banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Kickas Links
·HOME
·Forums Main Index
·Register!
MEDICAL CENTRE
·Medicine Contract
·AS Patient Guidebook
·Pain Map
·Disease Modification
·Ask your doctor
·AS and RA Papers
·AS Acronyms
DIET CENTRE
·London AS Diet
·Molecular Mimicry
·AS Dietary Primer
·AS Food Guide
SUPPORT CENTRE
·In Memorium
·KickAS Stories
·KickAS Banners
·Donations
Forum Stats
13,173 Registered Members
28 Forums
43,574 Topics
517,442 Posts

Most users ever online: 1,568 @ 06/29/16 03:25 PM
Newest Members
LWebb, trying2help, lauralourdu, volodumyr, Russell66
13173 Registered Users
KickAs Team
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)

Moderators:
- Tim (Dotyisle)
- Chelsea (Kiwi)
- Megan (Megan)
- Wendy (WendyR)
- John (Cheerful)
- Chris (fyrfytr187)

QR Code
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
Topic Options
#518266 - 02/16/18 07:46 AM Psoriatic Arthritis
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21331
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.
_________________________

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)

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

Registered: 09/13/15
Posts: 282
Loc: Central Canada
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. http://www.cbc.ca/radio/podcasts/current-affairs-information/white-coat-black-art/ 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, vague AS symptoms in 20s and early 30s
1993:fibromyalgia (age 25)
2013.07:Scratched by a sick cat
2013.08:Reverse blockage in a SCUBA accident
2013.09:Strange sore throat then meningitis
2014:Chronic inflammation at the base of the skull
2014 to early 2015:excess NSAID use developed complete axial inflammation, included psoriasis
NSD helped well and but was not perfect
2018.07: weak +'ve tests for borrelia, babesia, bartonella and mycoplasma pneumonia using Armin Lab, ANA=equivocal

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

Registered: 12/01/10
Posts: 450
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.

Shari
_________________________
Meds -Prednisone, Stelara

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

Registered: 12/08/08
Posts: 715
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.

Jay

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

Registered: 09/05/01
Posts: 948
I have both -- Know I have AS because back is fused and elbows have psoriatic arthitis.

Top
#518776 - 06/12/18 10:53 PM Re: Psoriatic Arthritis [Re: Sue22]
Janclebro Offline
Member

Registered: 09/26/16
Posts: 37
Loc: Cape Town, South Africa
Hi Sue, it seems that, like me, you don't fit the typical profile of any one disease, which makes it difficult for your rheumatologist to put you into a specific category. The various illnesses you describe fall into the spondyloarthropathy category, and clearly you have symptoms of several of the diseases within that category but it would seem that you fit none of them to a tee. My feeling is that it doesn't really matter. You've been diagnosed with spondyloarthropathy, and whether your main symptoms are AS or PA probably doesn't matter that much. I too am HLA B27 negative, I have symptoms of AS but have also had psoriasis and a very inflamed gut.... Some of us just don't fit perfectly into a category!
_________________________
Spondyloarthropathy with symptoms of AS, Sjögrens and fibro. Previously took Celebrex, Methotrexate, Trepiline, Prednisone which seemed to trigger a flare and my illness became much worse. Symptoms now kept mostly under control with NSD, as well as cutting sugar, dairy and yeast and food intolerances. Mostly pain free now and all symptoms massively improved.

Top
#518784 - 06/16/18 02:01 AM Re: Psoriatic Arthritis [Re: Janclebro]
Robin_H Offline
Third_Degree_AS_Kicker

Registered: 09/13/15
Posts: 282
Loc: Central Canada
Hello Sue:

Have you tried your own suggestion of using coconut oil, shea butter, etc on your dry skin spots and has it made an improvement? I have considered using regular massages with essential oils that are spiked with tea tree oil or oregano oil since I am convinced that various proportions of a lot of auto-immune diseases are caused by long-term stealth infections that can live in any tissues. The idea is that not only will the essential oils suppress the infections in the skin but also get into the body through the skin and effect other organs.

I have so many neuralgias now that I can not believe that any are authentic, as in, due to a genetic defect or immune disorder that that has no extrinsic cause. My history and personal experience, combined with all the studying I have been doing, strongly convinces me that a lot of us with AS really have untreated infections. Eliminate or reduce the infection load or put the infections into dormancy, and the immune system along with damaging inflammation will cease. I listened to a Lyme Disease doctor talk about her patients that have been diagnosed with anti-neurological antibodies but she stated that the antibodies that function like the anti-neurological antibodies and attack the Lyme bacteria are actually physically different than antibodies in true neurodegenertaive autoimmune disorders.

