Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group early symptoms?

Hi Everyone,
I'm so glad I ran across this site ... I was just recently diagnosed with probable AS. I'm 30 and I've had chronic iritis for 8 years. It has always been very resistant to typical treatment so they initially sent me to a rheumatologist who found I have the HLA-B27 gene. Once that was discovered I was able to get it under control with methotrexate and humira, which eventually I got off of completely. Until May, iritis seemed to be my only issue. I started having daily (but only for a few minutes here and there) inflammation and pain in my knees and eventually started getting little pains in my knuckles, my ankles, my lower back, my shoulder ... a couple of times I've had pain in my hip and twice recently I've had tight achilles tendons. I also have had these bright red, tender spots on my foot that feel zingy for about 5 minutes and then go away (this was what I was getting with my knees before). These little pains come and go very quickly ... they go away when I start walking around. My other symptoms were fatigue and no appetite ... I saw my rheumie and he started me on Ebrel. My x-rays didn't show any problems at all, hence the "probable" diagnosis. I'm wondering if this is similar to any early symptoms any of you have experienced. Sometimes I feel crazy because the pains are so quickly gone they don't seem worth noticing, but at the same time I don't think they should be there at all! I wonder if they would last longer or be more severe if I weren't on Ebrel?
Thanks!!

Sarah Kate , Welcome. I dont have much advice on Iritis but many here do . I am on Embrel and the diet NSD Hoping that i will be able to do the diet alone some day . I have no reactions to the drug other then the pain goes away. Hope others will be able to help you on this site , It is a wonderful place to get info. Have a Great day. Kurt

WELCOME, Sarah_Kate:



NOT "probable," definite "Pre-AS."

B27+, chronic iritis, cyclic pains--absolutely AS and Pre-AS.


Not especially similar. The symptoms in women are very different than what could be considered typical. As a male, my earliest symptoms were severe sciatica, lumbago, and costochondritis. And very strongly cyclic. The iritis, kidney stones, plantar fasciitis, knee edema, TMJ dysfunction, kyphosis, and proctitis never started until after I began taking NSAIDs that accelerated my disease from moderate to severe. My mother had very different symptoms and certainly died (age 42) from complications of undiagnosed AS in conjunction with terrible lifestyle choices--smoking and drinking mostly, albeit diet played some role. She had back and neck issues, then shoulder and occasional TMJ.

With AS, I think it is important to be a "lumper;" everything is related to this systemic disease.

Good think You have found this site,

HEALTH,
John

Thank you so much for that response! (and thank you for the welcome also, Kurt!). I have read a lot that women present differently than men. I did have neck pain every night for quite some time a while back, but I never connected it (maybe some denial?! lol) I've had TMJ periods of pain as well ... I notice that the little, fleeting pains happen much more often on rainy days, humid days, stressful days and after sitting for a while. I'm encouraged to see that there are lifestyle choices to make it all easier as it or if it progresses. I am already doing physical therapy to get some good streches down and he's helping with what kinds of strength training to do to. Shockingly enough, my iritis flared up fast and furious over the winter but hasn't been an issue at all since I've developed all of these other joints problems. Thank God for those little bits of good luck I guess!

I am curious ... twice now I've had really intense pain in my thigh that makes it difficult to walk for a day or two, opposite legs each time. Once when hiking and again walking up several flights of stairs ... when I was hiking my muscle actually started to spasm every time I tried to take a step. I thought maybe I was really out of shape but then the stairs thing happened and that seemed a little too weird. I read that it might be referred hip pain, does that sound accurate?
I try talking to people about these things but no one I know in real life has AS ...

Thanks again for the responses! I'm terribly sorry to hear that your mother had to go through that John, and that you had to go through that loss.

hi

the way i started was different than what you describe, but i have undiff spondy (dx'ed that way cause no evidence of fusing, just some degeneration in the SIs, neck, T-spine, and where the spine meets the SI).

at the age of 30, severe gastritis and IBS. took about 3 years to get it under control.

then at age 35, severe dq tendonitis and neck / upper back problems. then at age 37, the SI joint started off severe right from the first flare. i was a mess with those three things, til PT and a physiatrist helped me get my symptoms under control. through the years its been various pulled or torn tendons and ligaments, the SI joint, and the back. and the GI system, though i've learned to mostly control that.

iritis plus musculoskeletal problems definitely sounds like a spondy. glad the doctors have you on a biologic and they have helped.

I started getting IBD symptoms when I was in my early teens. My mom just said I had a delicate stomach and didn't bother to take me to the Dr. Back in the 40's and 50's you didn't go to the Dr. unless you broke something, were bleeding, or had something really bad. No one had insurance at that time.

I started with the AS symptoms with sore, tender elbows when I was 19. The Dr just said I had tennis elbow and said to ice them. In my 20's I started getting backaches that the Dr said was due to having or raising kids. In my 30's the word arthritis came up, back, shoulder and knee pains,but blood tests were all neg. In my 40's I started on Naproxin and in my 50's I started on steroids because of pain in back, shoulders, neck, knees, feet, breastbone. I didn't get the Official AS Dx until I was 69.

So nice to meet you Sarah Kate. I love Rhode Island, and used to visit Newport, various towns including of course Providence. And Block Island, lovely!
I've had iritis, too, plus all kinds of aches and pains and stiffness. No fusion. It was a relief to learn that my symptoms were all connected. Do you see Dr Foster in Cambridge for your eyes?
I wish you the best of health, and hope you feel supported and welcomed here!

Hi, Sarah_Kate:



No, it is NOT any kind of "referred" pain, but RADIATING pain from hip bursitis, and it can become so serious that You cannot walk at all (I was down totally for nearly one week solid and tried to force it, "something gave" from deep within my hip and a hematoma formed--rectangular in shape--on my skin).

HEALTH,
John

Hi Sarah Kate, and welcome to KA.

John is very right. Women do tend to present differently than men, not always, but enough that it's worth noting. Women very often do not show any sign of fusing, even with every other symptom present, until they are in their mid to late 30s. Some much earlier, some never have it. I had a full blown AS flare that lasted 2 years when I was 28 (stem to stern flare, including iritis and I couldn't walk if I'd been sitting for any length of time), but had no fusing evident on x-ray so I wasn't diagnosed. Ten years later, fusing showed on x-ray and I was diagnosed.

Iritis was my first overt symptom, although I'd been living with intermittent pain for 10 years before my first, diagnosed, bout of iritis.

Pain that switches sides and moves around, very common. I think of AS as the 'Bits 'n Bites' of the arthritis world. A whole new day, a whole new bundle of pain.

Feel better when you move around. This is classic AS.

I'm glad your rheumy is being aggressive. Enbrel/Humira won't halt the progression completely, but they will slow things immeasurably.

Also, have you looked into the low starch diet? It does not help everyone, but has helped enough folk that it's worth taking a serious look at.

And exercise: stretch, range of motion, cardio and weight training, if you can handle them all; stretch and range of motion only right now, if you haven't exercised in a while.

Hugs,

Hi Jan,
Yes! RI is beautiful, very lucky to live here, especially this time of the year. I see Dr. Snady McCoy in Providence for my eyes ... she's fantastic! I see her colleague for glaucoma issues too. I'm a steroid responder so treatment of flares is always a balance of medication to control the inflammation versus side effects of increased pressure. Do you see Dr. Foster?