Psoriasis support - Methetroxate vs Biologics

Author

Methetroxate vs Biologics

panos

2005-05-22, 11:52 am

Hello everybody,

I am 65 years old and I have been suffering by P since the age of 30.
In these 35 years I have tried almost any treatment possible. UV,
Dovonex, Anthralin and many more. Some haven't worked at all, some
others have given me a slight improvement but nothing great. For the
last six years I have been taking methetroxate and I have really seen a
big difference. Of course it has the disadvantage that I have to do
regular blood tests and often visit my doctor but I have settled with
that. The problem is that some months ago I decided to visit another
doctor and he told me that I have been taking the drug too long and
that I should stop immediately because it is dangerous to take it
continuously for over 5 years. My blood tests till now haven't shown
anything alarming but the doctor seemed very concerned with the fact
that I was on the drug for 6 years and he scared me off. He proposed to
me to start a biologic treatment either with Enbrel or with Raptiva. I
stopped taking Methetroxate but I haven't started taking anything yet.
After a couple of months after I stopped, the plaque starting growing
and now I am full of it again.
My old doctor still insists on Methetroxate and suggests that it is
much better than the biologic treatments. He told me that some patients
who take Enbrel continue taking Methetroxate, so there wouldn't be any
point of burdening my organism with 2 drugs. Anyway as you understand I
am between 2 different opinions by 2 very respectable doctors, who both
hold positions in Universities, so I don't know what to choose. Of
course Methetroxate is much cheaper but I wouldn't like to base health
decisions on money.
I would appreciate any suggestions especially by those of you who have
tried Methetroxate. Thank you very much.

Best Regards

randall

2005-05-22, 11:52 am

Hi Panos,

If I were you I'd go back to my old derm.

Unless you want to try the biologics.

And if you don't have the insurance you could find a derm
in most cities doing free trials of them.

Good luck
randall

Grandpa Chuck

2005-05-22, 5:52 pm

panos wrote:
> Hello everybody,
>
> I am 65 years old and I have been suffering by P since the age of 30.
> In these 35 years I have tried almost any treatment possible. UV,
> Dovonex, Anthralin and many more. Some haven't worked at all, some
> others have given me a slight improvement but nothing great. For the
> last six years I have been taking methetroxate and I have really seen a
> big difference. Of course it has the disadvantage that I have to do
> regular blood tests and often visit my doctor but I have settled with
> that. The problem is that some months ago I decided to visit another
> doctor and he told me that I have been taking the drug too long and
> that I should stop immediately because it is dangerous to take it
> continuously for over 5 years. My blood tests till now haven't shown
> anything alarming but the doctor seemed very concerned with the fact
> that I was on the drug for 6 years and he scared me off. He proposed to
> me to start a biologic treatment either with Enbrel or with Raptiva. I
> stopped taking Methetroxate but I haven't started taking anything yet.
> After a couple of months after I stopped, the plaque starting growing
> and now I am full of it again.
> My old doctor still insists on Methetroxate and suggests that it is
> much better than the biologic treatments. He told me that some patients
> who take Enbrel continue taking Methetroxate, so there wouldn't be any
> point of burdening my organism with 2 drugs. Anyway as you understand I
> am between 2 different opinions by 2 very respectable doctors, who both
> hold positions in Universities, so I don't know what to choose. Of
> course Methetroxate is much cheaper but I wouldn't like to base health
> decisions on money.
> I would appreciate any suggestions especially by those of you who have
> tried Methetroxate. Thank you very much.
>
> Best Regards
>

My first question to you would be, do you trust your dermatologist and
do you believe he has your best interests at heart?

I have been on Methotrexate for several months. I was approved by our
health insurance company for Enbrel, but my out of pocket costs would
have been $1,000 per year which being on a pension and social security
is too high. BTW, I will be 65 next month. My dermatologist said he
would rather have me on Metho anyway because he believes it is much
safer. He said there have not been any long term studies yet on Enbrel
since it hasn't been around long enough yet. He said at a
dermatological conference he was at the consensus seemed to be to give
the biologics more time before routinely using them.

He told me has never heard of any case where longterm damage has been
done to patients taking Metho at the recommended levels for psoriasis.
My blood work has been normal long enough now that I am only getting
blood work done every two months.

I have had what I am sure is psoriasis since birth. My mom and grandma
said that I had the worse case of cradle cap they had ever seen. Every
time I went to a new barber he/she would tell me that I had the worst
dandruff they had ever seen and almost always recommend some high
priced product that never worked at all. In fact some make my scalp
flake more and itch more.

