Re: Enbrel 4

[Guest guest]

I just wanted you to know that I have been on Enbrel for 5 years. When I

went on it I was told I could expect to lose the use of my hands within 3

months if I didn't. It has completely saved my life. I was a life long

guitarist myself. The drug has been a miracle for me. Although I am not

quit what I once was, I can play guitar again even to the point of the

occasional gig or session. My now 10 year old daughter will remember me as

a musician and I am able to participate in her sports. She's a starting

pitcher on a local rec softball team and just finished a season of GS

basketball. Right now I am back in college to amend my degree to become a

history teacher so I can work without stressing my hands. All of this is

after Enbrel probably prevented my eventual suicide. There are some risks.

There are always some risks. But if you are a highly responsive to the drug

like I was it will change your life. I have also been able to reduce the

injections to a maintenance dose every 2 weeks at this point. By the way, I

used to live in Harrow outside of London and hang out around Covent Garden

in the 80s. I'm in San Diego, CA now. Cheers Ronnie E.

[ ] Enbrel 4

I went to my Rheumy yesterday and chatted about Enbrel and the

concerns I had. Yes she did talk about the increased risks, but

hastened to add that as auto-immune system disease sufferers we are

at an increased risk of things like lymphoma anyway. While there

all I could think about was how was I going to feel better, how and

when was I going to get a day without pain. I can't remember what

that is like. I also have a lot of spinal involvement and is why I

am being offered such an expensive med.

Unfortunately the hospital pharmacy did not have any Enbrel in

stock. Four and a half hours at the hospital for nothing. lol So

what did I do to console myself. I had my tea and decided to go to

the rock concert I had so longingly wanted to go to. I drove 70

miles from my home to the Limelight Club in Crewe, Cheshire. I left

home at 6.30 pm and arrived home, my wife waiting up for me at

12.45am. I went on my Jack, no mates. LOL LOL LOL

My best mate phoned my while I was sat at the end of the bar, he's

got a long standing problem with alcohol, he's been blind drunk for

the past seven days. I felt a sad, sad man, sat at a bar 70 miles

from home on my own. OMG, I did enjoy my self. I haven't been so

reckless in years, (so punk rock). It took me back to my teenage

years. Bob Catley, what a voice, what a singer, what a showman,

absolutely brilliant. As for my mate, he's phoned me this morning,

apparently I inspired him to get himself out of his bed of self

pity, to have a shave and to sober up. So some good came out of the

night. He said he would have jumped at the chance to go with me

even though it is not his type of music, but to be honest I just did

not think about anyone but myself, my own indulgence.

I first saw him as singer in Magnum in 1980, if anything his voice

has matured and got better with age, like a fine wine. Had the

hospital had the Enbrel I surely would not have gone. It will be in

stock by Friday and my next post will probably after I have had my

first shot. There I was, sat at the back sipping water no alcohol I

was driving, come to think of it, I've never been to a rock concert

and not had any alcohol before, being fully immersed in my music,

1980's NWOBHM. Sheer joy, some mid-life crisis I suppose. LOL LOL.

As you can guess I can't keep the smile off my face, but I know I am

going to suffer later. Best song of the night was an acoustic

version of Magnum's " Days of No Trust " , absolutely phenomenal, which

all the people on my other group, Magnum Fans, are raving

about and trying to get hold of a copy.

So if anyone wants to know why Enbrel? It is because I want the

chance to be pain free, to have a life, to be reckless, to play

football (the beautiful game) with my Grand-children, to be a

husband to my wife, she's had more than her fair share to put up

with, to be ME more like I used to be.

PS

Zoella, did you feel my thoughts and prayers.

Keep the light shining,

Ian.

[Guest guest]

Hi Ronnie,

Do you ever play guitar around San Diego these days? Let us know if you have

show.

I remain eternally grateful for reading a post of yours like the one you

wrote below and getting my inflammation down before I lost function in my

feet.

-

> RE: [ ] Enbrel 4

>

> I just wanted you to know that I have been on Enbrel for 5 years. When I

> went on it I was told I could expect to lose the use of my hands within 3

> months if I didn't. It has completely saved my life. I was a life long

> guitarist myself. The drug has been a miracle for me. Although I am not

> quit what I once was, I can play guitar again even to the point of the

> occasional gig or session. My now 10 year old daughter will remember me

> as

> a musician and I am able to participate in her sports. She's a starting

> pitcher on a local rec softball team and just finished a season of GS

> basketball. Right now I am back in college to amend my degree to become a

> history teacher so I can work without stressing my hands. All of this is

> after Enbrel probably prevented my eventual suicide. There are some

risks.

> There are always some risks. But if you are a highly responsive to the

> drug

> like I was it will change your life. I have also been able to reduce the

> injections to a maintenance dose every 2 weeks at this point. By the way,

> I

> used to live in Harrow outside of London and hang out around Covent Garden

> in the 80s. I'm in San Diego, CA now. Cheers Ronnie E.

