Intro from New Mexico

[Guest guest]

Hi All,

 

My name is Sheryl Kaminski and I live in New Mexico.  I've had RA for 19 yrs

now.  Started out on Sulindac, than added Plaquinel and then Methotrexate. 

Things were good for about 6 or 7 yrs then I had a toxic reaction to the

Methotrexate.  I thought I had bronchitis.  When coughing didn't subside in 2

weeks, went to my family practioner.  He put me on antibiotics.  2 weeks later,

I was worse.  Thought I had pneumonia.  Couldn't even trudge up a flight of

stairs w/o collapsing on my knees, gasping and coughing for air for 10 minutes. 

I was bed-ridden and getting pretty worried. 

 

Then one day it occurred to me that my Rheumy's nurse would call occasionally

and ask if I was experiencing any of a whole list of symptoms, and it seemed to

me that coughing was one of them.  So I called my Rheumy and she told me to stop

the methotrexate immediately.  24 hrs later I was fine.  $500 later, the

pulmonologist confirmed that there was no permanent lung damage.  My Rheumy said

it was the first case of methotrexate poisoning she'd seen in 20 yrs of

practice.  Somehow, that was no comfort to me.

 

So I quit all conventional drugs and am still not on anything.  Mostly because

of the reaction I had to the methotrexate but also because my insurance then

ridered me for RA.  Couldn't get insurance coverage or afford insurance that had

less than a $2500 deductible.  Am now in the state pool w/a $5000 deductible. 

 

My wrists are frozen or calcified, not sure what the correct term is.  As are

several joints in my fingers.  I have limited range of motion in both ankles, my

right knee (which is flaring badly this winter, putting me on crutches), my left

shoulder and right elbow.  Until about 18 months ago, I managed quite well. 

Moved to NM last August, which has helped tremendously.  Lived in WI before that

and thought I was going to die Jan. of 2009.

 

But this winter, things got pretty bad, so now I am contemplating my options,

hence my reason for joining this list.  I have learned a lot already and am

appreciative of this group. 

Thanks for reading this novel!

 

Sheryl

[Guest guest]

Hi Sheryl,

I am so sorry to hear you are fighting the RA.

I too hated the Methotrexate. I had bad reactions and just the thought or the

smell of the injection fluid would turn my stomach.

I was on it at least 5-7 years. Went into early menopause while I was taking it

also.

I can't tell how much better I felt after starting Enbrel and 2 years later

Humara. I really had great success with HUmara. I also have taken arava with

the injections. I had 6 great years on the Humara. In the last year my body

started to get smarter than the Humara and I need to move to infusions.

I know you mentioned that your deductable is high. Does this include drug

therapy? With the program Humara has going you should be able to get some money

back.

I would also recommend the Arava. I have never had bad labs after many years on

the drug. I also would recommend lots of fish oil and juices with high

anti-oxidants and no pastuization.

The anti-oxidants really focus on inflamation in the body.

I do believe agressive drugs have saved me from a crippled body and the energy

to keep going.

Get lots of rest and some moderate exercise when ever you can.

I wish you the best. Feel free to e-mail anytime..

Pj

>

>

>

> Hi All,

>  

> My name is Sheryl Kaminski and I live in New Mexico.  I've had RA for 19 yrs

now.  Started out on Sulindac, than added Plaquinel and then Methotrexate. 

Things were good for about 6 or 7 yrs then I had a toxic reaction to the

Methotrexate.  I thought I had bronchitis.  When coughing didn't subside in 2

weeks, went to my family practioner.  He put me on antibiotics.  2 weeks later,

I was worse.  Thought I had pneumonia.  Couldn't even trudge up a flight of

stairs w/o collapsing on my knees, gasping and coughing for air for 10 minutes. 

I was bed-ridden and getting pretty worried. 

>  

> Then one day it occurred to me that my Rheumy's nurse would call occasionally

and ask if I was experiencing any of a whole list of symptoms, and it seemed to

me that coughing was one of them.  So I called my Rheumy and she told me to stop

the methotrexate immediately.  24 hrs later I was fine.  $500 later, the

pulmonologist confirmed that there was no permanent lung damage.  My Rheumy said

it was the first case of methotrexate poisoning she'd seen in 20 yrs of

practice.  Somehow, that was no comfort to me.

