Re: Confused ???

December 4, 2003

In a message dated 12/4/03 5:21:17 AM Eastern Standard Time,

r_glazier@... writes:

<< However when i asked about Enbrel instead

he said " no no this is the stuff to take before Enbrel. I should have

asked why but Enbrel seems less harsh. Is it harder on the body than

Metho or is it just cost ??? Anyway any input would be great.

>>

For most Enbrel doesn't cause some of the " harsh " side effects that MTX does.

Hair loss, nausea, etc. I chose Enbrel because I am in child bearing years.

(29) I went to Dr. after Dr. until I finally found one that said to me what I

wanted to hear, which was " I do not put women who want to have babies anytime

soon on MTX. " Yes, it is VERY EXPENSIVE, so if you don't have good insurance or

a lot of money, that could be why the Dr. is suggesting MTX. (Enbrel is over

$1300 a month) I am not a fan of MTX mostly due to my age. If you feel that

MTX is NOT RIGHT for you, there are other options. This IS YOUR CHOICE TO MAKE.

Don't let a Dr. make this choice for you! RESEARCH RESEARCH RESEARCH!

December 4, 2003

In a message dated 12/4/03 5:21:17 AM Eastern Standard Time,

r_glazier@... writes:

<< Alcohol: An " absolute NO " , with regard to MTX. I can't imagine it's a good

idea with Enbrel therapy either, but if anyone " absolutely " insists on

hoisting a few adult beverages every now and now..and then, they'll probably be

a

bit better off taking a Biologic than taking MTX. >>

I have never been told or read in any literature to NOT drink with Enbrel, so

that is a plus with Enbrel versus MTX too. Also, Enbrel was tested along side

of MTX and Enbrel did have fewer serious side effects. The Lymphoma

investigation is still ongoing with Enbrel... nothing proven at this point. I

think you

must be smart... if you have frequent infections, diabetes, are elderly or

have other compromising diseases, do not take the Biologics. If you are healthy

other than the P and PA I think Biologics can make the world of difference

without the YUCK side effects.

December 4, 2003

> Now here is my problem - I

> understand this is a low dose of a Kemo drug - no more drinking and

> blood tests and a liver Biops?? - sounds pretty harsh but willing to

> do it to get rid of pain.

When I was on MTX (for about 3 years, 9/00 to 6/03), I never had a liver

biopsy. I just did regular blood tests (every 6 weeks), and only would have

needed a biopsy if a blood test showed some kind of warning signs. But, it

may be different from doctor to doctor. At least be aware that not every

doctor requires regular biopsies.

Also, I did give up drinking, but at one point after some really horrible stuff

happened I confessed to my doc that I had a few glasses of wine a few days

in a row. She " absolved me of my sins " (well that's what it felt like) and

basically said a glass of wine every now and then would not be a problem. I

was on either 12.5 or 10 mg/wk I think at that time. Now, I'm not saying you

could drink regularly, and whether or not you could drink at all may be

dependent on your MTX dose and blood tests and such... I'm just sharing my

personal experience...

****[Editor's Note: Understood (Wink wink, nudge nudge...) Regarding alcohol, I

kinda suspect the docs/pharmacists/literature attempt to scare us sufficiently

so as to keeping it top of mind. What I mean is, you know, (drink) about the

same level as pregnant women do. A few glasses of wine, a few beers (both of

which seem to me to be more benign than other choices) at most, infrequently.

D.]

> However when i asked about Enbrel instead

> he said " no no this is the stuff to take before Enbrel. I should have

> asked why but Enbrel seems less harsh. Is it harder on the body than

> Metho or is it just cost ??? Anyway any input would be great.

As others mentioned, I think MTX is given first because it's much much

cheaper than Enbrel (and just about anything else) and because it's older and

we have 30 years of experience with the drug. In order for your insurance

company to cover Enbrel, they may require that you try MTX first.

