CHF/Fran

[Guest guest]

Hi Fran,

I don't want to scare anyone considering enbrel which can be a

wonderful med and in fact I will be trying it soon. I did think you

would be interested to hear that my Rheum told me she has a 40 year

old female patient whose heart was fine before Enbrel and now she is

suffering from congestive heart failure. It turned out to be a valve

problem . They reported it to the the drug company and my rheum is

almost certain the enbrel caused it. Just thought you might like the

validation. I guess this is very very rare.

Hope you are getting along OK,

Marti

[Guest guest]

Dear Marti,

Thank you so much for writing me. It makes me realize I might not be crazy

after all. So far I've met one other person who developed CHF after using

Enbrel, but her doctor discouraged her from thinking that like mine did. I

don't know if they are worried about a lawsuit, but that was the furthest

thing from my mind. I can't imagine finding the energy needed for a

lawsuit. Plus by the time I fought the makers of Enbrel, anything I won

would end up going to my great, great, great grandchildren...lol. I only

wish it were listed on the side effects so people knew the possibility even

existed. My doctor now admits that all of the biologics make CHF worse or

at least have the chance of making it worse. He told me they did a study

thinking Enbrel would actually help CHF and they had to stop the study

because so many patients were dying. (Real positive study, was my

thought...)

All I know is between the CHF from the Enbrel, swollen glands from MTX, and

severe respiratory failure and chronic asthma from the Humira is enough for

me to realize they aren't meant for me. I wish they worked for me and I'd

give anything to be able to take them safely. I'm just glad so many other

people have found relief and success from them. At least like you said, I'm

one of the rare cases.

Thanks again for letting me know. The more people are aware of the risks,

the better the chance they can hopefully avoid some of the really bad side

effects when they first begin.

Take care Marti, and I hope you are doing well. Love, Fran

is

[ ] CHF/Fran

Hi Fran,

I don't want to scare anyone considering enbrel which can be a

wonderful med and in fact I will be trying it soon. I did think you

would be interested to hear that my Rheum told me she has a 40 year

old female patient whose heart was fine before Enbrel and now she is

suffering from congestive heart failure. It turned out to be a valve

problem . They reported it to the the drug company and my rheum is

almost certain the enbrel caused it. Just thought you might like the

validation. I guess this is very very rare.

Hope you are getting along OK,

Marti

[Guest guest]

HI FRAN ,

MY HEART GOES OUT TO YOU , ITS TERRIBLE THAT WE GOT TO TAKE THESE

DRUGS TO HELP US LIVE A LITTLE IN PEACE(FROM PAIN) ONLY TO END UP WITH

SOMETHING ELSE ,WERE IS THE HOPE, MY NAME IS ROSEMARY FR NOVA SCOTIA , I

TOO HAVE PSORIATIC ARTHRITIS,FIBROMYALGIA AND CROHNS (NOT THE PSORIASIS YET)

I KNOW HOW YOU FEEL ABOUT TAKING THESE DRUGS THEY SCARE THE HELL OUT OF ME

GOING FOR BLOOD WORK EVERY MONTH TO MAKE SURE THERE NOT DAMAGING ANY THINK

ELSE IN YOUR BODY, I TAKE EMERAN MYSELF BUT THANKS TO YOU ILL NEVER GO ON

ENBREL (IF IT COMES TO THAT) IVE BEEN ON SO MANY OF THESE DRUGS BUT SO FAR

EMERAN WORKS FOR ME (SOMEWHAT)THANKS FOR THE HEADS UP

TAKE CARE LOVE

ROSEMARY

[Editor's Note: Hi Rosemary, sorry to hear you are suffering a geat deal but I'm

glad that Emeran provides you some relief. It might be a mistake to rule out

Enbrel simply because one person (or a few) are allergic to it. It is a miracle

drug for many people and some on this list are now enjoying a wonderful quality

of life due to it. Please research all of your medical options thoroughly and

discuss each of them with your doctor before you reach any conclusions. Your

body is different from Fran's and will likely react differently to Enbrel than

hers did. In any case, this is a very personal decision and I know you'll make

the right choices for you. One request, please: Could you please send future

messages in lower case rather than all upper case (unless you have a vision

problem)? Internet etiquette has come to generally accept that the use of all

capital letters is the equivalent of shouting at the reader. I am sure that is

not your intention, but it is difficult for most of us to read posts that are

written entirely in upper case. If you have a vision problem, we'll certainly

understand. Thanks in advance, and I hope you find a medication that will take

your pain away. Kathy F.]

RE: [ ] CHF/Fran

> Dear Marti,

>

> Thank you so much for writing me. It makes me realize I might not be

crazy

> after all. So far I've met one other person who developed CHF after using

> Enbrel, but her doctor discouraged her from thinking that like mine did.

I

> don't know if they are worried about a lawsuit, but that was the furthest

> thing from my mind. I can't imagine finding the energy needed for a

> lawsuit. Plus by the time I fought the makers of Enbrel, anything I won

> would end up going to my great, great, great grandchildren...lol. I only

> wish it were listed on the side effects so people knew the possibility

even

> existed. My doctor now admits that all of the biologics make CHF worse or

> at least have the chance of making it worse. He told me they did a study

> thinking Enbrel would actually help CHF and they had to stop the study

> because so many patients were dying. (Real positive study, was my

> thought...)

