remicade

[Guest guest]

Hi Betty,

I agree and thought you said this very well. We are a great support

group and the info here is better than all the others. Just me from

Ohio. Yeah getting tired of posting now Lucky You

[Guest guest]

I must confess, Doug's post depressed me. I went to bed feeling

that what I was doing (AP 2 months) was futile, that I would never

get better and would probably continue to deteriorate until I ended

up in a wheelchair.

It is easy to see why just one message of doom is enough to lose all

hope. When we are housebound, in constant pain and depressed, we

feel incredibly vulnerable and it doesn't take much to bring us

down.

I am sorry that AP didn't work for Doug. Maybe he didn't give it

long enough....who knows. There is no guarantee it will work for

everyone. But for those of us who have decided to put our faith in

this treatment, negative posts like his have no place here. This is

a SUPPORT site.

I am grateful for the many messages from members who have had

success with AP. These people know the absolute joy of getting

their lives back and want to share it with others.

Let's face it....without hope we have nothing!

I will continue to have faith in AP because the alternatives are

unthinkable.

Lindy

> > > Biotech Company Says It Has Improved 2 Drugs

> > > By ANDREW POLLACK (NYT)

> > > Applied Molecular Evolution has developed what it says are

> improved

> > versions

> > > of Remicade for rheumatoid arthritis and Rituxan for non-

> Hodgkin's

> > lymphoma.

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

In a message dated 2/12/2003 1:41:07 PM Eastern Standard Time,

kronahp@... writes:

> in fact much less than half of us will glean any benefit

Doug..how could this estimate possibly be known? In the group of those who

stick it out with or without the other meds there is no one keeping track.

hope u are well.

rachael

[Guest guest]

In a message dated 2/12/03 10:25:00 AM, harbar@... writes:

<< Doug's post was indeed a negative message to all of us on AP. Upon

reading all of the above posts, Doug has really brought us all

together and we are closer than ever. This is certainly a time when

a negative turned into a real positive. >>

I do not understand the " uproar " whenever someone comes on and says that AP

did not work for them, or if someone comes on who is skeptical.

So what?

AP is a somewhat controversial medical treatment, nothing more nothing less.

It is not a religion or a political party.

I have high hopes that AP will help me some day, but I would not be offended

if it did, and someone bad mouthed it.

IT " S " JUST " A MEDICAL TREATMENT. The way people get so emotional over it

scares me.

It's almost like they doubt it themselves, and there's no reason to do this

if it is working for you. Can you imagine people getting this emotional over

other medical procedures?

This is not the hill to die on, people have different experiences and

different opinions.

I do apologize if I offended anyone.

My purpose was not to do so, but rather to get people to lighten up a bit!

Don't be so defensive.. if it is working for you, just sit back and enjoy the

results. Those who are skeptical are losing a lot by being so closed minded...

Now, have a pain-free day!

Pris

[Guest guest]

I am so sorry some people have not done as well as I have. Who knows why

one person goes into complete remission in 6 months...others take three or

four years. I wish everyone could be as lucky as I am. Two years on AP and

when I open my medicine cabinet I see one bottle of Minocin, one bottle of

vitamins, some vitamin E, Vitamin c, some calcium tabs and my acidipholis. A

big change from several years ago when I looked like I owned a small

pharmacy.!!!! (and still didnt feel well .)

I do think this has the potential of helping EVERYONE, maybe not into

full remission for all of us, but at least to the point where our meds are

at a minimum and we can function with just minor aches and pains.

Please, please dont throw in the towel because it hasnt worked as well as

expected. You may be the one who needs the treatment " tweaked " a bit or a

change of med. This is the only treatment with so few side effects for so

much gain. In the long run we cannot afford to give up so quickly. You have

only one body so think long and hard before deciding what to use.

It is interesting but MY doctor wont use remicade because it has been

linked to MS. He is not sure if it might also be cummulative (the longer you

are on it the larger chance you have to get this disease). He says it is bad

enough to come to him with RA.... he would feel terrible if he gave something

that gave you MS.

Of course you might be the one that has no problem at all with this med, but

he wont take that chance with his patients.

[Guest guest]

This is an AP group. My opinion and experience that in some cases the AP

does not work. Because it is very slow in some cases taking something else

in the line of conventional may help the patient sustain until the AP kicks

in. l see nothing wrong with this. Most people with RA have severe pain

and if something else helps with that pain until the AP works who are we to

say they are wrong. That decision is left up to the patient with their

doctors.This is not a medicl group and we do not have the authority to give

out medical information. We do the best we can. Nobody in this group has

ever blamed anyone for their problems, we only express our own experiences.

Four people in a few months talking about drugs other than AP does not

constitute a problem especially with the size of this group. Sorry you feel

that way, but please let the people make their own choices . lt is their

bodies and they know better then we how they

rheumatic Remicade

> Hello Doug and everybody else. I have, what may seem like, a stupid

> question. Three or four people have posted over the last few months that

> this group only supports antibiotic therapy and that they are quite upset

> about it. What I don't understand is that when I signed up with this

group,

> I signed up because the description said that this was a group supporting

> antibiotic therapy. I had just started AP and was thrilled to see a group

> informing new people about this subject and supporting those that had

> already started AP therapy. I would have been both surprised and confused

if

> when I came to this group, I saw bunches of posts supporting Mtx and

> Remicade etc.. Why? because I signed up for an Antibiotic Support group.

