remission?

[Guest guest]

Hi ,

You have a very interesting story. May I ask if the waterbed also helped your

skin? I wonder if there is something in regular bed materials that you are

alergic to?

Doug

[Guest guest]

In a message dated 2/3/2003 5:46:50 AM Eastern Standard Time,

john.sach@... writes:

> The area that I find hard to keep pain free is

> the inside of the bottom, any sugestions.

Buy peanut oil from your local market, and put about 1/4 of the bottle in a hot

bath tub with Aveeno oatmeal bath. Sit in it for 20-minutes. You will feel much

better in that area for a few days... then do it all over again. I try to do

this every night.

[Guest guest]

I wonder if it is the heat and flexibility. I have been wearing a magnetic

knee wrap for about a month when I go to bed. I still don't know if it is

the magnets or the fact that my knee is sweaty in the morning. Either

way--it works. Everyone talks about how great it is to exercise in warm

water--why wouldn't sleeping on it also be beneficial. I might be sorry I

got rid of my waterbed 15 years ago!!!!

Ks Di

Re: [ ] Remission?

> Hi ,

> You have a very interesting story. May I ask if the waterbed also helped

your skin? I wonder if there is something in regular bed materials that you

are alergic to?

> Doug

>

>

>

> Please visit our Psoriatic Arthritis Group's informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by list member

aka(raharris@...).

>

> In August 2001 list member Jack aka(Cornishpro@...) began to

conduct extensive research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest format. Many thanks to

Jack. Back issues of the newsletter are stored on our PA webpage.

>

> Also remember that the list archives comprise a tremendous amount of

information (Over two years of messages and answers).Feel free to browse

them at your convenience.

>

> Let's hear from some of you lurkers out there! If you have a comment or

question chances are there is a person who has been around a while who can

help you out with an educated guess for an answer. If not we can at least

steer you in the right direction with a good website to go to for the

answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

>

>

[Guest guest]

You have a very interesting story. May I ask if the waterbed also

helped your skin? I wonder if there is something in regular bed

materials that you are alergic to?

Doug

Hi Doug

The bed has only helped the pa not the p.

[Guest guest]

Buy peanut oil from your local market, and put about 1/4 of the bottle

in a hot bath tub with Aveeno oatmeal bath. Sit in it for 20-minutes.

You will feel much better in that area for a few days... then do it all

over again. I try to do this every night.

Hi

Thanks for the suggestion; I will give it a try.

[Guest guest]

--- In , " johnsachuk

> <john.sach@n...> " < <john.sach@...:

> My question is. Has anybody else found a waterbed

> to help and have others had periods of remission

> and how long has it lasted.

>

>

I looked at waterbeds a few years ago, but they were so low to the

ground that I couldn't lie down on them easily because I can't bend

my knees much. Once on it, I couldn't get back up without some help -

not something I would want to do daily!

What I settled on was a " floatation bed. " It has about 5 inches of

water in it, but is light weight enough it can sit on a frame that

elevates the height of the bed to about 22 inches, which is perfect

for me and makes it very easy to get on and off. I love it because

it's by far the softest bed I've ever slept on, yet it provides

uniform support from head to toe. Our bodies are mostly water, so you

sink down into it until you've displaced an amount of water

equivalent to your body weight. It comes with a heater that I can

turn up (especially in the winter time) so that the water in the bed

is nice and warm, and I think it helps my PA a bit.

-- Ron

[Guest guest]

Has anybody else

> found a waterbed to help and have others had periods of remission

> and how long has it lasted.

>

>

I just bought an air mattress. I love it! It has helped loads with

my PA. My sister use to have a water bed, I've slept on it a few

times and it was ok-- it needed to be filled up with more water.

I'm 21 and I've almost always slept on a spring mattress. It puts

way to much stress on my hip joints and my shoulders. I also slept

on a Japanese style futon (about an inch thing padding between you

and the floor) and I was always in pain when I slept on it.

Another thing I found helpful is sleeping with a knee pillow. I

sleep on my side and it helps keep the strain off my hips and

knees.

I think right now I am going through remission of sorts. I have a

lot less pain and when I do have pain its not as painful as it use

to be. So far its lasted about a year. I exercise now and eat

healthier.

I was on Clartin D sinus for about 5 or 6 years to dry oumy sinus

cavities. What I didn't know at the time is that it was also drying

out my joints-- it made the pain a lot worse and I didn't even know

it until I stopped taking it.

