Daily Blog

Hi everyone.
I know that prednisone is used for short term relief during flares.
Do all of you keep some on hand just in case or do you have to ask
your rheumy for it every time? How do you know that when your pain
decreases, its that the flare is gone instead of the Prednisone
working well.
Last week I called my rheumy in desperation. I couldn't take the
pain any more. We had added methotrexate to my Mobic and
sulfazalizine just two weeks before, hoping that it would help me.
Since methotrexate can take months to start working of course I felt
no different and I think I was getting worse. New joints kept
hurting, I couldn't sleep for the pain, I was exhausted and desperate
for relief.
He added low dose Prednisone and I feel like a new woman. I'm having
the least amount of pain that I have had since the joint pain started
about 5 months ago. I don't think I've had a flare other than in
association with the weather or certain foods that I know make it
worse. It has just been this constant increase in intensity of the
pain and increase of new joints. I told my rheumy that if I waited 3
months for the methotrexate to start working every joint in my body
would be affected as fast as new joints were being affected.
He was very hesitant to put me on the Prednisone because I was
loosing weight and he was concerned for my progress in that area. I
will admit that on the Prednisone my appetite has doubled and I'm
hungry all the time. Its extremely hard to control the impulse to
eat. Maybe its also because I feel so much better. Before I didn't
want to eat because the pain was so intense that I had nausea all the
time.
Have you guys also had these same quick results from Prednisone?
Have you had the same side effects? I see my rheumy next week and I
know that he is not going to want me to be on the Prednisone for very
long. I don't want to eat myself to death, but I can't take that
pain again. I'm hoping that he has started the procedures for
getting approval from my insurance to pay for Humira or Remicade.
Considering the quick progression of my disease I wonder how long it
will take. Were any of you in a similar situation? What did you do?
Thanks,
"Shelley Sheridan" <sksherid@...

Hi,
I have the same reaction. I do not use that drug. It came with the PA. It
getting worse as the PA is getting stronger. Of-course the day after, and the
day after, and all the days after are bad days. I'm tired and wand to sleep. I
have a brain fog after such nights.
My worst feeling is due to the ringing in the ears, because the house is very
quiet.
Bye the way does anyone has an explanation why do the ears ring as a side effect
of PA?
Good luck,
Arie

Ang,
I hope that everything goes well for you as you switch medications. My
dermatologist. is putting me on Humira and I'm nervous about that. I too have
had several meds over the last couple of years that I have found myself allergic
to.
Rachel
Dayton Area, Ohio

Hi I am experiencing some odd reactions with this drug. Has anyone any
experience of it?
I have some crazy dreams when I finally get to sleep about three in
the morning and wake up frequently in that time. I have bad headaches
with it and I feel very dizzy and dreamy and quite sick, with ringing
in my ears. I am only on one tablet a day and have to build up to two
in the morning and two at night I will be like a zombie sleepy and
spaced out all day.
Does any one have any recommendations how to counteract these side
effects. please.
jetzsun

Hi Sarah -
My husband suffers from occasional bouts of iritis. He was given drops
to use when he has a flare up. He only needs these for about a week at
a time - that's about how long the flare lasts.
Are you taking Pred every day to depress flares or just to prevent them?
Bonnie

I have been on Enbrel for 6 weeks, but after talking to my rheumy about
the tingling and numbness I've been getting off and on in my fingers
and toes, he wants me to switch. He says this is a rare side effect but
he doesn't want to take any chances. If they are both TNF blockers how
will this change my symptoms and what if any side effects should I
expect? I always worry with new meds that I will have an allergic
reaction. Sounds paranoid but over the last couple of years I've had
several drugs I've been allergic to.
Ang~
Bay Area,CA

Hi Pam,
I'm not sure if this is the same thing, But I have had and have read
that others have had a "Baker's Cyst" Usually this is behind the
knee, but I'm guessing it could occur on or around any joint.
FYI, Mine went away on it's own. Nothing to be worried about.
Stay Well,
David

