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Joined: Sep 2001
Posts: 3,670
Strutsy Offline OP
Royal_AS_kicker
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Thanks David for sharing this. Latent IBD, intriguing. What does it mean? If you have psoriasis and USpA, why haven't you be classified / reclassified psoriatic arthritis? (May not change management plan, but I'm curious)

You're managed with NSD alone?

cheers,
Jeanna

Joined: Sep 2001
Posts: 3,670
Strutsy Offline OP
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Posts: 3,670
Thanks cemc. If I find any undifferentiated spondyloarthropathy friendly rheumatologists in the UK, I'll let you know wink

J x

Joined: Jun 2010
Posts: 3,865
Royal_AS_kicker
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Honestly I don't think they can't tell the difference unless a person has actual joint fusing. My Dx is AS or USpA depending upon which MD I'm seeing at the time. Whenever I meet a new doc, which hopefully won't happen ever again (unless mine dies), I get the frown and "why do you take so many meds" look. Then I hand over my labs and the frown becomes a look of concern while they whip out their pads and wait expectantly for me to ask for more drugs. Really it's so sad, because of my 3 sisters, I'm the one who is positive for every autoimmune test there is, but have no damage - only pain. Also, my ESR and CRP are always almost flat. But my sisters are ANA-, RF-, and only one is HLAB27+ like me. The poor things have all been expected to just shoulder it in until they needed joint replacements. So... did that answer the question? No. Ok, I admit not to know the answer. Peace out.


ANA+ RF+ Rh- HLAB27+
Dx JRA 1967, GAD 1997, AS 2009, HMs 2010, CPS 2013
pulmonary edema w/ NSAIDS 2009

Movin' it so I don't lose it!

Joined: Sep 2007
Posts: 608
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Master_Sergeant_AS_Kicker
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Hi Strutsy,
Latent IBD - I have bad abdominal cramping and explosive loose stools if a eat a carbohydrate rich diet. There is no active bleeding and can get reasonable control of gut symptoms if I follow a NSD. My gut symptoms predate peripheral arthritis by many years.

My 'psoriasis' is not a true psoriasis in my opinion. I was treated for carbuncles (Staph aureus infections) twice on my scalp. They were secondary to a dermatitis (and scratching of)which was visible as a large red rash when I had a short haircut, but I only discovered this rash about two years after the infections. Undoubtedly many spondyloarthropathy patients have psoriasis but I think a lot have a dermatitis (there are many shared genetic factors and molecular pathways for the joint and skin aspects of the SpA's).

My rhematologist did change his diagnosis to psoriatic arthritis after two years when he saw the rash on my scalp. The other area often involved with psoriasis is the anal cleft - which obviously is an extension of the gut. Even my dermatitis has retreated greatly by restricting carbohydrate intake.

I have a slightly different take on the NSD to most here. I feel I benefit by minimising carb intake to absolute minimum. For the first 3 years on NSD I ate very large salads and a lot more fruit than I currently eat, and I think cutting back on these has helped me a lot - even if my diet is very boring and repetitive.

Regards David


Dx Oct 2006 B27+ undifferentiated spondlyarthropathy (uSpA) with mild sebhorrhoeic dermatitis and mild Inflammatory Bowel Disease (IBD) controlled by NSD since 2007.
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Very_Addicted_to_AS_Kickin
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any way that i can help, just let me know.

i knew even with that being long, that i was missing some details. so a bit more about my SI joint. that has been one of the frustrations, but now i have doctors that understand so its all good now.

negative in the xray in mar 2008.

positive for osteophytes and arthritic changes in the CT scan in nov 2008. but interpreted by the radiologist as negative for AS because of the lack of fusing. so my rheumatologist told me it was "just osteo". but i didn't believe it; not the way it flared. not the way i'd wake up and not be able to get out of bed. not the way the back for no reason at all would tighten up in spasms. that just didn't seem like osteo.

negative for inflammation in a nuclear bone scan in fall 2009. but that was a month after bilateral cortisone injections deep into my SI joints guided by fluoroscopy. that NBS showed inflammation in parts of my spine and in my feet. but not too bad as i wasn't flaring at the time. i did have inflammation in the lower L-spine where it connects to the S-spine. my bone density scans show pretty significant osteopenia there as well.

negative for inflammation by MRI (the correct kind, without dye but proper type) in fall 2010 . but by then had been using the flector patch with good effect ~8 months and SI joint pretty good at that point. but the MRI once again showed inflammation at the L-S spine connection.

but finally rheumatologists that care just as much about the symptoms as the tests, understand the whole concept of flaring, and understand that if i've been injected with cortisone recently or am wearing an nsaid patch over the joint, then the tests will come back negative for inflammation.