> I sympathize with those that AP has not worked for or if they were not

able

> to try it for long enough but this is supposed to be a support group about

> Ap therapy. There are many other groups out there for other drugs and it

> just makes sense to me to post there if you want support for those

specific

> medications. I wouldn't go to a Remicade group and bust on them because I

> think they should be supporting antibiotic therapy! They are there for

> Remicade support and if that's not what I'm interested in, I would go to a

> group supporting my personal choice of treatment for my RA. It doesn't

make

> sense for me to say to them, " Remicade didn't work for me and it's all

your

> fault for suggesting I try it. Now I have damage because of you. " Our

> group shares experiences, our struggles, and victories with antibiotic

> therapy. The protocols are listed as guides for you to take to your

doctor

> should they need some guidance. Nobody here prescribes medications and

> forces group members to take what " we " say and go do it. In the end, your

> doctor decides what to prescribe any way! WE are ALL responsible for

> ourselves, what we take, how we take it, and what we decide not to take.

It

> has been suggested many times on this board to take a Dmard and

> anti-inflammatory medication when waiting for AP to work. Why? because

this

> prevents damage from happening. If a person did this and still sustains

> damage, how can you blame the Ap therapy? You don't hear the person say

> that the anti-inflammatory med. or the other Dmard (taken until Ap kicked

> in) must have failed them. If your doc put you on just antibiotics and

> nothing else, damage can absolutely happen. That's why a good doctor is

> suggested, that can closely monitor you and is familiar with the protocol.

> Can you really feel justified blaming a support group on your computer,

for

> making your personal health decisions? I don't mean this post in a mean

way

> but I just don't understand that way of thinking. I receive Remicade and

> Enbrel emails all the time. If I made a personal choice (with my doctor)

to

> take Enbrel based on a group saying that it has really helped them, can I

> blame the group if it doesn't help me. I truly feel empathy for those that

> the AP has not helped just like I feel empathy for those that other drugs

> have not helped. Reguardless of what has or hasn't helped me, I know that

I

> and my doctor are responsible for making decisions about my health, and

the

> greatest responsibility always falls on my shoulders, about 99%! =0)

>

> *Roseanne*

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

I agree with you Roseanne.

While Doug is entitled to his opinion, as negative as it may be, I

just don't think this support group is the place for such comments.

We are here primrily to offer guidance and information to anyone

considering antibiotic therapy and support if they decide to go

ahead with it. It is unfair of Doug to blast other people for what

amounts to his own decision to use AP.

I don't deny that orthodox, more toxic drugs have their role to

play. I am taking the precaution of remaining on Plaquenil and

Celebrex while I try Minocin. Only if I show considerable

improvement will I reduce these. Keeping the inflammation under

control is paramount in reducing the risks of joint damage.

Lindy

> Hello Doug and everybody else. I have, what may seem like, a

stupid

> question. Three or four people have posted over the last few

months that

> this group only supports antibiotic therapy and that they are

quite upset

> about it. What I don't understand is that when I signed up with

this group,

> I signed up because the description said that this was a group

supporting

> antibiotic therapy. I had just started AP and was thrilled to see

a group

> informing new people about this subject and supporting those that

had

> already started AP therapy. I would have been both surprised and

confused if

> when I came to this group, I saw bunches of posts supporting Mtx

and

> Remicade etc.. Why? because I signed up for an Antibiotic

Support group.

> I sympathize with those that AP has not worked for or if they were

not able

> to try it for long enough but this is supposed to be a support

group about

> Ap therapy. There are many other groups out there for other drugs

and it

> just makes sense to me to post there if you want support for those

specific

> medications. I wouldn't go to a Remicade group and bust on them

because I

> think they should be supporting antibiotic therapy! They are

there for

> Remicade support and if that's not what I'm interested in, I would

go to a

> group supporting my personal choice of treatment for my RA. It

doesn't make

> sense for me to say to them, " Remicade didn't work for me and it's

all your

> fault for suggesting I try it. Now I have damage because of

you. " Our

> group shares experiences, our struggles, and victories with

antibiotic

> therapy. The protocols are listed as guides for you to take to

your doctor

> should they need some guidance. Nobody here prescribes

medications and

> forces group members to take what " we " say and go do it. In the

end, your

> doctor decides what to prescribe any way! WE are ALL responsible

for

> ourselves, what we take, how we take it, and what we decide not to

take. It

> has been suggested many times on this board to take a Dmard and

> anti-inflammatory medication when waiting for AP to work. Why?

because this

> prevents damage from happening. If a person did this and still

sustains

> damage, how can you blame the Ap therapy? You don't hear the

person say

> that the anti-inflammatory med. or the other Dmard (taken until Ap

kicked

> in) must have failed them. If your doc put you on just antibiotics

and

> nothing else, damage can absolutely happen. That's why a good

doctor is

> suggested, that can closely monitor you and is familiar with the

protocol.

> Can you really feel justified blaming a support group on your

computer, for

> making your personal health decisions? I don't mean this post in

a mean way

> but I just don't understand that way of thinking. I receive

Remicade and

> Enbrel emails all the time. If I made a personal choice (with my

doctor) to

> take Enbrel based on a group saying that it has really helped

them, can I

> blame the group if it doesn't help me. I truly feel empathy for

those that

> the AP has not helped just like I feel empathy for those that

other drugs

> have not helped. Reguardless of what has or hasn't helped me, I

know that I

> and my doctor are responsible for making decisions about my

health, and the

> greatest responsibility always falls on my shoulders, about

99%! =0)

>

> *Roseanne*

[Guest guest]

> Hi Doug,

I'm sorry this treatment hasn't worked for you so far. That being

said, it IS working for others here, inclucing me. Could be it

doesn't work for everyone, dunno. Could be YOU didn't make the

necessary tweaks to get the max benefits out of this therapy, dunno.

In the beginning, I thought all I had to do was take acidophilus and

minocin properly and all would fall into place. Ha! I used to believe

in Santa Claus, too! This takes lots of detective work ON OUR PART

to keep that ball running along in the right direction.

