " quality of life " becomes a more important factor than

" quantity " , but at only 30 my quantity left is quite a bit and that is a

major factor in my choosing antibiotic treatment.

Of course, this is all just my 2 cents....

Take care all,

j.

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

ph A. Graff

Director of Digital Prepress

Graphic Communications, Inc.

(301) 599-2020

" The truth will set you free, but

first it will make you miserable "

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

[Guest guest]

Your comments are interesting Joe. Interestingly the comments made to you

by these doctors were not necessarily the comments made to me by those

doctors (case of talking out of both sides of their mouths? Perhaps) (I have

never heard Siegel tell me methotrexate would have to be taken for life. In

fact, he told me I could try it for 3 months and if I didn't like it, I

could stop it. I know people who have quit it- there are plenty on

alt.support. arthritis. And even Bev here has taken it and stopped. And

there are plenty who have quit it and are on Enbrel, Arava,etc, so it is not

impossible to stop) As far as not working forever, I would hope that within

the next 5 years enough advances will have been made that we will not have

to deal with any of this anymore. I will try to be positive and hope that

progress is made.

Your comments on Kempf are amusing. He said basically the same thing to me,

but told me if I didn't improve he would break my arms to make sure I took

methotrexate (yep, an AP doc said that) When my NIH docs told me that it

was crunch time, Kempf readily agreed. But he thought it was ok to continue

with my minocycline, although he did not like the idea of me suggesting MWF.

So even though I have heard him say he thinks the minocin is a cure, his way

of going about that is rather peculiar, wouldn't you say? As far as Siegel

goes, he suggested that there was the possibility that minocycline and

methotrexate had synergistic effects taken together. I suspect he was not

talking about the infectious theory, but rather the inhibition of

inflammatory enzymes.

Your comments on age are right on. Whether they are correct, maybe we'll

find out in 10 years,huh? I am almost 50, so the quality time that I have

left is definitely less than yours and that did play into the equation. But

the overriding factor was the rate of progression. Yet also and quite

frankly, I questioned my own ability to understand the science behind all of

these possibilities. I don't consider myself stupid, but I am not trained

as a researcher or scientist or doctor and at times I question my own

ability to be scientifically literate enough to make these decisions. I try

to listen and understand what the doctor is saying, evaluate it based on my

own readings and reach a conclusion.

I think it has been suggested here that minocin may be necessary to take for

life. Hopefully, we have not forgotten that is a drug too. Albeit, not

potentially as harmful as methotrexate, yet nonetheless an antibiotic that

will be in my bloodstream for maybe 40 years or so. (notice how I have

predicted my longevity to be 90 yrs old - LOL). Do we all know for sure

that it is totally harmless over that many years and will in no way

interfere with other antibiotics being able to do their job? I don't know

the answer to that, but I wonder and I doubt that anyone can say for sure

when it applies to a particular individual. Do I like taking it every day?

No. But I like it better than crawling around, too!

And in closing, I might add that before I just decide to blow off the wisdom

of all my various doctors, where might I be if I blew off their suggestions,

should I have cancer? Or AIDS? Those are often considered incurable as well

just like our disease. I have friends who have extended their lifetimes due

to the miracle of all these drugs we are scared of. I have a friend I talked

to 2 days ago who I wouldn't have talked to if it hadn't been for immune

suppressing drugs. Where would he have been had he decided Laetrile was the

answer? Does that make immuno-suppressing drugs the answer? No,because

people are still dying despite these drugs. Was my friend still glad to be

here? You bet! As you can see we get back to that " Quality " vs Quantitity

issue. At some point, my friend may have to decide that all he is getting is

quantity,not quality and may tell them to pull the plug. Believe me, I would

understand.

Perhaps this new IBM supercomputer that is going to study the human genome

will produce some answers!

(http://www.ornl.gov/TechResources/Human_Genome/home.html). I sure hope so.

And thanks Joe for chipping in with your .02 - may the rest of you chip in

as well!

Mark

Re: rheumatic Question about Methrotrex?

> From: Joe Graff <joegraff@...>

>

> Hello All,

>

> I just want to throw in what I've been told by my doctors, followed by

> some of my opinions, about methotrexate.

>

> First off, it does seem to " work " in the majority of cases. " Work "

> meaning controlling inflammation, controlling sed rates and other

> indicators of infection (generally assumed to be autoimmune

> infectious-like reaction).