>

> All I know is between the CHF from the Enbrel, swollen glands from MTX,

and

> severe respiratory failure and chronic asthma from the Humira is enough

for

> me to realize they aren't meant for me. I wish they worked for me and I'd

> give anything to be able to take them safely. I'm just glad so many other

> people have found relief and success from them. At least like you said,

I'm

> one of the rare cases.

>

> Thanks again for letting me know. The more people are aware of the risks,

> the better the chance they can hopefully avoid some of the really bad side

> effects when they first begin.

>

> Take care Marti, and I hope you are doing well. Love, Fran

>

[Guest guest]

Dear Rosemary,

Thank you so much for your sympathy and kind words. When I shared my

experience with everyone on Enbrel, I didn’t mean to stop you from trying

it. I just wanted people to know that it does have side effects for certain

people. I know I am among the minority of people who have such bad

reactions to the new drugs on the market right now. I know the side effects

are scary, when death is a side effect you can’t help but sit up and notice.

But the odds are still on your side when you do try Enbrel and it has been a

miracle drug for so many people. I would hate for you to pass it up just

from my experiences when it might be just the thing you need to feel much

better.

I know we all have to make our own decisions, like Kathy stated. My main

concern was a lot of the side effects I had weren’t listed or told to me

before I took the drug. So I wasn’t looking for those types of side

effects, and I think the doctors and the drug companies need to be more open

and honest about the side effects. But again, most likely they know the

chances of a side effect are rare and don’t want to scare the patient before

they even try the new drug. It’s a tough decision on whether to try it or

not. Of course, I wish I hadn’t taken it, but looking back with all the

information I had I made the best decision I could at the time. Even with

my horrible experience with Enbrel, I went ahead and tried Humira praying I

would be ok with it. It turned out my reaction was even worse and it took

me twice as long to recover from the effects of Humira. I can honestly say

I don’t plan on taking any more of the new biologics since I think my system

is just allergic to them.

Even with the problems I had, my rheumatologist would still try another one

on me if I would let him. As bad as PA is and as miserable it makes me feel

and even with all I’ve lost from being sick, I realized I was much worse on

the drugs than without them. I had to learn the hard way, but that is the

kind of person I am anyway. I know I would have tried them hoping they

worked for me.

Hopefully, as more people try the drugs and we learn more about them, they

will be able to identify the people who might be at risk of allergic

reactions. That way they could take precautions before they took the drug

and be ready if the side effects did hit. I personally think it has

something to do with asthma and people who have more allergies than most,

but that’s just my own opinion.

No one can tell you what to do on medication and you have to be comfortable

with what you take. I really didn’t mean to scare you, that was never my

intention. I only wanted people to be aware that these things can happen

and to be ready if they did happen to you. There still is no real “proof”

that Enbrel caused my congestive heart failure, even though I believe it

did. But again I may be wrong.

I’m so glad you have found a drug that does help you. I have never heard of

Emeran. Maybe that is one that might help me and I’ll have to see if it is

something I can take. I hope your pain lets up and you have a lot to deal

with as well. Fibro can be a full time disease by itself as well as Crohns.

Take care and write me whenever you want. We are here to support each

other, since that’s the real meaning of a support group. Love, Fran

Re: [ ] CHF/Fran

HI FRAN ,

MY HEART GOES OUT TO YOU , ITS TERRIBLE THAT WE GOT TO TAKE THESE

DRUGS TO HELP US LIVE A LITTLE IN PEACE(FROM PAIN) ONLY TO END UP WITH

SOMETHING ELSE ,WERE IS THE HOPE, MY NAME IS ROSEMARY FR NOVA SCOTIA , I

TOO HAVE PSORIATIC ARTHRITIS,FIBROMYALGIA AND CROHNS (NOT THE PSORIASIS YET)

I KNOW HOW YOU FEEL ABOUT TAKING THESE DRUGS THEY SCARE THE HELL OUT OF ME

GOING FOR BLOOD WORK EVERY MONTH TO MAKE SURE THERE NOT DAMAGING ANY THINK

ELSE IN YOUR BODY, I TAKE EMERAN MYSELF BUT THANKS TO YOU ILL NEVER GO ON

ENBREL (IF IT COMES TO THAT) IVE BEEN ON SO MANY OF THESE DRUGS BUT SO FAR

EMERAN WORKS FOR ME (SOMEWHAT)THANKS FOR THE HEADS UP

TAKE CARE LOVE

ROSEMARY

[Editor's Note: Hi Rosemary, sorry to hear you are suffering a geat deal but

I'm glad that Emeran provides you some relief. It might be a mistake to

rule out Enbrel simply because one person (or a few) are allergic to it. It

is a miracle drug for many people and some on this list are now enjoying a

wonderful quality of life due to it. Please research all of your medical

options thoroughly and discuss each of them with your doctor before you

reach any conclusions. Your body is different from Fran's and will likely

react differently to Enbrel than hers did. In any case, this is a very

personal decision and I know you'll make the right choices for you. One

request, please: Could you please send future messages in lower case rather

than all upper case (unless you have a vision problem)? Internet etiquette

has come to generally accept that the use of all capital letters is the

equivalent of shouting at the reader. I am sure that is not your intention,

but it is difficult for most of us to read posts that are written entirely

in upper case. If you have a vision problem, we'll certainly understand.

Thanks in advance, and I hope you find a medication that will take your pain

away. Kathy F.]