I had lots of success with MTX. It was great, really. If Enbrel wasn't around

I

wouldn't be in a horrible state. However, I did suffer the usual nasty side

effects. In comparison to the PA pain, they were worth it. In comparison to

Enbrel though, where I have essentially no side effects of note, Enbrel is a

thousand times better. So... if your doc insists on MTX as a start, and you

like and trust your doc, it wouldn't be the end of the world. On the other

hand, if you are willing to do the research, you may find a doc who you like

and trust who will get you on Enbrel from the start. (But first contact your

insurance company and see if they will cover Enbrel right away. For me, I

had to get a long sob story letter from my doc listing all my MTX side effects

before they'd cover me for the more expensive Enbrel.)

***[Editor's Note: The above is very well-reasoned. Were it me, I would do the

following: Start the methotrexate, and give it 6 months; it's possible you won't

be bothered by any side effects (I've never had any, in almost 25 years, on

doses as high as 25 mg. a week). This would keep Enrel in reserve; you could

certainly add it to MTX if needed.

D.]

December 5, 2003

I have ben talking to my doctor about going on MTX and I asked him

specifically if I could still drink wine. He said that his rule was 1

glass a day is ok. I know that there is disagreement with that

advice. He also doesn't feel that liver biopsis are required unless

the blood testindicates a problem.

> In a message dated 12/4/03 5:21:17 AM Eastern Standard Time,

> r_glazier@p... writes:

>

> << Alcohol: An " absolute NO " , with regard to MTX. I can't imagine

it's a good

> idea with Enbrel therapy either, but if anyone " absolutely " insists

on

> hoisting a few adult beverages every now and now..and then, they'll

probably be a

> bit better off taking a Biologic than taking MTX. >>

>

> I have never been told or read in any literature to NOT drink with

Enbrel, so

> that is a plus with Enbrel versus MTX too. Also, Enbrel was tested

along side

> of MTX and Enbrel did have fewer serious side effects. The Lymphoma

> investigation is still ongoing with Enbrel... nothing proven at

this point. I think you

> must be smart... if you have frequent infections, diabetes, are

elderly or

> have other compromising diseases, do not take the Biologics. If you

are healthy

> other than the P and PA I think Biologics can make the world of

difference

> without the YUCK side effects.

>

December 6, 2003

In a message dated 12/5/03 7:56:44 PM Eastern Standard Time,

axialthrust@... writes:

<< So... if your doc insists on MTX as a start, and you

like and trust your doc, it wouldn't be the end of the world. >>

I believe if you want the Enbrel and don't want to mess with the MTX

(especially if you are younger in child bearing years) check and see if your

insurance

company covers it. MINE DID without trying MTX. Many more are starting to do

the same. Make sure this is your educated choice, not your Dr.'s.

December 6, 2003

In a message dated 12/5/03 7:56:44 PM Eastern Standard Time,

axialthrust@... writes:

<< This would keep Enrel in reserve; you could certainly add it to MTX if

needed.

D.] >>

OR you could do the reverse. I am on Enbrel and have never been on MTX and

hope to never go on it. It's all your choice! I have a easily upset stomach... I

think MTX would do me in, and I am obsessed with my hair. MTX has a tendency

to thin hair. I am going to remain vain as long as I can. )

[Editor's Note: First, MTX has never thinned my hair, in the 24 or so years I've

taken it. ;-) On the other hand, I do know that many people have had that

problem--and significant others--with MTX).

Here we have it: there are Metexers and Enbrelers, and each group, begrudgingly,

acknowledges the others' drug as " probably the...Second Best PA drug out there. "

We have eloquent member-advocates for both MTX, and for Enbrel, on the board.

Which will work better in a given patient? Boy, there's an interesting research

project!! Meanwhile, it's trial and error. Isn't it understandable one would

recommend the drug that worked best for themselves, in 's case Enbrel,

and in my case methotrexate?

D.]

