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#419379 - 11/10/10 08:56 PM Re: Anyone trying/tried LDN for RA? [Re: ValsMum]
EricaK Offline
Imperial_AS_Kicker

Registered: 06/23/10
Posts: 3288
Loc: Colorado, USA
Yesiree! I've been checked from head to toe.

Two CT scans. Several MRI's. Colonoscopy. Hysteroscopy. Many many vials of blood over a 2 year period. XRays. Ultrasounds. Accupuncture. PT. Massage. Neurologist. Ophthalmologist. Rheumatologist. Gynecologist....

What they all say is ~ and I'm paraphrasing ~ "Wow! You're in really good shape for how crappy your blood work looks and how many diseases you seem to have!"

I just think rheum. issues are by nature somewhat bizarre. I feel blessed that I'm not as sick as my sisters and that so far I don't have MS, which three other people in my family have been dealt.

But, back to the LDN for RA question: why not? It's on the list of diseases it's used for, it's cheap, and it's not dangerous. I just recommend NOT taking it during the day.
_________________________
ANA+ RF+ Rh- HLAB27+
Dx AS 2009,HMs 2010,JRA 1967

Movin' it so I don't lose it!


Top
#419381 - 11/10/10 09:10 PM Re: Anyone trying/tried LDN for RA? [Re: EricaK]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 19052
Loc: Upstate NY
and maybe by taking the LDN, you'll avoid developing MS since that's the one disease that LDN seems most impressive for......i've watched the youtubes, read some of the clinical studies. roll
_________________________


sue

USpA
LDN/zanaflex/flector
vits C, D. probiotics. fish oil. CoQ, Mg, Ca
pred taper for flares
occasional naproxen / Aleve
chiro
walk
no dairy (casein sensitivity), limited eggs
future: humira, soon I hope

Top
#419389 - 11/10/10 09:36 PM Re: Anyone trying/tried LDN for RA? [Re: WendyR]
EricaK Offline
Imperial_AS_Kicker

Registered: 06/23/10
Posts: 3288
Loc: Colorado, USA
Originally Posted By: WendyR
Erika - you have a butterfly rash but no diagnosis of lupus? Even though your sister has it?


Ahem... I haven't exactly admitted it in exactly that way to the doctor yet. Um... sort of sidstepped the questions about lupus.... I just don't want to get poked and prodded anymore this year, and it's periodic.... blush

I tell you people way more than I tell my family or my doctors. angel3d
_________________________
ANA+ RF+ Rh- HLAB27+
Dx AS 2009,HMs 2010,JRA 1967

Movin' it so I don't lose it!


Top
#419390 - 11/10/10 09:41 PM Re: Anyone trying/tried LDN for RA? [Re: WendyR]
EricaK Offline
Imperial_AS_Kicker

Registered: 06/23/10
Posts: 3288
Loc: Colorado, USA
Originally Posted By: WendyR
I was told it was the systemic inflammation.


I get random fevers that seem to come in periods of stress, but again... almost flat inflammation. I wonder if there's something underlying that CAUSES inflammation in ADDITION to pain? And then the chronic inflammation causes joint damage? That might be why my joints are in such good shape. Just an idea. I really am not trusting doctors as much as I used to. And I'm in a crappy mood tonight.

Maybe I should go to bed even though it's 7:40... that makes me feel so ridiculous when I do that.
_________________________
ANA+ RF+ Rh- HLAB27+
Dx AS 2009,HMs 2010,JRA 1967

Movin' it so I don't lose it!


Top
#419392 - 11/10/10 09:50 PM Re: Anyone trying/tried LDN for RA? [Re: EricaK]
WendyR Offline


Registered: 12/23/08
Posts: 4967
Loc: BC, Canada
The pain doesn't cause the inflammation - the inflammation causes the pain! And causes the joint damage. My joints are still in good shape but I haven't had RA for all that long - approx three years. Also I've got the inflammation under control now with methotrexate, prednisone and celebrex. So I'm hoping to avoid joint damage.

My grandmother's hands and feet were horrifically deformed - that's what I'm trying to avoid.

I still puzzle about why inflammation doesn't show up in blood tests for some people. It's very odd I think.
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex

Top
#419394 - 11/10/10 09:58 PM Re: Anyone trying/tried LDN for RA? [Re: WendyR]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 19052
Loc: Upstate NY
Originally Posted By: WendyR
I still puzzle about why inflammation doesn't show up in blood tests for some people. It's very odd I think.


very recently i found a nice simple explanation for why it doesn't show up for those of us with enthesitis as our primary inflammatory site: a reference said that the entheses are primarily avascular structures.
_________________________


sue

USpA
LDN/zanaflex/flector
vits C, D. probiotics. fish oil. CoQ, Mg, Ca
pred taper for flares
occasional naproxen / Aleve
chiro
walk
no dairy (casein sensitivity), limited eggs
future: humira, soon I hope

Top
#419395 - 11/10/10 09:59 PM Re: Anyone trying/tried LDN for RA? [Re: Sue22]
WendyR Offline


Registered: 12/23/08
Posts: 4967
Loc: BC, Canada
I know people with RA who don't have high levels of systemic inflammation and RA is not a disease of the entheses.
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex

Top
#419403 - 11/10/10 10:23 PM Re: Anyone trying/tried LDN for RA? [Re: WendyR]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 19052
Loc: Upstate NY
well that certainly is more puzzling! crazy
_________________________


sue

USpA
LDN/zanaflex/flector
vits C, D. probiotics. fish oil. CoQ, Mg, Ca
pred taper for flares
occasional naproxen / Aleve
chiro
walk
no dairy (casein sensitivity), limited eggs
future: humira, soon I hope

Top
#419462 - 11/11/10 09:22 AM Re: Anyone trying/tried LDN for RA? [Re: Sue22]
EricaK Offline
Imperial_AS_Kicker

Registered: 06/23/10
Posts: 3288
Loc: Colorado, USA
Originally Posted By: Sue22
Originally Posted By: WendyR
I still puzzle about why inflammation doesn't show up in blood tests for some people. It's very odd I think.

avascular structures.


New rules for EricaK. No more reading KickAS in the early AM. Now I have "avascular" stuck in my head. No blood to the area. AVASCULAR AVASCULAR AVASCULAR...

roll
_________________________
ANA+ RF+ Rh- HLAB27+
Dx AS 2009,HMs 2010,JRA 1967

Movin' it so I don't lose it!


Top
#419515 - 11/11/10 05:40 PM Re: Anyone trying/tried LDN for RA? [Re: EricaK]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 19052
Loc: Upstate NY
what you need is a good tune stuck in your head instead......may i lend you "midnight train to georgia"! that's what's been stuck in my head all day today! roll
_________________________


sue

USpA
LDN/zanaflex/flector
vits C, D. probiotics. fish oil. CoQ, Mg, Ca
pred taper for flares
occasional naproxen / Aleve
chiro
walk
no dairy (casein sensitivity), limited eggs
future: humira, soon I hope

Top
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