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Newly diagnosed with peripheral spondyloarthritis
#277809 04/21/17 03:02 PM
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My doc finally nailed down a diagnosis of peripheral spondyloarthritis. I started sulfalazine yesterday. I am still slightly confused by these diseases. I have no radiological changes to my SI joints, but a lot of pain in them and my back. Am I just in early stages of AS or are they two separate diseases all together?

Re: Newly diagnosed with peripheral spondyloarthritis
alamode #277818 04/21/17 09:56 PM
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They are the same disease, it just acts differently in different people could be different genes.

Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Newly diagnosed with peripheral spondyloarthritis
alamode #277820 04/22/17 05:37 PM
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Hello, alamode:

I suppose that throwing words together is comforting for some, but "peripheral spondyloarthritis?" Think about those two opposite words and how they relate to Your case where You do have PAIN in SIJs and back! I want to call such pains AXIAL and instead of dancing around the issue just suggest a better label of Pre-AS.

The disease can be treated with sulfasalazine but the most effective form is enteric-coated: In US it is "Azulfidine-EN" and UK "Salazopyrin-EC." It takes several weeks to work up to the therapeutic level (depending upon weight) >3.5g/day and maintenance levels are usually about 2g/day.

HEALTH,
John


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
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Re: Newly diagnosed with peripheral spondyloarthritis
alamode #277823 04/23/17 01:42 PM
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Thank you for the clarification. Even though it wasn't the answer I wanted to hear. My doc flip flopped between axial and peripheral with no change in symptoms which I didn't understand. The xray of my back and hips showed no changes to the
joints. They did diagnose me with bilateral cam impingement and want to shave bone from my hips. I get the feeling this may be related to AS. I'm reluctant to have any surgeries at this point. Next up is gastrointestinal doc to get my tummy troubles under control.

Re: Newly diagnosed with peripheral spondyloarthritis
alamode #277824 04/23/17 02:56 PM
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AS has many presentations. Many are insidious and take a long time to reveal themselves. Pain and decreasing mobility (chest expansion, bending etc) were predictive long before newer technologies arrived on the scene. A good Rheum knew how to differentiate between muscle pain and skeletal pain. If your pain prevents you from moving and is severe enough to wake you, prevent your sleep and interferes with ADL (showering dressing) you can bet that you have a form of spondyooarthrisis. For decades there were no solutions except Indocin, methotrexate and steroids and these did not work well. The US Gov't asked Johnson and Johnson to develop a drug which spoke to Crohns Disease and they manufactured Remicade. Over 20 years they tested the new drugs in Europe and found great success. Over time Remicade came to the US and was used for Crohns and subsequently to Rheumatoid Arthritis. The drug worked differently than most in that it attached itself to tumor necrosis factor TNF which preventing this component from entering the cells and causing inflammation and pain and swelling. since then many TNF blockers have emerged known as Humira and others. Blocking the cytokine TNF has produced amazing results. The class of drugs is now a gazillion $ success story for the US Gov't in it's history of orphan drug development.

This long story is with purpose, If you feel that you are less than confident in your doctors opinion, get a 2nd opinion at a center for excellence in your area. Travel to a renowned center for this illness can be worth it's weight in gold Getting a correct diagnosis can be daunting and many here took years to be diagnosed correctly.

Your decision to forego procedures is wise. Doctors want to relieve suffering. Your job is to stick with this until you find the doctor who wants to understand your disease and then to treat symptoms in a patient manner. My own Rheum after meeting me waited a year before starting Remicade. Patience in your case sounds like a virtue.

NSAIDS may cause stomach issues alcohol does as well so modify if necessary. Gut issues are common with this form of arthritis as TNF attacks rapidly dividing cells in the human body which are found in the gut and in the eyes. Know also that at time AS can produce cardiac issues. If that comes your way, manage it promptly.

Do not fret. Many of us started young and have led wonderfully full lives with limitations....and every person in the world has some limitations.

Best of Luck.

Last edited by WhiteCell; 04/23/17 03:01 PM.

Diagnosed 2001 after years of joint pain. Remicade started 2002 - 5mg/kg every 7 weeks.
Right Eye Iritis.Trabeculectomy/lens replacement 2006 > DSEK Cornea Transplant 2009.
>Ahmed Shunt 2016 >DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. Radio Frequency Ablation 2008.
Angina and stent placement 9/2020

ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
Re: Newly diagnosed with peripheral spondyloarthritis
alamode #277828 04/24/17 07:12 PM
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Hi, I'm sorry you're here with these symptoms. I was diagnosed with ankylosing spondylitis because of SI joint pain which radiated through my legs. Enbrel conquered that pain fortunately. Years later I got plantar fasciitis and for 18 months suffered until finally my rheum gave me sulfasalazine which took 3 weeks to work. That's when I realised it wasn't real PF, but enthesitis. So sulfasalazine has worked great for me. From what I know, it goes in and out of your system fast so if you want to stop it, you don't have to wait long for it to clear your system.
As for your last question, (Am I just in early stages of AS or are they two separate diseases all together?) I have know idea. As time goes on, I'm learning more and more about this disease. I used to think it was just related to the spine.


Female, 30 yrs. Diagnosed with AS in 2008 - symptoms since 2007. Psoriasis & PPP since 2018 ∴ PsA ¯\_(ツ)_/¯
Re: Newly diagnosed with peripheral spondyloarthritis
alamode #277830 04/25/17 11:05 AM
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I wish I could pinpoint the onset, but I've had symptoms that waxed and waned for years seemingly unrelated. I've had achilles pain forever and recurrent tendinitis other places with no injury. About 8 years ago I ended up in the ER feeling like an elephant was sitting on my chest with a racing heart. I don't remember exactly what he called it, but said there are issues with my hearts electrical system and I have a rapid heart rate. I've had joint pain and swelling in my knees since I was a kid. When my lower back started hurting 6 years ago, it was sudden and severe with no injury. At that point everything went haywire. My hands, shoulders, elbows, hips, tailbone, ect. joined the party. That's when I started to realize all this random stuff had to be related. I had 2 GP's look at me and tell me I have RA. Headaches seems to be the norm now. I struggle with daily things like socks or getting up or down. I've developed glaucoma. The things that used to come and go are constant. Over the last couple of years I've had prednisone twice. It's been the only thing that offered real relief so I know it's inflammitory.
I don't necessarily disagree with my rheumy, I just want to know more about what I am up against so i can be a better advocate for myself. I've read that sulfalazine helps with peripheral symptoms but doesn't do a lot for axial symptoms. I know there's no magic formula to tell whether or not my spine or SI joints will fuse, but if there's a chance, shouldn't we treat more aggressively because I feel that my disease has become more aggressive over the last couple of years. I just want to be well armed for the fight.

Re: Newly diagnosed with peripheral spondyloarthritis
alamode #277831 04/25/17 12:11 PM
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I read my rhuemy's notes. USPA. I assume her description to me of "peripheral spondyloarthritis" is because there's no evidence in my spine or SI joints yet.

Re: Newly diagnosed with peripheral spondyloarthritis
alamode #277865 04/29/17 11:10 AM
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I think I am in a similar boat... Still figuring this out and just had my 3rd visit with the rheumatologist. This is what he explained: he thinks I have AS and he's treating me for AS but but since I don't have any evidence of ankylosing (fusing) type changes, he sees it as being in the USpa phase, not the AS phase, and so he calls it USpa instead of AS, even though he says it is still AS...

Totally clear, right? crazy

Re: Newly diagnosed with peripheral spondyloarthritis
alamode #277866 04/29/17 02:29 PM
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Clear as mud!

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