when i got the negative MRIs i was confused, so did a bunch of reading, and asked here. turns out that CT will show the bone changes better and MRI will show the inflammation better. so if i'm not flaring at the time and i'm using something antiinflammatory at the time, there may not be inflammation right at that moment, but the boney changes, they are permanent. but at least from all the testing, i know that they aren't too severe at this point, and no evidence of fusing, just "bone spurs" / osteophytes, some other language, which i can look up and tell you exactly if you want to know.

so i'd say my SI joint scans actually hurt my getting a dx, til i found someone wise enough to know. and someone who thinks that symptoms are as important in diagnose as any test result.

Last edited by Sue22; 12/15/11 12:51 AM.


sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Oct 2007
Posts: 1,731
Likes: 1
naj Offline
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hi strutsy,
re my dx, it is my understanding that one must have radiographic evidence of SI inflammation or fusion to have the official dx of ankylosing spondylitis. Do I have that right? Since I don't have any inflammation show up on an x ray, nor fusion, I have the Undif. Spondy dx, but my cutting edge AS specialist as the AS clinic @ UCSF has a newer term for it, it is axial spondyloarthritis. Say that ten times fast! : ) I prefer just to keep it simple and say just spondylitis.
hope that helps in your queries!

Last edited by naj; 12/15/11 01:07 AM.

______________________
Jan

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C
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Posts: 2,105
Strutsy, would love to hear of a good rheumatologist in the UK.

I suspect quite strongly that I am never going to get even an undiff spondy diagnosis in the UK because I am now 55. I finally got to see an inflammatory arthritis specialist a couple of months back and he didn't even give me the courtesy of a single follow up appointment after SI MRIs that apparently showed "predominantly degenerative change" - Just discharged me back to GP by letter. I have also had other people unofficially look at old MRIs and see what could well be romanus lesions (i.e. evidence of inflammation), and my initial SI xray showed some sclerosis (reported again as normal on review), but the good old NHS just wants to put it all down to osteoarthritis and age-related degeneration (not even considering that it could be secondary to years of uncontrolled inflammation). Makes sense to me - after all if they did diagnose spondy then they would probably now have to offer me the incredibly expensive biologics as I have failed four NSAIDs.

I'm still considering another private appointment but even if they do say its inflammatory, I would still have to get the conclusions accepted by the NHS to get treatment. I do feel I am fighting a losing battle.

I also have a long history of gut problems, but as I am not passing blood or vomiting then its just IBS and my GP doesn't seen any need for me to have any investigations.

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Very_Addicted_to_AS_Kickin
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please don't give up. i did much too often, think its one of the reasons it took me so long. but i always dusted myself off and got back on the horse, looking for a dx, and help. we need to take breaks from medical world, or we'd go batty, but then we have to keep at it. we're here for you as you keep searching for help.

as for the IBS. there too you need to find someone who will investigate. here, they recommend colonoscopies every few years, even for people without GI symptoms, once they reach 50 or so. with GI symptoms, more often. at the least, you should be given a colonoscopy. and its not that much harder to search the colon all the way back to the ileum, the most common location (i believe) to find inflammation. other than a few small polyps, my large intestine was clean. but i had / have inflammation and small crohn's like ulcers in my ileum. biopsied and crohn's ruled out. but the inflammation and ulcerations helped seal the deal on my dx. so be insistent there as well. and find a good gastroenterologist that will check it out.

in the meantime, maybe probiotics. they have helped my IBS a lot.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Jan 2010
Posts: 2,105
C
Major_AS_Kicker
Offline
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C
Joined: Jan 2010
Posts: 2,105
Yes, we do get "routine bowel screening" for over 50's in the UK, but all it is is occult blood examination on poo samples with a home screening ki that you post back. I did have a sigmoidoscopy about 5 years ago in order to do a rectal biopsy (for amyloidosis), but because they didn't give me a proper prep, they didn't go very far with the scope and the rectal biopsy was the only one they did and didn't see any further. Several times early on my docs said I was to have a gastro referral, but once I saw the gastro to do that rectal biopsy, that box has been ticked and I have been told that I have now had enough gastro investigations, as there has been nothing new since them develop. Low starch definitely helps my gut stuff, but the problem is that if I am flaring and tired then its too hard to do low starch so I flare some more - vicious circle.

Joined: May 2009
Posts: 492
Warrior_AS_Kicker
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Posts: 492
I've been diagnosed USpA. Like others have alluded to, it's likely pre-AS. If I don't control the inflammation, it will likely progress to full-blown AS. There is no radiologic evidence in my x-rays or MRI, but then again, I think waiting to diagnose someone by using that criteria does a major disservice to the patient, but that's a whole 'nother topic...