[Guest guest]

On Wed, 19 Apr 2006, viking_warlock wrote:

> I went to my Rheumy yesterday and chatted about Enbrel and the

> concerns I had. Yes she did talk about the increased risks, but

> hastened to add that as auto-immune system disease sufferers we are

> at an increased risk of things like lymphoma anyway. While there

> all I could think about was how was I going to feel better, how and

> when was I going to get a day without pain. I can't remember what

> that is like. I also have a lot of spinal involvement and is why I

> am being offered such an expensive med.

> Unfortunately the hospital pharmacy did not have any Enbrel in

> stock. Four and a half hours at the hospital for nothing. lol

That's why I love mail-order pharmacies, especially for chronic stuff like

Enbrel. Medco ships me the stuff overnight, refrigerated, once every three

months. No more having to rely on stock-on-hand.

[Guest guest]

> I went to my Rheumy yesterday and chatted about Enbrel and the

> concerns I had. Yes she did talk about the increased risks, but

> hastened to add that as auto-immune system disease sufferers we are

> at an increased risk of things like lymphoma anyway. While there

> all I could think about was how was I going to feel better, how and

> when was I going to get a day without pain. I can't remember what

> that is like. I also have a lot of spinal involvement and is why I

> am being offered such an expensive med.

> Unfortunately the hospital pharmacy did not have any Enbrel in

> stock. Four and a half hours at the hospital for nothing. lol So

Ah, just noticed you're in the UK. I know the pharmacy system is different

over there. I lived there for a year and it was a completely new

experience for me to take my prescription (printed on a computer at an

appointment for which I wasn't charged anything) into the nearby Boots,

hand it to them, and be handed the medicine again for no charge.

[Guest guest]

Hi ,

Different country, different systems I believe. At least I don't

have to pay for it as I most certainly could not afford it.

keep the light shining,

Ian.

>

> > I went to my Rheumy yesterday and chatted about Enbrel and the

> > concerns I had. Yes she did talk about the increased risks, but

> > hastened to add that as auto-immune system disease sufferers we

are

> > at an increased risk of things like lymphoma anyway. While there

> > all I could think about was how was I going to feel better, how

and

> > when was I going to get a day without pain. I can't remember

what

> > that is like. I also have a lot of spinal involvement and is

why I

> > am being offered such an expensive med.

> > Unfortunately the hospital pharmacy did not have any Enbrel in

> > stock. Four and a half hours at the hospital for nothing. lol

>

> That's why I love mail-order pharmacies, especially for chronic

stuff like

> Enbrel. Medco ships me the stuff overnight, refrigerated, once

every three

> months. No more having to rely on stock-on-hand.

>

[Guest guest]

Dear ,

Something good did come from the Great War, after the appauling way

that many British soldiers were treated by some officers. There

were more Brits executed for desertion than any other nation, many

of them suffering from shell-shock, but subsequent governments still

are reluctant to pardon them. The National Health Service. The

principle is a good one, free point of service for all but we do pay

in taxes on alcohol, tobacco and petrol.

keep the light shining,

Ian.

>

> > I went to my Rheumy yesterday and chatted about Enbrel and the

> > concerns I had. Yes she did talk about the increased risks, but

> > hastened to add that as auto-immune system disease sufferers we

are

> > at an increased risk of things like lymphoma anyway. While there

> > all I could think about was how was I going to feel better, how

and

> > when was I going to get a day without pain. I can't remember

what

> > that is like. I also have a lot of spinal involvement and is

why I

> > am being offered such an expensive med.

> > Unfortunately the hospital pharmacy did not have any Enbrel in

> > stock. Four and a half hours at the hospital for nothing. lol So

>

> Ah, just noticed you're in the UK. I know the pharmacy system is

different

> over there. I lived there for a year and it was a completely new

> experience for me to take my prescription (printed on a computer

at an

> appointment for which I wasn't charged anything) into the nearby

Boots,

> hand it to them, and be handed the medicine again for no charge.

>

[Guest guest]

As I read these posts, I go through an emotional roller coaster of my own.

Reading Jayson's account of how life is so difficult breaks my heart.

Jayson, I wish for you the strength and patience to let time do it's thing

and bring about positive change in your life.

My roller coaster dates back a few years, where I've experienced a lot of

loss and stress. All around the same time, one of my best friends suffered

from and died of cancer, leaving behind an 18 year old daughter on her

own. My aging mother was hospitalized and on the verge of death for weeks

(luckily recovered), I got diagnosed with PA after years of confusion and

fear, and at the same time, my marriage of 21 years ended. I have two

teenage sons - don't have to describe the challenge and drain of that. We

have no other family to speak of, as my parents were both holocaust

survivors and no relatives survived. I used to have a close group of

friends since my teen years, but they have dropped out of my life and one

of them is involved with my ex-husband. I'm trying to build new

friendships and find support, but it takes time.

