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Rheumy visit - starting MTX
#243092 10/31/12 12:35 AM
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TL;DR - Saw the Dr and got a script for MTX.

Well, I went to the doctor today for a follow up visit on the 18th. Last appointment she ordered new blood work and x-rays. Both came back normal - no signs of inflammation on the blood tests and nothing unusual on the films. When I was there on the 18th she gave me a steriod injection. That helped quite a bit, took the pain in my SI from a 6 down to about a 3. Helped a little bit for the stiffness. Last week the soreness came back in my sternum. Last night it started coming back in my SI.

Hearing that the tests all came back normal is good news, but a bit frustrating. I figure that makes sense to most here - it would have been nice to have something objective showing that I wasn't crazy!

She suggested trying either sulphasalazine or methotrexate, and ultimately we decided on weekly oral methotrexate (plus daily folic acid) to start with. Hope it works. Have to go back in a month for followup blood tests, then will probably have to do every two months after that. Not looking forward to that AT ALL.

Re: Rheumy visit - starting MTX
bjhill2112 #243127 10/31/12 04:44 PM
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Sorry about the normal test results; I know how frustrating that can be!

Was the steroid injection intramuscular, or intraarticular? Either way, glad it helped!

I'm sorry she is starting with the immunomodulators since they really have no evidence supporting their use for axial (spine & SIJ) SpA ... if anything, their efficacy seems limited to peripheral problems (knees, hands, hips, etc.)

Still, I hope the mtx helps and doesn't cause you the nausea that is so common; if it does, don't hesitate to ask for a switch to the injectable form, which is much less likely to cause problems at the doses spondies take.

Keep us posted!


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: Rheumy visit - starting MTX
bjhill2112 #243130 10/31/12 04:58 PM
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Glad you have a treatment plan even without hard "evidence".

I have to ask - what country are you in? This sounds like the kind of strategy for a country that has a national health service, where DMARDs (disease modifiying anti-rheumatic drugs) are tried first before you become eligible for anti-tnfs. Was taking NSAIDs discussed? NSAIDs are normally the first line treatment if your rheumie doesn't want to jump straight in with anti-tnfs, unless there is a suspicion that it is possibly RA, or there is significant peripheral arthritis (i.e. anything away from the spine), but as Jen says, drugs like MTX don't usually do anything for spinal spondyloarthritis. Sometimes though you just have to jump through the hoops and try them before you can get offered other drug treatment.


Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current treatment: Low dose naltrexone, low starch diet (Guts shredded by NSAIDs. Previously diclofenac worked well, not eligible for anti-tnfs, hypersensitivity to SSZ). Also short bursts of pred for bad flares
Re: Rheumy visit - starting MTX
bjhill2112 #243174 11/01/12 03:59 PM
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I'm in Texas smile

I'm starting to think that maybe this doctor just doesn't have much experience with AS. She kind of brushed off my question about taking NSAIDs. I plan on calling them back to ask about that again. I do have a lot of pain in my sternum - is this considered peripheral?

Re: Rheumy visit - starting MTX
bjhill2112 #243177 11/01/12 04:47 PM
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First off, the worst thing about having a rare disease like AS, it takes so long to get a diagnosis. I was asking my husband, "Do you think I'm a hypochondriac or just going crazy?". Unfortunately, I was neither.
Personally, I believe from my research, that the DMARD's should be the last tried. When I had 2 kidney's I was able to take Lodine (an older & cheaper med) that like Indocin is targeted specifically for AS. It worked really well.
My son was diagnosed with AS @ 10yrs. After extensive research & working with his doc's, I was able to get him on antibiotic therapy (keflex, twice daily) & he went into remission for 5 yrs. By the time he was 21, he had very little damage from his AS & has never been on NSAID's or DMARD's.
I have hypogammaglobulemia (very little immunities) now. While researching, I read that there are a couple of DMARD's that can cause this irreversible condition.
Medicine is a "partnership" between you & your dr. Do your research, ask questions, and you can say NO to a therapy suggested. But also your responsibility is to also follow therapy prescribed.
I wish you all the best with what ever therapy you find that works best for you.


Married to a wonderful man 23yrs, w/ a terrific son diagnosed with AS.

Acquired AS 28yrs ago. Severe Fibromyalgia, Migraines, Multiple system involvement: heart, remaining kidney (no nsaid's allowed), spine (+ spinal stenosis), neck, knees (Rcd total Rht knee replacement 7/13, Lft scheduled for 9/13), thyroid, etc... Medically retired from US Military.
Now recently diagnosed w/ Primary Hypogammaglobulemia to boot!
Re: Rheumy visit - starting MTX
bjhill2112 #243180 11/01/12 05:07 PM
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bjhill - I think the sternum pain could be costochondritis; in which case, yes, that is a peripheral manifestation. Axial includes the spine and SI joints. There is some debate over whether it includes other parts of the pelvis but purists say no. I don't really know smile

A lot of rheumatologists seem like they don't keep up on the literature in their field ..... maybe yours is one of these.

Gidget, the really frustrating thing is that spondylitis is not actually rare at all. It's at least as common as rheumatoid arthritis! Your conclusion to your research agrees with most experts whose review of the scientific evidence led them to propose that NSAIDs should be first and anti-TNFs next if NSAIDs do not provide adequate relief.

I'm sorry you have had trouble with the hypogammaglobulemia and kidney damage. Did you take an immunomodulator like mtx or ssz?

When you said that Lodine and Indocin are targeted specifically for AS - what did you mean? I'm not aware of NSAIDs having specific disease targets - if they are studied for a particular disease then they can be marketed for that specific disease; is that what you mean? I've not seen any evidence that any NSAID is better or worse than another for treating something like spondylitis; they do have different risk (side effect) profiles and of course what works for one person won't work for another, etc.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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