Hello

April 8, 2006

Hi Dawn,

I don't know what the first line of treatment is, may change depending on the

Doc, but I was started on Methotrexate.

See ya,

Jeanette French

[Editor's Note: The most common first line treatment (after the NSAIDS which

tend to be prescribed by GPs), is Methotrexate. MTX has been around the longest

and has its benefits and side effects are extremely well known. It is also

available as a generic drug, so it is inexpensive which means many insurance

companies require people to go on MTX first. It is generally only after MTX has

proven ineffective, that an insurer will cover the " big guns " - Enbrel, Humira

and Remicade. Kathy F.]

[ ] Hello

Hello,

I'd like to introduce myself. I'm newly diagnosed with Psoriatic

Arthritis (happy 51st birthday to me) after years of being labled with

fibromyalgia, although lab tests indicated something else was afoot,

but no one ever had an answer. Now that I'm past being hurt and

confused by the misdiagnosis, I'm trying to find out what it is I'm

really in for with this disease. I already have the degenerative disc

disease in both the c-spine and lumbar spine. On/off again tendonitits

in knees and ankles, and generally painfull all over along with

moderate to severe fatigue, sleep apnea. I am going to be starting

Humira in the next few weeks and am wondering if this is the " usual "

first line of treatment.

Look forward to conversing and learning from the group.

Dawn

April 18, 2006

hey, carlene, sorry i haven't written. i am so way behind in emails. the

pain gets really intense around 4:30 when i leave work and i just want to come

home. and lay on my perfect couch. i have no pain when i am on my couch. i

am getting mentally ready for the surgery. scary. i will try to stay

better in touch.

i am very hopeful about the surgery. i have another appointment with

surgeon on may 2nd. i just want to go over with him what my expectations

should be

after surgery for the rest of my life.

way to go.

marsha

April 18, 2006

hey marsha,

no problem; i know how that is when ya just gotta be on your couch.

be sure to ask the doc if the surgery will alleviate the pain you are having and

by what %? ask him if it will cause other pains? ask him to explain exactly

what he is going to do. ask him a lot about the recovery period; when i had my

laminectomy about a month into it, i thought boy, i have really f----- it up

good now. my surgeon did not prepare me at all for the recovery which took a

good 3 months.

also, we rented a hospital bed, put it in the living room and then i could

easily get in and out of bed and change my position; something that is difficult

to do with a regular bed and your couch.

and i was working with an acupuncturist who would come out to the house and give

me a treatment which really helped with the pain. post-surgical pain is a real

problem for me because i cannot take any of the codeine products.

you might want to write down all of our questions--that way you will be well

prepared mentally.

take care....

Carlene in snowy MT

Re: Hello

hey, carlene, sorry i haven't written. i am so way behind in emails. the

pain gets really intense around 4:30 when i leave work and i just want to come

home. and lay on my perfect couch. i have no pain when i am on my couch. i

am getting mentally ready for the surgery. scary. i will try to stay

better in touch.

i am very hopeful about the surgery. i have another appointment with

surgeon on may 2nd. i just want to go over with him what my expectations

should be

after surgery for the rest of my life.

way to go.

marsha

April 18, 2006

In a message dated 08/04/2006 13:06:08 GMT Daylight Time,

dizzy2care@... writes:

I'd like to introduce myself. I'm newly diagnosed with Psoriatic

Arthritis (happy 51st birthday to me) after years of being labled with

fibromyalgia,

Hi Dawn,

I hope you also got a lot of presents which were better than a PA diagnosis.

lol Happy birthday!

Welcome to the group. Regarding Humira. I would think it is probably quite

unusual for it to be the first line of treatment but I think some of us would

say that it would be a good first line in treatment rather than them waiting for

further joint damage. Let us know how you are getting on with it whenever you

start it (If you have time)

Best of luck,

April 19, 2006

ask him to explain exactly what he is going to do. ask him a lot about the

recovery period; when i had my laminectomy about a month into it, i thought

boy, i have really f----- it up good now. my surgeon did not prepare me at

all for the recovery which took a good 3 months.you are scaring me here. you

know i am having a laminectomy. i have an appointment with him bec. i want to

know what my expectations should be because i have other pain issues. but i

remain very hopeful. and probably scared to death. may 22nd. here i come

April 19, 2006

Marsha,

sorry, not trying to scare you but any major surgery is scary. and you can

reduce that fear by having as much knowledge as you possibly can. when i had my

laminectomy 10 years ago, i did not have a good surgeon. not only did he not

clearly explain things but he took too much bone off and my spine has slumped as

a result and my low back is a mass of arthritic bone, scar tissue, vertebra on

top of vertebra. when they do the ablations they have a difficult time at the

L4, L5 level because, as the doctors say, " there are no landmarks left " and they

kinda have to fish around to find the nerve. that is not going to happen to

you. they are more conservative with the laminectomies now and i am sure Dr.