I hit a brick wall after one year and HAD to look for the cause. I

didn't go running off in the direction of the fast and easy

alternative. I kept reading till I thought my eyeballs would fall out

and corresponded with others that went this route before me. I tried

different avenues with this treatment and feel I may be on the right

track, finally. Only time will tell.

You said: I stopped participating in this forum

> about four months ago because folks here seemed so stuck on

> antibiotic therapy that they often criticize those of us who are

not

> helped by it.

Well, this IS a support group for antibiotic therapy! What would you

have us talk about here, the wonders of meth or remicade? I'm sure

there are other sites that cover that very thing, sponsored by the

manufacturers of these drugs.

Thousands have gone the AP route before us and it's our choice to

follow in their footsteps to wellness. Smart bunch here and

elsewhere doing AP. We all learn from one another and are here to

help someone when they need support and collectively brainstorm to

help them tweak their treatment whenever necessary. From time to time

we may bicker about this and that just like a family. But, like a

family, we get over it and get on with it. All the while, all of us

are headed in the same direction, to wellness!

You said: My family Dr. allowed me to try it and prescribed the

> necessary treatment. After nine months he gave up and referred me

to

> a Rheumatologist who put me on Sulfazaladine and MTX.

THIS may have been part of your problem from the get go. If I had

stayed with my ex family doctor, and had him partner with me in this

treatment, I'm sure I would have failed, too! I searched for a AP

doc EXPERIENCED in this treatment to reap the maximum benefits. I

had to travel to another state but figured this was well worth it to

save my life. Some family doctor's are great with AP and some

aren't.

The difference between your doctors and mine is mine doesn't throw in

the towel when things don't go his way. He and I brainstorm, compare

notes and ideas, then get on with it. The trick is to NOT have a

negative attitude but to try different approaches to this treatment.

If I can't get in through the front door with this therapy, I will go

around to the back door and then to every window in the building to

access wellness. I will leave NO stone unturned, with the help of

the fine folks here that have " been there and done that " before me.

I recently posted on another site about a common denominator between

cancer patients, all terminal, that survived!! They all had the same

positive attitude and I believe that's what kept them going to

achieve remission. One HAS to believe in order to ACHIEVE! Believing

isn't enough, though! One has to work hard at finding their way

through the maze of roadblocks that pop up from time to time with

this treatment. Your pcp gave up and gave in.

I would have recommended you see an experienced AP doctor with an

excellent track record to help you figure out what your next steps

with AP should have been. It still isn't too late to do that. I hope

you at least think about that and give it a try. Never know, you may

find another doctor is just the ticket.

You said: Having said all this, I strongly advise all of you to stop

offering

> advice to people in this forum regarding what drugs are best for

> them.

We are all patients with a common denominator and don't pretend to be

doctors. We offer advice and others are not forced to follow it.

We're all adults here and make out own choices in our treatment, one

way or another. Please don't blame anyone here for the choices you

chose to follow.

I'm ever so grateful for every other patient here and for the time

they have taken to give me advice they feel may be of benifit to me.

I've taken the time here today, even though I'm so hungry I could

woof down a plate of anything, to skip breakfast so I can give you

some of my best advice.... Get a good AP doc for another opinion that

can make all the difference in your life, LONG TERM.

I know some patients stay on pred or meth till their antibiotic has a

good chance to get a toe hold BEFORE slooooooooooowly weaning from

these other drugs. Perhaps that's a good option for you. Your life,

your choice.

Whatever you choose to do long term, I wish you the best of health,

as does everyone here. We really want you to be well no matter what

road you choose to take.

Hugs,

Betty

If it hadn't been for the good advice of others, here and elsewhere,

I wouldn't even know about all the wonderful drugs or supplements

that could be of great benefit to me. Doctors don't always think of

everything, even good AP docs.

> It's kind of funny, really. I stopped participating in this forum

> about four months ago because folks here seemed so stuck on

> antibiotic therapy that they often criticize those of us who are

not

> helped by it. Just for fun, and a bit out of curiosity, I logged

in

> today and gues what I found - more of the same!

>

> The fact is that antibiotic therapy does not work for everyone. I

> would love to see statistics on it's efficacy for something like

what

> I have - Psoriatic Arthritis. In my case, it was 100% useless. I

> tried it for almost a year while my arthritis kept getting worse

and

> worse. My family Dr. allowed me to try it and prescribed the

> necessary treatment. After nine months he gave up and referred me

to

> a Rheumatologist who put me on Sulfazaladine and MTX. Within a

> matter of three weeks I went from the wheelchair to walking around

> the block every day. He kept me on MTX for a few months, then we

> switched to Remicade because it is safer and more effective for me.

>

> For me, MTX, Sulfazaladine, and yes, Remicade have all been

> miracles. This is true for many others as well.

>

> Let's not forget that any drug, including antibiotics, effect many

> aspects of your metabolism - some of which are not at all

> understood. Since each of us has a unique metabolism, it is safe

to

> say that each of us also has an ideal set of drugs that work best.

> What works for you may do nothing for me. What is toxic for me may

> not be for you.

>

> Having said all this, I strongly advise all of you to stop offering

> advice to people in this forum regarding what drugs are best for

> them. I took your advice and it nearly cost me my mobility. I can

> only imagine how many others you have misled by your unqualified

> advice and are now unable to walk because of it.

>

> Farewell,

> Doug

>

>

>

>

>

> > > Biotech Company Says It Has Improved 2 Drugs

> > > By ANDREW POLLACK (NYT)

> > > Applied Molecular Evolution has developed what it says are

> improved

> > versions

> > > of Remicade for rheumatoid arthritis and Rituxan for non-

> Hodgkin's

> > lymphoma.