;-)

December 6, 2003

In a message dated 12/6/03 12:03:10 AM Eastern Standard Time, mifel@...

writes:

<< I have ben talking to my doctor about going on MTX and I asked him

specifically if I could still drink wine. He said that his rule was 1

glass a day is ok. I know that there is disagreement with that

advice. He also doesn't feel that liver biopsis are required unless

the blood testindicates a problem. >>

If you are a " regular " drinker, you can't continue your " regular " drinking

habit. If you only drink occasionally, I am sure it's fine. With Enbrel there

are NO drinking retrictions from what I have read.

[Editor's Note: The methorexate directives with regard to alcohol seem to have

shifted a bit since it was first introduced for " severe, recalcitrant psoriasis

in individuals for who all other treatments have failed, by physicians trained

in its use " . The earliest warnings were probably over-cautious.

When MTX was introduced for arthritis, a huge new population of users was added;

the greater experience allowed medical authorities to re-evaluate the strictures

on MTX. " Officially " , the literature still says no drinking, but experience has

led to a certain level 0f permissiveness.

Liver biopsies are done to check for " silent " damage, not picked up by blood

tests. Unless they now have a test that checks for the damage that couldn't be

tested for way back when, liver biopsies may still be needed.

D.]

December 7, 2003

In a message dated 12/6/2003 12:03:10 AM Eastern Standard Time,

mifel@... writes:

I have ben talking to my doctor about going on MTX and I asked him

specifically if I could still drink wine. He said that his rule was 1

glass a day is ok.

My doctor told me one glass a week.

Janet

[Editor's Note: Hi, Janet...Yes, but did your doc say what SIZE of glass you had

to use? ;-}

D.]

December 7, 2003

When I was on MTX, I was told a glass of wine a day was fine. It was when I got

too wine-happy that my liver counts shot through the roof and we had to take me

off......

IF I were to go back on MTX it would probably be okay now, but the fact that the

counts shot up even when I reduced my wine intake showed us that my body is

somewhat vulunerable to the MTX.

LeAnn Cayer & Furbrats Blossom & Meriko

Heart Bandits American Eskimo Dog Rescue

Railroad Coordinator www.heartbandits.com

December 7, 2003

Answers are interspersed,

D.,

As a " regular " beer drinker, a few cans (typically 3) while watching

the news before going to bed every night (more at a party), and a

person who also suffers from PA now flaring and P that has grown

substantially worse the last few years, I'm curious about what it is

that alcohol is supposed to do in combination with Methotrexate. Is

it instant liver death, or is it just an increased risk of liver

damage?

[EdNote: " Increased risk " of liver damage. The risk goes up with increased

consumption. Medical authorities split over the issue of alcohol and MTX, some

acquiescing to the notion of a drink or two (a day), and others remaining

adamant. Fatal toxicity can come on suddenly. You and your doctor need to

discuss this frankly--what are your " assets " , and your " liabilities " , in terms

of alcohol consumption?]

One of the things that bothers me most about modern medicine (the

only form to which I have been exposed, having been both very healthy

and doctor-shy until I reached 65), is the intense focus physicians

have on extending my life, at any cost, it seems, to the quality of

that life *now*. I don't know how others feel about this, but as

somewhat of a 66 year old fatalist, I'd prefer to take my lumps later

for a high quality of life now and die at my unavoidably appointed

time. I really don't want to live to a mindless dotage (as my mother

and father-in-law did) and miss all the opportunities and pleasures

that still exist for folks in their post-retirement years who are not

broke.

[EdNote: You bring up an important issue, with all sorts of philosophical

ramifications: Quantity vs. Quality of life; Form vs. Content, etc. In medicine

this has become the age of the Specialists, who treat parts of the body, and

thus have lost the sense of treated the whole individual. Psychologists, at

least, ahave a working frame of reference to avoid that pitfall; it's called

" Gestalt " , where the whole is greater than the sum of the parts. Quality of

life, as regards the " Gemutlichkeit " (Good Times that is Munich during

Oktoberfest--or your house, during a party, adds to one's overall wellness).