These stealth infections can change their gene expression and form to evade the immune system until the immune system catches up. Also, they can exchange genes in boifilms to learn new tricks over the years. Also as they leave one tissue type and migrate to another – say spinal enthesis to bursa, and then from bursa to lacrimal glands – they carry the surface structures of the previous tissue on their own cell membranes for camouflage however the immune system will learn to attack them and thus attack us. As these steps take place we accumulate autoimmune syndromes.

Many of us have only spinal inflammation with other uncommon, extrarticular symptoms, but no kyphosis or bamboo spine forming. There are so many disease that can cause spinal inflammation which are not AS yet will likely be diagnosed as AS by some doctors. Many of these alternative diagnoses that look like AS will turn out to be infections but doctors simply do not have the tools to test for them all; one of which is Lyme Disease., others just are waiting in our gut for us to do something to damage the gut-blood barrier. http://science.sciencemag.org/content/359/6380/1156

I have no fusion or kyphosis. The cervical joint are rapidly being damaged in the past few years. I was told that I have IBS because of loose stools and food sensitivities (no starch tolerance but no gut pain) but I think IBS really is a misdiagnosis and it really is an infection. A couple years ago Pudendal neuralgia developed. Almost a year ago I began developing tingling and stinging in the heels, then burning in the shins, now twitching and micro-cramping in the calves along with sore hamstrings and buttocks. A few months ago the sweat and oil glands in my forearms and hands shut off. I can see skin in areas rapidly thinning and becoming dry. Then Sjögrens syndrome that comes and goes. And now raw, soft, stiff and tender finger and toe joints that have no visual swelling.

All these symptoms grew as if infections slowly moved to adjacent tissue or learned how to jump to a new tissue type. In the beginning (25 years ago) all that was effected was a small area between my shoulder blades and my sinuses. Those two little problems existed for 20 years and it is like my immune system was not too busy so that it could keep them corralled. Then a new environmental pathogen was introduced and freed my old prisoners to let them spread and reproduce. I have accumulated too many enemies and need to bring in an external army – damn immigrants that don't want to integrate!

I believe that there is going to be a huge turf war between doctors of infectious disease, rheumatology, dementia, multiple sclerosis, etc. Egos will be a problem and the politics and economics between the government, authoritative bodies like the AMA and IDSA, maverick doctors and of course insurance companies is rather disgusting. For sure the insurance companies are pressuring the AMA and IDSA to deny the connection between stealth infections and other already accepted beliefs in order to deny a patient treatment.

I rant like this in hopes that some of you who haven't heard of such ideas will consider pushing to get outside the rheumatology box. A Lyme Disease patient and her doctor in this video have the lowest opinion of rheumatologists. Lyme disease doctors often get patients that were previously diagnosed with forms of arthritis or MS, Parkinsons, and many other neurological syndromes. When a Lyme disease doctor cures an MS patient or such that has been suffering for a couple of decades then it really must hurt the quacks in the other fields.

(2:10:08) 2018 LymeConnection.org Conference

Top
#518835 - 07/15/18 01:35 PM Psoriatic Arthritis [Re: Sue22]
pspondylitis Offline
Journeyman_AS_Kicker

Registered: 03/18/12
Posts: 115
Psoriatic arthritis can present in a variety of ways. One such way is that it affects the spine, pretty much like it affects people with AS. From a treatment point of view, it probably makes little difference whether you have AS or psoriatic arthritis affecting the spine, inthe sense that treatment is similar. I am no expert though.


Edited by pspondylitis (07/15/18 01:36 PM)
_________________________
Age 52. Psoriatic spondylitis. HLA B27 negative. MRI negative.

Top

Who's Online
0 registered (), 72 Guests and 3 Spiders online.
Key: Admin, Global Mod, Mod
Recent Posts
THC/CBD vaping oil works for R.Artritis 100%
by trying2help
Yesterday at 06:32 PM
THC/CBD vaping oil works for R.Artritis 100%
by trying2help
Yesterday at 09:54 AM
Borage seed oil
by lulu12
12/13/18 06:15 AM
Can AS cause weight loss?
by thebluedog
12/12/18 01:00 PM
Citrate-free Humira = Less / No Pain
by Sue22
12/07/18 08:33 AM
No starch diet CRP open source experiment
by GeorgeHolland10
12/07/18 03:30 AM
cosentyx works great
by finnari
12/05/18 01:19 PM
(Views)Popular Topics
"FITNESS" TEAM! - All Physical Activity & Sports 41,238,227
hmmm 2,170,708
Has anyone had Pedicle subtraction Osteotomy ? 1,807,181
What to do about healthcare? Can it be fixed? 1,211,983
User names revisited 984,381
Medicinal Marijuana 909,619
A.S and beds, What do you find best? 905,093
OMG!!!! 847,514
No/Low Starch Diet Success Stories 651,575
THE STARCH CONTENT OF FOODS - THE LIST 465,906