[Guest guest]

Sorry that l did not read your posts Doug. How long were you on the AP? Did

you get any kind of benefit from it at all even some pain relief? Ginger

Re: rheumatic Re: Remicade

> Hi Doug,

> So sorry it did not work for you, But as a 15 yr. person on this

> treatment you were not on it long enough to even say, and you may have

needed

> to change meds and add to it some DMARDS but as you say everyone is

different

> and there are always some who some things don't work for. I have been

there

> and done that ,the way you are, and most don;t do that good your way

either

> sooooo don't be to fast to judge this treatment after 9 months, as when I

> started about 9 months I was worse too and had to alter my meds alot to

keep

> on but so glad I did not give up I hope what you have decided works for

you

> and continues, but THIS is a safe treatment and except for afew problems

most

> who get through the bad times have little trouble, I was in total

remission

> for 12 yrs and still am from the RA but had a Discoid Lupus flare

recently,

> so I had to go on some big shots of steriods to get me on track, but I

will

> be fine and altering my antibiotics again to adjust to this. This is life

but

> It does work for most sorry it did not for you/ Just My View from

Ohio

>

>

>

[Guest guest]

Very well put, Roseanne. Good points, all of them.

Ellen

rheumatic Remicade

Hello Doug and everybody else. I have, what may seem like, a stupid

question. Three or four people have posted over the last few months that

this group only supports antibiotic therapy and that they are quite upset

about it. What I don't understand is that when I signed up with this group,

I signed up because the description said that this was a group supporting

antibiotic therapy. I had just started AP and was thrilled to see a group

informing new people about this subject and supporting those that had

already started AP therapy. I would have been both surprised and confused if

when I came to this group, I saw bunches of posts supporting Mtx and

Remicade etc.. Why? because I signed up for an Antibiotic Support group.

I sympathize with those that AP has not worked for or if they were not able

to try it for long enough but this is supposed to be a support group about

Ap therapy. There are many other groups out there for other drugs and it

just makes sense to me to post there if you want support for those specific

medications. I wouldn't go to a Remicade group and bust on them because I

think they should be supporting antibiotic therapy! They are there for

Remicade support and if that's not what I'm interested in, I would go to a

group supporting my personal choice of treatment for my RA. It doesn't make

sense for me to say to them, " Remicade didn't work for me and it's all your

fault for suggesting I try it. Now I have damage because of you. " Our

group shares experiences, our struggles, and victories with antibiotic

therapy. The protocols are listed as guides for you to take to your doctor

should they need some guidance. Nobody here prescribes medications and

forces group members to take what " we " say and go do it. In the end, your

doctor decides what to prescribe any way! WE are ALL responsible for

ourselves, what we take, how we take it, and what we decide not to take. It

has been suggested many times on this board to take a Dmard and

anti-inflammatory medication when waiting for AP to work. Why? because this

prevents damage from happening. If a person did this and still sustains

damage, how can you blame the Ap therapy? You don't hear the person say

that the anti-inflammatory med. or the other Dmard (taken until Ap kicked

in) must have failed them. If your doc put you on just antibiotics and

nothing else, damage can absolutely happen. That's why a good doctor is

suggested, that can closely monitor you and is familiar with the protocol.

Can you really feel justified blaming a support group on your computer, for

making your personal health decisions? I don't mean this post in a mean way

but I just don't understand that way of thinking. I receive Remicade and

Enbrel emails all the time. If I made a personal choice (with my doctor) to

take Enbrel based on a group saying that it has really helped them, can I

blame the group if it doesn't help me. I truly feel empathy for those that

the AP has not helped just like I feel empathy for those that other drugs

have not helped. Reguardless of what has or hasn't helped me, I know that I

and my doctor are responsible for making decisions about my health, and the

greatest responsibility always falls on my shoulders, about 99%! =0)

*Roseanne*

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

No one here is saying, I don't think, that Remicaid, MTX, steroids,

etc., aren't called for under certain conditions. My daughter just

came off five straight days of I.V. solumedrol because she was

having a multiple sclerosis exacerbation which was affecting her

vision. We're hoping that in the long run the antibiotics will help

her M.S., but in the meantime we're willing to go the conventional

drug route when we have to. Conventional treatment IS

sometimes necessary as a stopgap.

I think the point everyone was trying to make is that Doug seemed

to be bad-mouthing the AP, and we who believe in it wanted to point

out that maybe he hadn't tried it long enough. As someone said,

this is an AP support group, so to hear promotions of it shouldn't

be surprising.

Ellen

rheumatic Remicade

> Hello Doug and everybody else. I have, what may seem like, a stupid

> question. Three or four people have posted over the last few months that

> this group only supports antibiotic therapy and that they are quite upset

> about it. What I don't understand is that when I signed up with this

group,

> I signed up because the description said that this was a group supporting

> antibiotic therapy. I had just started AP and was thrilled to see a group

> informing new people about this subject and supporting those that had

> already started AP therapy. I would have been both surprised and confused

if

> when I came to this group, I saw bunches of posts supporting Mtx and

> Remicade etc.. Why? because I signed up for an Antibiotic Support group.

> I sympathize with those that AP has not worked for or if they were not

able

> to try it for long enough but this is supposed to be a support group about

> Ap therapy. There are many other groups out there for other drugs and it

> just makes sense to me to post there if you want support for those

specific

> medications. I wouldn't go to a Remicade group and bust on them because I

> think they should be supporting antibiotic therapy! They are there for

> Remicade support and if that's not what I'm interested in, I would go to a

> group supporting my personal choice of treatment for my RA. It doesn't

make

> sense for me to say to them, " Remicade didn't work for me and it's all

your

> fault for suggesting I try it. Now I have damage because of you. " Our

> group shares experiences, our struggles, and victories with antibiotic

> therapy. The protocols are listed as guides for you to take to your

doctor

> should they need some guidance. Nobody here prescribes medications and

> forces group members to take what " we " say and go do it. In the end, your

> doctor decides what to prescribe any way! WE are ALL responsible for

> ourselves, what we take, how we take it, and what we decide not to take.

