AS

[Guest guest]

My son (35) has this too. I have tried to get him on the diet, he just can't see

to be bothered. I think it would help him lots. He knows enough not to eat

potatoes and tomatoes, but eats bread,dairy and drinks coffee (lots). He takes

Vioxx ? daily and has to have his liver checked every so often. He has had

terrible bouts with iritis, another effect of AS, needed cortisone shots in the

eyes, oy veh...

Well you can lead a horse to the water ....

Still hoping

Emmi

[Guest guest]

Tara:

My son is HLA-B27 positive and diagnosed with AS. He intially began with

hip pain and swelling. He also has enesthitis (inflammation of the

tendons) in his ankles and heels and back pain. His meds are

methotrexate, azulfidine and voltaren.

I think a precise definition of the form of juvenile arthritis is

something that sometimes evolves over time, as the rheumatologist notices

the pattern of symptoms and is able to observe them. And you are correct,

many of the meds are the same, so you are treating the disease. Maybe

someday the meds will be more disease specific.

The new book out recently (It's Not Just Growing Pains) is an excellent

tool to learn about the various forms. I would highly recommend it.

We are all here for you as you begin this journey.

and Rob 15 Spondy

On Tue, 29 Jun 2004 14:09:03 -0000 " tara2002amanda "

<bambam31900@...> writes:

Hello...'s Doctor said she also has AS (Ankylosing

Spondylitis) along with JRA (poly). I have read tons of things and

NOTHING sounds like her. I just read on Juvenile Psoriatic

Arthritis, and this sounds more of what the doctor said her symptoms

are. He said she had pitting under her nails (which I can't see)

and a sausage toe. I am really confused now and have no idea if she

has AS or JPA or what. I know she definitly has JRA (poly), but

does anyone have any knowledge or experience with the AS or JPA??

She was HLA-B27 negative. I don't know if I should get a 2nd

opinion or just go with it since the meds she is taking are

effective for these also. Any help would be greatly appreciated.

Tara and 2

[Guest guest]

I did not receive the original email for this post, so I am going to hop

onto 's. Chris' drs have often asked if psoriasis ran in the family

(it does not) and often thought might have that, but settled on

the AS diagnosis. I think, through my reading, there are many

similarities between the two. and Rob have the same pain with the

tendons and heels. That is where the AS diagnosis comes from for

in addition to the back and neck issues. I think the treatment is the

same for either AS or psoriasis, unless you have the rash that comes

with psoriasis. also is HLA-B27 neg. As long as your treatments

are helping, I think you are doing all you can. A second opinion would

be totally up to you, if you think it would ease your mind. Michele

( 17, pauci & spondy)

Re: AS

Tara:

My son is HLA-B27 positive and diagnosed with AS. He intially began with

hip pain and swelling. He also has enesthitis (inflammation of the

tendons) in his ankles and heels and back pain. His meds are

methotrexate, azulfidine and voltaren. I think a precise definition of

the form of juvenile arthritis is something that sometimes evolves over

time, as the rheumatologist notices the pattern of symptoms and is able

to observe them. And you are correct, many of the meds are the same, so

you are treating the disease. Maybe someday the meds will be more

disease specific. The new book out recently (It's Not Just Growing

Pains) is an excellent tool to learn about the various forms. I would

highly recommend it. We are all here for you as you begin this journey.

and Rob 15 Spondy

On Tue, 29 Jun 2004 14:09:03 -0000 " tara2002amanda "

<bambam31900@...> writes: Hello...'s Doctor said she also

has AS (Ankylosing

Spondylitis) along with JRA (poly). I have read tons of things and

NOTHING sounds like her. I just read on Juvenile Psoriatic

Arthritis, and this sounds more of what the doctor said her symptoms

are. He said she had pitting under her nails (which I can't see)

and a sausage toe. I am really confused now and have no idea if she

has AS or JPA or what. I know she definitly has JRA (poly), but

does anyone have any knowledge or experience with the AS or JPA??

She was HLA-B27 negative. I don't know if I should get a 2nd

opinion or just go with it since the meds she is taking are

effective for these also. Any help would be greatly appreciated.

Tara and 2

[Guest guest]

Could you let me know what AS is? My son was told he has Reiters Syndrome, but

he does not have the gene. What I am trying to find out is could it be

something else since he doesn't have gene, or are there cases even if the gene

is not present. Any thoughts? Thank you.

----- Original Message -----

From: Jane Pollock

In response to " Hi,My son 25, has AS since he was in high school "

[Guest guest]

AS stands for Ankylosing Spondylitis which is a form of Arthritis. I believe

the genes are just

indicators and put you at higher risk, but don't necessarily have to be present.

At least this is

how it has been explained to us.

Myndi

>

> Could you let me know what AS is?

>

>

> ----- Original Message -----

> From: Jane Pollock

>

>

> In response to " Hi,My son 25, has AS since he was in high school "

>

[Guest guest]

Been a long time since I could respond to any questions. But I'm still

around.

I was diagnosed with RS (Reiter's Syndrome, aka Reactive Arthritis). I do

not have the HLA-B27 marker (gene). Some doctors since the diagnosis have

said that they don't believe I could have RS, other doctors have told me

that 15 to 25 percent of those with RS do not have the genetic marker. Yes,

his actual diagnosis could be something else, but that is a question only

his doctors could ultimately answer.