Like you, I found that there was not any topicals that worked for me
for very long. I had the best reduction in plaques using nothing more
than wheatgrass spray. It reduced the thickness of my plaques by at
least 90% and some of them became normal skin. I still was not
clearing to my and my doctor's satisfaction so we decided to try the
Metho. I am sold on it! Right now I only have two lesions. They are on
my torso under my right arm and each one is about 2" in diameter.
There is no plaque. The skin is just rough in those two areas. It may
not be psoriasis at all.

A friend that reads this newsgroup said she goes off the Metho in the
winter months because she will be wearing long sleeves and no one will
notice it anyway. She still uses her UVB box all the time. My derm
told me to stop using my UVB cabinet while I'm on the Metho. I do try
to get outside in a T-shirt or tank top and shorts every day weather
permitting. There is nothing like natural sunlight in my estimation.

Good luck with whatever you decide to do.

--
Grandpa Chuck
-ô¿ô-
~

According to http://icasualties.org/oif/
The number of Americans killed in Iraq as of May 20, 2005 is 1631.

++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
100
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
200
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
300
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
400
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
500
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
600
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
700
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
800
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
900
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
1,000
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
1,100
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
1,200
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
1,300
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
1,400
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
1,500
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
1,600
+++++++++++++++++++++++++++++++
1,631

United Kingdom = 88

++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++

Other = 92

++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++

Iraqi civilian deaths are between 24,000 and 100,000 by all estimates.

+---------------+
| PLEASE |
| DO NOT |
| FEED THE |
| TROLLS |
+---------------+
| |
| |
.\|...||/..

JXStern

2005-05-22, 10:51 pm

On 22 May 2005 09:03:25 -0700, "panos" <pkassianidis@gmail.com> wrote:
>I would appreciate any suggestions especially by those of you who have
>tried Methetroxate. Thank you very much.

My impression is that it is older guidelines that take people off
methotrexate based on time or dosage, rather than tests. It seems
like newer science and practice to let people stay on methotrexate for
psoriasis, at low doses.

OTOH, for many people Enbrel (in particular) seems to work great and
without the drawbacks in energy that seem to go with methotrexate.
Other than the psoriasis, have you felt any different (eg, better)
since getting off methotrexate?

I'd say you could go either way and have good odds of success.

Take care,

J.

Kim

2005-05-23, 8:58 am

The issue with mtx is not length of years but cumulative lifetime
dose, so how long you should continue depends upon what you're dosage
has been. And the issue with that is an increased risk of liver
damage. Not certainty, but a significant increased risk over the
normal population of serious liver damage after a certain point (I've
heard different amounts given for this, but can try to dig it up if
you need it - IMO it's an ask the NPF sort of question). If the doctor
doesn't know this and honestly believes it's just the number of years,
then I don't think much of his expertise. Ah, FWIW, yes I have been on
mtx and had the mother of all rebounds to deal with when I came off
it, which I have to think might be a real possibility for you after 6
years of it and sounds like it's happening. I also don't have much
respect for a doctor's expertise in scaremongering you into cold
turkeying you off it without sufficient reason, rather than weaning
you off to avoid rebound worsening. That can get pretty nasty, with a
worse case kicking it into erythrodermic.

That being said, there is no one's right/one's wrong. There's elements
of truth to both sides (although I wouldn't think any better of a
blanket statement by your other doc that mtx is better than I think of
the above stuff).

There's no guarantee that one of the new biologics will help you in
the first place, while you do know that mtx does and will. That's not
something to be discounted, especially so long as you are being
properly monitored and showing no signs of damage. There are also
other non-biologic based ways of using combination therapy to reduce
the dose and extend the time you an use it.

While the new biologocs carry their own, different risks with less
certitude about the long term effects of using them since at this
point there hasn't been the sort of extended experience in using them
there has been with mtx. Most of the risks are less serious than with
mtx, but not all of them, and there's less certainty because of less
experience. Also FWIW, I'll be damned if I know why doctors are so
damned eager to dose patients up with Raptiva given that that's the
only biologic with a proven record of rebounds, with it also
apparently not uncommon for people to have some worsening while on it.
I mean you're already likely going through a mtx induced rebound...
Sorry, one of my pet peeves.

I think this is one of those do what you're doing - get as much info
as you can and balance out all the issues, including the doctors'
apparent biases, vs agree with one or the other, since it sounds like
their both both right and wrong and it comes down to figuring out what
matters most to you. What you're talking about with the mtx is risk,
but it is a risk of serious problems. OTOH there is a likely smaller %
wise, but still real risk of different serious problems with the
biologics. And as I said, no guarantee that you get a payback of good
results with that risk, such as you know there is with the mtx.

