Ankylosing spondylitis? - Arthritis Message Board

countrygal · 08-25-2004, 12:56 PM

I am wondering if anyone had been dxd with this? Is the MRIs and xrays the only way to tell if it is really ankylosing spondy? I was told that could also have IBD spond., how can they besure it is ? I was shocked when i was told this so i didnt get to ask enough ?'s, so i thought maybe someone on here could share their experiences. I have been doing the net searches. I am also having to find out about the meds they want to put me on. Some of them have bad side effects. He wants me to take plaquenil and methotrexate...Please help if you can. Thanks Pam

Albie · 08-27-2004, 06:45 AM

Pam,
If you check some of your other postings you will find that I have repilied before that you need to go to [url]www.spondylitis.org[/url]. On the home page they recently published info on methotrexate and it seems that because of this study it may no longer be recommended as a drug of choice in the near future as word gets out.

Please check this and ask ?'s before starting Metho therapy.

I was dx'd with AS some 12 years ago and it appears that it is now becoming full blown. I also have overlapping Psoriatic Arthritis and IBS, neither of these is uncommon with AS.

There is no definitive test for AS but there is a list of things Dr.'s look for. This list is also on the site previously mentioned.

You can also go to [url]www.kickas.org[/url]. This is a forum of AS sufferers, and although a lot of it is chit-chat, I have also gotten a lot of great info there.

AS is no picnic but, there a lot of things can be done to lead an "almost" normal life.

Best of luck to you,
"Broke Down, Busted Up and Outta Gas"
Albie

Albie · 08-27-2004, 06:56 AM

Pam'
You also asked for experiences, so here is mine that I have also posted at other related sites:

“My story And I’m sticking with it...”

Back in the old days (1980), I went to my PCP (it was called a family physician back then) for my annual physical. I worked for the Fed Gov’t and a yearly one was required.. He called me a few days later to say there was a problem with my blood work. It seems that I had generalized lymphadenopathy (swollen lymph glands) but all my blood work was negative. During the next 4 years, 2 biopsies of my cervical lymph glands and every test imaginable from Hodgkins to Valley Fever, the Wake Forrest School of Medicine Baptist Hospital in North Carolina said I was fine and had no idea why my lymph system was screwed up.

It was also 1980 that my in-laws retired and moved (where else?) to Florida and we started to visit. It was only an 11-12 hour drive from Winston-Salem and I was 31 and had been driving long distances (on and off job) often with no problem, till than. After being in the car for a while (couple hours) I would start to get intense, bending over type pain in my low back. I really didn’t think anything of it because otherwise I was in great health (the doctors told me so). Once out of the car and walking around for a few minutes the back would be okay.

Fast forward to 1986, when I semi-retired (where else?) to Florida. Started my own business (security & private investigations) and for the next six years everything seemed to be okay. As long as you don’t count the elbow surgery in ‘89 and the knee surgery in ‘91.

Ahhh, 1992. I’m having persistent low back pain so I go to my PCP. He says I have a strain and starts treating me (for the next 8 months) with Flexeril and ultrasound heat treatments. I started doing some research on my own. I had purchased a Merck Manual, back in the old days, and started to read it and research ‘cause I really didn’t believe him. On one visit I suggested to him the possibility of AS. He said he didn’t think that was possible because it was pretty rare. I pestered him to do the HLA blood test which he finally (grudgingly due to expense) agreed to and of course I was positive. My PCP than sent me to a Rheumie who of course agreed with the dx and started me on a long series of different NSAID’s than Sulfa drugs and than Methotrexate. None of these seemed to work and after another Rheumie and some more drugs - I stopped going. Of course my feet hurt like hell when I got out of bed and my back bothered me if I walked to far, sat to long or stood to long. But, I figured, hell you’re now 46, getting old, and you start to have pain.

Well, lucky me. From ‘96 to ‘03, I go in to remission. Same pains, but tolerable. Take a couple Aleve, Tylenol, Motrin, whatever - and you get through it.

Early ‘03, I start having pain in my left shoulder and arm when I try to lift it over my head. This progresses to lifting it past parallel with the ground. At this time I am also having some pretty serious knee problems so, back to the PCP who sends me to an Ortho. You know the story. MRI on knee, surgery - rehab.. I’m at the Ortho for knee followup and I mention my shoulder problem. You know the story - X-ray, bone spurs, surgery - rehab..

Uh, Oh. Halfway through re-hab for left shoulder (June ‘04) the pain gets worse and is now starting in my right shoulder. Ortho sends me for an MRI of Cervical Spine. Whoops, not so good. C-3, C-4 and C-4, C-5 “mild ruptured discs” : C-5, C-6 and C-6, C7 “less than mild ruptured discs”, along with some bone spurs, spinal stenosis and whatever. By the way, I never had any back or neck injuries.

I am now 55 and starting to realize that all this started in 1980. Boy, what a revelation. I’m now wearing a soft collar to protect my spine, taking 40 mg Percocet along with 1200 mg Neurontin (for nerve pain) and 400 mg. Celebrex daily.

I find out from my Neurosurgeon, in the next couple weeks, if I have to have fusion surgery on my spine.

Don’t anyway kid themselves. THIS IS SERIOUS STUFF.

Thanks for “listening”, Love you all,
Al

“BUSTED UP, BROKE DOWN AND OUTTA GAS”

countrygal · 09-10-2004, 05:25 PM

Sorry its been so long. Thank you for your replies. Yes i have been to several sites including the 2 you mentioned. I still dont find all my questions being answered . So i wanted stories like yours and others. So if i read correctly you are not on Plaquenil or Metho, or any of those? And they are only worried about the C spine ruptures and spurs? Shouldnt you be on some of these meds to try to slow it down or stop it? So surgery is your options now? Sorry to sound so ignorant. Just trying to learn as much as possible..