Ankylosing Spondylitis Support Group

From what I've been led to believe is getting started on those drugs early is the only chance you have of not ending up like me. It's too late for me to start at 54 but I do believe if they had those drugs years ago and I'd known about them I'd be on them like butter and jam on toast. Your young enough it may make a world of difference for you the alternative seems to be pain pills for life. Good luck to you Tim it's a big decision others will tell you green tea and extract of toad taken at the stroke of midnight but I don't know about that.

Thanks for the input. So has your spine fused, or has the pain just gotten worse? I guess that I just want to get as much info as I can to make an educated decision. It's a tough one. I kinda feel like I'm damned if I do and damned if I don't!!!

well tim all i can say is go for it,iv being on humira for 2 years now amd all i can say is wow if it takes 20 years of my life then so be it, the quality of life i have now is unbelivable i feel like a 19 year old ....im 42

I totally agree with dermot. I only wish I had found it faster. I am currently 31 weeks pregnant and STILL taking it. I often wonder where I would be if I had not taken it. I know there are tons of warnings on the box...i worried to. But the relief I felt was amazing...im serious...life saving. I know that my quality of life and my sanity would be shot by now. The only time i have had a relapse is when I have not taken my shot. Like right now..I am trying to go as long as I can so that I am not taking to much while pregnant. I have to stop it at 34 weeks anyway since i will have an operation to have the baby. I do listen to some of the warnings...when I get sick I hold off on my shot. Any colds..I just wait till the worst of it passes. I tried everything. I do not need surgery..mine is clearly just AS. I did every therapy every type shot you name it I did it....Humira is the only thing keeping me going. I wish you all the luck...give it a try....just make sure they do the TB test prior to starting..that was the only thing my Doc insisted on.
Melanie

Humira is a miracle drug. I'm 15 years old with AS and many other diseases, and I was on it for about 5 months. However, Humira now has to have a new Black Warning Label on it for teenagers and children, because it looks like it may be causing many kinds of cancer in children. My doctor explained to me that because they have no idea if the cancer is symptomatic in children with the Humira or if it may be the AS causing it, they highly recommend children to NOT take Humira unless they are willing to be at higher risk for cancer.
Personally, before I was on Humira, I was horrible. I had severe depression from my pain and constant fatigue. I also suffer from Fibromyalgia, which made me have horrible memory problems and even more pain, sensitivity to pain, more fatigue, and so on so forth. When I started Humira, I was expecting the worst. It helped SO much with my fatigue. I quit taking 3 naps or more a day, and I was able to go hang out with my friends and participate more in things I couldn't before. I had to switch to online schooling because of my inability to stay in school for a whole day, but I was able to be more active than before. I was still using a wheel chair in public when it was offered to me, which was quite often. But initially, I got better.
And now that I'm off it, different story. My pain in my back spread, but didn't get worse. My knees, neck, arms, legs, and feet are constantly in pain, and I'm very stiff. I have more trouble bending down to pick up clothes off of my floor, and I'm learning to use my Monkey Toes to get things I can't reach with my hands. I'm not depressed, but I have a constant state of the blues.
Basically without telling you my entire story, HUMIRA IS AMAZING. It didn't completely take my pain, but it made me more mobile and able to do things I couldn't do before.

I recommend this drug to anyone who has AS or other rheumatic disorders that can benefit from it. =) good luck to EVERYONE.

Hi Tim,

I am a 27 year old female and was also just diagnosed with AS and my doctor has also recommended Humira. I have tried other forms of treatment, such as Acupunture and Chiropractic. It did not help. My condition progressed and I now feel pain, not only in my hip, but also my spine and rib cage. I actually found a Rhuematologist I feel like I trust and have decided to go on Humira. I am currently on celebrex in the meantime and it has somewhat helped, but I wake up with very little spinal mobility.

Have you started going on Humira? If so, it would be great to hear what you think. I start in the next couple of weeks and will let you know if it has helped.

Thanks
Erica

Erica,


I have not yet started the Humira. I went to get a second opinion and the new Rheummy want's to try all other options first. Which happens to be Celebrex for now. I'll probably try a different med after the next follow up because like your case, it isn't helping with the whole issue. Some of my symptoms are relieved, but not all and not to the degree that I am as comfortable as I would like to be. I hope you have good luck with your treatment, and I'll keep you up to date on mine.

Tim

Good morning, My name is Tony and I have A.S. and I think you should try Naproxen first and then think about taken a TNF medication like Humira. I was told to take all those crazy drugs and about two years ago I was diagnosed with Lymphoma Cancer due to Remicade. When i first strated taken Remicade no one mentioned that it can cause Cancer. I was very mad about it for a long time but I am in remision and I coach sports on my off time and I have good days and sometimes there is bad days. As long as you stay active you will feel better. Try swimming or just walking even when you feel terrible try to get up and shake it off. I know i feel terrible from midnight until I get up in the morning. Once i start my day i feel alot better. Again, A.S. will make you feel depressed but you have to stay positive and stay busy!!!!!!!!!!!

God Bless,

Tony

My name is nick i am a 42 year male with as i tried all the medicines for years and they never did any good i have been on humira since january and its been brill ever since.nick