For what it's worth, I know that TB is a concern for people with AIDS. In
the late 80s, early 90s, I delivered meals to people with AIDS in San
Francisco, volunteering with Project Open Hand. At one point, volunteers were
required to get a TB test. I remember telling the volunteer coordinator that it
was
comforting to know that Project Open Hand was concerned about volunteer
health to the point where we were required to get the TB test. I was told that
there was no concern about our health -- the Project was concerned that we
volunteers not pass TB to the clients with AIDS.
Shut me up!
BeingIrish

Hi all,
I have a lump/knot on my left thumb in the joint area my rhemy called it
a "cyst". That was two weeks ago. Tonight I found the same thing on the
same hand on the top of my wrist.
Have any of you had anything like this?
Thanks
Pam
Alabama

Hi Sarah,
I had two pregnancies and if I could would have ten more :) During the first
trimester the PA was a little bad, but the other 6 I was in total remission!!!!
And more: even after giving birth I was free of the PA for months!!! On the
other hand...my P was very mild before, now it's been bad since the
pregnancies...oh well...I take P over PA anytime!!!!!
Good luck and enjoy every second!
ps:I used to be scared of getting pregnant and the PA as well, even considered a
surrogate at that time because I was so afraid to be off the meds...if I only
knew it was going to be so easy...
ps2:Make sure you are off the Methotrexate in case you take it for at least six
months, and the Enbrel for 3.

Hi Monica,
Just a couple of thoughts...
1. Go after ex-hubby through legal system, There MUST be ways of
making his negligence accountable, but could take some time.
2. Look into joining the Rotary Club Or Local business association,
usually these groups have access to health insurance at better than
rack rates.
3.I'm sure it varies by state, but If your previous health insurance
was through, say "Blue Cross" and you re-up through Blue Cross, You
may be able to get past the pre-existing condition, as it existed
before when you were previously covered.
Good Luck.
Stay Well,
David

Almost 11 months ago I gave birth at 39 years old to a wonderful and
delightful little girl....10 years after my older daughter. The
pregnancy was wonderful!! I was off ALL of my meds (except Allegra) and
had no outbreaks and felt better then I did in years!! The delivery was
easy (I was induced and did have an epidural) and the baby was healthy
and happy!!
I did elect to not nurse so that I could resume my meds before a flair
but otherwise......I'd do it again if it wasn't for my age.....and my
husbands. I am tired at times but, I have a demanding job as a mental
health therapist working 50+ hours a week, show dogs as well as being
active within a variety of organizations and having Fib. as well.
Talk to your doctores fist....both Ob/Gyn and the Rheummy......we
didn't...this was very much the "miracle baby" for us but, both were
supportive and indicated that the hormones produced during pregnancy
tend to make the condition lessen.
Dawn B.
PA (have it and live there!)

Check Enbrel's website. You might be elgible for their program for low
income drug program.
Cathy

Hi guys, I have'nt been here for a while now because I
was fine and all with the help of Enbrel, but some
months ago my now ex husband didn't pay the health
insurance premium for months and left me and my kids
uncovered. I found out when it was already too late to
do anything about it (past 63 days) and I'm unable to
get group health insurance because I dont work (have
two babies) and I guess group would be the only way to
cover pre-existing condition.
I'm panicking because Im running out of Enbrel and
won't be able to afford the 1800/month self paid for
it.
Should I:
A-Open a small business with the sole purpose to get
group health insurance (employing family members in
the "payroll"). Would cost me a fortune to keep it
real and legal but is still less than 1800/month.
B-Move to France or any other country where the health
system is fair.
C-Go on a different drug, less effective and
riskier(non biologics)
D-Give up on everything and just conform with a sad
reality and deteriorating health.
I need your expertise, help, opinion, if anyone knows
how I'm feeling it's you guys.
Thank you in advance,
Monica in South FL

Hey group,
I was wondering if any of you suffer from Iritis in connection to
your PA. I've been having bouts on and off for a few years now and
was hoping to hear someone else's story.
My last bout has been going on for 6 months and the last time I was
at the doctor's he said that I can't stay on the Pred drops forever
because it will ruin my eyes and suggested Remicade--which I'm
oppossed to as I'm only taking Aleve for my arthritic pain at the
moment.
Then he said that the iritis treatment (remicade) could affect my
chances of having a baby. Now....I do have another health problem
which will affect this--but I NEVER thought that an EYE disease could
halt those chances.
So now I'm thinking about adopting....or having 'the talk' with my
husband and upping out plans by a few years. Although it does feel
odd to up our plans over an eye thing.
Help--advice--I feel like crap.
Sarah