>  

> So I quit all conventional drugs and am still not on anything.  Mostly because

of the reaction I had to the methotrexate but also because my insurance then

ridered me for RA.  Couldn't get insurance coverage or afford insurance that had

less than a $2500 deductible.  Am now in the state pool w/a $5000 deductible. 

>  

> My wrists are frozen or calcified, not sure what the correct term is.  As are

several joints in my fingers.  I have limited range of motion in both ankles, my

right knee (which is flaring badly this winter, putting me on crutches), my left

shoulder and right elbow.  Until about 18 months ago, I managed quite well. 

Moved to NM last August, which has helped tremendously.  Lived in WI before that

and thought I was going to die Jan. of 2009.

>  

> But this winter, things got pretty bad, so now I am contemplating my options,

hence my reason for joining this list.  I have learned a lot already and am

appreciative of this group. 

>

> Thanks for reading this novel!

>  

> Sheryl

>

>

>

>

>

[Guest guest]

Hi Pj,

 

Thanks for your kind words.  Re; my insurance, there is a 30% co-pay for Rx that

is not counted towards the deductible.  My Dr. said the Embrel is $1,000/month

and I can't afford the co-pay.  If I decide to go that route, he will try to

help me w/the financing.  But I'm still undecided as to what to do.

 

I do take Fish oil daily and also Vit D3. 

 

Also wanted to mention re; the anti-inflammatory diet.  I think it depends on

your blood type.  If anyone is familiar w/the book " Eat Right for your Blood

Type " , (I think that is the title), there is a theory that certain people do

better w/certain types of foods.  For example, some people need carbs, others

don't.  My blood type is type B, so that type can eat anything.  Having said

that, I find that keeping the amount of white flour and white sugar I consume to

a minimum does make me feel better.

 

Thanks again

Sheryl

From: warrenisewit <warrenisewit@...>

Subject: [ ] Re: Intro from New Mexico

Date: Monday, March 22, 2010, 11:16 PM

 

Hi Sheryl,

I am so sorry to hear you are fighting the RA.

I too hated the Methotrexate. I had bad reactions and just the thought or the

smell of the injection fluid would turn my stomach.

I was on it at least 5-7 years. Went into early menopause while I was taking it

also.

I can't tell how much better I felt after starting Enbrel and 2 years later

Humara. I really had great success with HUmara. I also have taken arava with the

injections. I had 6 great years on the Humara. In the last year my body started

to get smarter than the Humara and I need to move to infusions.

I know you mentioned that your deductable is high. Does this include drug

therapy? With the program Humara has going you should be able to get some money

back.

I would also recommend the Arava. I have never had bad labs after many years on

the drug. I also would recommend lots of fish oil and juices with high

anti-oxidants and no pastuization.

The anti-oxidants really focus on inflamation in the body.

I do believe agressive drugs have saved me from a crippled body and the energy

to keep going.

Get lots of rest and some moderate exercise when ever you can.

I wish you the best. Feel free to e-mail anytime..

Pj

[Guest guest]

Hi Sheryl - Please contact Enbrel directly. They work with the Encourage

Foundation and have plans for copay assistance as well as plans for those that

have no insurance. I didn't think I'd qualify for help - we have no insurance -

but I get my Enbrel for free. Its a wonderful program and the people are so kind

there. www.enbrel.com There is a section to click that says " Insurance and

Financial assistance " . Hope this helps - either way it won't hurt to check it

out. The worst they could say is no, but I doubt that will happen.

Doreen

Hi Pj,

 

Thanks for your kind words.  Re; my insurance, there is a 30% co-pay for Rx that

is not counted towards the deductible.  My Dr. said the Embrel is $1,000/month

and I can't afford the co-pay.  If I decide to go that route, he will try to

help me w/the financing.  But I'm still undecided as to what to do.

 

I do take Fish oil daily and also Vit D3. 

 

Also wanted to mention re; the anti-inflammatory diet.  I think it depends on

your blood type.  If anyone is familiar w/the book " Eat Right for your Blood

Type " , (I think that is the title), there is a theory that certain people do

better w/certain types of foods.  For example, some people need carbs, others

don't.  My blood type is type B, so that type can eat anything.  Having said

that, I find that keeping the amount of white flour and white sugar I consume to

a minimum does make me feel better.

