Hi Lila
I've been on Humira for about 16 months now and it's been very helpful. I still need NSAIDs but overall I can live a normal life (I hike, ski, cycle, etc so am fairly active). We all respond differently to various drugs so there is always a risk. If you're in constant pain and can't increase you're NSAIDs any further (I was on double the max and still in pain) you don't have much to lose. Life with pain is terrible. Why don't you try it for a few months? You can always stop if it's not helping. Best of luck.

@ RoniG: Thankyou, as all of us know being on something new is scary. I talked to my pharmacy today and they dont carry Humira, and i have to go through a speciality pharmacy, so this ought to be an interesting adventure, just being able to get the medicine. haha.
Thank you for the words of advice, they were helpful & sweet.
I hope you have a Great weekend. I am glad the medication has worked for you, It worked for my aunt too for a while, But she had other stuff going on too, so thats probably why it didnt work long term for her. :) Hugs!

I'm in the same boat as you, LilaWest. I'm super scared. I've actually been ok, but just had a huge flare up and my knee is really swollen and my back aches and I can't sleep much at night. I'm considering starting remicade next week because I'm just miserable.

Did you end up starting Enbrel? How are you doing on it?

I welcome any comforting words or thoughts on the various TNFs. Thanks!

I was very scared to start any sort of "biologic". To make matters worse, I read the white paper on one of them: scared me to death! Luckily however I have a friend who works in research into the long term effects and dangers of this class of drug. Her project is studying people who have been on these for 10 to 15 years! When I told her I was about to start taking Remicade she told me not to worry. "but cancer runs high in my family!" I said to her to which she responded," Stephenie, don't worry, this stuff is safe, you have no need to worry. I hope this helps.

Greetings! Just wanted you to know that I am just diagnosed at 52, been dealing with symptoms of AS since 25. Just found out last week. Starting Remicade infusions next week. Been doing a lot of soul-searching, praying, and research to understand what is ahead. What I do know, is that you must not give up on life, and let pain rob you of your joy. If that means taking new meds, leading a new lifestyle, you will be a new person...even though it may be a rough go from time to time! Fear is a stresser....stress makes AS symptoms worse, so be positive, think positive (as best you can) and surround yourself with positive people. What I have decided to take all of this is as a blessing, as crazy as this sounds. Finally, I know what I have, now I have choices on how to "deal with it" instead of if "dealing with me", as things have been for so long. On the cancer side, just keep staying on top of it, insisting that your docs keep up with your blood work, etc., It is true, that the risk is much lower to get it from the AS treatments, and the fact is your quality of life will get much better...you just may have to go "the storms" a bit more before you see the "rainbow"...but it's coming!
Will keep you in my prayers. If you feel comfortable, please keep me updated as to your experience...it is helpful to me as well! God Bless!

Hello, I'm new with the AS diagnosis. Just found out two days ago! My other rheumy thought I had RA, and didn't really search for other answers. This new doctor saw it right away and gave me my first humira shot right there in her office!

I'd like to hear how the original poster is doing. PG13, I really liked what you said about how we have to put fear aside and go on to live our lives despite having this disease. I choose to have a good quality of life, and if a biologic allows me to do that, then I'm going to give it a try. I know that living this other way hasn't worked out too well.

Lila,
I started Remicade about 4 months ago and made the mistake of reading the "white pages". NEVER read the white pages! They make aspirin sound like its a true killer. Just so happened that a friend of mine is a researcher on the Long term effects of Remicade. By that I mean those having taken it for 15+ years. When I told her I was about to start it and told her about my fears, she told me not to worry about it. According to the research she was involved in there was nothing to worry about. I recognize that Enbrel is not the same as Remicade and having said that I think the lesson is the same. 1. Don't read the white papers and ask around for those researching the drug's effects on people long term.

My Dr. said I have AS but not sever inflammation. I'm not on anything but am always in pain and super anxious. When should I get on medication? I'm worried about causing permanent damage. Also sorry tmi, I have celiac and worried all this will cause more intestinal issues.

Hi new here too. My doctor has put me on Humira and I am also waiting for my insurance to authorize it. He is leaning towards an AS diagnosis, but won't until he sees how Humira works.