My wife, as an example, has Lupus, and a few months ago, also

suffered three transient ischemic attacks (mini-strokes or TIAs). One

of the proposals for stroke prevention in her case was a statin (a

drug family for reducing cholesterol) that gave her severe muscle

pain (an occasional side-effect). She stopped taking it, of course,

but the doc was very concerned that they find an alternative. Her

view is that she'd rather live comfortably now and die of a stroke

later than suffer a debilitating myalgia for an extended life (She's

62). I don't blame her. If I must take Methotrexate, I'll compromise.

I'll cut back to two beers a night, and if that causes my earlier,

but otherwise reasonably comfortable demise, so be it. I've always

been very active - I really don't want to live long - I want to live

well.

Well, it looks like you've already got a plan. Given the elements of the

equilibrium sought, it looks like a good one. We've covered the clinical

picture; some folks get away with a little alcohol, some don't; check with your

doc.

Strictly off the record, if it were me: If it turned out that I tolerated

methotrexate very well (and I do), indeed, with no side-effects (and I have

none), and my bloodwork came back OK each 1-2 months (it does, for 23 years), I

were willing to have a liver biopsy when my doc thought it was time (I am, and

I've had 3), then I'd feel free to have a few every now and then, as long as I

did't take them (alcohol & MTX) within 24 hours of each other (I do feel free,

and I don't take them both with 24 hours), I'd feel pretty good about continuing

to use my own good judgement.... ;-}

D.

>damage that couldn't be tested for way back when, liver biopsies may

>still be needed.

>

> D.]

December 8, 2003

In a message dated 12/7/03 6:30:16 PM Eastern Standard Time,

pookiegut@... writes:

<< Here we have it: there are Metexers and Enbrelers, and each group,

begrudgingly, acknowledges the others' drug as " probably the...Second Best PA

drug

out there. " >>

And see... that is where I didn't want this to go. I am not FOR or AGAINST

any drug. What I am " for " is people knowing enough about each drug to personally

decide what is best for them... without their Dr. MAKING the decision for

them. I want to make sure whoever is making this decision realized that the Dr.

is not always right!

[Editor's Note: I agree, : In my postings and Editor's Notes on the

subject, I have consistently suggested that if we " listen " carefully, our bodies

will tell us what we need. I've also advocated learning as much about PA and

related subjects as possible.

In the editor's note you quote from, I was suggesting that when a new (or

other) member asks the question (which drug to use?), the question asker needs

to understand that they need to make their own, educated and researched,

evaluation and do what is right for themselves. Because the real odds of a drug

working for one is either 0% or 100%: it works or it doesn't. Percentages are

useful when talking about large groups (i.e., 1% of the population has

psoriasis), but not when you're dealing with just yourself.

I was also trying to make the point that both MTX and Enbrel have been

dramatically--even near-miraculously--successful, and as a result we have, in

our membership, evangelists for both. When asked for a recommendation, the

advocates of both drugs can be--understandably; they want others to gain the

benefits they've experienced--a bit biased in favor of " their " drug.

What people need to do is exactly what you (and I, above), suggest. And

over-zealous advocates for both drugs need to remember that phrase that has

become the PAer's " mantra " : And remember, people may respond differently to this

medication, so it may not work the same way for you... :-)

D.]

December 8, 2003

In a message dated 12/8/2003 2:26:03 PM Eastern Standard Time, fam24@...

writes:

[Editor's Note: Hi, Janet...Yes, but did your doc say what SIZE of glass you

had to use? ;-}

D.]

I think it was a liter.

Janet

December 9, 2003

> [EdNote: You bring up an important issue, with all sorts of

philosophical ramifications: Quantity vs. Quality of life; Form vs.

Content, etc. In medicine this has become the age of the Specialists,

who treat parts of the body, and thus have lost the sense of treated

the whole individual. Psychologists, at least, ahave a working frame

of reference to avoid that pitfall; it's called " Gestalt " , where the

whole is greater than the sum of the parts. Quality of life, as

regards the " Gemutlichkeit " (Good Times that is Munich during

Oktoberfest--or your house, during a party, adds to one's overall

wellness).