It

> has been suggested many times on this board to take a Dmard and

> anti-inflammatory medication when waiting for AP to work. Why? because

this

> prevents damage from happening. If a person did this and still sustains

> damage, how can you blame the Ap therapy? You don't hear the person say

> that the anti-inflammatory med. or the other Dmard (taken until Ap kicked

> in) must have failed them. If your doc put you on just antibiotics and

> nothing else, damage can absolutely happen. That's why a good doctor is

> suggested, that can closely monitor you and is familiar with the protocol.

> Can you really feel justified blaming a support group on your computer,

for

> making your personal health decisions? I don't mean this post in a mean

way

> but I just don't understand that way of thinking. I receive Remicade and

> Enbrel emails all the time. If I made a personal choice (with my doctor)

to

> take Enbrel based on a group saying that it has really helped them, can I

> blame the group if it doesn't help me. I truly feel empathy for those that

> the AP has not helped just like I feel empathy for those that other drugs

> have not helped. Reguardless of what has or hasn't helped me, I know that

I

> and my doctor are responsible for making decisions about my health, and

the

> greatest responsibility always falls on my shoulders, about 99%! =0)

>

> *Roseanne*

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Doesn't appear that we're going to hear back from Doug. He dropped

his little missile and skedaddled, leaving us to squabble with each

other! But here's his original post:

It's kind of funny, really. I stopped participating in this forum

about four months ago because folks here seemed so stuck on

antibiotic therapy that they often criticize those of us who are not

helped by it. Just for fun, and a bit out of curiosity, I logged in

today and gues what I found - more of the same!

The fact is that antibiotic therapy does not work for everyone. I

would love to see statistics on it's efficacy for something like what

I have - Psoriatic Arthritis. In my case, it was 100% useless. I

tried it for almost a year while my arthritis kept getting worse and

worse. My family Dr. allowed me to try it and prescribed the

necessary treatment. After nine months he gave up and referred me to

a Rheumatologist who put me on Sulfazaladine and MTX. Within a

matter of three weeks I went from the wheelchair to walking around

the block every day. He kept me on MTX for a few months, then we

switched to Remicade because it is safer and more effective for me.

For me, MTX, Sulfazaladine, and yes, Remicade have all been

miracles. This is true for many others as well.

Let's not forget that any drug, including antibiotics, effect many

aspects of your metabolism - some of which are not at all

understood. Since each of us has a unique metabolism, it is safe to

say that each of us also has an ideal set of drugs that work best.

What works for you may do nothing for me. What is toxic for me may

not be for you.

Having said all this, I strongly advise all of you to stop offering

advice to people in this forum regarding what drugs are best for

them. I took your advice and it nearly cost me my mobility. I can

only imagine how many others you have misled by your unqualified

advice and are now unable to walk because of it.

Farewell,

Doug

Re: rheumatic Re: Remicade

> Hi Doug,

> So sorry it did not work for you, But as a 15 yr. person on this

> treatment you were not on it long enough to even say, and you may have

needed

> to change meds and add to it some DMARDS but as you say everyone is

different

> and there are always some who some things don't work for. I have been

there

> and done that ,the way you are, and most don;t do that good your way

either

> sooooo don't be to fast to judge this treatment after 9 months, as when I

> started about 9 months I was worse too and had to alter my meds alot to

keep

> on but so glad I did not give up I hope what you have decided works for

you

> and continues, but THIS is a safe treatment and except for afew problems

most

> who get through the bad times have little trouble, I was in total

remission

> for 12 yrs and still am from the RA but had a Discoid Lupus flare

recently,

> so I had to go on some big shots of steriods to get me on track, but I

will

> be fine and altering my antibiotics again to adjust to this. This is life

but

> It does work for most sorry it did not for you/ Just My View from

Ohio

>

>

>

[Guest guest]

Dear Lindy,

Please, please don't be depressed. Concentrate on the posts here

from Muggy PC, " from Ohio, " Fain, and others. They're

the ones whose stories you have to keep in mind. Two months is

no time at all for the AP, and you will need to keep a firm resolve.

Everyone will be pulling for you.

Ellen

rheumatic Re: Remicade

I must confess, Doug's post depressed me. I went to bed feeling

that what I was doing (AP 2 months) was futile, that I would never

get better and would probably continue to deteriorate until I ended

up in a wheelchair.

It is easy to see why just one message of doom is enough to lose all

hope. When we are housebound, in constant pain and depressed, we

feel incredibly vulnerable and it doesn't take much to bring us

down.

I am sorry that AP didn't work for Doug. Maybe he didn't give it

long enough....who knows. There is no guarantee it will work for

everyone. But for those of us who have decided to put our faith in

this treatment, negative posts like his have no place here. This is

a SUPPORT site.

I am grateful for the many messages from members who have had

success with AP. These people know the absolute joy of getting

their lives back and want to share it with others.

Let's face it....without hope we have nothing!

I will continue to have faith in AP because the alternatives are

unthinkable.

Lindy

> > > Biotech Company Says It Has Improved 2 Drugs

> > > By ANDREW POLLACK (NYT)

> > > Applied Molecular Evolution has developed what it says are

> improved

> > versions

> > > of Remicade for rheumatoid arthritis and Rituxan for non-

> Hodgkin's

> > lymphoma.

