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#518266 - 02/16/18 07:46 AM Psoriatic Arthritis
Sue22 Offline

Registered: 01/13/08
Posts: 21321
Loc: Upstate NY
Can you have psoriatic arthritis if your mildest symptom has been the psoriasis and your worst symptoms have been the joint problems and the GI problems?

This is the question I will be asking my rheumy next visit. He landed on this dx after our last visit. But we've also landed on undiff spondy, just spondy, crohns / IBD, AS, and now this one, psoriatic. arthritis.

I started with chronic constipation since I can remember, before I started school, probably my entire life.

Then severe gastritis and undigested diarrhea at age 30 that persisted unabated for a year and then off and on since then.

Then at age 35, severe neck pain and severe wrist enthesitis. A year later the severe SI joint inflammatory flares started. Then after that things creeped in.

I don't really know when the psoriasis started because until I was dx'ed with a spondy, I never connected that to my joint and GI problems. I just always thought I had "dry skin". "Weird" dry skin, where I'd get these flaky patches in the oddest places for no apparently good reason, but still, had no clue it was psoriasis.

My aunt was dx'ed with psoriatic arthritis, but her psoriasis has always been worse.

Can one have a milder case if one is fanatical about keeping one's skin as moist as possible...never use soap, only hydrating shower gels and such, lots of all natural moisturizers like coconut oil, shea butter, aloe..and always used eucerin on those stubborn spots?

For what it's worth, for 12 years, no doctor ever connected the GI inflammation and the joint inflammation (and the skin problems)...I'd go to a rheumy about my joints and he'd never ask me about GI or skin. I'd go to the gastroenterologist and he'd never ask me about joints or skin. I never saw a dermatologist for such mild skin problems til more recently. and my GPs who knew about all the symptoms couldn't make the connections. I made the connections by watching "mystery diagnosis" in december 2007. Found KA in january 2008. Had it largely figured out when I finally got a spondy dx in sept 2010. started humira june 2013 after nsaids and steroids were needed more than my body could handle.

So, which spondy do I have? Does it matter? How can it be sorted out if I have all the symptoms,

but no evidence of fusing, no biopsy of crohns (in all fairness, never had a colonoscopy done during a flare, or even close to a GI flare...and did find "inflammation and small crohns like ulcers in the ileum, but not officially crohns at that time (2009).

If my rheumy wasn't retiring, I wouldn't care, as he's saved my career and sanity, if not my life. But he is retiring and so this is why I'm finding it may matter now to know which it is.


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.
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

#518267 - 02/16/18 09:54 AM Re: Psoriatic Arthritis [Re: Sue22]
Robin_H Offline

Registered: 09/13/15
Posts: 198
Loc: Hubei, China
Giving doctors the "big picture": most don't want to hear to avoid burnout -- "compassion fatigue"

When I try to tell a GI doctor about the inflammation in the sacrum and the rest of the spine and skull she says to tell a rheumatologist or my internist.

I saw an ENT about sinus and nasal pain and tried telling her about the sacrum and GI issues and she didn't care and told me to tell an internist.

and so on...

My experience gives me a strong impression that my symptoms are all connected through a couple of interacting fundamental causes. Doctors know everything is connected but can't dedicate the time and brain power to find each person's special triggers.

Bottom line is that they have been trained in a way that isolates them in to their silos. They don't want a complicated problem.

I met a fresh, new GP when I was 25 y.o. Ten years later I had to see a retinal specialist and it was him. I said, "I recall you worked at the clinic on such and such street ten years ago. Why did you become a retinologist?"

His response was, "I couldn't stand seeing those people about all there different problems and so I went back to school to specialize."

He said it with a tone of disdain about having to recall the memories.

Over ten years ago Dr Brian Goldman in an episode of "White Coat Black Art" talked exactly about how doctors do not like complicated patients and try to limit how many they have. Half of doctors are burned out.

It's frustrating but there are a few clinics that specialize in tough cases:

Going to one of those places could actually save some people lots of time and money. I read of extreme cases where a patient's cost was reduced to about 1% of the cost of patients that wander around to a couple dozen specialists getting nowhere.

Sue22, maybe you have LGS and some kind of gut dysbiosis due to a pathogen. I'm doubting that I have bonafide AS since I have no fusion. I do have spondylitis but most people do to some degree.
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) from NSAID use developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap in 2013. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

#518277 - 02/20/18 07:34 PM Re: Psoriatic Arthritis [Re: Sue22]
Winter Offline

Registered: 12/01/10
Posts: 448
Hi Sue- I doubt your rheumatologist will change your AS diagnosis. He may be adding the psoriasis diagnosis to open more doors to medications for you. My rheumatologist told me it is very common to have more than one autoimmune disease. You can take double dose of Cosentyx if you have psoriasis but if you just have AS, you get the lower dose. The psoriasis diagnosis may work to your advantage if you ever have to change biologics.

Meds -Prednisone 2 mg , gabapentin , Cosentyx and topical NSAID

#518279 - 02/20/18 10:44 PM Re: Psoriatic Arthritis [Re: Sue22]
jay_bharat Offline

Registered: 12/08/08
Posts: 711
Loc: INDIA, Tamil Nadu
Hi Sue,
Sorry to note the issues.

I am not clear from your post whether you are ruling out AS in place of psoriatic artritis.

I was told that I am not having AS after 10 years of biologics. A shocking news considering the physical and mental agony, I have faced. Now it is being suspected as Fibro. During this intervening period, I listed out all the medical reports, sorted them image wise & date wise etc., and discussed with two rheumies. It is slowly suspected against AS.

I would suggest if you are suspecting against AS, list out all the medical reports from the beginning and make a study with symptoms. The initial reports are useful. The same can be shown during discussion with doctor.

I feel you would have already done this. However, just a thought.


#518284 - 02/23/18 01:18 PM Re: Psoriatic Arthritis [Re: Sue22]
Smed Offline

Registered: 09/05/01
Posts: 937
I have both -- Know I have AS because back is fused and elbows have psoriatic arthitis.


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