Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Will an MRI help me get answers?

So, about a year ago I started having the symptoms (iritis, HLA B27+ test, back pain). Rheumy gave me a CT scan and xrays. Nothing really except "degenerative disc disease" at the L/S joints.

Here it is a year later...now tried swimming more, PT, Aleve, indomethacin, and relafen. Without success...still in lower back pain that's getting worse. He's not real keen on trying the sulfa___ (sp?) drugs because my main complaint is my back and he says those drugs are really better for the periphery joints, not the back.

In the last two months, I've also had a toe swell up huge and get too painful to walk for a few days. A nice couple weeks of heel pain. And, in the last month, I can't breath deep in the mornings because of pain. That's a new one for me. Luckily it only lasts about 30 minutes, and then I can get out of bed and begin the agonizing process of getting dressed for work (worst part of my day by far...shoes, pants, and shaving legs....ouch all that bending over)

Went to the rheumy today and he's said he wants to start me on Enebral (sp?). BUT, he thinks insurance might balk at the cost, so he wants to send me for an MRI to look for inflammation. He doesn't however sound confident that it will so much, since the CT scan a year ago didn't show much.

So, my question is...Is an MRI better at showing inflammation than a CT scan? Should I expect that after a year there might be changes visible?

I know this disease progression can be slow, but can it also be fast. This seems to have been a very quick process to me. To go from nothing ever to Iritis, constant back pain, toe swelling, heel pain, chest pain within a year seems awful crazy.


Thanks in advance for all your answers. I'm so grateful for your forums.

Hi, Katie:

Your rheumatologist is right (gee...I almost NEVER have any opportunity to say that!); the mri is not very good at showing inflammation. The best might be nuclear bone scan, however, if you want to check for damage and create a baseline workup, there is probably nothing better than full X-rays. I don't know WHY you need to IMAGE your inflammation--YOU know where it is by the pain, and you can even press against your bones where the pericardium (layer of collagen that surrounds most of the bones which becomes inflamed--example: Pericarditis, at the specific lower front leg site, is called 'shin splints') is most active and feel the pain. This is a thin layer, so does not come out very well even on a nuclear bone scan.

If you do not take a suitable DMARD, like sulfasalazine (but Azulfidine-EN; ENteric-coated)--and better still the Enbrel, along with some dietary starch restrictions, the damage that your pain is trying to tell you about will progress considerably and you could have something not so easily treatable--like kyphosis (I wish that I could get a spine transplant...).

Good luck with whatever You decide to do,
John

I had x-rays and an MRI. Neither showed significant damage. It wasn't until I got a bone scan that some damage was found in my SI joint. I don't expect to get a diagnosis until there is evidence of fusion found.

It's true the sulfa drugs are used for peripheral joints but also digestive problems often found with AS. I was given sulfasalazine for pain in my hands. If toe and heel problems continue, you may want to try it.

Enbrel is expensive, but if you have AS it could be worth trying. A lot of memebers have had wonderful results from it. Some insurances require you to try a certain number of anti-inflammatories first. You can always call your insurance to find out.

Hope you feel better soon.

Sharon

Katie, seems strange to me that they would base your ins. coverage on x-rays alone. My doc relies more on my blood tests to check the activeness of the disease. They cannot tell by x-rays the amount of pain you are in or the frequentness of your flareups. The symptoms of A/S occur more rapidly than the progression that the x-rays show. I doubt that in one year the x-rays would be much different so if this is what they are using to grant you coverage for the Embrel, you may not get a fair decision. I have been on Embrel for about 5yrs now and my rheumy had to lie on the claim and say I had severe Arthritis because at the time Embrel was not approved for A/S. It worked wonders for me the first few years and then like every other drug that seemed to help it lost it's effectiveness due to my body building up a tollerance for it. I actually stopped taking it for a few weeks to see what would happen and I felt horrible without it.
As far as your question goes, I don't know if an MRI is any better than a CT scan but I really hope you do get the coverage. If I had to pay for it my cost would be $3200 CDN per month which would mean no more Enbrel for me.
Good luck,
Steve

Stever- I'm not sure what exactly the insurance will base their decisions on. The rheumy was just expecting a fight, he said something like

"Well, the only problem with getting the drug is getting the insurance to approve it. A lot of times they will say, 'well, does she have AS? Does she show fusion? Does she have inflammation?' And if I only have your symptoms and pain with a negative CT and xray...it can be an uphill battle."

So, I think he's just telling me that insurance defines AS in the most limited way possible (fusion), and that if he could at least show inflammation...he felt like the drug would have a better chance of being approved.

Thanks for sharing your experience...I had no idea the drug was so expensive! No wonder it's so high of a hurdle to get it paid for.