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Hi Everyone,

Doug's post was indeed a negative message to all of us on AP. Upon

reading all of the above posts, Doug has really brought us all

together and we are closer than ever. This is certainly a time when

a negative turned into a real positive.

We are here as a support group for each other. We are here for the

person just looking into AP, and for those that need, want or

desire a support group environment.

I would just like to take this opportunity to thank each and every

one of you that takes the time to give your support through your

experiences.

We need each other.

Love, Barb

[Guest guest]

Hi Everyone.

I received a very nice reply from Doug on my post about AP and I wish

him well and all who want to do whatever for their health, after all most

people on here are smart enough to read and learn and think for themselves. I

am not being unkind or smart it is true and all one can do is tell their own

ideas and experience about AP. It appears if some people disagree others

still get upset about it WHY?? No two people are ever going to agree on

everything, but some people that are new don't understand, which we have all

been there at one time or another will argue I am sure with good intentions

what some of us know differently from many years on it. Well that is fine but

that does not mean we will agree with you either, soooo agree that we are all

different and use common sense with any treatment for any disease and take

responsibilty for whatever you choose to do. Most on here just tell what they

have been through and how it helped them and give their support and well

wishes. None of us have the time to really change anyones mind on anything we

are not that Powerful just a Good Support Group Just My View from Ohio

[Guest guest]

Hi Gang! Geoff here.

(I intentionally left the poster's name out as this is not a response to,

nor about, the poster. This is a comment on the " concept " the poster so

elegantly related and I appreciate the way in which it was put forth.)

Many are addressing this and one " side " was summed up well by this note:

" I do not understand the " uproar " whenever

someone comes on and says that AP

did not work for them, or if someone comes

on who is skeptical.

So what?

AP is a somewhat controversial medical

treatment, nothing more nothing less.

It is not a religion or a political party.

I have high hopes that AP will help me some

day, but I would not be offended

if it did, and someone bad mouthed it.

IT " S " JUST " A MEDICAL TREATMENT. The way

people get so emotional over it scares me. " "

One of the most disturbing things about human aging is history. History

does not disappear until the generation that lived it is two generations

past. Before that it fights for recognition and screams out its value; the

wise listen, the foolish do not. This very ugly fact, that we forget

history so easily, and embrace its exit, dooms us in many ways, such as

reliving what should be obvious mistakes.

On point in this case is the fact that as recently as yesterday this list

sees notes from people denied access to this treatment. And this list is

rife with members who, active on occasion, share their horrific experiences

from much farther down the road than those who have recently been diagnosed

with one or more of these diseases. While it is commendable that people can

find this information and come to a place like this when diagnosed only days

earlier, the history here is the value of this list. Generally speaking,

those recently diagnosed bring need, not contribution; but there is a value

in " need " and that value they do bring. Thus old and young alike benefit,

regardless of age.

I've been here awhile, but I'm not exactly what *I* would consider to be an

" old timer. " I joined the list in Q1-98. When I joined there was still a

physician willing to donate his time to help the list. We called him " Doc

Choc " and shared some great laughs over " Gimp Alerts. " The stories were

ugly: people with hip replacements, knee replacements, finger joint

replacements, amputations, a person who's relative died unable to access the

therapy who lived less than 50 miles from me. All of these people, not just

one or two -- there must have been a dozen with metal hips alone, had this

in common:

They had all followed conventional treatment and had all suffered

the known, documented, and virtually never talked about consequences

of those conventional treatments leading to their ultimate

mutilation.

They also had this in common:

They did not want anyone else, anywhere, whether they knew them

or not, to have to go through that which they went through.

So now comes today. Instead of people who can't find a doctor willing to

help them; instead of people having to beg and lie to their doctors to

access the therapy; instead of people buying veterinary medicines for

personal medication and treatment; instead of people coming to the therapy

as a last resort, we have people coming to this list who are looking to this

therapy as a primary treatment. Computers are ubiquitous.

What followed is predictable, understandable, and I think worthwhile. The

Web site, www.rheumatic.org, is rife with information -- but it often, or

more correctly, usually, goes unread. The archives are full of answers to

nearly every question asked, yet they go unread (and recently are becoming

extremely difficult if not impossible to research for information posted

over the last several months.)

People follow the path of least resistance and just ask the list, " What

about this or that? " And they get absolute unvarnished answers from people

who have done all of the " this and that " things for many, many years,

sometimes more years than the person who asked the question has even been

alive. It's not particularly uncommon to see someone under 30 come to the

list with questions which are answered by people who have been fighting the

disease for 40 years!

Then the poster is in shock, and disbelief, and as is typical in the course

of human events feels compelled to prove it for themselves. What follows is

ageless. Juvenile rebellion: " If this is so good, why isn't it

everywhere? " ; and " If you know so much, why are you here? " followed by

Parental hue and cry: " Listen! I've been there! I've done that! Don't go

down that road! "

The opening statement, so wonderfully penned, the emotions it reflects, and

the judgment it lacks, reveals the common childish immaturity which lacks an

appreciation and understanding of history and the gravity of these diseases

and treatments commonly used. It reflects a lack of understanding of the

gravity of damage and mutilation which is known to follow on the heels of

common therapies after years of participation. Having your body wrenched

asunder, your legs sawn from your torso, your hip divided and having metal

put in its place... this is something to fear, this is something worthy of

being scared to encounter.

I will never forget the post in late '98 by the member who underwent a hip

replacement under *local* anesthesia. You just haven't lived until you've

heard and felt your body being sawn in pieces and experienced metal spikes

being pounded into your leg and nailed in place. I've had the nails. I can

skip the rest, thank you.

Expect support here for this therapy. Do not naively expect support against

it from people who have sacrificed their lives and bodies and appendages and

organs to the " other treatments " so routinely recommended and followed by

those whose hue and cry is " show me the studies. " To do so lacks both

self-respect and respect for those who have fallen before you. They, and

you, deserve better.