The NPF site - http://www.psoriasis.org is a good place to get a lot
of info about both options (and rxlist.com for some more techinical
stuff about risks), especially if you're a member (even a website only
member) and can access the extra literature. Might I also suggest you
search the newsgroup archives for what other people have said about
actually being on then both. You can do that with tools at
http://www.pinch.com or just go straight to google.

Good luck deciding and I hopt it works out well for you.
Kim

On 22 May 2005 09:03:25 -0700, "panos" <pkassianidis@gmail.com> wrote:

>Hello everybody,
>
>I am 65 years old and I have been suffering by P since the age of 30.
>In these 35 years I have tried almost any treatment possible. UV,
>Dovonex, Anthralin and many more. Some haven't worked at all, some
>others have given me a slight improvement but nothing great. For the
>last six years I have been taking methetroxate and I have really seen a
>big difference. Of course it has the disadvantage that I have to do
>regular blood tests and often visit my doctor but I have settled with
>that. The problem is that some months ago I decided to visit another
>doctor and he told me that I have been taking the drug too long and
>that I should stop immediately because it is dangerous to take it
>continuously for over 5 years. My blood tests till now haven't shown
>anything alarming but the doctor seemed very concerned with the fact
>that I was on the drug for 6 years and he scared me off. He proposed to
>me to start a biologic treatment either with Enbrel or with Raptiva. I
>stopped taking Methetroxate but I haven't started taking anything yet.
>After a couple of months after I stopped, the plaque starting growing
>and now I am full of it again.
>My old doctor still insists on Methetroxate and suggests that it is
>much better than the biologic treatments. He told me that some patients
>who take Enbrel continue taking Methetroxate, so there wouldn't be any
>point of burdening my organism with 2 drugs. Anyway as you understand I
>am between 2 different opinions by 2 very respectable doctors, who both
>hold positions in Universities, so I don't know what to choose. Of
>course Methetroxate is much cheaper but I wouldn't like to base health
>decisions on money.
>I would appreciate any suggestions especially by those of you who have
>tried Methetroxate. Thank you very much.
>
> Best Regards

The Psoriasis NG FAQ is posted monthly and can be viewed at
http://www.psoriasisfaq.com

Scottie

2005-05-23, 8:58 am

>
He told me has never heard of any case where longterm damage has been
done to patients taking Metho at the recommended levels for psoriasis.
>
I find this hard to believe, unless it's only for the very close monitoring
to stop treatment asap following warning signs.
MTX doses for P are typically higher than for PA. Yet MTX was poision even
at minimal levels for my PA.
Stopped within 3 months because MTX *was* clearly damaging liver etc (at
7.5mg/week).

>
My dermatologist said he
would rather have me on Metho anyway because he believes it is much
safer. He said there have not been any long term studies yet on Enbrel
since it hasn't been around long enough yet.
>

Playing the numbers here, and perhaps on paper someone with little to no
exposure to enbrel would likely take this position.
This was what my Rheumatologist was saying 6 years ago (when there really
was no widespread use of enbrel yet).
Time has changed his position.

I've been on enbrel for over 5 years and have had no need for a
dermatologist for almost that long (also had P since birth).

Nothing comes without risks.
If MTX works safely for an individual then it may be the better choice
because of the cost difference.
And although I havent met anyone who had to stop enbrel due to side effects,
I'm sure there's a number of folks who had to.