Kuflik is a much better surgeon than the one i had....

it will be ok. just stay present in the Now and do not get carried away with

what ifs.

and be frank with him, tell him you are scared and he will help you with that

fear.

ok???

Carlene

Love is the closest a human can get to knowing how an angel feels inside.

-Barbara Mark and Trudy Griswold,

" The Angelspeake Storybook "

Re: Hello

ask him to explain exactly what he is going to do. ask him a lot about the

recovery period; when i had my laminectomy about a month into it, i thought

boy, i have really f----- it up good now. my surgeon did not prepare me at

all for the recovery which took a good 3 months.you are scaring me here. you

know i am having a laminectomy. i have an appointment with him bec. i want to

know what my expectations should be because i have other pain issues. but i

remain very hopeful. and probably scared to death. may 22nd. here i come

April 27, 2006

Dear Edie,

Just wanted to say a hello and see how things are going with you. I have

been sick for two weeks with an awful lung infection my Granddaughter passed

along to me. Just turned the corner a couple of days ago with antibiotics.

I'm busy helping Bonnie plan our national get together, looks like in

Sept/Oct, hope you'll be able to attend! Spent today gardening, got the

pansies planted around my trees, they had wonderful colored ones at Walmart,

spent too much but I always do. We are so dry here, no measurable rain or

snow in two months, this summer is going to be awful. Colorado is already

having grass fires, way too early.

How's your back holding up? I'm doing fine. Ceili my daughter has her next

Dr. Kumar Appointment next month, lets keep our fingers crossed her curve

hasn't gotten any bigger, and she'll be done with the brace. I could use

some good news! Carla Kay from the group is having surgery in June with Dr.

Kumar, I and Dr. Kumar's assistant Lee are going to watch her daughter while

she's at the hospital and rehab. Lee volunteered, and I'm going to help her

out, Carla is a single Mom with no family support, and it's hard having

surgery so far away from her home in West Virginia. Had fun meeting her and

her daughter, she's 6, when they came out for her consultation. Kumar is

doing some new proceedure with the anterior part of her surgery where they

go in with only two small incisions. Looks like he can really help her.

Off to cook dinner, hope all is well with you, how's the new apartment?

[ ] Happy Everything to Everyone

> Hi to all my friends on this board who know me (Cam, K, Kam

> SuzieQ, Anne, anyone I may have inadvertantly left out, etc), and for

> those friends on this board I have yet to meet,

>

> Haven't had the opportunity to post much in ages, so sorry. I just

> wanted to let you all know that I am thinking of you, and sending you

> the best of wishes for a healthy, happy, prosperous, and hilarious new

> year!

>

> Keep laughing, even when it hurts. I promise to do the same, and will

> attempt to post soon.

>

> Missing you all...If anyone is New York City bound at any point in the

> future, please email me at my adress and let me know. I missed

> Anne once, I've no intention of letting that happen again!

>

> Hugs to you all,

>

> Edie

>

> scoliosis veterans * flatback sufferers * revision candidates

>

May 18, 2006

I had a discogram about a month ago. It was very painful and I hurt for about

three days afterwards. But it is a test to see how your nerves are. Keep me

posted. Hopefully you will have a good anesthesiologist (sp?) and he will keep

you comfortable. Good luck.

<poundpuppy5@...> wrote: im headed for a discogram and an

electrified burning elements in my

disk ? any comments?

May 18, 2006

I thought the discogram was a test to see exactly which discs are damaged? They

shoot the dye in to try and recreate the pain, and then watch the dye on xray to

check for leakage from the discs.

Anesthesiologist? I didn't get one with my discogram. I was sedated to lessen

the anxiety, but because they have to recreate the pain, you cannot be totally

out as you have to be able to interact with the doctor doing the test.

I wish I could have been knocked out...I don't ever want to go thru that kind

of pain again...not matter how good of a test it is.

Sherry Terry <maddy643@...> wrote:

I had a discogram about a month ago. It was very painful and I hurt for about

three days afterwards. But it is a test to see how your nerves are. Keep me

posted. Hopefully you will have a good anesthesiologist (sp?) and he will keep

you comfortable.

Vivian Harkness

http://www.geocities.com/southeastsearchandrescue/index.html

---------------------------------

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1 & cent;/min.

June 16, 2006

Go see a doctor that specializes in spinal disorders. Only they can help you

with the expertise that you deserve and need. Don't forget to take any xrays and

reports that you have. Go back to your doctor(s) and request a copy of your

medical file.