Real stories by real people who are still alive and don't want others to

live through these things. Not conjecture, not theory -- real life. Make

your choice, then follow it.

Geoff

soli Deo gloria

www.HealingYou.org - Your nonprofit source for remedies and aids in fighting

these diseases, information on weaning from drugs, and nutritional kits for

repairing adrenal damage; 100% volunteer staffed.

[Guest guest]

> Hi Gang! Geoff here.

It reflects a lack of understanding of the

> gravity of damage and mutilation which is known to follow on the

heels of

> common therapies after years of participation.

I think this was probably true from back in the days of Nsaids only or

even before that. I don't think this is so much the case today, since

the advent of methotrexate and the very recent biologicals. Any

doctor I've spoken to, who has been practicing for any number of

years, considers methotrexate and the more recent drugs to be a

godsend compared to all the damage they saw inflicted during their

earlier years in practice. Now they may well be blissfully unaware of

the advantages of minocycline and it is certainly the right of

everyone here to educate them, but I question whether there is the

same amount of damage today as there used to be. The stats don't seem

to bear that out. That's not to say someone can't have damage from

methotrexate or Enbrel or whatever, but it is much less likely to

happen vs the Nsaid only treatment of past years. I suspect those who

have endured for some 30+ years with the disease, certainly were part

of that group.

Mark

[Guest guest]

>

Pris,

I see your point that people get really defensive about this

treatment, but I have to disagree that everyone should just chill and

not make an issue of it. It is very helpful for me and for others

like me to hear the arguments for the treatment when someone has not

experienced success. When I say like me, I mean that I am still in

the group of those that have been doing the AP for 18 months and

still have not experienced a great relief from pain, and disability.

I keep hanging on and hoping that it is not for nothing. It is

encouraging to me to read the messages from others who took a long

time to experience great results. I just overlook any emotion that

may be implied and get what I need from the message.

Just my two cents worth.

Esther

>

> I do not understand the " uproar " whenever someone comes on and

says that AP

> did not work for them, or if someone comes on who is skeptical.

> So what?

> AP is a somewhat controversial medical treatment, nothing more

nothing less.

> It is not a religion or a political party.

> I have high hopes that AP will help me some day, but I would not be

offended

> if it did, and someone bad mouthed it.

> IT " S " JUST " A MEDICAL TREATMENT. The way people get so emotional

over it

> scares me.

> It's almost like they doubt it themselves, and there's no reason to

do this

> if it is working for you. Can you imagine people getting this

emotional over

> other medical procedures?

> This is not the hill to die on, people have different experiences

and

> different opinions.

> I do apologize if I offended anyone.

> My purpose was not to do so, but rather to get people to lighten up

a bit!

> Don't be so defensive.. if it is working for you, just sit back and

enjoy the

> results. Those who are skeptical are losing a lot by being so

closed minded...

> Now, have a pain-free day!

> Pris

[Guest guest]

> > It reflects a lack of understanding of the

> > gravity of damage and mutilation which is

> > known to follow on the heels of

> > common therapies after years of participation.

>

> I think this was probably true from back in the days of Nsaids only or

> even before that. I don't think this is so much the case today, since

> the advent of methotrexate and the very recent biologicals.

I suspect the people who were blessed with the events below, related her

courtesy www.rxlist.com, would disagree...

--START--

METHOTREXATE

The most frequently reported adverse reactions include ulcerative

stomatitis, leukopenia, nausea, and abdominal distress. Other frequently

reported adverse effects are malaise, undue fatigue, chills and fever,

dizziness and decreased resistance to infection.

Other adverse reactions that have been reported with methotrexate are listed

below by organ system. In the oncology setting, concomitant treatment and

the underlying disease make specific attribution of a reaction to

methotrexate difficult.

Alimentary System: gingivitis, pharyngitis, stomatitis, anorexia, nausea,

vomiting, diarrhea, hematemesis, melena, gastrointestinal ulceration and

bleeding, enteritis, pancreatitis.

Cardiovascular: pericarditis, pericardial effusion, hypotension, and

thromboembolic events (including arterial thrombosis, cerebral thrombosis,

deep vein thrombosis, retinal vein thrombosis, thrombophlebitis, and

pulmonary embolus).

Central Nervous System: headaches, drowsiness, blurred vision. Aphasia,

hemiparesis, paresis and convulsions have also occurred following

administration of methotrexate. Following low doses, there have been

occasional reports of transient subtle cognitive dysfunction, mood

alteration, unusual cranial sensations, leukoencephalopathy, or

encephalopathy.

Infection: There have been case reports of sometimes fatal opportunistic

infections in patients receiving methotrexate therapy for neoplastic and

non-neoplastic diseases. Pneumocystis carinii pneumonia was the most common

infection. Other reported infections included nocardiosis; histoplasmosis,

cryptococcosis, Herpes zoster, H. simplex hepatitis, and disseminated H.

simplex.

Ophthalmic: conjunctivitis, serious visual changes of unknown etiology.

Pulmonary System: interstitial pneumonitis deaths have been reported, and

chronic interstitial obstructive pulmonary disease has occasionally

occurred.

Skin: erythematous rashes, pruritus, urticaria, photosensitivity, pigmentary

changes, alopecia, ecchymosis, telangiectasia, acne, furunculosis, erythema

multiforme, toxic epidermal necrolysis, s- syndrome, skin

necrosis, and exfoliative dermatitis.

Urogenital System: severe nephropathy or renal failure, azotemia, cystitis,

hematuria; defective oogenesis or spermatogenesis, transient oligospermia,

menstrual dysfunction, vaginal discharge and gynecomestia; infertility,

abortion, fetal defects.