I don't really have any side effects. The hair loss, if any, is minor. The
dose for treatment of PA typically isn't as large as cancer patients, so
hair loss is minimal -- if any.
Just be sure to take the folic acid as prescribed. That helps reduce any
side effects as well.
I also take my dose of MTX before bed. That ensures that any minor nausea
(which I'll have once in a great while) won't be an issue since I'll be
asleep. I take it on Saturday night before bed -- just in case I have any
issues the next day. But typically I don't have any problems.
Sometimes it does open you up to more issues with bronchitis or sinus
infections. Just be sure to have any colds or congestion treated
immediately so that they don't get worse. For example, I didn't treat my
last sinus infection fast enough and it got worse fairly quickly. A good
round or two of antibiotics did the trick and now I'm fine.
My best friend has cancer and so I really feel for you and your sister.
Hang in there! But don't worry. MTX for PA is NOTHING like chemo for
cancer.
Good luck!
Patty

Have any of the women out there had any difficulties with child birth
because of their PA? Any tips or things to think about as my husband
and I talk about getting preg. vs. adoption?
Thanks
Sarah

Carol, our MTX use is nowhere near the dose given for cancer
treatment. Most people don't experience any hair loss. Most of those
who do find it is minimal and temporary. Relax.
regards,
sherry z

Ronnie,
Do you live in the city? Do you travel to malls ? Do you travel on
planes? Does anyone in your family travel?
Mary

Hi Everyone,
Thank you for your support its so good to get feedback I felt like I was
going crazy with the whole situation.
I tried and asked about antibiotics but my Rheumatologist says our NHS
system doesn't use antibiotics to treat Psoriatic or rheumatoid
arthritis. I live in South Wales.
I was however, impressed with his bedside manner so to speak. He was
very understanding when I told him how I felt about all of the side
effects of these drugs. He even let me talk about how i felt about my
illness and how it is affecting me. He really seemed to care and gave
me as much reassurance as he could about them finding a medication that
would suit me and help slow down the disease.
I am now trying Sulfalazine, hopefully it will have less side effects
than the MTX and the Arava.
I do feel better knowing I have a friends here to talk to.
Thanx
"jetzsun" <jetzsun@...

Hello Group,
I am usually a lurker just reading the posts. I think I am a little better
than a lot of you in this group. I have just been given MTX by my doc. I
have been reading about he drug and side effects. Frankly I'm a little
scared to take it.I gather it is a relatively small dose 7.5 mg a week.
I am a caregiver for my sister who has cancer. I have seen the hair loss
first hand! I've seen her fight for energy, have platelets and such.
What I would like to hear are your experiences with the medication.
Carol McKenzie

I started with Celebrex, added MTX, added Humira, and then added Arava.
This combination gave me some relief but not enough to function effectively.
Substituting Remicade for the Humira finally did the trick. My pain is reduced
dramatically and my stiffness is lessened enough for me to function pretty
well.
epsny1@...

First I want to thank Bill Middleton for his nice e-mail.
But this is what happened. I was on Enbrel for 2 years and I did get a TB test
when I started it and It was negative. But while on Enbrel I contracted TB. My
immune levels dropped too low. I had a TB test when going on Remicade and it was
a false negative. Then when they moved me to Remicade it dropped my immune
system even more and brought the TB to a head and full blown. I was under
quarantine for 5 months and then slowly getting better the rest of the year. It
took one year to get over it completely. They told me my right lung it
permanently damaged. And if I should get TB again it will be 100% worse. So I
have to be careful. I would shoot the Enbrel in my stomach or inner thigh. And
Remicade is administered through an IV. I had to sit for an hour or 45 minutes
while the Remicade went through my system. And after the TB the doctor had the
nerve to tell me I could go back on Enbrel or Remicade if I wanted too. I was
blown away. I said not on your life. And get TB again.
Ronnie