JP

[Guest guest]

costello@... writes:

> I have been wearing a magnetic

> knee wrap for about a month when I go to bed.

Can you please tell me the brand name of this magnetic wrap and whre I may be

able to buy it. I'll try anything.

Janet

[Guest guest]

Hello & everyone else,

I also use a small pillow between my knee, it also keeps the upper portion of

the legs in a parallel position and therefore causes less strain on the hips. I

have the corrugated spongy mat on top of a good mattress and this has also

helped relieve the pain from joints while sleeping with the pressure points

being lessoned with the extra cushioning. I have also used various contoured

pillows which sometimes help and sometimes they bother me... however, a good

suggestion is my 'newly found' solution for sleeping comfort...even if your neck

and spine are not in pain, it is a good prevention. I think most of us may have

seen these 'blow up' neck pillows that are mainly for flights and traveling...

but now I have the newer pre-stuffed/filled neck cushion... I literally take it

everywhere with me and plan to make some washable covers for it. I place it

behind me while driving to support my lower back (you can use it either way...

as it is shaped more-or-less like a horseshoe it can be either upwards or

downwards... whatever works for you). I also take it on flights for my neck and

put the older blow-up one behind my lower back. Best of all, I have finally

used it while sleeping... either on top of my pillow or right below it... it

gives an extra bump to adjust to your neck's comfort... just move it around

until it feels right. I also use it when watching t.v.... sometimes. They are

fairly inexpensive, I honestly don't know how much... I stole it from my

husband, he said I can keep it...) Also, don't forget a lot can be done by

simply rolling up a towel... this will work almost as well and is convenient.

Well, this was my third posting for today... at least I have come out of my

'lurking' phase. Best wishes for all.

#2

"

[Guest guest]

It is homedics. I bought it at Walmart where the first aid supplies are

located. I first used one for my ankle. It saved me from pain when I

walked first thing in the morning. They go right in the washing machine and

I have yet to wear one out.

Ks Di

Re: [ ] Remission?

> costello@... writes:

> > I have been wearing a magnetic

> > knee wrap for about a month when I go to bed.

>

> Can you please tell me the brand name of this magnetic wrap and whre I may

be

> able to buy it. I'll try anything.

> Janet

>

>

[Guest guest]

.I read your post I do not know about the water

bed but I do know that I went off all my medications

one time and I myself felt like I was on top of the

world I convinced myself I did not need them anymore I

felt great for about 5 months then bam It was back

full force.I went back on my medication and it took a

while to get back on track.But it also taught me a few

things along the way.I have this terrible diease and

nobody can take it away.I come to except the fact also

that I am going to have some bad days and as long as

there is tomorrow I can handle it.But also I have a

very understanding husbund who is there for me and

together we can conquer anything.Do not get me wrong

this has not happened for me over night or days This

has taking years to come to realize this and I still

have my bad days.I can also say that this surport

group has been a god sent for me.I hope this not

discourging you in any way cause it was not intending

for that.But that is what happened to me and it may

not happen to you.But I know how great it is to feel

the way you do and wake up some morning and have it

all gone.Guess I have rambled on enough Take care and

good luck.

[Guest guest]

At 16.01 05/05/03, you wrote:

>Not sure if you all access About.com's forums. Thought this message was

>interesting.

>http://forums.about.com/ab-arthritis/messages?lgnF=y & msg=5936.1

Hi Mark

When my son was about a year old, he began to suffer from food-allergy

induced eczema. I noticed that it would clear up quickly and completely

whenever he had a cold, and then slowly return if I didn't watch his diet.

I always though that made sense with the allergy theory of antibodies

needing a " real job " to keep them out of trouble ;-)) I have also noticed

over the years that while I am more susceptible to infection (cold or

sinus) after a bout with hay fever, as soon as the infection sets in the

allergy symptoms (itching, violent sneezing) go away.

Whether the inflammation of arthritis is due to " autoimmune " response or to

an allergic reaction to mycoplasma and other invading organisms, it might

make sense that when the immune system has something else to deal with, it

lets up on the inflammation in the joints.

But I'd be interested in hearing other possible explanations.

Maureen

[Guest guest]

Hi Maureen! Geoff here.

You wrote:

> I always though(t) that made sense with the allergy theory of antibodies

> needing a " real job " to keep them out of trouble ;-)) I have also noticed

> over the years that while I am more susceptible to infection (cold or

> sinus) after a bout with hay fever, as soon as the infection sets in the

> allergy symptoms (itching, violent sneezing) go away.

