Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group new to as

Hi Neil,

I'm still pretty new here myself and I love the information I've found here. I was also just given Humira (one of the major anti-TNFs like Enbrel) and I LOVE IT!!!! Someone at work, who has seen me in the past walking the aisle in pain, just said today that I look like a new person.

I hope you find the same success!

John

Hi Neil, welcome to Kickas. This is the best place to be so hang around, get to know us. There is a wealth of information here.
Cindy

Hello Neil,

Welcome to KA! I'm very sorry to hear that you're new to AS, but equally glad that you found KA and you're new here! As you'll see once you've had more time to poke around, the anti-TNF drugs have been a huge help to many people here. They haven't worked for everyone, unfortunately, and yes, some people have had adverse reactions ranging from mild to very severe, but on the whole, they have helped far more than they haven't. Speaking from personal experience, first enbrel, and now remicade, have been an absolute god-send for me. I was on enbrel for about 5 years before it eventually stopped working for me, and at that time, I switched to remicade. That was roughly two years ago, and it's just amazing how much remicade has helped me. Just recently I had to wait five weeks past the point I was due for my remicade thanks to insurance and doctor nonsense, and those five weeks were very unpleasant, especially the fifth week. Once I did get the treatment, I literally felt better the same night I had it, and by the very next day, I was back to about 90 percent of my "normal" self. Here's hoping it works that well for you!

Again, welcome to KA!

Brad

Hi Neil!

Welcome! I was allergic to Enbrel and so now I follow the No Starch Diet (NSD). I really hope Enbrel works for you! Keep us posted! Good luck and take care, friend.

This is a great place, its the best part of having AS!

-Donette

Thank you for your replys! its really good to see so many of you have got pain releaf from anti tnf treatment.I started to beleave i would be in this state the rest of my life,and its good to know there are many people in the same boat to talk with and gather infomation on how to make possitive changes in the fight against as.looks like i got some serious AS kicking to get stuck into.iv allways strugled to keep a healthy weight on and started to eat lots of starchy foods trying to gain weight and now i know its not a good thing to be doing.so its a none starch diet from now on. yummy!

the AS has stoped me walking now for the last 5 months,as my right hip has worn down and iv just been told i need a birmingham hip replacment, but i carnt have it done when im on the tnf treatment as the risk of infection is high so its going to be anti tnf first then a waiting list of about 4 months for the hip replacment.iv coped this long so another 4 months will be a doddle.really excited now about the treatment after reading others comments.so uplifting thanks again and i wish better health to all ka members .so so glad i found this site.

Hi! Glad you found us, but sorry you had to...

This place has a wealth of info, so do explore the different forums and don't be afraid to ask lots of questions. It is also a wonderful place for support; we get what you're going through, especially when the rest of the world doesn't... Now that you know what it is you're up against I hope that you and your medical team can sort out a plan that tames this beast.

Hi Neil and welcome to KA.

I'm glad to hear that they are treating you aggressively by starting with a biologic. I was on Remicade for 4.5 years, but switched to Enbrel 3 weeks ago. These meds have given me back my life. There are risks, as you say, but the main one seems to be infection. As long as you wash out any cuts with hot water and soap (and tea tree oil, which I swear by), and wash your hands before touching your eyes, nose, ears or mouth (and before eating), you're doing all you can to prevent that. I've had one infected cut and one bad chest infection, so I figure I'm doing all right.

As for the more frightening side effects, try to look at the actuals. Is your chance of being hit by a bus greater than your chance of developing a certain cancer while on a biologic? To my mind, if it is, then the biologic is a risk worth taking.

I hope the Enbrel helps. Keep asking questions here, do your research and get ready to laugh when our resident clowns come around.

Hugs,

Its 10.55am and im sitting in the day room in the hospital,i have just been told im getting my first jab of embrel TODAY and then i can go home and start a whole new out look on my life,i know now not to count your eggs before their layed,but still im kinda excited in a weired sort of way.thank you for all your posts its cool to see how you are all coping with as,its given me a great sence of hope. NICE 1

Neil, that's great news! It is definitely ok to be excited about this because if the enbrel works, you should see some definite improvements. And here's hoping it does work--I'll be keeping my fingers crossed!

Brad