I cry a lot, especially when the PA flares and it feels like I can't

manage all that I've got on my plate. Other times, when things look more

promising, or when I read posts like this, I am encouraged and inspired

and understand that time is the key and change can come about.

Ronnie, I live in LA and am trying to find solutions to my new financial

challenges. I'm wondering how you're going about retraining to teach, as

I've considered transitioning from graphic design to teaching, but am

afraid that here in southern Calif. it's not enough to live on. I'm

interested in your feedback and any advice you might have.

I don't often write in, but I read everyone's posts religiously and am

thankful for this forum.

- Haleila

> Date: Wed, 19 Apr 2006 21:08:29 -0700

> From: " Ronnie " <ronevans@...>

> Subject: RE: Enbrel 4

>

> I just wanted you to know that I have been on Enbrel for 5 years. When I

> went on it I was told I could expect to lose the use of my hands within 3

> months if I didn't. It has completely saved my life. I was a life long

> guitarist myself. The drug has been a miracle for me. Although I am not

> quit what I once was, I can play guitar again even to the point of the

> occasional gig or session. My now 10 year old daughter will remember me

> as

> a musician and I am able to participate in her sports. She's a starting

> pitcher on a local rec softball team and just finished a season of GS

> basketball. Right now I am back in college to amend my degree to become a

> history teacher so I can work without stressing my hands. All of this is

> after Enbrel probably prevented my eventual suicide. There are some

> risks.

> There are always some risks. But if you are a highly responsive to the

> drug

> like I was it will change your life. I have also been able to reduce the

> injections to a maintenance dose every 2 weeks at this point. By the way,

> I

> used to live in Harrow outside of London and hang out around Covent Garden

> in the 80s. I'm in San Diego, CA now. Cheers Ronnie E.

>

[Guest guest]

if you want a reasonable synopsis of teaching job

availibility go to

edjoin.org

they have listings for LA

I am a teacher who suffered w/ PA for a few years

before they got it right and now I am back and playing

a little tennis even. Things can get better

best to you

greg

--- haleila@... wrote:

> As I read these posts, I go through an emotional

> roller coaster of my own.

> Reading Jayson's account of how life is so difficult

> breaks my heart.

> Jayson, I wish for you the strength and patience to

> let time do it's thing

> and bring about positive change in your life.

>

> My roller coaster dates back a few years, where I've

> experienced a lot of

> loss and stress. All around the same time, one of my

> best friends suffered

> from and died of cancer, leaving behind an 18 year

> old daughter on her

> own. My aging mother was hospitalized and on the

> verge of death for weeks

> (luckily recovered), I got diagnosed with PA after

> years of confusion and

> fear, and at the same time, my marriage of 21 years

> ended. I have two

> teenage sons - don't have to describe the challenge

> and drain of that. We

> have no other family to speak of, as my parents were

> both holocaust

> survivors and no relatives survived. I used to have

> a close group of

> friends since my teen years, but they have dropped

> out of my life and one

> of them is involved with my ex-husband. I'm trying

> to build new

> friendships and find support, but it takes time.

>

> I cry a lot, especially when the PA flares and it

> feels like I can't

> manage all that I've got on my plate. Other times,

> when things look more

> promising, or when I read posts like this, I am

> encouraged and inspired

> and understand that time is the key and change can

> come about.

>

> Ronnie, I live in LA and am trying to find solutions

> to my new financial

> challenges. I'm wondering how you're going about

> retraining to teach, as

> I've considered transitioning from graphic design to

> teaching, but am

> afraid that here in southern Calif. it's not enough

> to live on. I'm

> interested in your feedback and any advice you might

> have.

>

> I don't often write in, but I read everyone's posts

> religiously and am

> thankful for this forum.

> - Haleila

[Guest guest]

Teaching is a great job for someone with PA. The writing hurts, but I am free

to walk when I need and sit when I need. I am so grateful to have a job that I

can do! Plus, summers off are wonderful.

Jody

greg lehman <gergnamhel@...> wrote:

if you want a reasonable synopsis of teaching job

availibility go to

edjoin.org

they have listings for LA

I am a teacher who suffered w/ PA for a few years

before they got it right and now I am back and playing

a little tennis even. Things can get better

best to you

greg

[Guest guest]

> Ah, just noticed you're in the UK. I know the pharmacy system is

different

> over there. I lived there for a year and it was a completely new

> experience for me to take my prescription (printed on a computer at

an

> appointment for which I wasn't charged anything) into the nearby

Boots,

> hand it to them, and be handed the medicine again for no charge.

>

I'm sorry - did I read that right? NO CHARGE?

That's it! I'm moving - know anyone who wants a computer geek/web

master to work for them?

shirl