"Grandpa Chuck" <"Grandpa Chuck"@B4ME.org> wrote in message
news:ao4ke.29170$WG.7228@attbi_s22...
>
>
> panos wrote:
>
> My first question to you would be, do you trust your dermatologist and
> do you believe he has your best interests at heart?
>
> I have been on Methotrexate for several months. I was approved by our
> health insurance company for Enbrel, but my out of pocket costs would
> have been $1,000 per year which being on a pension and social security
> is too high. BTW, I will be 65 next month. My dermatologist said he
> would rather have me on Metho anyway because he believes it is much
> safer. He said there have not been any long term studies yet on Enbrel
> since it hasn't been around long enough yet. He said at a
> dermatological conference he was at the consensus seemed to be to give
> the biologics more time before routinely using them.
>
> He told me has never heard of any case where longterm damage has been
> done to patients taking Metho at the recommended levels for psoriasis.
> My blood work has been normal long enough now that I am only getting
> blood work done every two months.
>
> I have had what I am sure is psoriasis since birth. My mom and grandma
> said that I had the worse case of cradle cap they had ever seen. Every
> time I went to a new barber he/she would tell me that I had the worst
> dandruff they had ever seen and almost always recommend some high
> priced product that never worked at all. In fact some make my scalp
> flake more and itch more.
>
> Like you, I found that there was not any topicals that worked for me
> for very long. I had the best reduction in plaques using nothing more
> than wheatgrass spray. It reduced the thickness of my plaques by at
> least 90% and some of them became normal skin. I still was not
> clearing to my and my doctor's satisfaction so we decided to try the
> Metho. I am sold on it! Right now I only have two lesions. They are on
> my torso under my right arm and each one is about 2" in diameter.
> There is no plaque. The skin is just rough in those two areas. It may
> not be psoriasis at all.
>
> A friend that reads this newsgroup said she goes off the Metho in the
> winter months because she will be wearing long sleeves and no one will
> notice it anyway. She still uses her UVB box all the time. My derm
> told me to stop using my UVB cabinet while I'm on the Metho. I do try
> to get outside in a T-shirt or tank top and shorts every day weather
> permitting. There is nothing like natural sunlight in my estimation.
>
> Good luck with whatever you decide to do.
>
> --
> Grandpa Chuck
> -ô¿ô-
> ~
>
> According to http://icasualties.org/oif/
> The number of Americans killed in Iraq as of May 20, 2005 is 1631.
>
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> 100
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> 200
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> 300
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> 400
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> 500
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> 600
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> 700
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> 800
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> 900
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> 1,000
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> 1,100
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> 1,200
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> 1,300
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> 1,400
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> 1,500
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> 1,600
> +++++++++++++++++++++++++++++++
> 1,631
>
> United Kingdom = 88
>
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++
>
> Other = 92
>
> ++++++++++++++++++++++++++++++++++++++++++++++++++
> ++++++++++++++++++++++++++++++++++++++++++
>
> Iraqi civilian deaths are between 24,000 and 100,000 by all estimates.
>
>
> +---------------+
> | PLEASE |
> | DO NOT |
> | FEED THE |
> | TROLLS |
> +---------------+
> | |
> | |
> .\|...||/..

Grandpa Chuck

2005-05-23, 11:53 am

Scottie wrote:
> He told me has never heard of any case where longterm damage has been
> done to patients taking Metho at the recommended levels for psoriasis.
>
> I find this hard to believe, unless it's only for the very close monitoring
> to stop treatment asap following warning signs.
> MTX doses for P are typically higher than for PA. Yet MTX was poision even
> at minimal levels for my PA.
> Stopped within 3 months because MTX *was* clearly damaging liver etc (at
> 7.5mg/week).

All I can say is that I have been using it, except for a period of
time that I had to take an antibiotic, for nearly a year at 20mg per
week with normal liver function.

I think this is another YMMV scenario.

>
>
> My dermatologist said he
> would rather have me on Metho anyway because he believes it is much
> safer. He said there have not been any long term studies yet on Enbrel
> since it hasn't been around long enough yet.
>
>
> Playing the numbers here, and perhaps on paper someone with little to no
> exposure to enbrel would likely take this position.

I did not say that my dermatologist doesn't have patients on Enbrel.
He does. He told me he would much rather have his patients use
Methotrexate but does have a number of people on Enbrel.

> This was what my Rheumatologist was saying 6 years ago (when there really
> was no widespread use of enbrel yet).
> Time has changed his position.
>
> I've been on enbrel for over 5 years and have had no need for a
> dermatologist for almost that long (also had P since birth).

I am sure, as with most medicines, if there are unpleasant or
dangerous side effects found with Enbrel it will be in a small
percentage of patients.

>
> Nothing comes without risks.
> If MTX works safely for an individual then it may be the better choice
> because of the cost difference.
> And although I havent met anyone who had to stop enbrel due to side effects,
> I'm sure there's a number of folks who had to.
>

I sincerely hope we never do, but I'm not willing to bet my life on
it. Not only that, so long as the price is so obscenely high Enbrel is
out of reach for many people like myself with limited funds.
Methotrexate costs me $10/month. Enbrel would cost me $100/month until
I have paid out of my pocket $1,000/year, and that is way more than I
can afford. I take eight other prescription meds every day. There is
just no way that we can afford to lay out another $100/month. One more
reason that the United States needs universal health care.

<snip>
--
Grandpa Chuck
-ô¿ô-
~

According to http://icasualties.org/oif/
The number of Americans killed in Iraq as of May 22, 2005 is 1633.

++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
100
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
200
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
300
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
400
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
500
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
600
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
700
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
800
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
900
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
1,000
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
1,100
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
1,200
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
1,300
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
1,400
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
1,500
++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++++++++++
1,600
+++++++++++++++++++++++++++++++++
1,633

United Kingdom = 88

++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++

Other = 92

++++++++++++++++++++++++++++++++++++++++++++++++++
++++++++++++++++++++++++++++++++++++++++++

Iraqi civilian deaths are between 24,000 and 100,000 by all estimates.

