Hi. I'm not especially savvy about these kinds of websites so I hope this actually posts! I was recently diagnosed with AS. I'm about to turn 51 and have had back and bowel issues since I was about 15. I guess it's relatively common for women to go undiagnosed for a long time because AS hits men more than women. It's strange how over the years, I just incorporated the pain into my life until in the last year, when everything got so much worse and eventually, unmanageable. Most days feel like a haze now because the pain is just horrendous. MRI explains why! Fat deposits along the spine, inflammation and erosion and some 'squaring' of the joints (not sure what that means). I also have denegerative disc disease which has complicated the picture somewhat.
My rheumatologist has prescribed Humira because I can't tolerate the NSAIDS and am allergic to a lot of the pain meds they've tried. He's also made a referral to a neurosurgeon because I'm getting a lot of nerve pain and he wants to rule out anything surgical. At first, he wanted to hold the Humira until the consult but called me this morning to say he'd changed his mind. He had another radiologist look at MRI and he believes that even if some of the pain is from the degenerative disc issue, the Humira might still give me some relief. Here in Canada, it takes forever for a neuro consult and he's worried to leave the AS untreated.
Sorry to blather on. I am totally overwhelmed by all that's happening. I'm scared to start the Humira because I've had SO many adverse drug reactions. Morphine, demerol,dilaudid, tramacet and this weekend in the hospital, toradol. I'm convinced the Humira will do me in!!
My 21 year old son has Crohns disease and takes weekly injections of Humira. He was on remicade until that failed and has had to increase to weekly injections b/c the Humira is failing too. He's never had a reaction to the Humira but he says it makes him feel like crap for about 12 hours afterwards.
Anyway, just wanted to get my feet wet here and bore you wth my sad story! I've been reading your posts and clearly, you guys have been dealing with this for a while and seem to know your way around this disease. Some of your posts scare the crap out of me and others have made me laugh. It's good to know there are others out there. Thanks for listening. Mary

Hi Mary and welcome to KA. I`m really glad you found us and it sounds like you have a caring rheumy. That`s a really good start! That he`s started you on a biologic so quickly is promising and I hope it helps you as it has so many others.

I also hope the neuro referral comes sooner rather than later. Once you have the referral, you can call the neuro`s office and ask to be put on a cancellation list. That way you can be pro-active about it, because once you`ve done that, you can call once a week or so just to check. Don`t be a total pain in the patoot about it, but let them know you`re serious.

Squaring of vertebrae means that the inflammation has been there long enough to start showing in the structure of the vertebrae. Vertebrae should be vaguely hour-glass shaped. When they square, it means that they`re more rectangular and this is the first step to fusing. Doesn`t mean you can`t do things to stave it off, but it has begun. Stretching and range of motion exercises are really important, especially moves that get your spine going in different directions. Pilates matt work and yoga are really good for this.

Please try not to worry about the Humira. It may or may not work for you, but there`s no point worrying over something you don`t know yet. Just keep track of how you feel, start a log book or journal to document any changes after you start treatment, and that will help you maintain a more objective viewpoint.

I`m so sorry your son has Crohn`s. I have several friends living with it and they`ve been helped a great deal by the biologic meds. Still, it`s a horrid disease to live with. You both might benefit from the low starch diet. Cutting out wheat at the least might be good.

You don`t say where in Canada you are, but we have a fair number of Canucks here. There`s bound to be someone in your region who can help you with the local medical system.

Anyway, you`ve found the best place on the web for learning to live with this. This place and The Arthritis Society helped me get my feet under me when I thought I was going to drown in it all.

Hugs,

Hi Mary.
Just wanted to welcome you.
I have learnt so much from everyone here. It truely is both sad and wonderful to know we are not alone with our struggles.
Take care
Trish

Hi Mary,

Welcome to this family. There is so much knowledge here.


Hugs,
Janet

Hi Mary.I was scared of TNF blockers like Humira too.I decided to give then a try and am glad i did.Enbrel worked for a little while..then i changed to Humira.Humira worked for over a year and then i went to Simponi.Simponi had been my life saver thus far.
If you read my post on here today ..it will tell you how well it works for me.

There is light at the end of the tunnell.

John

Thanks for the advice and support guys. I especially hear the part of not worrying about stuff I can't control!!

I just wanted to welcome you to KickAS. It is a great place for support and knowledge. I am just so sorry that you have the need for a place like this.

I am glad you seem to have a good Rheumatologist.

I hope the Humira helps you.

Blessings.
Possi

Hi Mary, welcome to our Kickas family. Lots of info, love, and support here. I'm 55 and have had AS for over 40 years. We have much in common. Hope to hear more from you.

Cindy