As for me, I have no doubt that I had/have RS/ReA. On top of that diagnosis

was added Fibromyalgia several years ago. Neither one by itself explains

all the symptoms. It takes both diagnoses to cover all the symptoms I

have/had.

Ray Neal

Ray in Tennessee

From: [mailto: ] On Behalf Of

Jeannie Fylystyn

Sent: Friday, November 14, 2008 9:59 AM

Subject: Re: AS

Could you let me know what AS is? My son was told he has Reiters Syndrome,

but he does not have the gene. What I am trying to find out is could it be

something else since he doesn't have gene, or are there cases even if the

gene is not present. Any thoughts? Thank you.

----- Original Message -----

From: Jane Pollock

In response to " Hi,My son 25, has AS since he was in high school "

[Guest guest]

Hi there,

I have Reiters and have also tested negative for the gene. As I

understand it this is good news--it seems that people without the gene

sometimes respond better to certain treatments (according to G.

Lahita's 'women and autoimmune disease')and it's been hinted to me

that in some cases the severity of the disease is less in those

without the gene (although I'm far from certain about this but my

doctor has implied it indirectly).

All the Best,

>

> Could you let me know what AS is? My son was told he has Reiters

Syndrome, but he does not have the gene.

[Guest guest]

Thank you for your response. Much appreciated!!!!

----- Original Message -----

From: btownblue

[Guest guest]

I've been taking 600 mg ALA for Hep C daily for the past 2 years and have had no problems. Others that I know have had problems with stomach upset, so it is important to take it with food.

Mayo has done studies with diabetic neuropathy and it is showing great promise in all types of neuropathy. There's currently a clinical trial underway for HIV Peripheral Neuropathy as well.

It is also very important to take B Complex supplements with ALA as well. Folks with diabetes need to monitor their blood sugar as ALA has been known to lower it.

Here's a pubmed abstract about ALA and neuropathy - there are others listed as well:

http://www.ncbi.nlm.nih.gov/pubmed/9285502

Hope this helps!

Nola Chris

I saw that there are clinical trials

In a message dated 7/10/2009 10:06:35 P.M. Central Daylight Time, kwendt@... writes:

ALA sounds like a nice partner for LDN and I don't know of any side effects? If anyone has any similar problems eliminated from the combination, would love to hear. If anyone knows of any side effects I might encounter, would like to hear about that as well.Thanks, A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

I've posted here before - have ankylosing spondylitis, RA, Crohns, fibro,

sjogrens (eye inflammation).

I've been taking LDN 3.0mg for a bit over six months. It's amazing how much

better my quality of life has become. I take 3.0 mg of melotonin before bed and

would say I sleep very good. Occasionally if I slip and eat something with

gluten - I pay for it in loss of sleep, constipation, loss of energy, etc.

The only thing that had been ongoing was the neuropathy mainly in my right leg.

If I sat for too long I would get pain running down from mid thigh to mid calf.

Occasionally laying down would cause it. ND said it could be calcium deficiency

so I took a higher dose. That didn't help. Doctor said probably pinched nerve.

Finally I was reading about Alpha Lipoic Acid and how it had shown promise in

helping neuropathy. I started on 300mg for the last two weeks and for the last

week have had NO pain. I think if I stay on it, stay off gluten consistently I

should rid myself of the pain. I also read that cancer patients have taken LDN

and alpha lipoic acid (IV form) and have had some good results.

ALA sounds like a nice partner for LDN and I don't know of any side effects? If

anyone has any similar problems eliminated from the combination, would love to

hear. If anyone knows of any side effects I might encounter, would like to hear

about that as well.

Thanks,

[Guest guest]

Hi ,

Thank you for your posting. I would like to ask you the following questions:

1) Who is administrating the dispensing of LDN? Is it your Rheumatologist?

2) How long she has been using this therapy? What are the side effects that she is experiencing?

3) Who (doctor?) recommended the LDN therapy with the combination of gluten free diet, etc.?

Thank you again.

Bhaskar

From: <kwendt@...>Subject: [low dose naltrexone] ASlow dose naltrexone Date: Friday, July 10, 2009, 8:05 PM

I've posted here before - have ankylosing spondylitis, RA, Crohns, fibro, sjogrens (eye inflammation) .I've been taking LDN 3.0mg for a bit over six months. It's amazing how much better my quality of life has become. I take 3.0 mg of melotonin before bed and would say I sleep very good. Occasionally if I slip and eat something with gluten - I pay for it in loss of sleep, constipation, loss of energy, etc. The only thing that had been ongoing was the neuropathy mainly in my right leg. If I sat for too long I would get pain running down from mid thigh to mid calf. Occasionally laying down would cause it. ND said it could be calcium deficiency so I took a higher dose. That didn't help. Doctor said probably pinched nerve.Finally I was reading about Alpha Lipoic Acid and how it had shown promise in helping neuropathy. I started on 300mg for the last two weeks and for the last week have had NO pain. I think if I stay on it, stay off gluten

consistently I should rid myself of the pain. I also read that cancer patients have taken LDN and alpha lipoic acid (IV form) and have had some good results. ALA sounds like a nice partner for LDN and I don't know of any side effects? If anyone has any similar problems eliminated from the combination, would love to hear. If anyone knows of any side effects I might encounter, would like to hear about that as well.Thanks,