+---------------+
| PLEASE |
| DO NOT |
| FEED THE |
| TROLLS |
+---------------+
| |
| |
.\|...||/..

Guy Kudlemyer

2005-05-23, 5:52 pm

I've been on MTX for 25 years. I'm 48, male, and have had P almost since
birth. It exploded when I reached 20s, and that's when I started on it.

I take a small dose, and also use a home-made light box (Put one together
for about $20, plus the price of the bulbs.)

When I asked my doc about Enbrel and Raptiva (about a year ago), he
poo-pooed them saying that MTX is far more effective, cheaper, and that "MTX
is not nearly as dangerous as we once thought it was." He wouldn't let me go
off of it for a biologic.

--Guy
Thurston, OR

On 5/22/05 9:03 AM, in article
1116777805.147675.212460@o13g2000cwo.googlegroups.com, "panos"
<pkassianidis@gmail.com> wrote:

> Hello everybody,
>
> I am 65 years old and I have been suffering by P since the age of 30.
> In these 35 years I have tried almost any treatment possible. UV,
> Dovonex, Anthralin and many more. Some haven't worked at all, some
> others have given me a slight improvement but nothing great. For the
> last six years I have been taking methetroxate and I have really seen a
> big difference. Of course it has the disadvantage that I have to do
> regular blood tests and often visit my doctor but I have settled with
> that. The problem is that some months ago I decided to visit another
> doctor and he told me that I have been taking the drug too long and
> that I should stop immediately because it is dangerous to take it
> continuously for over 5 years. My blood tests till now haven't shown
> anything alarming but the doctor seemed very concerned with the fact
> that I was on the drug for 6 years and he scared me off. He proposed to
> me to start a biologic treatment either with Enbrel or with Raptiva. I
> stopped taking Methetroxate but I haven't started taking anything yet.
> After a couple of months after I stopped, the plaque starting growing
> and now I am full of it again.
> My old doctor still insists on Methetroxate and suggests that it is
> much better than the biologic treatments. He told me that some patients
> who take Enbrel continue taking Methetroxate, so there wouldn't be any
> point of burdening my organism with 2 drugs. Anyway as you understand I
> am between 2 different opinions by 2 very respectable doctors, who both
> hold positions in Universities, so I don't know what to choose. Of
> course Methetroxate is much cheaper but I wouldn't like to base health
> decisions on money.
> I would appreciate any suggestions especially by those of you who have
> tried Methetroxate. Thank you very much.
>
> Best Regards
>

randall

2005-05-23, 10:52 pm

Hi Guy,

Good post. The last derm I went to for a P trial, feels the
same way as yours. And our demographics are very similar as to
the time line of onset , duration and severity.

My derm wanted to put me on some low dose Mtx right after
the study I was in. It was temPting a little.

But it was summer and I had wheatgrass spray and seemed
to be moving in a really positive direction to sub 5% levels at the
time.
My last five years have gone to levels unseen for many moons
with proflora whey used in conjunction with a good gut bug implant.
Yet I continue to yearn for that clear grail....and the ability to
cheat eat.

Lets move back to the light.

Your inventiveness with the light box sounds very hot also! Can you
tell
us a few tiPs on how you put the thing to-gether and where
you found your bulbs?

If anyone is out there with any ideas as to making a dead sea
light box, chime in... figure a box with glass that filters out
the harmfull rays the way the extra atmosphere of the dead sea
does....any budding capitalist want to run with that one? Be
my guest. I just hope your don't put to much $$ in and a cure is
found the next day!! Yeah right! (i can hear JStern now...lol)

Now that would be really hot.... and free due to solar power. lol

There is new info on vitamin D from the Sun today. I'll add it in
my next P news post....

Or how about a tan cream that allows 300-315 nm waves in
abundance ? But blocks the yucky stuff??? Provided there is
yucky stuff.... yuk yuk

We could call it dead sea cream tan gooP....DS gooPy P cream.
Cream for gooP! gooP! P-goo-P

Guy get working on it...

Now all we have to do is get all of us to walk around with
the P crud hanging out... so i won't feel self conscious... when
i do. ...:-)

Just so I don't leave out the really flaky stuff I do, now and then.
I've been doing Qi Gong for around four years. In my early 20's the
positive effects from doing yoga led me back to this breathing
moving exercise method, For those wanting more,
http://ca.geocities.com/kw_chow_qig..._is_qigong.html

You know, the yoga did work great. But mainly in conjunction with
dieting.

I do much better on a vegetarian low arachidonic acid type of diet.