It's a matter of education - I highly recommend sending family and friends to
www.butyoudontlooksick.com and reading up on 'Spoon Theory' It explains the
process we go through in a way that non-afflicted people can understand.
And it is educating ourselves too. This quote hangs at my desk, and in my
bedroom (so I don't feel guilty if I need a nap!)
Accept that you are a living organism with limitations and do not measure
yourself by what you used to do, or what others do, or what is expected of
you. Accept that you have a life-altering disease and do the best you can.
Find the joy in life. It is still there!!
CMPete
Quilts With Poodle
'.....now times are rough and I've got too much STUFF!!'
J.D. Buffett

Ang: only your doctor can figure out what's going on with your meds and make
proper suggestions because we all react so differently. However, it's my
understanding that the best thing you can do for any kind of arthritis (osteo,
PsA, RA, whatever) is to keep moving so those muscles and joints don't stiffen
up. You don't want to over-do and pretend you're training for a marathon; but
any kind of well rounded gym workout should be good for you. Just make sure you
start-up easy and stretch after. That is so important!!!!!
Joanna Hoelscher

Yes. This can be a form of psoriasis called palmar-plantar pustulosis,
or pustular psoriasis. It is the main form of P that I have. I had
blisters on the tips of my fingers and the soles of my feet to the
point where I could not work at all - no use of my hands and no walking
or standing. Humira has cleared my hands completely for almost a year
now, and has improved my feet but not nearly enough. I still have days
where I can barely walk because of the sores on my feet.
You should see a dermatologist to confirm that this is indeed
psoriasis. If it is, you should let your rheumatologist know about it,
too. This kind of P is even more resistant to treatment than other
types, and it tends to point toward a possibly more severe case of PA
so your rheumy may want to treat you more aggressively than normal.
Sorry to hear your troubles, but don't panic - it is controllable if
you are willing to use medications and patiently work with your rheumy
and derm.
regards,
sherry z

If I understand those articles (and others I've read) correctly, these
drugs don't CAUSE tuberculosis per se, but rather they allow latent TB
to come out of hiding and make you sick. That's why we must be tested
for latent TB before beginning any of these drugs. I wonder whether
our new member was tested before beginning them? Or if perhaps there
was a misreading or erroneous reading of his TB test results the first
time, causing them to overlook latent TB? Of course, it's also
possible he was newly exposed to TB after beginning the drugs and more
easily caught it upon exposure due to the TNF-alpha blockers.
thanks for the links,
sherry z

Angela, although exercise is important it can be couterproductive if
you don't have your PA under good control yet and you are doing
impact-type exercise like walking/running/jogging. It would be much
better if you could do aquatic exercise. If your joints think they
are being hurt, your immune system kicks in and that's what does the
damage. Either switch to aquatic or back off somewhat on your
current program to the level where it's not causing flares. I find
that I can walk more without causing a problem if I break it up into
smaller pieces - for example, walk 15 minutes, sit 15 minutes, walk
15 minutes, sit 15 minutes. This doesn't really give much aerobic
benefit, but it keeps the joints flexible and is good weight-bearing
exercise without as much stress on the joints. You can get aerobic
workout by swimming or stationary bike (if your knees are not a big
problem) or something else that doesn't stress your problem joints.
Aquatic is by far the best of us.
regards,
sherry z

I did not mean to scary anyone. If I have I'm sorry. I am one in a
million that got TB from TNF drugs. I am one of the rare ones.
Ronnie

Hello,
I am wondering if anyone else has had the same experience...
I am on 7.5 mg of MTX (IM injection) and Enbrel 50mg. I started the
Enbrel 6 weeks ago. The first 2-3 weeks I noticed I would have a good 2-
3 days of feeling pretty darn good. That would diminish as I got
closer to my next weekly dose but was definitely an improvement I was
enjoying!
Now over the last 3 weeks it seems I'm going backwards and my pain and
stiffness is getting worse again. Is this a sign that Enbrel isn't
going to work for me? MTX alone wasn't working either..anyone have this
happen and what did you do? My husband thinks it may be that I'm doing
more than I should (Walking and/or going to the gym 5 days a week)and
that it's basically counteracting any benefit I was feeling before.
Shouldn't I be trying to exercise as much as I can when I feel up to it?
I'd love to hear your thoughts and ideas.
Ang~

Ronnie you poor guy I feel for ya!!! hang in there. We all are suffering and
its not fun!!!
Bill Middleton <middleton.bill@...