Hummm...my rheumy has never mentioned a bone scan. I don't even know what one would be, but I think my mom just had one after her chemo and got an osteoporosis dx. That would be the same scan, right?

Do you know how you got them to consider a bone scan? Did your dr bring it up or did you?

I think I'm in the same boat...all the symptoms, but no diagnosis until they see fusion. At least the rheumy seems willing to treat me for the symptoms rather than blowing me off. I think that I'm lucky in that regard!

Damned. I was hopeful that after a year of pain, that there would be a relative certainty that *something* would show up on an MRI. with the CT, I thought "well, I haven't been in pain very long, maybe the CT isn't very accurate, yada yada." I guess there just isn't a good way to get a look at this disease. My rheumy never does blood work (except for the very first time I saw him with the iritis he reviewed what my eye dr had ordered) for me, but I've never asked why. (Like a deer in headlights, I tend to lose my way and focus in the actual dr appts.)

That damage you referred to is what I'm worried about. I'm especially worried about the pain progression. A year ago it was just an ache when I twisted side to side. Then it became a nagging pain. Then it was bad enough to wake me up at night. Then it became so that I couldn't lay flat on any surface. And I'm pretty much at the point now that sleeping is uncomfortable at best (and a lot of times damned painful to move my hips at all), waking up is depressing because I think about how crappy it is to put on pants. Walking up stairs, down stairs, getting into cars, picking up my kids, leaning over to tie shoes, sitting on soft couches...it's just everywhere in everything! And the list just grows for activities it's affecting and now the number of hours a day that I feel it is getting longer and longer.

UPDATE---


Well, the good news today is that within 3 hours of my doctor's appointment, I'd already got insurance approval for the MRI! The rheumy had thought that even getting approval for that might be hard because of the CT scan being a little under a year old. So, I hope that's an omen of good things to come!

MRI is this Wednesday at 10:30am.

Now, I'm off to research bone scans.


Edited to add a little vent:
Sick of people telling me this is in my head. My dear sweet opthomologist (who has really been quite good and happens to be my next door neighbor) told me at my check-up yesterday..."Well, don't you think that you might be imgaining this back pain? That you might just be taking the power of suggestion? Just because you had a bad case of iritis and tested positive [for HLA-B27] doesn't mean that you have AS, Katie. Try taking tylenol, it is highly under-rated in its ability to control pain. I think you just might be imagining all this."

Oh, typical. He sees me walking around the neighborhood in the afternoon and equates that to being fine. Same as some of my co-workers. What they don't see is the agony in the mornings, how I don't lift up my kids anymore, and how I don't bend over before the hours of 1-2pm unless my toes are on fire. I swear, if he wasn't such a good eye doc...I'd leave in a heartbeat.

I can completely relate. Some Dr's/people can be so ignorant. I was told by a plastic surgeon whom I went to see about a ganglion cyst (sp?) on my wrist who said that only men get this disease. I was so irritated. If I wasn't afraid of making him mad before he cuts me up I would have told him that maybe he should do some research for himself.
I think the only thing you can do is just know for yourself what it is like for you and to just believe and know that you aren't the only one and that it is not in your head.
Good Luck with the MRI. I am still waiting to get one done but I did have a nuclear bone scan that didn't show any inflammation so don't be too surprised if nothing shows up just yet.
Jill

Hi Katie, sure sounds like AS to me. The MRI might show something, but I too would suggest a nuclear bone scan. Especially since you have pain and stiffness first thing in the morning that lasts more than half an hour. Sounds like you are currently in flare. This is the time to push for a diagnosis.

Xrays, unfortunately, are not always conclusive in AS and most especially not in women with AS. We tend not to show any sign of fusing until we have had this disease for 10/15 years or so. Of course, everyone is different, but that does seem to be the case for the most part. Also, blood work is not always conclusive because C-Reactive Protein and Sedimentation Rate do not always elevate to high levels in people with AS. In women, the worst symptom of AS seems to be the pain - much moreso than in men (who do fuse much more quickly than women) according to some studies.

From the pain you experience breathing in the morning, it sounds like your thoracic vertebrae have become involved. There are a couple of us (women) here who have that. We totally commiserate, honey. It gives the saying "I laughed 'til it hurt" a whole new meaning.

Disease progression is completely different in everyone who has AS. Some people progress quite quickly, some not so quickly. You may have had symptoms for some years that have only in the past year hit critical (ie full flare). It is certainly quite possible that you would have damage showing this year that wasn't there last year. You may not, but you won't know if you don't look.

And if you can get onto Enbrel, do it. Do not pass go, do not collect $200. These new biologic drugs are like miracles for a great number of the people who take them. They halt the progression of the disease completely while you are on them, putting off damage for (in some cases) several years).

Good luck.

Hugs,