So there you go.. I'm lower now with sunshine and diet, exercise ...
then ever almost. At least all the way back to my preteens and levels
unseen.

And now I want that 2% or less level. GET the light box and gooP...

randall.... I want it all... before the Fall...

Scottie

2005-05-24, 8:57 am

"Grandpa Chuck" <"Grandpa Chuck"@B4ME.org> wrote in message
news:_lmke.33757$WG.12914@attbi_s22...
>
>
> Scottie wrote:
monitoring[vbcol=seagreen]
even[vbcol=seagreen]
>
> All I can say is that I have been using it, except for a period of
> time that I had to take an antibiotic, for nearly a year at 20mg per
> week with normal liver function.
>
> I think this is another YMMV scenario.
>
>
> I did not say that my dermatologist doesn't have patients on Enbrel.
> He does. He told me he would much rather have his patients use
> Methotrexate but does have a number of people on Enbrel.
>
really[vbcol=seagreen]
>
> I am sure, as with most medicines, if there are unpleasant or
> dangerous side effects found with Enbrel it will be in a small
> percentage of patients.
>
effects,[vbcol=seagreen]
>
> I sincerely hope we never do, but I'm not willing to bet my life on
> it. Not only that, so long as the price is so obscenely high Enbrel is
> out of reach for many people like myself with limited funds.
> Methotrexate costs me $10/month. Enbrel would cost me $100/month until
> I have paid out of my pocket $1,000/year, and that is way more than I
> can afford. I take eight other prescription meds every day. There is
> just no way that we can afford to lay out another $100/month. One more
> reason that the United States needs universal health care.
>

No argument with that. Enbrel is $20/month for me, just as MTX is.
Would I pay $100/month? - I'd grumble about it but there's no question I
would so long as I had the cash.
For folks on fixed income or without insurance that's tough. I hope I dont
lose my insurance anytime soon because MTX wouldnt be an option at any
price.
Best regards,

> <snip>
> --
> Grandpa Chuck
> -ô¿ô-
> ~

Guy Kudlemyer

2005-05-24, 5:56 pm

Randall:

> My last five years have gone to levels unseen for many moons
> with proflora whey used in conjunction with a good gut bug implant.
> Yet I continue to yearn for that clear grail....and the ability to
> cheat eat.

Except for an occasional flaring on the scalp, I'm approaching total clear.
But... What is proflora? And what is a "good gut bug implant"?

> Lets move back to the light.
>
> Your inventiveness with the light box sounds very hot also! Can you
> tell
> us a few tiPs on how you put the thing to-gether and where
> you found your bulbs?

The bulbs are available here: http://www.natbiocorp.com

However, be aware that you MUST have a Px from your doc in order to order
them. It was a breeze for me with my doc.

As for the box, here's what I did:
Procure a cardboard refrigerator box. Most appliance stores will willingly
give them away.

Line the inside with aluminum foil. Use spray on adhesive to get it to
stick. Home Depot has it.

Procure several 8' lengths of 1.25" PVC pipe, and enough elbows to build a
"frame" inside the box. (Do your own math...) When I made my box, the pipes
were selling for 88 cents for 6' or 8' (I can't remember which). The elbows
are similarly cheap.

Build the frame, place the box over it. Slice down one side, top to floor,
with a box cutter to make a door. Punch some holes in the box with an ice
pick. Secure the box to the frame with some zip ties, through the holes.
Voila!

> I do much better on a vegetarian low arachidonic acid type of diet.

I eat anything I want--beef, cheese, pizza, corn chips. And, I LOVE beer!

--Guy
Thurston, Oregon

randall

2005-05-24, 10:53 pm

Guy Kudlemyer wrote:
> Randall:
>
>
> Except for an occasional flaring on the scalp, I'm approaching total clear.

Congrats!! may the light box be with you.

> But... What is proflora? And what is a "good gut bug implant"?

When i was over 50% and not feeling very well about it, I found
that i could eat/starve my way to less P. So my reasoning went
something like,
if my metabolism, digestion etc worked better, maybe i could eat
what I wanted without increasing my PASi levels.

So after looking and trying all the digestive enzymes in conjunction
with diets, it still didn't make much sense. As it didn't do anything
hardly. Or not enough to be worth it.

So I went down the Gastro-intestinal tube and figured if I had a colon
that worked better, maybe that would help.

So for 25 years or so, I tried the ND's treatments for growing out
good colon flora. Bernard Jensen and Paul Gray had very specific plans
to accomplish this plan... For years I tried as they refined their
programs. After awhile I gave up. Till the mid 90's and taking out
the omega-6 fats reduced my levels down by half. And that fired me
up but I leveled off at about the half way point and retreated once
again. Now that had me hooked that something could be done in
this vein.