Hi,
Just wanted to know if anyone has recurring blisters on the soles of their
feet particularly under the toes? What if any recommendations?
Thanks,
Doris

Hi-I'm new to the group. Have had PsA for about 10 years. Usually
under reasonable control, relatively speaking. I live near Toronto
and that is where I still go for care.
The Toronto hospital I go to has a dedicated PsA clinic, so I get
terrific care, but I thought I would pick the brains of the group
before I call them .
My question-- I'm on fairly low dose of MTX, and for the last two
years have been doing injections, with no issues.
However, after the last two needles I have become viciously ill.
I think I was warming up to it without realizing , because after ages
of no worries with the needles I found I was getting queasy and
headachy just thinking about them ( happening as I write, how
pathetic is that!?)
Now I need a solution -- has anyone tried popping a Gravol before
their injections? Or after?
Any other sort of mainstream solution?
I HATE taking any drugs, and my doctors all respect that , so I'm
hoping to not add another prescription on.
Also, does anyone find if they do the injection just before bed that
they can sleep through the nausea and fell somewhat human in the morning?
I'm grateful for any suggestions.
Ellen

As a list member recently mentioned there is an established
relationship between TNF inhibitors (Enbrel, Humira, and Remicade) and
tuberculosis (TB). The risk is considered to be very low. For more
information see:
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5330a4.htm
http://www.enbrel.com/psoriatic-arthritis/clinical-experience.jsp
http://www.medicalnewstoday.com/articles/14756.php
RA Harris, North Jersey

Hi Leslie,
My mother is a person who has never been sick a day in her life and
does not understand "sickness". She tries to be understanding and
supportive. It is just difficult for her, since she has never been
sick.
I have had to learn that my illness is mine. I know how much I suffer
everyday 24/7 and I have learned to say "NO" I can't do this or that
when asked by others. I do what I can, when I can and I refuse to
feel guilty.
I have went from an extremely active lifestyle: riding horses,
decorating cakes, working full time, going to college and raising
children along with a husband. Now, I am fighting to get out of bed
and walking around the house. I look healthy. but I am not. That is
the hardest part. I miss my life and I want it back. I had to retire
from my job of 25 years, January was a year ago, and my horse just
stands out in the pasture now. All of my retirement dreams seen to be
slipping away.
I am 50 and feel like I am 90. I have came to understand that there
is NO way that healthy people can understand what I am going through.
It is mine to bare alone. Just like I can't bare their misfortunes.
There are people, like my wonderful husband, who can be supportive
and caring. I hope you can find someone to talk to who will listen to
you.
My doctor did not listen to me for years. He just kept saying I had
Fibro and Sjogrens. I finally had to go to another physician.
I know what you are going through is hard. I have been there. It is
not that people don't care, they just don't understand. That is why
you have to be understanding of them also. You are sick and they
don't understand. It is best for you to accept this fact and then put
all of your energy and frustrations into getting better and fighting
this disease. I have decided to FIGHT and forgive those who don't
understand. After a year at home and just getting worse, I am now
trying to exercise 3 times a week in water therapy. The first day, 30
minutes after the exercise, I could not move, my body just locked up.
I made it to my Chiropractors office and he said I had lumps on my
back and spine. The next day, I was as normal as I get...
I start back on the Arava this Tuesday. Just a quarter of the pill. I
became very sick and threw up all day long on just half of the pill.
I could not take mtx either. I am hoping to be put on Enbrel or one
of the other drugs soon. I just have to find the correct "cocktail"
for me and fight to keep my joints and muscles working.
I am happy that my mother and the rest don't understand my sickness,
that means they are not having to suffer like I am...
Pam
Alabama

Hi all I am new here.
This is my story.
I am 42 and overweight. I have psoriatic arthritis/spondylitis in
all my joints from head to toe. They swell and are painful
especially when the weather changes. But everyday too. I was put on
Remicade and Enbrel and I got TB from them so I cannot go on those
kinds of medicines again. The TB has messed with my immune system to
where I have allergies and I have to be care of getting pneumonia and
pleurisy and the like. Part of my right lung is permanently damaged
from the TB. They still won't approve disability for me. I am
dyslexic too. In sight and hearing. But back to the psoriatic
arthritis/spondylitis. So I take Nabumetone for pain as well as
Tylenol. I cannot work. I cannot do heavy lifting and I pop my
joints all the time when I try. Luckily my wife works. But there you
have it
Ronnie Moreland