Other rarer reactions related to or attributed to the use of methotrexate

such as nodulosis, vasculitis, opportunistic infection, arthralgia/myalgia,

loss of libido/impotence, diabetes, osteoporosis, sudden death, and

reversible lymphomas. Anaphylactoid reactions have been reported.

Adverse Reactions in Double-Blind Rheumatoid Arthritis Studies

The approximate incidences of methotrexate attributed (ie, placebo rate

subtracted) adverse reactions in 12 to 18 week double-blind studies of

patients (n=128) with rheumatoid arthritis treated with low-dose oral (7.5

to 15 mg/week) pulse methotrexate, are listed below. Virtually all of these

patients were on concomitant nonsteroidal anti-inflammatory drugs and some

were also taking low dosages of corticosteroids.

Incidence greater than 10%: Elevated liver function tests 15%,

nausea/vomiting 10%.

Incidence 3% to 10%: Stomatitis, thrombocytopenia, (platelet count less than

100,000/mm3).

Incidence 1% to 3%: Rash/pruritus/dermatitis, diarrhea, alopecia, leukopenia

(WBC less than 3000/mm3), pancytopenia, dizziness.

No pulmonary toxicity was seen in these two trials. Thus, the incidence is

probably less than 2.5% (95% C.L.). Hepatic histology was not examined in

these short-term studies. (See PRECAUTIONS.)

Other less common reactions included decreased hematocrit, headache, upper

respiratory infection, anorexia, arthralgias, chest pain, coughing, dysuria,

eye discomfort, epistaxis, fever, infection, sweating, tinnitus, and vaginal

discharge.

Adverse Reactions in Psoriasis

There are no recent placebo-controlled trials in patients with psoriasis.

There are two literature reports (Roenigk, 1969 and Nyfors, 1978) describing

large series (n=204, 248) of psoriasis patients treated with methotrexate.

Dosages ranged up to 25 mg per week and treatment was administered for up to

four years. With the exception of alopecia, photosensitivity, and " burning

of skin lesions " (each 3% to 10%), the adverse reaction rates in these

reports were very similar to those in the rheumatoid arthritis studies.

--END--

Geoff

soli Deo gloria

www.HealingYou.org - Your nonprofit source for remedies and aids in fighting

these diseases, information on weaning from drugs, and nutritional kits for

repairing adrenal damage; 100% volunteer staffed.

[Guest guest]

> > > It reflects a lack of understanding of the

> > > gravity of damage and mutilation which is

> > > known to follow on the heels of

> > > common therapies after years of participation.

> I suspect the people who were blessed with the events below, related her

> courtesy www.rxlist.com, would disagree...

>

> --START--

> METHOTREXATE

> The most frequently reported adverse reactions include ulcerative

> stomatitis, leukopenia, nausea, and abdominal distress. Other frequently

> reported adverse effects are malaise, undue fatigue, chills and fever,

> dizziness and decreased resistance to infection.

As your report goes on to say, the percentages are low. Whereas all

those things can happen, the number of people who have serious

problems are still small. Doesn't mean a hill of beans of course to

those who have the problems, but it was something I took into

consideration before beginning the drug. My doctors suggested that

the incidence of problems was low and the benefit great and so far

they have been correct (in my case). There will no doubt be great

rejoicing in my stupidity, when I come back to report some day that I

now have all those side effects, which you indicated. Just kidding

- sort of.

Mark

[Guest guest]

Hi Mark

All I can say is they came on quickly and there was no turning

back .I ws on MTX for while and not a huge dose( 7.5 to 10weekly) and

still have many many of those symptoms and amstill tring to deal with

them after being off the drug since the beginning of 1998.

Doc did not see it coming either.

Just so you know

Love

Marge

> > > > It reflects a lack of understanding of the

> > > > gravity of damage and mutilation which is

> > > > known to follow on the heels of

> > > > common therapies after years of participation.

>

> > I suspect the people who were blessed with the events below,

related her

> > courtesy www.rxlist.com, would disagree...

> >

> > --START--

> > METHOTREXATE

> > The most frequently reported adverse reactions include ulcerative

> > stomatitis, leukopenia, nausea, and abdominal distress. Other

frequently

> > reported adverse effects are malaise, undue fatigue, chills and

fever,

> > dizziness and decreased resistance to infection.

>

>

> As your report goes on to say, the percentages are low. Whereas all

> those things can happen, the number of people who have serious

> problems are still small. Doesn't mean a hill of beans of course to

> those who have the problems, but it was something I took into

> consideration before beginning the drug. My doctors suggested that

> the incidence of problems was low and the benefit great and so far

> they have been correct (in my case). There will no doubt be great

> rejoicing in my stupidity, when I come back to report some day that

I

> now have all those side effects, which you indicated. Just

kidding

> - sort of.

>

> Mark

[Guest guest]

Hi,

I have had about 5 Remicade treatments since November and my doctor

informed me that the Enbrel is available now I will be giving myself

my first injection in April.

Take care,

June

[Guest guest]

Were you getting any relief from Remicade?

I didn't get any relief from Remicade. Enbrel is doing

a good job for me.

Good Luck,

-

[Guest guest]

> I had my first remicade treatment, ... It's SOOOOOOOO nice.

,

So glad to hear it is working for you. Sounds wonderful.

My new rheumy wants me on MTX for 6 weeks, then add the remicade.

Hope it works as well for me.

Diane in Texas

[Guest guest]

Yeppers, fibro too... if I could only get someone now to help me with the sleep

issues. I am awaiting a ct scan of my head. I've been having horrid headaches,

long before remicade began and high blood pressure all of a sudden, prior ot

remicade also... UGH what a wait

--