Around 2000 I heard this guy on the radio talking about a slightly
acidic colon and how to do it. So, i called him and told him mine
never responded to the programs I tried or I had some other problems
that never seemed to respond right.

He told me with his program and diet I could have a slightly acidic
colon in 30 days
His program is here,
www.thewholewhey.com
About the third week or so my psoriasis started to clear very fast.

It went down to a few percent by the end of the fourth week.

So, I rejoiced and ate again and found that that wasn't working as
alcohol and an atkins (meat) type of diet turned the thing around and
slowly
regressed it.

So, for the last five years I ate within reason and when it does its
thing, my tastes change to suit my P levels. And all the while
doing little tests of nutrition, herbs, etc to make it easier to
maintain.

About three years ago the wheatgrass spray showed up here and i've
used it mostly after bathing ever since. When I forget a patch, you
can really tell the difference.

www.wheatgrassactive.com

Its one of the only toPicals i use.
>
>
> The bulbs are available here: http://www.natbiocorp.com

I'm familiar wih them. They were at the NPF-- National Psoriasis
conference in San Diego last summer. I talked with their rep for
about an hour. Nice people

Still have their brochures. The 6 foot NB panosol II runs $2150.
The 2 foot Panosol II runs $1750.
>
> However, be aware that you MUST have a Px from your doc in order to order
> them. It was a breeze for me with my doc.
>
> As for the box, here's what I did:
> Procure a cardboard refrigerator box. Most appliance stores will willingly
> give them away.
>
> Line the inside with aluminum foil. Use spray on adhesive to get it to
> stick. Home Depot has it.
>
> Procure several 8' lengths of 1.25" PVC pipe, and enough elbows to build a
> "frame" inside the box. (Do your own math...) When I made my box, the pipes
> were selling for 88 cents for 6' or 8' (I can't remember which). The elbows
> are similarly cheap.
>
> Build the frame, place the box over it. Slice down one side, top to floor,
> with a box cutter to make a door. Punch some holes in the box with an ice
> pick. Secure the box to the frame with some zip ties, through the holes.
> Voila!
>
>
> I eat anything I want--beef, cheese, pizza, corn chips. And, I LOVE beer!

As stated above, I can too but not without having to cook myself in the
sun.
And even then when fall rolls around, I stay vigilant with sunshine
right
up to the point when I know diet has to make the difference. Last year
in december I went down to mexico for a five day trip that got me an
extra month of clear and allowed me to go crazy with tacos et al.

But going over that line finds me returning to the gut flora
trip to knock down the plus 10% flares.

Knowing that I can do this at will has sorta turned me into a
clear junky. Once things go over the 10-15% levels I become the
altar boy of P...

randall... or was that poPe! NoPe? doPe! ;-0
>
> --Guy
> Thurston, Oregon

raydon14yp

2005-05-24, 10:53 pm

I have been on MTX for over 15 years (15mg) & Enbrel for 6 years. Stay on
the MTX if it is clearing you &, if needed, go on Enbrel. I was over 80%
covered with PP & now am about 95% clear. I am 77 years old, & have had
plaque P for over 50 years.

Guy Kudlemyer

2005-05-25, 5:53 pm

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Randall:

> Till the mid 90's and taking out the omega-6 fats reduced my levels down by
> half.

I'm new at this whole "diet" thing (since I've not ever seemed to need it.)
But, where do the omega-6 fatty acids come from? What types of foods?

> Still have their brochures. The 6 foot NB panosol II runs $2150.
> The 2 foot Panosol II runs $1750.

Just buy the fluorescent tubes--not the whole unit! Here:
http://www.natbiocorp.com/home/lamps.html
That's why you build the cardboard box! Then, buy standard fluorescent
fixtures at Home Depot. Wire them yourself (in parallel--otherwise, when one
light burns out, they'll all go out.) If you can't figure it out, almost any
electrician can draw you a quick diagram. Hell, I drew my own, and I've
never done any home wiring before.) I made my box nearly 20 years ago, and I
don't recall how much it cost me, but I'm gonna guess that it was less than
$250.00--including the bulbs! (I use the FS40T12 UVB bulbs)

Thanks for the AHS information; I'll investigate further!

--Guy
Thurston, OR

randall

2005-05-25, 10:52 pm

Guy Kudlemyer wrote:
> Randall:
>
>
> I'm new at this whole "diet" thing (since I've not ever seemed to need it.)
> But, where do the omega-6 fatty acids come from? What types of foods?

It was soy bean oil that flared my hide the most. You can google me in
the
P group and figure that out pronto.

I didn't know. And any attempt at diet made no sense till
I knew the n:3 versus n:6 ratio secrets.