My weight is well distributed and an 18 feels just right too! Sis
got me a top/pants in 18 and I still wear them but a 16 is just
right. I am getting ready to try those mineral/herbal wraps at our
local gym. Don had gotten me information and promised I could try
it. I met with the lady last night and said she has several clients
that are GBS patients and found them to be the idea candidates for
this wrap. I will let everyone know how it goes cause its sure does
sound great!
Hugs, Linda

Thanks for giving us this info. I will bring this up with my surgeon and see
what he can tell me.
Denise
Dora McCary <dobie161@...
Since we are talking about how our bodies absorb meds I thought I would throw
this out for some thought. I asked my nutritionist if our bodies absorb enough
of our birth control pills to make them effective. She told me that they don't
know that answer. There have been no studies on that. But I saw on my local
news the other night that they have determined that women who are overweight do
not get as much protection as those who are 200 pounds or under. They said that
overweight women are maybe 15% (not sure about the stat but somewhere close)
more get pregnant while on the pill as opposed to thin women. And on a personal
note, I can tell that my body is not absorbing them as it should since my cycle
is not happening when it should.
So be careful. If you are using that as your only means of birth control you
might want to add some other measure to it.
Dora
Lap RNY 9-20-04
Vanderbilt Hospital
Nashville, TN
447-371-165
-Nobody can make you feel inferior without your permission.-
Eleanor Roosevelt

Well after reading all the posts, next time I'm going to be brave and do the
stomach. I think I'll also let it warm a bit longer and see if that helps.
I've never been able to convince hubby to help so I could do the upper arms.
He's so afraid that he will hurt me. I try to tell him that he can't hurt
me any more than I already do but he's not convinced. Here's hoping I will
be able to stay on Humira for a while. I've had bad infections with both
Enbrel and Remicade and am hoping not to have a repeat with Humira.
Cathy

Deanna,
I totally understand what you are saying. I have to walk with a
cane due to my PA and since I'm overweight people who don't know me
give me the same "if you weren't so fat you wouldn't need that cane"
look! Little do they know I could walk perfectly fine at my weight
BEFORE the PA. It is very annoying and hurtful but you just have to
remind yourself that they have NO CLUE what we go through on a
regular basis. I know I am doing the best that I can with what I
have. I could have gave up and laid in bed all day but I attempt to
do what I can. Take care and good luck!
Megan

Since we are talking about how our bodies absorb meds I thought I would throw
this out for some thought. I asked my nutritionist if our bodies absorb enough
of our birth control pills to make them effective. She told me that they don't
know that answer. There have been no studies on that. But I saw on my local
news the other night that they have determined that women who are overweight do
not get as much protection as those who are 200 pounds or under. They said that
overweight women are maybe 15% (not sure about the stat but somewhere close)
more get pregnant while on the pill as opposed to thin women. And on a personal
note, I can tell that my body is not absorbing them as it should since my cycle
is not happening when it should.
So be careful. If you are using that as your only means of birth control you
might want to add some other measure to it.
Dora
Lap RNY 9-20-04
Vanderbilt Hospital
Nashville, TN
447-371-165
-Nobody can make you feel inferior without your permission.-
Eleanor Roosevelt

Hi,
I just went to my Rheumy yesterday and she basically said the same thing. I was
on 10mg of MTX and was taking 500mg Naprosyn 2 times a day and she said she'll
increase the MTX to 15mg and I should wean myself off the Naprosyn (I tried
Mobic and it didn't work for me) so I don't screw up my liver. She said I
should get the anti inflammatory relief with the MTX and should only take the
Naprosyn as needed and should alternate with Tylenol, maximum of 4 tablets per
day. So you and I are in the same boat. Last night was the first night without
the Naprosyn and I was very uncomfortable. Today is the first day since she
upped the dose of MTX and I hope I feel ok. So far, so good. I just don't want
my hair to fall out!! I take Omega-3 fish oil capsules and 1 gram of folic acid
and I was ok til this point. I am wondering too, if others get by without
taking anti-inflammatories, and I just have suck it up and deal with it.
Lynn

