What is Ankylosing Spondylitis
Ankylosing Spondylitis (AS) is a chronic form of arthritis--it is an inflammatory disease that causes joints, cartilage or other fibrous tissue (such as ligaments and tendons)...
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No NSAIDs Mess
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Hello everyone!
Several weeks ago I had really bad hip and groin pain, so bad that I went and saw my PCP. He sent me for bilateral pelvis x-rays. Upon seeing the results, he told me that in over 20 years of practice, I was the first to have a positive x-ray (he usually got men complaining of LBP). Well, gee, don't I feel special. I should add that in May 2008, I was diagnosed with Crohn's Disease. My GI doctor asked me afterwards if I thought he made the right diagnosis. Now, in hindsight, I wonder. Is the AS secondary to CD or vice versa? This also explains my back pain that's been mostly on, sometimes off, for years. Anyhow, because of my CD meds, I can't take NSAIDs. I have Tylenol 3 but when it hurts, it hurts, and T3 doesn't do jack! I called my rheumatologist and asked for something else (not in the line of NSAIDs) and got nothing! Instead he is working on getting me on Humira. Well, that's fine and dandy, but what about now? I can't stop working and I work 8+ hours at my desk job. Heat helps sometimes but I've already burned my back a bit in an attempt at relief. Is anyone else out there in a similar situation? What do you do for pain relief? Any advice for the newly diagnosed? Thanks all. Posted on 10/21/09, 10:10 pm |
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sorry they will only give me nsaids and honestly get no relief from them either.... here in Idaho they don't prescribe pain meds unless your heads falling off. 
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Get a referral to a pain management clinic. I put up with the pain for years and after spending 4 mos in the hospital and having 2 feet of my colon removed because of AS, I gave in and my rhemo referred me to a pain management clinic and they have helped my quality of life tremendously. I get injections several times a year, and on pain meds daily, and they have kept me off that roller coaster ride. I still have my flare ups but they are a lot more managable. I have tried for a couple of years to get on Humira but my insurance doesn't cover it and I did not qualify for their patient assistant program, my rhemo thought pain management would help and it has. Although it did take several months before they found the right meds to help, I am feeling much better than I did.
I wish you well, and hang in there ...
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Thanks a lot GiGi for sharing your experience. Just today I had my first follow up with my rheumatologist. He tried to get me Humira but the copay was just too high. There is a copay assistance card that anyone can qualify for and it takes off $500 from the cost. Even with that, it's still nearly $500 so it's not a good option. I was on Cimzia for a while after my CD dx and it helped a lot. Granted, I hadn't been dx'd with AS at that time but I did have a lot of joint pain. While on it, the pain was pretty minimal with only some minor (at least compared to now lol) breakthrough aches. I had to come off of it because I ran out of freebies and couldn't afford it on my own, especially with the old crap insurance I had at that time. Cimzia hasn't been approved for AS yet though, so he can't really prescribe that (even if I could afford it!).
He sent me home today with a script for prednisone. Well, I asked him to make it methylprednisolone, since I hear that is less likely to give you moon-face. Going to try 4 mg / night for a week and see what happens. A pain mgmt clinic sounds great and I would love to go, but between GI, rheum, and obgyn (I have ovarian cysts that need monitoring via ultrasound) visits on top of medical debt accumulated.. I just don't feel right about accumulating more debt. I only just recently (pre-AS dx) felt I might get my head above water in the next couple years and would hate to be set back even more than I am right now. I am supposed to avoid stress if I can (funny, huh?) and isn't money always a stress-factor if you're not a multimillionaire? Hopefully I'll get over there in the future if this still isn't controlled, but sometimes it's just intolerable as I am sure you well know hehe. Thanks again for the info =) I will have lovely fantasies of pain mgmt clinics now hehe.
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I feel like I'm in the same boat as you. My ins. will not cover Humira until I"ve tried other meds of their choice. So that's what I have just started (Hydroxychloroquine). Plus she also gave me a perscrip. for Prednisone. I haven't started it yet because I'm so afraid of it. She gave me an injection when I was at the office. I'm afraid of the "moon face" and I also have a thyroid condition.
So is this Methylprednisoolone better? No "moon face" or weight gain. The prednisone injections don't seem to be helping ver;y much anyway. Thanks for any advice you can give me.
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Hey CarlAnn,
What exactly is hydroxychloroquine? I am curious =) How many mg of prednisone are you supposed to take? My rheum is having me take 4mg/night of methylprednisolone. I can't say it's making a big differerence overall so far, but it has only been 4 days. Generally you're on a higher dose than that so I can't say for sure that there is no moon-face with methylprednisolone, but my face hasn't changed one bit-- hooray! I couldn't stand looking at pictures taken during my bout with prednisone last year (for CD). The other day I received another patient protection card from Humira. This one was a different color and seems to cover more than the one they sent me before. I want to call my doc's office tomorrow and see if they can put the prescription through a par. pharmacy (CVS is out of network apparently) and see if I can't get it for the supposed $5 copay. I will post again once I get that happening and let you know if it really took off $1000 of my first-month copay.
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