Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New to AS

I've had migraines from the age of 8 or so...I remember my first one vividly; that's how I know when they started. The GI part of my spondy started in my mid to late 20's, really flared at age 30, but the joint stuff didn't start til age 35.

When my neck was bad, I'd have head pain...inflammation and muscle spasms of the occipital muscle and pain in the occipital nerve...or neck pain that would cause headache like pain. If not for all the migraines up to that point, I may have not known the difference. Anything that relieved the cervical inflammation and neck/head/upper back spasms would help that head pain. Once I had a trigger point injection right into the occipital muscle...OMG was that helpful...prior to that, the headpain there was so great I couldn't lay my head on a feather pillow to sleep without more pain.

I still get migraines on occasion, but less than in the past. I'm on Humira now. Interestingly, what I've noticed is that I tend to get migraines a day or two before its time once again for my Humira shot. Yesterday was just such a day, woke with a terrible migraine, took an Aleve, which took care of the migraine. Today I will get my shot. I get Humira every 10-14 days, usually on day 11 or 12, depending on how I feel. Humira really has changed my life in ways that are hard for even me to believe.

To get to the Humira, I spent 12 years wading through 5 rheumies to get to a dx. Once I finally found a rheumy who would dx me, we tried just about every NSAID class out there. Many did nothing, some worked but with Edema and Gastritis. Even the Aleve will give me Edema and Gastritis if I take it for more than a few days, but now it can get me to my next Humira shot if I need it (for migraine or neck inflammation / pain or SI inflammation / pain). After that, we tried methylprednisone for the flares, but I was needing it every ~10 weeks or so, too often (osteopenia and diabetes can be made worse by it, both of which I have). To be approved for the Humira, I had to have tried at least 3 NSAIDs, I had tried about 10, so was ready to go with the Humira. It worked right away, never any side effects, for the first few years, I'd still flare, but not as often, not as bad, and the Humira could nip the flares in the bud. Now the flares are much much less and the Humira stops them in their tracks.

I still have methylpred as a backup, but haven't needed it in years. I still take an Aleve once or twice a month. I still use ice as needed. I still take a muscle relaxant as needed. I still use flector patches over my SI joint (I tried to stop them here and there, but always my SI joint tells me they are still needed...topical NSAID patch seems to work locally without the gastritis or edema). I still can't sit in most chairs or most cars. Still can't travel much. Those last two are mostly due to bone spurs in my neck that were caused by the for years untreated inflammation in my neck, but at least with the inflammation down now, so long as I don't sit where nerves get compressed, I have a lot less pain and spasm there. I did just buy some topical magnesium oil, so I'm still willing to try things. I still have my husband do ultrasound on my neck / upper back on occasion. I still rub the blue icy gel on areas as needed. I still eat a casein (dairy) free diet, still avoid S. cerevisiae (yeast) in my diet (IgA/IgG blood work showed my sensitivity to these....like celiac disease but to casein and yeast...more typical than one might think).

But the Humira makes me feel human again. Can't stress that enough.

PS also lucky to never have uveitis. But I have a good ophthalmologist due to spondy and diabetes. So far, eyes are good. Eye doc said he'd be able to see any evidence of past inflammation. I've had eye pain, but I'm assuming uveitis eye pain would be off the charts bad and that I haven't had. I do get dry eyes due to the inflammatory process, but systaine and another shot of Humira help. Fortunate that uveitis has never been part of my body's inflammatory response. But having a good ophthalmologist on hand is a good thing for all of us, just to make sure.

Wow, sounds like I'll be waiting for biologics for a loooooong time!

Thank you everyone for the replies, much appreciated.

Hi Albatros
I can't say I have ever experienced headaches well not any that I have ever thought to be caused by my A.S. but as you suggest A.S. is different from one patient to the next. Do you think your headaches could be caused by your medication. The side effects of drugs varies from person to person.
I am not surprised that it took an MRI scan before you had a diagnosis of A.S. It is a very difficult disease to get an accurate and quick diagnosis for and it does not usually show up on an X Ray till it is well advanced. Even the HLA-B27 test is far from certain or reliable.
You ask for a positive story re. A.S. Well I have suffered A.S. for over 55 years and obviously there have been some hard times but it has not stopped me leading a happy and full life. I have been married for over 40 years and have bought up 2 lovely children. We are now grandparents and take a full part in the life of 3 grandchildren. I can think of some good things in my life that came about directly due to my having A.S. For one thing I would never have came across my lovely wife if it were not because of A.S.
So keep optimistic and all will work out well for you.

I wouldn't necessarily say that. It took me 12 years to get a dx, but only 3 years from that point to start on the biologic Humira.

It was the diagnosis that took a loooooong time.

I was diagnosed in my mid-20's and was also pretty active. In my case my spine fused top to bottom so I lost mobility and ability to do a lot of things. Good news is that 35 years later I'm getting ready to retire, have two sons, play golf decently (18 hdcp) and generally things have gone pretty well. You learn to accept your limitations and focus on the things you can still do.

I'm going to need a new knee due to arthritis but most of my friends without AS have one or will be getting one.

Pain for me was worst the first 10 years, then my body adapted and the pain subsided.

It's a terribly erratic decease always changing not just by the day but sometimes by the hour even. With me it was new hips that I needed.