Spondylitis Association of America Forums General Discussion Men Only Message Board AS Diagnosis Problems

Hi Everyone, I wanted to run my story by you all to seek your opinions, recommendations, etc.

I'm a 44 year old male, 5'9 (and shrinking!), 200lbs. I've been in decent health until about 5 years ago. I had been working out of my house for the previous 5 years and began to notice that my neck was getting stiff. I attributed it to a lack of physical activity sitting at a computer all day, and didn't take it very serious. Then about 5 years ago, my neck began to get worse, to the point where I can really only move it from the "10 to 2" positions of a clock, with limited mobility upwards, but I can touch my chin to my chest still. I also have occasional hip pain, along with what feels like a sciatic nerve issue. And I've shrunk an inch and a half! When I move my neck, I hear snapping and popping sounds. In addition, I seem to be getting increased amounts of eczema on my face and head, along with a rash on my forearms.

I first went to a orthopeadist of some sort, who did an MRI on my neck and spine and saw "normal wear and tear". He prescribed physical therapy, which I did for 12 months with no improvement. He referred me to a rhumy, who tested me for all the bad things he could think of, including AS. He did another MRI and Xrays too. The only things he found was the my C-Reative Protein was elevated, but my Sed Rate was normal/low. I was also low on Vitamin D. Oh, and I now have some "slight" fusing in my neck, along with some "micro fractures" at the base of my spine.

I've been taking a half to whole vic 5/500 and a half to whole xanax each day to help me with the pain and to get to sleep at night. Without it, I'm too uncomfortable to function during the day and sleep at night.

The AS test came back negative, which he tells me doesn't necessarily rule out that I have AS (I guess 10% of people don't have the marker, or something like that).

So he now wants to treat me for AS without a positive diagnosis. He wants to do either Humira or Remicade.

It scares the crud out of me to try either of these without knowing for sure I have AS.

Questions seeking your opinions:

1. Do you think, as described above, I have AS?
2. Would you try either of these drugs without knowing for certain that you have AS?
3. What are the benefits/risks of each?
4. Are there any other tests or medications that may help me that you know of?

Thanks for taking the time to consider helping me. While my condition isn't too bad yet, the future worries me...

DJ

Well, for what it's worth, it sounds like AS to me. I was diagnosed with AS in 1985. I have been on Remicade ever since it was approved. Remicade made a great deal of difference for me. It was the first treatment that significantly lowered my SED rate which previously had hovered around 65. With Remicade it now stays between 0 and 1. There are significant risks with any of the biologic drugs particularly a higher susceptability to infections.

Along with the mini-fractures in your sacro area, is there any evidence of fusing? That is one of the ways they diagnose AS.

AS can be a challenge, but even for those with severe forms, such as myself, life is manageable. Just keep your sense of humor and a willingness to adapt and you'll be fine.

Spenser23

Thanks Spenser! I do have some "slight" fusing in my neck that showed up on my last MRI. I guess my Sed rate isn't real high...15, but my CRP is high at 25.

Any reason why you went with Remicade? That's the one done via IV at the doc's office, right? Can you tell me how often you get it, and how long it takes? I've read some about side affects - reduced immunity, MS risk, liver problems. Are there any side affects that occur right after the IV?

Thanks for the info and the encouraging words. I'm feeling pretty good, all things considered!

DJ

I get it every 5-6 weeks. I found the Infusion method much less intrusive in my life; I can simply fall asleep in a recliner in my doctor's office for a couple of hours while they gave me the infusion and then can forget about it the rest of the time in between visits. I've heard of some people getting side effects during or after the infusion. I have never had that kind of reaction. I seem to recall reading that a lot of those kind of side effects may be related to the speed of the infusion being too fast.


Take Care,

Spenser23

DJ-

I am going to leave the diagnosing to the docs, but it sounds a lot like AS. I have severe spine and neck fusion and had severe eczema as a child. I am on Humira. My rhuemy liked it better, but it seems like some people have better luck with one or another. I do not have an issue giving myself injections--some people do. I had great releif from the first injection of Humira--some people take longer, or don't get much relief from it. I also have a friend who does not have AS, but uses Humira for his severe eczema.

I would say that if your doctor thinks you may have it, give the biologics a shot (no pun intended!) I have never been tested for the gene. My doctor has said that it is pretty obvious I have the disease, what does it matter if I test positive or negative for the marker.

JMM

either way you have a auto-immune problem, considering your neck and fusion.
i have psoriasis and AS, and psoratic arthritis..
they are all auto-immune disorders.. either way those drugs, are what treat auto-immune diseases.... until you find out which auto-immune disease you have.. i say go with it AFTER you check the side effects and are ok with them... go to the drug manufacture websites, and read read read... i tend not to listen to doc's cause they sometimes just say what the pharmacutical rep tells them... trust me i'm a nurse and hang with docs all day!