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#468670 - 05/01/12 10:01 AM You Have it!
Lon Offline
Very_Addicted_to_AS_Kickin

Registered: 09/11/01
Posts: 8342
Loc: Gillette, Wyoming
The specialist, who was following up on my infection and pneumonia said, "wow, you sure did have a RA reaction while in the hospital".
strange how no one other than him has said so.

He did not even listen to my lungs, but said my Bp was way too high..

Hang in there my friends. Those with other diagnosis, often stay here, because we seem to keep have "other diagnosis" but end up back here at KA.
_________________________
1 Kings 20:1-22
ne triumphum canas ante victoriam.




Lon

Top
#468672 - 05/01/12 10:55 AM Re: You Have it! [Re: Lon]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21298
Loc: Upstate NY
hi lon,

though dx'ed with undiff spondy, and that really does seem to be it,

told my current rheumy "i don't care what we call it, so long as we can successfully treat it."

and we are, more or less. at least making major improvements in between flares.

and if no negative side effects, hitting periodic flares with short course of pred.

even if the dx were to "change", the things we are doing, things that i get the impression help lots of autoimmune / autoinflammatory things, seem to be working.

i personally think there is:

1. a lot of overlap in symptoms between the various autoimmune / autoinflammatory diseases

2. maybe even better dx's that lie between the recognized dx's,
at least several of my good doctors have indicated that that is their belief as well.
_________________________


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
#468681 - 05/01/12 12:19 PM Re: You Have it! [Re: Sue22]
Lon Offline
Very_Addicted_to_AS_Kickin

Registered: 09/11/01
Posts: 8342
Loc: Gillette, Wyoming
Sue,
My Dr. some years ago used the phrase every time I saw him:
"undiff spondy,"
after having so much anit-biotic, and no starch for a week while in the hospital... I realize how much better I felt for a few weeks. But finding the doctor to prescribe the antibiotics is the tough thing..

I red your posts and continue to be amazed at how much tenacity you have and what you are learning helps so many others.

Lon

Top
#468690 - 05/01/12 07:02 PM Re: You Have it! [Re: Lon]
ValsMum Offline
Steel_AS_Kicker

Registered: 07/05/10
Posts: 1169
Lon,

There are quite a few Antibiotic Protocol drs in the states. I'll ask my friend today if there is one in your neck of the woods. Glad to see you are doing better. I too felt better on Clindamycin IV.
you can go to roadback.org and ask too.
Take care!!
_________________________
Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

Top
#468717 - 05/02/12 11:58 AM Re: You Have it! [Re: ValsMum]
Lon Offline
Very_Addicted_to_AS_Kickin

Registered: 09/11/01
Posts: 8342
Loc: Gillette, Wyoming
V-Mum
Thanks for a clear comment.
The low back and pelvic pain is back. So Lin needs to make a commitment with me and do this.

Thanks again.
_________________________
1 Kings 20:1-22
ne triumphum canas ante victoriam.




Lon

Top
#468730 - 05/02/12 01:46 PM Re: You Have it! [Re: Lon]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21298
Loc: Upstate NY
thanks lon!

you're the best! hugss
_________________________


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
#507034 - 10/12/14 09:34 PM Re: You Have it! [Re: Lon]
CascadeChris Offline
Member

Registered: 10/08/14
Posts: 26
Loc: Oregon, USA
Hello Kickas folks. I am grateful for all of the experience and wisdom on this site. I am also sympathetic as I acknowledge that many of you have it much harder than I. This is my first post, and I am seeking your wisdom.

I have many of the markers of AS, but I am fortunate that it has been moderate and quite manageable thus far. I am just turning 44, and have had iritis since my early 20's (about 20 to 24 years ago). It flares up about once a year and is easily controlled with prednisone drops. I had what I thought to be sciatic nerve flare ups about 4x per year, but they were easily controlled with ibuprofin, and I do not have them as often in recent years. I started to have some low morning back aches in 2007 (about 8 years ago), which subsides once I get up and moved around. The night and morning low back pain has been chronic ever since 2007 - I can't remember a night without it, and it keeps me from sleeping any more than about 7 hours unless I wake up to take 2 ibuprofin tabs. I did have a nasty flare up in 2009, with considerable night and morning pain in my lower back and my rib cage, but the flare subsided in a few weeks to a month. I haven’t had a back pain flare up since 2009, but I still and always have the chronic morning back pain.

I am very fortunate in that I currently have quite good mobility. I stretch every morning in the shower, and I can touch my toes. Due to my stretching routine, I can turn my torso quite well when backing up my car. I walk and bicycle for exercise regularly with sometimes mild pain and sometimes none at all (unless I bend my back in a special way to see if it is still there. Yes, it is always there).

I have a new little girl due in 2 weeks, so about two months ago I decided to further explore my "mild arthritic issue” with the intent to stay in good health for my new child. A doctor friend of mine said it sounded like spondylitis, and suggested I ask my primary care physician to order a HLA B27 test.

My doctor ordered the HLA B27, a SED rate (ESR) test, and a C-Reactive Protein Test. The result were HLA B27 positive, SED rate of 9mm/hr, and C-Reactive Protein at 0.1mg/dL. In plain English, I am HLA B27+, but have low inflammation activity based on the SED rate and C-Reactive protein tests. I also had a hip X-ray and my SI joints are clear, but I do have some narrowing in my hip joints and “cam type” deformities in my hips consistent with arthritis.

My doctor acknowledges I have AS symptoms and likely some level of AS. However, he told me that most all diseases present themselves in varying severity, and he felt that my AS was very mild, and it is unlikely to develop to a level which might be terribly painful or debilitating. He certainly acknowledged it could take a turn for the worse, but he said he would not expect it to do so based on my test results and current mobility.

Is it possible for a person to have mild AS? Do all cases continue to progress, or do they sometimes plateau or even subside? Any comments are greatly appreciated.
_________________________
HLA B27+, ESR 9, CRP <0.10
Moderate AS symptoms - possibly pre-AS
My goal is to stop my progression with the disease before it gets worse
Beginning the NSD 10/12/2014

Top
#507043 - 10/13/14 10:59 AM Re: You Have it! [Re: CascadeChris]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21298
Loc: Upstate NY
Hi and welcome smile

i've had bowel issues since I was a child, before I started school. The stomach inflammation started when I was 30. The joint symptoms started when I was 35. The other symptoms crept in along the way, after 35.

For me, my problems have been pretty severe (pain wise), but I flare really badly and then can be relatively ok in between the flares.

So that has been my progression.

I started Humira June 2013; I still flare, but not nearly so severely.

My flares, my rheumy and I believe, seem to be triggered by allergies.

Some of it is "food allergies" (casein in (cow) dairy, yeast (in bread), and egg protein a little.

The fact that i've always flared worse mid summer through late summer and into the fall is another indication that allergies trigger my flares. I went to an allergist and found I am allergic to dust mites and a few molds. but i think it must also be pollens as well; my rheumy thinks so too. was thinking about allergy shots, but now on Humira, things are a lot better, so the allergy shots have been put on the back burner.
_________________________


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

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