Omega-6 (aka- n:6 w6 )
http://www.wholehealthmd.com/refshe...5,1037,00.html\
http://www.ncbi.nlm.nih.gov/entrez/...0795&query_hl=4

Omega-3's (aka- w-3, n-3 )
http://www.americanheart.org/presen...identifier=4632
http://www.ncbi.nlm.nih.gov/entrez/...5592&query_hl=3
Go to costco.com for their fish oil vitamins.

And it isn't to say that some fractions of the n:6 lipids don't have
anti-inflammatory properties. They do. JSstern in this group does very
well with GLA. And that perplexed me for the longest time. I finally
wraPed my grey cells around it about a year ago. And more so in my
work with atopic patients who did my proflora whey program and then
modified it to work better for their conditions... A real eye opener.

But,

the debate goes on,
http://groups-beta.google.com/group...lr=&sa=N&tab=wg

http://groups-beta.google.com/group...sis&qt_s=Search

http://groups-beta.google.com/group...arch+this+group

And on...

But if you want my opinions then google search me from recent post
backwards.
As I've changed so many times its not funny anymore.

Yes, I can make a difference with omega-3's. But not by eating fish per
se.

More so by taking CLO (cod liver oil) and costco's fish oil pills.

The reason for this is I take my supplements in the mornings and much
more
likely to not have anything fried or cooked that leans towards n:6's
and that
seems to make a huge difference. for me anyway.

Good luck...

You never know. You could stay clear all the time with a few diet tips.

You seem to be the master of light already..

And all p pathways are dependent on the light.

I can break all my rules as long as I'm naked in the light...

randall... dead sea man? Clear but as close to hell as possible!

>
>
> Just buy the fluorescent tubes--not the whole unit! Here:
> http://www.natbiocorp.com/home/lamps.html
> That's why you build the cardboard box! Then, buy standard fluorescent
> fixtures at Home Depot. Wire them yourself (in parallel--otherwise, when one
> light burns out, they'll all go out.) If you can't figure it out, almost any
> electrician can draw you a quick diagram. Hell, I drew my own, and I've
> never done any home wiring before.) I made my box nearly 20 years ago, and I
> don't recall how much it cost me, but I'm gonna guess that it was less than
> $250.00--including the bulbs! (I use the FS40T12 UVB bulbs)
>
> Thanks for the AHS information; I'll investigate further!
>
> --Guy
> Thurston, OR

minniemouse

2005-05-27, 11:51 am

Hello:

I was on MTX for 16 years. I had a blood test every 4 months and a
liver biopsy every 2.5 years or so. It worked great for me. I never had
any issues, but last year my derm took me off because he felt like I
had been on it long enough and sooner or later he was afraid I would
start to have issues. So he switched me to Enbrel which worked, but
not quite as well, but I was ok with it. Then in March of this year I
had a BAD flare. I am still on the Enbrel, but he has added Soriatane
to the mix and I am way down again.

panos wrote:
> Hello everybody,
>
> I am 65 years old and I have been suffering by P since the age of 30.
> In these 35 years I have tried almost any treatment possible. UV,
> Dovonex, Anthralin and many more. Some haven't worked at all, some
> others have given me a slight improvement but nothing great. For the
> last six years I have been taking methetroxate and I have really seen a
> big difference. Of course it has the disadvantage that I have to do
> regular blood tests and often visit my doctor but I have settled with
> that. The problem is that some months ago I decided to visit another
> doctor and he told me that I have been taking the drug too long and
> that I should stop immediately because it is dangerous to take it
> continuously for over 5 years. My blood tests till now haven't shown
> anything alarming but the doctor seemed very concerned with the fact
> that I was on the drug for 6 years and he scared me off. He proposed to
> me to start a biologic treatment either with Enbrel or with Raptiva. I
> stopped taking Methetroxate but I haven't started taking anything yet.
> After a couple of months after I stopped, the plaque starting growing
> and now I am full of it again.
> My old doctor still insists on Methetroxate and suggests that it is
> much better than the biologic treatments. He told me that some patients
> who take Enbrel continue taking Methetroxate, so there wouldn't be any
> point of burdening my organism with 2 drugs. Anyway as you understand I
> am between 2 different opinions by 2 very respectable doctors, who both
> hold positions in Universities, so I don't know what to choose. Of
> course Methetroxate is much cheaper but I wouldn't like to base health
> decisions on money.
> I would appreciate any suggestions especially by those of you who have
> tried Methetroxate. Thank you very much.
>
> Best Regards

Grandpa Chuck

2005-05-27, 10:51 pm

JXStern

2005-05-29, 8:53 am