People have logic problems when it comes to symptoms and disease. When the

immune system is active at the skin or with nasal drainage, it is working to

keep the antigenic agent as far away from vital systems as possible, i.e.,

away from heart, lungs, brain, etc. Unfortunately, people are routinely

" annoyed " by the symptoms and thus the symptoms become " the issue " as they

ignore the real threat and real danger from which the symptoms are

protecting them. Later, if an issue takes a deeper, more threatening, more

dangerous position in the body, the fight on the outside is abandoned in

favor of defending the more critical areas.

So, while eczema is distressing, it pales in comparison to meningitis; but

if the body must fight meningitis it will abandon the fight whose symptoms

we call eczema.

We have entire industries built upon relieving symptoms using drugs to

suppress the immune system response, e.g., lower fever, dry up that runny

nose, etc., all of which allow antigens to attack further into the body and

assail deeper more critical systems. Relief from the annoyances of life is

not always a good thing.

Geoff

soli Deo gloria

www.HealingYou.org - Your nonprofit source for remedies and aids in fighting

these diseases, information on weaning from drugs, and nutritional kits for

repairing adrenal damage; 100% volunteer staffed.

(Courtesy of Captain Cook's www.800-800-cruise.com)

" He deprives of intelligence the chiefs of the earth's people... "

" ...loosen the bonds of wickedness, undo the bands of the yoke, let the

oppressed go free, satisfy the desire of the afflicted, and your light will

rise in darkness and satisfy your desire in scorched places, and you will be

called the restorer of the streets in which to dwell. "

J1224

I58612

[Guest guest]

Hi Geoff,

I agree, certainly it's best at times to not fight our own bodies and let

nature take its course. Sometimes though the options are not too clear cut

and its difficult to ascertain what is prudent and what is not.

Inflammation for instance - sometimes a much needed response depending on

the circumstances, but too much can be debilitating and perhaps even life

threatening. Sometimes in those situations I want to respond to my body in

the same way my dogs sometime respond to me, " Look, cut the crap, and just

tell me what you want me to do. " It'd save time, money, and put a few lazy

MDs out to pasture. But I guess that it might also take all the fun and

challenge out of it. It also assumes that a " good " or prudent option exists

(sorry, forgot the glass is supposed to be half full). Sometimes, all the

options are unwelcome variations of the same agonizing tune (the

Bolton syndrome).

I'll stop before I get carried away,

Jeff

----Original Message Follows----

From: " Geoff " <geoff@...>

<rheumatic >

Subject: rheumatic Re: Remission?

Date: Wed, 7 May 2003 10:48:41 -0700

Hi Maureen! Geoff here.

You wrote:

> I always though(t) that made sense with the allergy theory of antibodies

> needing a " real job " to keep them out of trouble ;-)) I have also noticed

> over the years that while I am more susceptible to infection (cold or

> sinus) after a bout with hay fever, as soon as the infection sets in the

> allergy symptoms (itching, violent sneezing) go away.

People have logic problems when it comes to symptoms and disease. When the

immune system is active at the skin or with nasal drainage, it is working to

keep the antigenic agent as far away from vital systems as possible, i.e.,

away from heart, lungs, brain, etc. Unfortunately, people are routinely

" annoyed " by the symptoms and thus the symptoms become " the issue " as they

ignore the real threat and real danger from which the symptoms are

protecting them. Later, if an issue takes a deeper, more threatening, more

dangerous position in the body, the fight on the outside is abandoned in

favor of defending the more critical areas.

So, while eczema is distressing, it pales in comparison to meningitis; but

if the body must fight meningitis it will abandon the fight whose symptoms

we call eczema.

We have entire industries built upon relieving symptoms using drugs to

suppress the immune system response, e.g., lower fever, dry up that runny

nose, etc., all of which allow antigens to attack further into the body and

assail deeper more critical systems. Relief from the annoyances of life is

not always a good thing.

Geoff

soli Deo gloria

www.HealingYou.org - Your nonprofit source for remedies and aids in fighting

these diseases, information on weaning from drugs, and nutritional kits for

repairing adrenal damage; 100% volunteer staffed.

(Courtesy of Captain Cook's www.800-800-cruise.com)

" He deprives of intelligence the chiefs of the earth's people... "

" ...loosen the bonds of wickedness, undo the bands of the yoke, let the

oppressed go free, satisfy the desire of the afflicted, and your light will

rise in darkness and satisfy your desire in scorched places, and you will be

called the restorer of the streets in which to dwell. "

J1224

I58612

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Hi Jeff! Geoff here.