Everyone's back is different, as well as the pain that they may be

experiencing. Just because a doctor says you should be better, doesn't mean it

is so.

Get second, third, or however many opinions you need...to get the answers you

want.

Marjorie <butter3031@...> wrote:

I am 34 female and after two yrs of many too many doctors telling me

there is nothing wrong with me but my head. I finally found out I

have somethings wrong.

Degenerative Disc Disease, Spinal Stenosis, Facet arthritis,

Compression fractures(2 vert.)all lower back. L3-S1.

And well no one will tell me what happens now that my injections are

not lasting more than 3wks(the good one) and what happens if I just

say forget it. The pills dont work and the Doctor say I should be

better than I am.(as if i dont know that one).

I am worried. for some reason my back between shoulders is slumping

forward and its like theres a broom handle there.. and well heck.. I

am lost ..

anyone know what happens now?

thank you for reading this...

if there are typing mistakes I am sorry.

Butter(Marjorie)

Vivian Harkness

http://www.geocities.com/southeastsearchandrescue/index.html

---------------------------------

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

June 16, 2006

marjorie, have any of the doctors you have bben to spinal orthopedic or

neuro orthopedic surgeons? that would be a good place to start

marsha

June 17, 2006

Find a good PAIN MANAGEMENT doctor who is compassionate and supportive.

Unfortunately, nerve pain is not easily controlled by epidurals and some

type of pills. You don't elaborate on the meds you are taking but if you

find the right combination of medication, you should obtain some relief.

Drugs such as Neurontin, Cymbalta, and other anti-depressants and

anti-convulsant can be used in conjunction with some type of pain

medications to help relieve pain. Opiates are often used for chronic pain

control when other methods have failed. You do however have to contend with

the side effects of the medication that can be just as bad as what you are

obtaining relief.

I am sorry to hear how long it took to diagnose you. It happens quite often

and you really have to be making a lot of noise to be heard. The old saying

that the squeaky wheel gets the grease holds true.

I was diagnosed early on, within 2 months of onset of spasms. I have

numerous ruptured thoracic discs, the worse at T6-7. Surgery is to invasive

so I am dealing with pain management. I no longer drive because of high dose

of narcotics taken and other drugs. I wear (2) 200 microgram Duragesic

patches, take 60-80 mg percocet per day, take (2) 30 mg oxycontin per day,

2400 mg Neurontin, 30 mg Cymbalta and 400 mg Provigil. I have been on Long

term disability since 12/14/04 and am in the process of trying to get social

security disability. I am 40 years old and don't know what caused all this

to occur as no trauma was involved.

I wish you luck. Email be if you have questions.

Hello

I am 34 female and after two yrs of many too many doctors telling me

there is nothing wrong with me but my head. I finally found out I

have somethings wrong.

Degenerative Disc Disease, Spinal Stenosis, Facet arthritis,

Compression fractures(2 vert.)all lower back. L3-S1.

And well no one will tell me what happens now that my injections are

not lasting more than 3wks(the good one) and what happens if I just

say forget it. The pills dont work and the Doctor say I should be

better than I am.(as if i dont know that one).

I am worried. for some reason my back between shoulders is slumping

forward and its like theres a broom handle there.. and well heck.. I

am lost ..

anyone know what happens now?

thank you for reading this...

if there are typing mistakes I am sorry.

Butter(Marjorie)

August 3, 2006

No Depo for me....no need.....no dates. lol. But I'm wondering what type

of reaction you had to Remicaid. I am on Enbrel now but having trouble

with infections...UTI and eye. I've only been on it for 3 months and it

has given me my life back. Even the fatique is so much better. I have

discovered that I was suffering from fatique long before the joint

issues kicked in. But now that these infections are preventing me from

taking the Enbrel (for 3 weeks now) and I have to wait until they clear

before I take it again..I am curious about what my next step will entail

if I go on to another biologic. What type of reaction did you have? And

I'm glad the Enbrel is working for you...I want it to work for me too

and I'm not giving up...yet. -Betz

>

> Just wanted to say hello,,I used to belong to a group for PA a long

> time ago but I got away from it for some reason.

> My name is I am from Ohio and I have PA, was dx at 21 but had

> symptoms @ 18. I have been on MTX (which quit working), Remicade (was

> allergic to it) and now I'm on Enbrel (Thank God for it everyday), I

> also take a few more prescriptions.

> As for now the Enbrel is working like a charm I have been on it for 2

> months.

> I do have a question that I haven't been able to find an answer to

> tho,,I was wondering if any of the women out there take the Depo birth

> control shot and Enbrel? And if so have you had any problems between

> the Enbrel and the depo?