>

[Guest guest]

" HOLMES, MARK T. " wrote:

>

> From: MHOLMES@... (HOLMES, MARK T.)

>

> Your comments are interesting Joe. Interestingly the comments made to you

> by these doctors were not necessarily the comments made to me by those

> doctors (case of talking out of both sides of their mouths? Perhaps) (I have

> never heard Siegel tell me methotrexate would have to be taken for life. In

> fact, he told me I could try it for 3 months and if I didn't like it, I

> could stop it.

Oh no, you misunderstand. He told me this also. He just then went on to

say that the RA would return if I stopped.

So he didn't say you'd have to take it for life, he just said you'd have

to take it for life if you wanted it's benefits. Stop the drug, stop the

progress.

I guess he didn't mention this part to you?

He also told me that my RA would NEVER remit. Mind you this is after

him, another doctor and a physical therapist ouuued and ahhhhed over my

" amazing " progress. It was actually kinda funny, it was the PT who used

the word amazing. Right after that, Seigel pulled them out of the room

and when they came back they were much more somber. No more " amazings " ,

hell, almost no more smiles. He shut them up.

It was clear from my last visit that he was doing all he could to steer

me towards MTX, no matter what. He even withheld some of my lab results

(I guess he would call it an oversight but I've continually e-mailed him

for the numbers to no avail--you do the math) I pretty much lost all

respect for him from that last appointment.

All I can say is that I feel great and I've booked yet another " long

weekend " trip to Europe in 2 weeks. Dr. Seigel, eat your heart out. <g>

j.

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

ph A. Graff

Director of Digital Prepress

Graphic Communications, Inc.

(301) 599-2020

" The truth will set you free, but

first it will make you miserable "

[Guest guest]

Re: rheumatic Question about Methrotrex?

> From: Joe Graff <joegraff@...>

>

> So he didn't say you'd have to take it for life, he just said you'd have

> to take it for life if you wanted it's benefits. Stop the drug, stop the

> progress.

>

> I guess he didn't mention this part to you?

Oh, I understand that, but that isn't what you said in your first note.

>

> He also told me that my RA would NEVER remit. Mind you this is after

> him, another doctor and a physical therapist ouuued and ahhhhed over my

> " amazing " progress. It was actually kinda funny, it was the PT who used

> the word amazing. Right after that, Seigel pulled them out of the room

> and when they came back they were much more somber. No more " amazings " ,

> hell, almost no more smiles. He shut them up.

Well, hopefully you are right with your treatment plan and he is wrong. I

suspect from his viewpoint he was concerned about your condition and was afraid

that you would let yourself get worse, despite what he probably considered a

temporary recovery. Remember, this disease waxes and wanes for all of us. As

Geoff says, it may go to sleep, but it is always there. I suspect that was his

concern.

Despite my arguments with me, he has treated me with respect and concern and has

has always answered my emails, something novel that I can't say I have

experienced with many other doctors. But then again, patient/doctor

relationships can differ based on personalities. I recall there is a member of

the list here who thinks only the highest of Dr. Kempf, so obviously she has had

different experiences than you and I.

Mark

[Guest guest]

I have a friend who was severely affected by RA ( she was 17 when she first

got it) She has had shoulder replacement and her hips were pretty much

affected also .

Since starting mtx 10 years ago she has done great and has very little pain

now. The only thing I have heard her even comment about has been one elbow.

She feels great on it, she teaches and is around lots of germs but has

remained very healthy. She does have frequent blood tests and these also

have not shown any problems.

Just another side of the issue.

leslie

At 10:06 AM 2/2/00 -0500, you wrote:

>From: " Donna SAPP " <DONNA_SAPP@...>

>

>I have noticed that in the Arthritis books and on this websit some people

say " stay away from methrotrex " ? Am I hearing this correctly? I have

noticed that some people take it. What exactly does this medication do and

are some of you taking it with the AP to get over the hill? Sorry I'm so

ignorant in these medications. Thanks.

>

>Donna Sapp

>in the South

>

>

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

[Guest guest]

Well ok, I confess that other member is me, and I guess I should tell

you I've dropped him as my dr. I found one closer and didn't feel like I

was able to get the attention I needed from so far away. Also, after

listening to this list for so many months I realized there was alot not

addressed on my visit there and never followed up on in the time after.

Hopefully this new rheum will jump start this process for me and I think

I'm going to this appt. better prepared thanks to all of you. T.