You wrote:

> I agree, certainly it's best at times to not fight our own bodies and let

> nature take its course. Sometimes though the options are not too clear

cut

> and its difficult to ascertain what is prudent and what is not.

> Inflammation for instance - sometimes a much needed response depending on

> the circumstances, but too much can be debilitating and perhaps even life

> threatening. Sometimes in those situations I want to respond to my body

in

> the same way my dogs sometime respond to me, " Look, cut the crap, and just

> tell me what you want me to do. " It'd save time, money, and put a few

lazy

> MDs out to pasture. But I guess that it might also take all the fun and

> challenge out of it. It also assumes that a " good " or prudent option

exists

> (sorry, forgot the glass is supposed to be half full). Sometimes, all the

> options are unwelcome variations of the same agonizing tune (the

> Bolton syndrome).

Agreed all the way around. I always hate it when my choices come down to the

least worst.

Geoff

soli Deo gloria

www.HealingYou.org - Your nonprofit source for remedies and aids in fighting

these diseases, information on weaning from drugs, and nutritional kits for

repairing adrenal damage; 100% volunteer staffed.

(Courtesy of Captain Cook's www.800-800-cruise.com)

" He deprives of intelligence the chiefs of the earth's people... "

" ...loosen the bonds of wickedness, undo the bands of the yoke, let the

oppressed go free, satisfy the desire of the afflicted, and your light will

rise in darkness and satisfy your desire in scorched places, and you will be

called the restorer of the streets in which to dwell. "

J1224

I58612

[Guest guest]

When I got by first flare 20 years ago I could barely walk for a

month and had to wear a neck brace. PA was diagnosed early and I went

on NSAIDs which did a good job for me after the first flare had

passed.

I therefore continued on for 20 years on Voltaren only, with -

seamingly like you - very manageable pain (as long as I did not skip

even one dose). My PA recently went " active " again but I attribute

that to unusual and prolonged stress in my life which seems to have

triggered it. I feel that I would otherwise be in this

continued " remission " . I think taking care of yourself and adopting a

good lifestyle (PA wise) which includes exercise, lots of rest,

stress management etc probably increase chances.

So yes I think it's possible to be stable for a long time on minimal

medications, but I beleive the PA will always be at least " dormant "

and can be triggered back into a more active stage for whatever

reason.

Frederic

> I am new to this group, and I have been reading alot of the posts.

> I'll tell you my story, and then I have a question. I was

diagnosed

> with PA about 8 years ago. I had it for several years prior to the

> diagnosis, but it took about three or four years for a diagnosis

> (that happened accidentally when I went to a dermatologist.)

>

> The P is limited to a couple of fingernails, and that's it. I feel

> very luck that the P is limited to that area. The arthritis has

> moved around my body (started on the left side of my neck - very

> dangerous when it came to driving), and two toes on my left foot

and

> my right elbow. I was on several meds (plaquenil, sulfasalazine,

> prednisone, every NSAID known to man (which, NEVER worked for me.)

> I then started metho (pill form), and I was virtually pain free.

> Because I wanted to start a family, I had to go off the metho. (No

> luck yet.) I've been off metho for about 2 1/2 years and use 800mg

> of ibuprofen two or three times a day and supplement that with pain

> killers when needed.

>

> Here is my question. Since going off the metho, the arthritis

flare-

> ups only occur every once in a great while. I'm not complaining, I

> just wonder if perhaps this is just a temporary thing. When I

first

> got this disease, it was brutal. I literally could not walk for

> days. Any pressure on my left side would cause pain so horrible,

> that I would actually pass out. My husband called the paramedics

> one time because of that.

>

> My rhuem says this will never go away, but I feel like it almost

> has. Has anyone gone through a prolonged remission? Will it come

> back with a vengence?

>

>

>

> [Ed. Note: It's been my experience that the first PA attack on

a " new " joint is always the worst. Subsequent flare-ups of the same

joint are less painful than the initial one. Ron]

[Guest guest]

I was on Enbrel for almost 2 years. Last summer I had to reduce my dosage

because of the shortage. I continued to reduce the dose until I completely

stopped it in December. I have been in remission for 6 months. No regular

meds at all. R.E

[Guest guest]

When I first started getting PA it attacked my fingers one after the other very

badly. No matter what I took it didn't stop until my fingers were deformed at

the joints. I have not had anymore joints attacked as severly since then. I

have had pain in my big toe that was so bad I wanted to go to the hospital. It

stopped mysteriously shortly after that. I have also experinced new pain in my

neck/upper back area recently, but nothing has been as bad as the first round of

attacks. I just hope that it will not move to other joints in my body and do

the same damage as it did to my fingers. I am 25, so I have many years to go

with this and I just don't think I have seen the last of PA.