I agree--the stomach area is the most pain-free, but yes a bit more
difficult to hold it down steady enough to get it to go.
Perhaps just a bit of the sting may be due to the alcohol that you swab
around the injection area. I've found that after I use the alcohol sab
and sort of fan the injection site (to make the alcohol dries) before I
do the injection, it has cut down a bit on the sting.
I've also found that the upper arms is a little less painful than the
thigh areas as well, but difficult to do by yourself. Maybe your hubby
can help you do it there and see how it is compared to your thigh area.
Good luck!
"vdevera" <vdevera@...

This site will give you an estimate of weight loss.
http://www.angelfire.com/journal2/ossg_frederick/wtlosscalc.html
Pat in RI

I had a 39 BMI and diabetes but I only had the diabetes for 2 years,
I have Federal BCBS
Pat in RI

Yes, I am a big woman. Have been for my fifty years on this planet. I
am not a militant "fat" person who advocates eating until you bust and
then blaming everyone else. Having said that, I have noticed
something since I have had PA and began using the scooter to get
around stores. Lately I have had several people look at me with
disdain and disgust as if to say "get off you lazy a** and get some
exercise." Like most of you all I don't look sick so they think I'm
just lazy. I have worked my whole life (30 years) and did my share of
hard physical labor a good part of that time. I worked retail for 20
years. I stood on my feet and ran my butt off, put up stock, unloaded
trucks, well, you get the picture. It's no wonder I'm in the shape
I'm in. I also have severe OA. And I am losing weight, slowly and
correctly for the first time. But they don't see that. Some of us
are heavy for the very first time because we can't be as active as we
once were. Myself, I had put on some extra weight since my joints are
so damaged. For the most part, people are wonderful but it only takes
one person acting like that to really put a damper on an outing.
While we are educating others about our disease could we please
remember that prejudice against the overweight is the last acceptable
prejudice.
I don't want pity or apologies, just to be treated like a human being.
I have always gone out of my way to treat people with disabilities
with the utmost respect and compassion.
"deannaacarrigan" <deannaacarrigan@...

Joy,
If you are ever this way again, I work right down town and only live about 2
miles off I-24/I-65. Our house is actually 18 blocks from the stadium. Stop by
and say hello. I do love it here and plan on being here for a very long time.
Dora
Lap RNY 9-20-04
Vanderbilt Hospital
Nashville, TN
447-371-165
-Nobody can make you feel inferior without your permission.-
Eleanor Roosevelt

DENISE!! how are you? I was really getting worried about you! and
your sitting there drinking tea! Please tell us how you are.
Pat in RI

Jackie - I found that letting the Humira sit for 40 minutes rather
than 30 makes a difference in the amount of burn or sting. Also,
I've quit using my thighs altogether - it's much more comfortable in
the stomach! The thighs burn much worse more often.
"S. Zorzi" <szorzi_1999@...

Linda I am about 8 pounds lighter than you and can just get into a
18, put then I carry all my weight in my stomach! I guess I will
have to do more sit-ups.
Pat in RI

I have never seen any statistics on averages. The only thing I have seen is
that most people will lose upt to 70% of their excess weight. But many many
make it to their goal. Sorry to not be able to give you numbers, but everyone
is so varied that I don't think there is a way to do that.
Dora
Lap RNY 9-20-04
Vanderbilt Hospital
Nashville, TN
447-375-165
-Nobody can make you feel inferior without your permission.-
Eleanor Roosevelt

I am on Humira and use the pre-filled syringes. I leave them out to warm
for about 30 min. And do them in my thigh. Yes, they sting a bit but not a
big deal. I usually use mid to upper thigh and I alternate thighs. I've
never done them in my stomach. Never did Enbrel there either. It always
kind of scared me although people have told me it is less painful. I think
I'll have work up my nerve and try it there next time. I'm always ready for
something with less pain.
Cathy

