Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Who's on Enbrel

I just wanted to continue the Enbrel threat but seems no one is submitting anything. I want to know who is on Enbrel med and how they are doing. Please..

Dan

Hi, Dan,

Sorry we haven't been very helpful. I guess not submitting anything is one of the side effects of Enbrel! It's like I don't have AS anymore.

I have been on Enbrel since January 30th of this year. Before Enbrel, I couldn't do much at all. I couldn't get in or out of bed without help. Then someone had to dress me and help me into the wheelchair. Nearly every joint in my body was inflamed; I was always stiff; I was having one iritis attack after another; and I could have sold my soul for pain relief. My story is probably somewhere in the Enbrel thread.

I felt the effects of Enbrel right away. The next morning, I managed to get out of bed by myself. I showed steady improvement for about 6 weeks, and have stayed at that level ever since. I have not needed any pain meds since starting Enbrel. I parked the wheelchair and it is now buried under a thick layer of dust. I still have some pain, and walk with a limp, but I think that is from mechanical damage. I also have not had any iritis since starting Enbrel. Morning stiffness lasts about 15 seconds. I have had no side effects other than being able to walk, and occasional injection site bruising. I managed to redecorate several rooms in my house this year, and I just started back to school last week. It blows my mind to think of it. Only one year ago, I was praying to die just to escape the misery.

If there are any questions I can answer about Enbrel, I'd be happy to, and I'm sure Betty would also. It's just that we're so busy feeling great that we often forget that we have AS!

Hugs,

Cindy

Hi everyone,

Like Cindy, I too have had great, awesome results.
I can remember the days when my daughter could not hug me.

I can remember the days that I thought that I would never go on a roller coaster with my daughter.

I can remember the days that I thought that I would never be out of pain.

I can remember the days when I begged for my next dose of Vioxx, etc.

I can remember the days that my back would hurt so bad that I could not drive

I can remember the days that I walked with a bent over in the mornings.

I remeber the days when I could not cough or sneeze without feeling like a knife cut me open.

and the list goes on and on and on.,,,,,,, I remember when......

but now, all that is HISTORY!! I repeat....HISTORY....

there is no pain
there is no stiffness
there are tons of hugs with no pain
there are tons of fun days running and playing like a child
yes, roller coasters are not a problem
water skiing is not a problem

AS IS ONLY A MEMORY!!!


Betty

PS NO side effects ...but will admit the first 2 months were a little tough, emotionally.
I thought I would be the happiest person on Enbrel; but instead, I went through some depression. I could not understand this. No body ever decided if it was the Enbrel or my life at work.
I would cry for no reason even when I was doing my favorite things!!

Also during the first 2 months, I got sick a lot. Don't know if this is related. Since that time, I have not even had a sniffle. I have been on Enbrel for 8 months.

Blood pressure also went up within the first 5 weeks. Had to go on BP meds. Again, it is thought that this is unrelated to the Enbrel. Within the last 8 months, I know at least 7 other people at work that has had to start taking BP meds. Work is very stressful.

Hope this helps!!

OK, Betty and Cindy,
Thank you very much for answering my post. I read the SIDE EFFECTS of Enbrel and I am getting scared. DEATH for one. I Don't think so. All I need to do is get my precription to the pharmacy and I start on the shots. But, ladies I have taken lots of chances in my life. But to take sometime that will end my life....huh duh...I volunteer in the navy during war......huh....didnt help my AS.....Well ok I guess after your very convinceing stories I guess I can start on the shots. Thanks for helping/pushing me to get on them.....I am on my second week of pain. And The bones are just crunching away.....I will start today with Enbrel.....Love ya gals

Dan

Betty,
Funny you mention your blood pressure. I used to carry a 120/78 pressure....Then my pressure dropped to 98/70 or the highest was 100/72. Its been like that are about 7 years. The doctors don't know why. I guess if the Enbrel bring my blood pressure up I will feel better.....a stronger blood pressure...hehehe....tks Betty

Have a wonderful Texan day..
Dan

Dan, ...yes give it a try.
I too had read about the possible side effect of death...but I felt that with AS I was already dying. I choose to go pain free rather than see my life crumble before my eyes.
Too me the biggest side effect is not death but instead living life to it's fullest

Betty

Thank you Betty for putting it that way. I guess I rather use Enbrel and live life like it should be lived.

Monday the pharmacy promise my Enbrel. I will let you know how its works on me.

thanks again
Dan

Good Luck with the Enbrel Dan.
I hope you have positive, lasting results like some of the others.
I wasn't one of the lucky ones. I was on it for 5 months the beginning of this year and all it did for me was make me feel tired and heavy.
I would wake up feeling like I weighed 500 lbs and by evening I had gained 500 more.
Doc said it wasn't making a difference and took me off from it.
The only thing that has worked for me is the metho, but because of my liver, we had to stop it.
Now I am on nothing but prednisone and pain meds.

Keep us posted on how you do.
Hugs,
Lisa

Hi LIsa,
You know that I was on Kineret shots and my doctor told me the same. He said that the shots were not doing what it suppose to. But, I felt a bit better with the shots. One thing is that I kept gaining weight. I use to weight 150 and now I weight 185. Anyway, thanks for wishing me luck. I am waiting today for the pharmacist to call me and tell me that they have the Enbrel. Ok.......you take care..bye
dan

Hey Dan,

I'm also on Enbrel. I was on the placebo during the first six months of the study. I'm on week 8 of the real thing! I'm sleeping like a baby! I still have some pain but compared to my usual pain and stiffness during our winter rains...I feel great. I've had frequent injection site reactions. 2" diameter raised red welts, occasionally bruised but not painful. I inject myself and it was very easy to get used to, I sometimes give my kids a thrill and let them "shoot" me.

Hope it works beautifully for you.

Take care,

Kirst