Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group G'Day All! Long time no post.........

Been AWOL for about a year - sorry. Looks as though a lot has happened since then? Certainly a lot of new faces, but thankfully still some familiar ones.......

I've been on (and off, for a few weeks when my CRP suddenly shot up and I had to hit the steroids hard) Enbrel for about a year. It has definitely helped, along with MTX, but not as much as I'd hoped, so my rheumy has switched me onto Humira. I haven't actually started taking it yet though; after reading the looong list of possible scary side effects I want to talk about it first.......Still waiting to hear back from rheumy - hopefully on Monday now.
The thing that particularly leapt off the page at me was "bone necrosis"
Having already undergone 3 operations to remove dead bone from my jaw (which is still painful), I'm terrified of the possibility, however small, of starting up that problem again. (I wasn't too thrilled about the possible increased risk of carcinomas either, but that goes with the territory I guess. Have already accepted it with Enbrel and MTX

Anyway, I shall now go back to reading through all the posts, or as many as I can, in and effort to catch up with you all.
It's good to be back!

Hugs,

Sue

Hi Sue,

Glad to see you back. It's been a while. I hope you can get some relief soon. Please keep in touch. Missed you!

Glenn

hi sue,

good name by the way!

if you've been gone for a year, then i'm new since then (came here in january)...so just wanted to say hi.

sue

Sorry to read that you had insufficient success with Enbrel. I never mustered the courage to even try it so good for you for at least giving it a go.

Good to see you pop in even if its just for a brief update.

My gang of girls turned six this past January and they are my best medicine. Motivate me to keep moving and get through the pain long enough to make it to the next day.

I can't imagine all you've been through with your jaw. I have ample TMJ issues and they are exhausting. I can't imagine how much you must have endured.

Best wishes to you.

Hiya Sue,

I was thinking of you justa day or so ago!

Dave

Hi Sue

So good to see you again.
Sorry the enbrel wasn't the greatest for you. I fully understand your reluctance regarding side effects. I hope your doc can give you sound advice. I find that mine really plays down any medication side effects and that allways leaves me still wondering.
Best of luck in your decision. Hope that the Humira or even something else works better for you. I know you've had more than your share of difficulties.

Maggie

Hey Sue good to see ya back home..I know what you mean about the Enbrel thing. After being on Remicade, Enbrel is pretty weak. But i is better than the alternatives..lol I've got so I don't read all those side effects..lol They just scare ya. Most of the crap that we take for AS would probably kill a regular person..

Good to see ya around..
Keep Kickin'AS
Chris

Hi Glenn

Missed you too, thanks. Glad to see you're back home after your surgery. Hope you continue to make good progress.

Take care.

Hugs,
Sue

Hi Chris! Good to be back - thanks. Glad Remicade is helping you.
Yes - I agree about the side effects - any "normal" person would run a mile, but they don't have to live with AS! It's just that, having had a necrotic jaw in the past I'm so scared of starting it up again.....Took me 3 ops and 18 months or more of huge doses of antibiotics to get rid of it, and it's still "iffy", especially the day after I have MTX, or if I have to go back on the steroids
I'm having serious doubts about Humira - at least it's not one of the (named) side effects of Enbrel......I guess it's a case of "the devil you know".....
Will see what, if anything, my rheumy comes up with.


Take care.

Hugs,
Sue

Hi Maggie! Great to see you too How are things with you?

I feel like a real wuss (?) about this, but if it wasn't for the "necrotic bone" thing I'd gratefully give it a try with barely a backwards glance
Been there, done that, etc., and no wish to repeat it! However, I really would like some more relief from the foot pain I'm now getting, which the Enbrel doesn't seem to help at all, and the only other option seems to be surgery, which I'm also not keen on, as you can imagine

I hope my rheumy has other options up his sleeve too - thanks. (Not holding my breath tho!)

Take care.

Hugs,
Sue