>

> Thanks,

>

August 4, 2006

I had reactions to the remicade twice..the first time I got short of

breath, felt like my head was like a balloon ready to explode, and

my chest got tight. The second time all of that happened but my

lips swelled up too. I wanted to try the Remicade again after the

first time because it did make me feel better. They did some tests

on me to see why I had the reaction, they found no reason why I had

the reaction (they had never heard of anyone having a reaction to it

unless they had a heart condition). But after the second reaction I

figured it just wasn;t for me.

I recently had to take 2 weeks off of the Enbrel because of head

cold. I have had 10 injections so far. My psoriasis is clearing up

wonderfully on my face, arms,and torso not so much on my legs yet

tho but I'm staying hopeful.

I hope that shed some light on it for you. Please let me know if I

can do anything else for you.

> >

> > Just wanted to say hello,,I used to belong to a group for PA a

long

> > time ago but I got away from it for some reason.

> > My name is I am from Ohio and I have PA, was dx at 21 but

had

> > symptoms @ 18. I have been on MTX (which quit working), Remicade

(was

> > allergic to it) and now I'm on Enbrel (Thank God for it

everyday), I

> > also take a few more prescriptions.

> > As for now the Enbrel is working like a charm I have been on it

for 2

> > months.

> > I do have a question that I haven't been able to find an answer

to

> > tho,,I was wondering if any of the women out there take the Depo

birth

> > control shot and Enbrel? And if so have you had any problems

between

> > the Enbrel and the depo?

> >

> > Thanks,

> >

>

August 5, 2006

...thanks. I'm glad you are ok now and I hope that we BOTH heal up

soon so we can get back to our beloved Enbrel! -Betz

> > >

> > > Just wanted to say hello,,I used to belong to a group for PA a

> long

> > > time ago but I got away from it for some reason.

> > > My name is I am from Ohio and I have PA, was dx at 21 but

> had

> > > symptoms @ 18. I have been on MTX (which quit working), Remicade

> (was

> > > allergic to it) and now I'm on Enbrel (Thank God for it

> everyday), I

> > > also take a few more prescriptions.

> > > As for now the Enbrel is working like a charm I have been on it

> for 2

> > > months.

> > > I do have a question that I haven't been able to find an answer

> to

> > > tho,,I was wondering if any of the women out there take the Depo

> birth

> > > control shot and Enbrel? And if so have you had any problems

> between

> > > the Enbrel and the depo?

> > >

> > > Thanks,

> > >

> >

August 6, 2006

> > > >

> > > > Just wanted to say hello,,I used to belong to a group for PA a

> > long

> > > > time ago but I got away from it for some reason.

> > > > My name is I am from Ohio and I have PA, was dx at 21

but

> > had

> > > > symptoms @ 18. I have been on MTX (which quit working),

Remicade

> > (was

> > > > allergic to it) and now I'm on Enbrel (Thank God for it

> > everyday), I

> > > > also take a few more prescriptions.

> > > > As for now the Enbrel is working like a charm I have been on

it

> > for 2

> > > > months.

> > > > I do have a question that I haven't been able to find an

answer

> > to

> > > > tho,,I was wondering if any of the women out there take the

Depo

> > birth

> > > > control shot and Enbrel? And if so have you had any problems

> > between

> > > > the Enbrel and the depo?

> > > >

> > > > Thanks,

> > > >

> > >

August 9, 2006

Betz...I have found the same with biologics and infections...and I have also

found that this is the one time that all kinds of alternative things are helping

me prevent the infections. Here's my list of stuff I do religiously, and I have

been infection free for the last year or so:-):

-at the SMALLEST hint of any thing related to my respiratory tract - sore

throat, stuffy nose, cough, or knowing I will have a visit with my 2 year old

nephew - I gargle with a 50/50 mix of salt water and alkalol, and I spray it up

my nose too, about 3 times per day. Alkalol is over the counter, costs about

$4, and is homeopathic...a mix of camphor oil, eucalyptus oil and some other

herby things - essentially this concoction is a mucus buster. If you can get

rid of the mucus, the bacteria have noplace to grow and you don't get sick.

This was my PCP's idea and it has worked great. Alkalol is hard to find but CVS

and Walgreen's will special order it for you.

-I eat yogurt with acidopholus (however you spell that) EVERY DAY - this is a

great way to keep digestive system bacteria free

-I drink something acidic (lemonade, cranberry juice) EVERY DAY to prevent UTI

I have found that all of this is pretty easy, pretty cheap, and has allowed me

to stay on the biologics which allowed me to return to work full time.

Chin up girl. By the way...I didn't want to respond when you first wrote it

because you really could have seriously injured your eye, but I was on the couch

in hysterics when I read it...it was just SO FUNNY the way you described...glad

things are on the upswing...

[ ] Re: Hello