>

you bring up an excellent point as this is some of the decision

making i went through. My wife (she is an RN.) said you are not gonna

take that crap are you??? (MX) But my decision to take it was based

on the fact that i've been hobbling around for a year like I'm 80.

Its not worth the pain at age 38. In the prime of my life and not to

take advantage of medication that could get you going again would be

just plain silly. Maybe my liver will blow out a year or two earlier

than if I didnt take it but so be it.

Rich

December 9, 2003

HMM? We are forgetting a very important drug that works for SOME of us...

Soriatane.

I use it in combo with Naproxen & Lortabs and it seems to be working for me. MTX

was NOT responding after a while. I still had BAD P & PA!

LeAnn Cayer & Furbrats Blossom & Meriko

Heart Bandits American Eskimo Dog Rescue

Railroad Coordinator www.heartbandits.com

December 10, 2003

Hello,

I've been diagnosed with PA for almost 9 months now even though I guess

I've had it all my life. It really got bad about 6 years ago when I fell

and dislocated the disc in my right jaw.

I've currently tried Methotrexate and Enbrel and had bad reactions to

both. Both of these caused breathing problems, swollen glands, edema and

after the 5th injection of Enbrel I was diagnosed with congestive heart

failure. I'm currently being seen by a cardiologist who is suppose to

either approve or not allow the use of Humira. As far as I know Humira

doesn't contain Benzyl alcohol like both the other two do and there is a

possibility I'm allergic to that part of the medication.

Has anyone had similar side effects with Humira? After my last

experiences I thought I'll just skip the arthritis new line of drugs and

stay with the oldies. The problem is the oldies like sulfasuine do not seem

to work. I have so much pain now in my feet, knees, back, hips and hands

it's really incredible. I have also been in pain management for almost 3

years and even with heavy doses of pain killers, I'm still in pain most of

the day.

I no longer work, drive, cook and use a wheel chair to get around outside

of the house, when I do venture out. Sometimes I don't think enough is said

about the pain PA causes. I mean everyone knows that Rheumatoid arthritis

is painful, but even if they have heard of PA most of them have no idea how

painful this disease can be. Maybe I just have a low pain threshold, but I

really don't think so. I've had broken bones, endured severe TMJ surgery

and pain, fibromyalgia, surgery, and of course natural childbirth, but PA

has completely stopped me in my tracks. Now having the congestive heart

problems I also have more trouble exercising due to breathing problems.

I was also wondering if anyone else has swelling on their thighs...I've

been checked twice for a blood clot and every time luckily that has come

back negative. I've started to think it's a reaction to PA in my hip and

maybe a swollen nerve from my back problems. I also have been on prednisone

for almost a year now. I was on 20 mg a day and got it down to 10mg and

then the pain really hit like a ton of bricks. So now I'm back to 15mg and

praying that the Humira will work and let me get off prednisone once and for

all.

I know I kind of rambled in this email, but I mainly need to know if

anyone has tried Humira, and how it worked for them? Is your pain really

severe? (say a 8-9 out of 10) and if anyone else has inner thigh problems

due to a back or spinal nerve being pinched? Any help would be great. I

also think since this is a rare form of arthritis most people seem to just

dismiss it and you do end up feeling alone a lot of the time. Luckily I have

a strong family who loves me and wants me around no matter what. Or at

least they haven't gotten fed up yet. Thanks for any advice.

Fran in Florida.

[Editor's Note: Fran, I know exactly what you're saying about the pain levels in

PA. Of the questions/issues you brought up (I've never had Humira), one I might

have some info/suggestions on is pain control; are you seeing a pain mgmt

specialist, and, if so, what is your current meds regimen ( & what have you tried

that hasn't worked?)

D.]

December 10, 2003

Dear , Can you send me your email address so I can reply to you? I

know that everyone takes something for pain, but I really hate to post all

my medications on a large site. I'm probably being really silly, but

several times I've wanted to email you and wasn't sure how. Thanks, Fran in