Re: Mom and Sister both have RA

[Guest guest]

About the side effects...

If your quality of life is that bad you have to ask yourself would it be better

to live like this or take a minute risk that the medicines could cause real

havoc. Aspirin can kill you if allergic or compromised. If you want to debate

the point of Enbrel, that is a twice a week shot, it doesn't stay in the body as

long. Occupational therapy may help her relearn daily tasks to make things more

manageable. There are so many devices out there for arthritic patients. But

the choice has to really come from her to take initiatives.

Life is a bummer, no doubt. I developed my RA a month after having my son.

What a joy that was having to work and take care of a newborn. 11 years later I

am making appointments for atleast 3 joint replacements. Three years later my

DH develops mild multiple sclerosis symptoms. Last year my son developed Type 1

Diabetes. Our whole darn family is cursed! Your sister will only have herself

to blame if she doesn't take advantage of what is out there. Yes, none of the

medicines could work, but if you are TRULY in that much pain, are physically

able to take the medicines and have resources to take the medicines why wouldn't

you try? I have had adverse reactions with medicines, ranging from rashes to

trouble breathing. None of them are fun. But if I didn't try they could have

very well been my miracle. I wasn't going to take that chance.

Shandi

[ ] Mom and Sister both have RA

Hello I have two family members with RA. My sister is in her late 40's

and the last year she has had an abundance of flare ups. More bad days

than good. She is seeing a doctor is currently on remicade (sp) it

just isn't working. I hate seeing her so depressed. Her boyfriend

seems to have put the brakes on marriage...and she is thinking it is

due to her sickness. He is very supportive but maybe the progression

is a red flag or so she thinks. The doc is talking about starting her

on Embrel, my sis is the type who reads about the side effects and gets

her self worked up in a tizzy over it. She says and please excuse me

that if her life gets to the point she can't even wipe she sees no

reason to go on. Like I said she has just seem to have one problem

after another..she just had surgery for carpol tunnel(sp), her

mamomgram just came back and she is being ask to go in for further

test...so she is really depressed. I have asked her to research her

disease but I think it is even hard for her to try the internet, her

hands are so bad right now. Please give me some input on how I can

help her. Thank, LYNDA

[Guest guest]

I would urge her to try the Enbrel. I have been on it for over two

years, and it is effectively controlling my pain and inflammation

without any bad side effects. I have been where she is with the wiping,

LOL, but not since I've been on Enbrel. We have to weigh the risks of

the meds against the benefits that we get from them. I have also had

the thing with being called back for more tests after a mammogram. I

had to wait for a couple of months, over Christmas at that, before the

appointment. That time I had microcalcifications that a needle biopsy

showed were not cancerous. A couple of years later I again had

microcalcifications and had another biopsy. I wasn't even worried that

time, but they were cancerous that time. But the cancer was caught very

early; I had a lumpectomy instead of a mastectomy; five years later the

cancer has not returned; life is good.

Sue

On Thursday, August 3, 2006, at 09:25 PM, helpdebra wrote:

> Hello I have two family members with RA. My sister is in her late 40's

> and the last year she has had an abundance of flare ups. More bad days

> than good. She is seeing a doctor is currently on remicade (sp) it

> just isn't working. I hate seeing her so depressed. Her boyfriend

> seems to have put the brakes on marriage...and she is thinking it is

> due to her sickness. He is very supportive but maybe the progression

> is a red flag or so she thinks. The doc is talking about starting her

> on Embrel, my sis is the type who reads about the side effects and gets

> her self worked up in a tizzy over it. She says and please excuse me

> that if her life gets to the point she can't even wipe she sees no

> reason to go on. Like I said she has just seem to have one problem

> after another..she just had surgery for carpol tunnel(sp), her

> mamomgram just came back and she is being ask to go in for further

> test...so she is really depressed. I have asked her to research her

> disease but I think it is even hard for her to try the internet, her

> hands are so bad right now. Please give me some input on how I can

> help her. Thank, LYNDA

>

>

>

>

>

>

>

>

>

[Guest guest]

Shandi,

I think she is more worried about becoming even more disabled after

taking the dangerous meds that cause strokes and blood clots, and

developing even more illnesses like MS which some studies say Enbrel

causes, at least that was my worry anyway.

However, many times I bit the bullet and tried them anyway but only

when I was ready mentally, sometimes asking relatives if they would

take my daughter in case some of the meds caused irreversible

problems.

I had trouble breathing with the MTX but switched to the injections

and now have trouble with elevated liver enzymes and now have repeat

infections of unknow source. So I guess it just wasn't meant. Can't

keep the chest pains away after clot last year also. I am having

chest pains as I type this msg. She may not be mentally ready to

deal with all of these extras or the risk in exchange for little

relief.

Or it could be she experiences great relief. It's a gamble.

I did the Arava too with the Enbrel and the Arava almost killed me

and the Enbrel gave me swollen top lip (looked like Homer Simpson the

cartoon) with hives all over my face many times after using it

awhile. They just gave me some claritin and sent me home still on

the enbrel. I did that for 4 years then switched to kineret, then to

remicade, then to humira, then back to enbrel...so on and so forth.

Got injections in the hips with the corticosteroids many times, and

also in the knees. The female doc at the time kept saying the

painful hips was a mechanical from the knees, so injected the knees --

now i know I was losing my hips, so you never know. It's truly a

gamble. But each time you have to be mentally ready to take that

gamble, to go to the next step and we cannot be ready in someone

else's place. She has to get there and I believe she will.

But in the end, I agree with your way of trying it just in case it is

my combination therapy that will work for me. I just don't know if

we can all get to that level of risk-taking at the same time.

Peace

Ebony