Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications Enbrel Study "new thread"

Ken,
first ....
WELCOME TO THE KICKAS FAMILY

I am glad that the Enbrel has really worked for you. From your story that is such a major improvement. I missed getting into the study by two days But love checking out this thread to see how it is helping so many people. Will be nice to see what happens after this study is done. Hopefully the price of the med will come down so that most can continue on with it.

Take care and keep posting

Pam

"Just like moons and like suns, with the certainty of tides. Just like hopes springing high, Still I'll rise." Maya Angelou

Welcome to KickAS!!! Thanks for sharing your story. I've been on Enbrel for 21 weeks. I love what it has done for me. I went from a wheelchair to walking; from suicide-level pain to living again. My only wish is that I could have had it sooner before so much damage had been done. Welcome again.

Hugs,

Cindy

The only thing that helped with my pre-Enbrel pain was narcotics. You just have to try to find one that helps. I used to take Darvocet for post partum pain and toothaches; it worked great for that, but did nothing at all for my AS pain. Vicodin would knock the edge off before things got real bad, but I had to take it at twice the dose I was prescribed. I finally broke down and begged and cried for relief, and the doctor begrudgingly gave me 30 Percocets. They were wonderful. I could cope with life, I could hobble around a little, and I could be a mom. I even 3 of them on Christmas Day just so I could enjoy the day. They didn't erase my pain, but they did help. He gave me enough for 2 weeks, but I made them last 6 weeks. The only drawback for me was not being able to get anymore. My doctor is paranoid to prescribe narcotics long term, because of all the legal hoopla here in WV. Quote, "I wouldn't want to take the chance that you could get addicted." I guess it would be better to take the chance on the pain getting so bad I would jump off a bridge, than to take the chance of getting addicted to a pain reliever. There's no way I would want to take them forever; I only took them when the pain was past dealing with. Besides, narcotics kill all sexual drive. That's the only bad side effect I had besides constipation. And that can be dealt with. And once I started the Enbrel, I stopped all pain meds cold turkey with no withdrawal symptoms at all. Must not have been addicted.

I hope you get some pain relief. It really should be a basic human right. The truth is: animals have more rights than women. If an animal was in this much pain, they would have to be put down.

Hugs,

Cindy

Cindy,

Thanks for the reply. I have gone the Viacadin route, and, yes, it takes the edge off. I dislike the idea of using narcotics. In part, it was a practical matter -- constipation rather than decreased sex drive for me . Also, in the back of my mind was the thought, "Okay, if this stops working, what then?"

What I have found that helps are ice packs on the area where the pain is located. This is temporary, symptomatic relief and means I have to feel well enough to get to the freezer.

Best regards,

jcwinnie

Ken,

Your story is so moving. I can tell from the emotion coming through your writing that in a sense this experience has given you your life back. The things you mentioned that you're now able to do, bowling, basketball, and most importantly, playing with your children, well, those are gifts that you can't put a price on.

Live your life during this time to its fullest, Ken. Embrace those things dearest to you, fix the relationships that are broken, and most importantly, love the people that love you with all of your heart.

The future, yours, mine, everyones, is only an wish. Miracles are rare and there's no promise that what works today will work tomorrow. Just remember this: you live right in this very moment, and only in this moment. Your world and those that inhabit it with you are the most important thing, the only thing that really matters. Love them fully and completely - don't hold back.

My very best friend in the world has AS, and his story is just like yours. Since I've known him (4 yrs) he's made a remarkable transformation. He's gone from barely being able to walk to an energetic, enthusiastic man. I've never seen him so happy, yet frustrated, too, because his certain people in his life haven't caught up with his energy yet. But they will, I'm sure. In the mean time, I intend to be there for him, thru thick or thin, when his head aches and his stomach is upset, to talk to, whatever he needs.

I hope you have a friend you can lean on, too. If you do, don't hesitate to let that person know what's going on, the good, bad and everything. A true friend, someone who will always listen and care, can make a very big difference. My friend has made a tremendous difference in my life, too.

Best of everything to you, Ken. Take care.

t

I understand how you feel about taking drugs. I have never taken anything all my life. I didn't know I was allergic to ibuprofen until I was 40. I wouldn't take birth control drugs because I thought they were too dangerous. All that was before my life-long backache got out of hand. There eventually came a time when I had to make a choice whether to live or not live. I tried other NSAID's, and DMARD's out of desperation. After being allergic to EVERYTHING, I tried to go without any drugs. After 4 months, I was going crazy from the pain and lack of sleep. If I had not gotten Enbrel, I had plans to see a pain clinic, and go the narcotic route. I would have supplemented with prunes.

I've tried hot/cold treatments, but when things are bad, it takes more effort to open the freezer than it's worth. And the bad thing about treating AS is this, there is no one treatment that works for everyone. I just hope that you soon find something that will give you some relief. Gentle hugs headed your way tonight.

Hugs,

Cindy

wow, thanks for sharing Ken

Betty (The Energizer Bunny)

Hi I'm new on this. Have been diagnosed at 18 I'm now 40.I've been through all the NSAIDS some helped temporarily but suffer with GI upset. My rhuemy wanted to start me on Remicade but insurance wouldn't cover it, because it's considered experimental. I cried when I got the denial from the insurance co.. How do I get in on the clinical trials for these drugs?
Because I have fusion of SI joints it won't help there but I have limited ROM of my total spine due to intense inflamation of muscles and ligaments there. My rhuemy seems to think I can gain this back with the help of these new meds. But how can I get them, they're very costly. Right now I'm on methotrexate and lots of vicodan. I alos have blood tests which keep showing anemia, I take extra iron but it doesn't help. Any info on getting in on clinical trials would be greatly appreciated!
Thanks,
Becky

becky,

dont know anything about remicade, but given your situation i would suggest the following.

1. stop taking the iron supplements. they will not help your anemia and can make your AS worse.

2. check out the nsd forum for a dietary approach to control your disease.

-ken