Spondylitis Association of America Forums General Discussion Men Only Message Board which way to treat AS?

Hi All,
I just found this site. I'm 54, divorced, and was finally diagnosed w/AS a little over a year ago. I had many painful AS symptoms in my 30's and 40's and most dr.'s said it was either nerves or a lumbar neuropathy that was causing the problems.(they didn't have a clu...they were way off). In those days I would recover after a flare-up in a few days usually and feel ok the rest of the time. Not so however when I turned 53. The symptoms haven't eased since the onset over a year ago and I am in constant pain (neck, shoulders, back, hips etc.) My rheumatologist wants me to start on humira, but the side effects are a big concern as well as the drug being just recently approved .I don't feel comfortable with taking it at this point. I take 5 mg prednisone and would like to get off of it. I've tried tapering down to even 3/4 of a pill and I get worse. I've gotten no relief from trying NSAIDS, & celebrex either. At this point I'm feeling kind of stuck as to the best way to treat my AS. Are pain meds like vicodin a better way to go than prednisone if not taken every day? I was told by my GP dr. that its not good to continue on prednisone after a year of taking it. The rheumatologist just wants me to start the humira and has no alternative suggestions for treatment. He is not in favor of the prednisone either because of the long term side effects. Not sure what to do at this point. Seems like the treatment is just as big a problem as the AS. :rolleyes:
Thanks in advance for any input.
Jonathon

Jonathan, I, like you was diagnosed recently (1 year ago) but looking at my medical history, have probably had this disease since late teens or early 20s and am now 58. I have been taking HUMIRA for about 4 months now, along with a new anti-inflamitory called LIMBREL. Additionally I take CYMBALTA which is an anti-depresant with pain relieveing qualities.

The combination of the three seems to help as I am still working full time and exercising 4-5 times a week. That is the other suggestion by the way, weight training being sure that you don't adversly stress your lower back or hips.
mike

Hi Mike,
Thanks for posting. Glad to hear you are doing well on the Humira and the other 2 meds. It sounds like you found a good combination that works for you. Thats xlnt. I may end up trying the Humira down the road, I'll see how things go.
These days I walk for exercise which is about all I can do with the stiffness and pain, (aside from streching). I'm hoping to do more types of exercise in the upcoming as the pain will allow.
Thanks again for the info.
take care,
Jonathon

Jonathon,
I was thinking exactly like you are right now. My only goal was exausting all my options. I did and ended up taking a bioligic (embrel). The last medication I wanted to see if it would work was methatrexate. Now I am on all of them, but I have AS and Reiter's. I am doing quite better. I am not going to spell these correctly, but I am on sulfasalizine, nabutome, folic acid, methatrexate(the max) and embrel.
I am 31 years old. It came down to a quality of life issue and that made me over look the bad side effects from biologics.

RIP,
Thanks for posting. Glad to hear you're getting some relief with the meds you're taking. Sounds like they are doing a good thing for you.
I'm still staying the coarse for now with prednisone for the time being. I may decide to give Humira a try later on, but for now I just can't bring myself to make that leap. As you mentioned, quality of life is really important too, so its really a tough choice to make. I think the one problem thats the biggest for me is the immune system thing. If Humira didn't mess with that I think I would go for it.
Guess I'll just go day to day for now...and wait & see as time goes on how things go.
Thanks again,
take care,
jonathon

I think the immune repression is trumped up. It is different for eveyone. As of Jan this year I have not gotten sick nor noticed any wounds that heal slower.
Some other studies I have read state that only people with severe rheumatiod arthritis are the people getting lymphnoid cancer. Really the numbers are very low 4%.

Now matter what it is still a personal decision.
I am not trying to stray you any other way, just sharing my thought process and experience.

My experience with HUMIRA is similar to Rip's in that I have not noticed any increase in infections, etc. I will have to be honest and tell you that I am also taking a monthly IV infusion of immune antibodies as I had very little immune system when tested a year ago. On the other hand, this treatement only brings me back to a more or less normal level so if you don't have this particular problem, it shouldn't matter.
mike

Rip
I think my rheumatologist is waiting for me to just say I've had enough lets try the Humira. Which may well happen if I reach the end of my rope with these symtpoms. There really aren't that many options....seems like its either the pred or the Humira...the pred doesn't really get rid of my symptoms, it just allows me to function somewhat.....my appt. is in sept. so I'll just wing it till then.
Thanks again.
regards,
J

Thanks Mike,
I guess its kind of a roll of the dice as to how it will affect each person, since everyone has a different situation. Glad to hear the Humira is working for you. I know the pred also represses the immune system....I'm not sure to what degree, but I know its not good either. I'll kind in mind what you mentioned.
Thanks again,
regards,
J

I meant "keep" in mind lol