[Guest guest]

Ronnie,

How sever would you say your PA was at the time you started Enbrel?

Thanks!

In a message dated 5/19/2003 10:29:17 PM Eastern Standard Time,

ronevans@... writes:

> I was on Enbrel for almost 2 years. Last summer I had to reduce my dosage

> because of the shortage. I continued to reduce the dose until I completely

> stopped it in December. I have been in remission for 6

> months. No regular

> meds at all. R.E

[Guest guest]

Hi . I used to post quite a lot but haven't much lately. My PA was

very severe. I was a wreck. I was on State disability. My RD said I had

the most aggressive case in my hands he had ever seen. I had 9 joints in my

hands affected and was well on my way to losing the use of my hands within

the year. I had tried Sulf, MTX, along with Celebrex, Viox and a lot of

other stuff and just got worse. I even tried Minocine for quite a while.

I had an acute flare a couple of years ago while on Minocine and my RD put

me on Enbrel. I don't think it was even approved for PA at that time. I

had incredible improvement with the first injection. Within a month I was

almost normal except for joint damage I incurred while messing around with

Minocine before going on Enbrel.

I still have some problems. I have a frozen right index finger and one

joint of my middle finger of my left hand gets stiff. Recently I have

developed some psoriatic nails if I use my hands to much. The biggest

problem I have is I can't leave my guitars alone. Before I couldn't even

pick one up. Now I can play but I know I'll pay for it if I do and I always

do. Anyway, for me Enbrel was pretty much a miracle and being able to stop

it was also quite a feat Oh, and it did wack me out a bit. Enbrel has a

stimulating effect for some people. Cheers R.E.

[Guest guest]

What do you mean it " wacked you out a bit " ? How long did you have the PA before

you started the Enbrel?

Thanks for the response.

In a message dated 5/20/2003 10:53:44 PM Eastern Standard Time,

ronevans@... writes:

> Anyway, for me Enbrel was pretty much a miracle and being able to stop

> it was also quite a feat Oh, and it did wack me out a bit.

> Enbrel has a

> stimulating effect for some people. Cheers R.E.

[Guest guest]

" Wacked me out " was a phrase I used in previous post.

It means that for me being on Enbrel felt like I drank

too much coffee all of the time. I was nervous and

edgy. Most people experience a mild euphoria or a

general improvement in mood and stamina but since I'm

a wiry person anyway it put me just a bit over the

edge. I took Klonopin daily to take that edge off. I

also had some odd neurological symptoms after a while

but was never sure if it had anything to do with the

Enbrel. Numbness and tingling on the left side of my

face and arm.

I was diagnosed for about two and a half years before

I started Enbrel but like everyone else had symptoms

for longer. I have had a small patch of P behind my

left ear for over twenty years. I attribute most of

my success with this disease with starting Enbrel

early in the disease process and just maybe turning

the worm. I would recommend anyone with early and

aggressive PA to go on Enbrel first not last and

possibly turn the disease around in a few months.

RGDS R.E.

-

[Guest guest]

I hate to be an alarmist but maybe you should read these;

<A

HREF= " http://www.enbrel-etanercept.com/pages/enbrel_side_effects.html " >Enbrel

Side Effects: Linked to Infections</a>

<A HREF= " http://aolsvc.health.webmd.aol.com/content/article/57/66106 " >WebMD

with AOL Health - Multiple Sclerosis (MS) Symptoms -- WebMD</a> Orin

[Guest guest]

In a message dated 5/21/2003 7:51:17 PM Eastern Daylight Time,

defective91950@... writes:

> Most people experience a mild euphoria or a

> general improvement in mood and stamina

I don't feel any different from the enbrel. Does anyone else get this

euphoria? It sounds like it would be a great feeling to get.

Janet

[Guest guest]

> My rhuem says this will never go away, but I feel like it almost

> has. Has anyone gone through a prolonged remission? Will it come

> back with a vengence?

Many moons ago I was taking Clinoril for my arthritis. I had to stop

taking it when I got pregnant, but I felt fine during that pregnancy.

And for 2 years after that I didn't need any medication at all. The

arthritis did eventually return. I was hoping that remission would

happen again during my second pregnancy, but no such luck.