 

Thanks again

Sheryl

[Guest guest]

Thanks Doreen,

 

Good to know.  But before I do, I'm curious as to what kinds of side effects

people have had while on Enbrel.  And also the length of time you've been on it

and when any side effects occurred and the severity.  I'm especially concerned

about long term effects.

 

After what happened to me w/the methotrexate, I'm scared out of my mind to go on

another med.  Not trying to be a drama queen but actually had a panic attack at

the doctor's office, that's how freaked out I am about this.

Sheryl

From: Mimi <mimi212@...>

Subject: [ ] Re: Intro from New Mexico

Date: Wednesday, March 24, 2010, 7:14 AM

 

Hi Sheryl - Please contact Enbrel directly. They work with the Encourage

Foundation and have plans for copay assistance as well as plans for those that

have no insurance. I didn't think I'd qualify for help - we have no insurance -

but I get my Enbrel for free. Its a wonderful program and the people are so kind

there. www.enbrel.com There is a section to click that says " Insurance and

Financial assistance " . Hope this helps - either way it won't hurt to check it

out. The worst they could say is no, but I doubt that will happen.

Doreen

[Guest guest]

I've been on Enbrel for seven years now, with no adverse side effects

except a mild injection site reaction once in a while.

It's working so well for me that I inject it half as often as called

for, still with the same wonderful results.

Medications affect different people differently, but you won't know

how it affects you unless you try. You can always stop the drug if you

do have bad side effects.

Sue

On Mar 24, 2010, at 11:31 AM, Sheryl wrote:

> Good to know. But before I do, I'm curious as to what kinds of side

> effects people have had while on Enbrel. And also the length of

> time you've been on it and when any side effects occurred and the

> severity. I'm especially concerned about long term effects.

[Guest guest]

Thanks Sue,

 

This is comforting!

Sheryl

From: marysue <marysue@...>

Subject: Re: [ ] Re: Intro from New Mexico

Date: Wednesday, March 24, 2010, 11:52 AM

 

I've been on Enbrel for seven years now, with no adverse side effects

except a mild injection site reaction once in a while.

It's working so well for me that I inject it half as often as called

for, still with the same wonderful results.

Medications affect different people differently, but you won't know

how it affects you unless you try. You can always stop the drug if you

do have bad side effects.

Sue

[Guest guest]

Enbrel also has a program for people with insurance but with a large copay or

deductible.  I was very surprised that I qualified for it but am very thankful

that I decided to check into it.  So far this year I have not had to pay

anything for my RX.  linda

From: Mimi <mimi212@...>

Subject: [ ] Re: Intro from New Mexico

Date: Wednesday, March 24, 2010, 7:14 AM

 

Hi Sheryl - Please contact Enbrel directly. They work with the Encourage

Foundation and have plans for copay assistance as well as plans for those that

have no insurance. I didn't think I'd qualify for help - we have no insurance -

but I get my Enbrel for free. Its a wonderful program and the people are so kind

there. www.enbrel.com There is a section to click that says " Insurance and

Financial assistance " . Hope this helps - either way it won't hurt to check it

out. The worst they could say is no, but I doubt that will happen.

Doreen

Hi Pj,

 

Thanks for your kind words.  Re; my insurance, there is a 30% co-pay for Rx

that is not counted towards the deductible.  My Dr. said the Embrel is

$1,000/month and I can't afford the co-pay.  If I decide to go that route, he

will try to help me w/the financing.  But I'm still undecided as to what to do.

 

I do take Fish oil daily and also Vit D3. 

 

Also wanted to mention re; the anti-inflammatory diet.  I think it depends on

your blood type.  If anyone is familiar w/the book " Eat Right for your Blood

Type " , (I think that is the title), there is a theory that certain people do

better w/certain types of foods.  For example, some people need carbs, others

don't.  My blood type is type B, so that type can eat anything.  Having said

that, I find that keeping the amount of white flour and white sugar I consume to

a minimum does make me feel better.

 

Thanks again

Sheryl

[Guest guest]

Hi ,

 

Thanks for the info

Sheryl

From: Boyd <lindagb52@...>

Subject: Re: [ ] Re: Intro from New Mexico

Date: Thursday, March 25, 2010, 7:22 PM

 

Enbrel also has a program for people with insurance but with a large copay or

deductible.  I was very surprised that I qualified for it but am very thankful

that I decided to check into it.  So far this year I have not had to pay

anything for my RX.  linda

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