I wouldn't call my diagnosis straightforward, but I was very lucky after a miserable journey through my 20's and early 30's. Though I had experienced numerous soft tissue injuries through the years, I always saw orthopedists and always found a way to rehab and get out again. Between my 20's and mid-30's, I had a really severe case of bicipital tendonitis, numerous leg injuries, shin splints, difficulty breathing, misaligned rib, back spasms, etc. I ultimately went into major flare in my late 30's - I believe a cortisone shot triggered it, but it's possible other things contributed to the flare. The symptoms were classic AS symptoms: morning back stiffness, constant pain in the hip / SI joint, etc. The flare was so severe, that within 3 months, I couldn't take care of myself. It hurt so much to sit, I ended up using a toilet booster seat in the bathroom. frown Ultimately, my brother-in-law confronted me, told me to stop seeing orthopedists, and I moved back in with my parents while I figured out what was going on.

I saw a neurologist (ruling out MS) and a rheumatologist. On my first visit, my rheumy theorized a number of possibilities, with AS being one of the possible suspects. One month later, he said that my all my x-rays and MRIs were clean, but he said it could take years for evidence to appear on those tests. He also noted a slightly elevated inflammation tests, but it wasn't as off the charts as others experience. I was HLA-B27+ but he said that many people with the gene are fine. He said that he suspects that I had a spondyloarthropathy and he prescribed NSAIDs and Celebrex to me, but I rejected the treatment plan exploring other paths concurrently. When I first read all the experiences that other people had on the SAA forum and the KickAS forum, it was very clear to me that I had spondylitis.

Some of my old posts talk a lot about my treatment plan, so I'll just try to provide a reader's digest version. Started out with acupuncture. This was huge for me. I was fortunate enough to find someone who could help me, and within 1 month, 80% of the pain and stiffness was gone. I think there's a high variability in results with this, and I suspect that not all acupuncturists are equally effective at helping people.

During this time, I also started tinkering around with my diet. First going gluten and dairy free at the request of my physical therapist. Noticing measurable changes in my digestion, I kept with it. Eventually, I found this forum (Thank you KA!), and experimented with the NSD. It was very clear to me early on that the diet had a profound impact on me, and I kept with it. As I continued to progress, I kept tinkering around with the diet and eventually settled for a no starch / no sugar diet. The main principal is not only removing all starches, but eating in a way that strengthens your immune system (e.g. if you believe that sugar weakens your immune system, remove it from the diet). 2.5 years later, it's pretty clear to me that a very strict diet is instrumental in keeping the spondy beast at bay. I opted for this approach because I knew that the spondy wouldn't go away magically - I had to find the best long term way to manage the disease. While medicine was an option, if a less toxic modality was effective, that would serve me best over the long term and that's the path that I went down.

There are other things that I fold into my treatment, but if I had to rank order the importance of each...
1. Diet
2. Acupuncture
3. (Activator) Chiropractic adjustment for maintenance (for those who have more extensive damage, I would be very careful pursuing this as a therapy)
4. Physical Therapy / Pilates / Walking
5. IR Sauna

There's a pretty big drop off after 2, but I think that everything works together in a certain degree. All things considered, I went from the lowest point in my life, having everything slip away, to being in a much better place. I regret all the lost years from dealing with a myriad of injuries (that healed so slowly), but appreciate things so much more now. The diet is insanely inconvenient, but in some aspects I feel so much better now than in any time of my life. No more sinus infections... I haven't gotten sick since I started on the diet... It's been slow, but steady progress in terms of getting my strength back. My biggest frustration is that I can't push myself as hard as I used to. No more working on 4 hours sleep. I need at least 8 hours to feel good.

I've been very fortunate in so many regards, with one of the biggest breaks being finding a rheumy who suspected AS in the first place. Without that nugget, I wouldn't have been able to find the information I needed to manage the disease successfully. The information on these forums was invaluable to me. It helped point me in many different directions, and exposed me to different options that I would never have considered. I appreciate all the people posting their experiences or reaching out to me with their ideas. That ultimately helped me determine the best management plan for myself. Lastly, I can't emphasize enough how helpful it was to have unwavering support for my family, friends, and colleagues; I never could have made my way back without them.

Hope that helps. Feel free to PM me if you want more details on anything. I just hope you find something that works for you and leads you to more comfort. All the best.


"But I also have to say, for the umpty-umpth time, that life isn't fair. It's just fairer than death, that's all." -- from William Goldman's _Princess Bride_
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