Linda
Ok thanx I was just wandering about that
Love Debbie B

Hi
My rheumy had me on 7.5 Mg MTX and said to stop my anti-inflammatory but
when I did I could hardly walk. Then he increased the MTX dose to 10 mg
with daily anti-inflammatory. He said I should try to go without the
anti-inflammatory after a while but each time I tried to stop it, the
pain was too bad after nearly a week. Now I'm on 15 mg MTX and will try
stopping the anti-inflammatory. The rheumy said its best to be on MTX
rather than the anti-inflammatory.
My question is: does anyone have good control of pain and stiffness
with MTX alone? Or does everyone feel they still need an
anti-inflammatory.
Thanks
Max

Kristy,
Yes, I have been feeling like this all of the time. But, I am going back
Monday. i think we have to fight the mental part of this. Also... it might help
to
be around people and forget about it for a while.
beth

I had posed a question to a rep at BCBS just before the holidays - I
also posted the question here. This year I reached the 40 BMI and
rather than wait till it's 50 or 55, I want to start checking on the
process of this surgery - however, it appeared that BCBS had a
stipulation that you had to be 40 BMI or 35+ with comorbs - and that in
either case, the conditions had to be present for 4 of the last 5 years.
My answer came in today from the rep that the 40 has to be present for
four of the past five years - and/or 35+ w/ co-morbs present for the
same amount of time. Has anyone else used BCBS with a borderline 40 BMI
---- AND had the BMI less than this amount of time????

Based on this message I was able to locate a Road Back Foundation that
has a lot more information on their website about antibiotic therapy,
history, problems/issues w/mainstream med docs, and links. It focuses
on rheumatoid arthritis, but also recognizes its use throughout
rheumatics, so it may be a helpful resource for people wanting to
explore more.
Cheryl M.

Kristy,
I also had emotions running rampage and went to the doctor for some
help. Lexapro was prescribed and life is so much better now. Just
something our brains do to us since they are lacking certain
hormones they were used to getting prior to surgery.
Hugs, Linda in AL.

Hey Debbie,
I still make those items, even those on the back of the Splenda bag
but just eat small amounts...sorry I had to laugh at that...we can
only eat in small amounts. My surgeon said that our bodies need it
at times so we can feel complete. Just remember not to overendulged
and you'll be fine.
Hugs, Linda in AL.

<<I am on Enbrel (sureclick) injections 2x a week.
I really disliked the Sureclick. When I started Enbrel we received a vial of
powder and a syringe filled with saline solution. We'd inject the syringe into
the vial and stir (not shake!) then let sit for a while. Then we'd refill the
syringe with the mixed formula and inject.
That was OK, but the next iteration was better: the pre-filled syringe. Now I
am on Humira and that is how I receive that as well.
But in between the pre-filled Enbrel syringe and the same venue for Humira I
briefly used the Sureclick. My rheumy suggested that it might hurt more, and
boy did it. I think you have the option of getting Enbrel in either the
pre-filled syringe or the Sureclick, and and if I were you I'd opt for the
former.
On a related subject I don't use the thigh but the stomach. I think there are
more nerves in the thigh, or perhaps the layer of subcutaneous fat is thinner
on the thigh. Whichever, the stomach has always been the more pain-free
injection area for me.
best of luck --
RA Harris, North Jersey

I am on Enbrel (sureclick) injections 2x a week. I always take
Enbrel out of the fridge and let it sit out for 30 minutes and then
my husband gives me the shot in my thigh. Sometimes the shot burns
worse than other times.
So here's what I am wondering....
Has anyone else noticed that the pain of the injections is
worse/better per injection?
Also, does anyone else take the shots in the thighs? If so, what
area of the thigh? My rheumy said to give them to myself in the
stomach, however the PA in my hands is so bad that I don't have the
strength to actually push in the button on the sureclick injector.
And my husband doesn't feel comfortable giving them to me in the
stomach.
Any advice would be appreciated. Thanks!
Jackie

Hi Kristy,
It is perfectly normal to go through a depression after any major
surgery. Not everyone does but don't be hard on yourself if you feel
a bit down. Our bodies go through some major things because of
surgery, the anesthesia takes weeks to be totally out of our bodies,
the exhaustion from surgery can wipe a person out and the major
change in eating. All these things can make you feel a bit down.
Here's what you should do: Make sure you are getting adequate
nutrition---are you getting enough protein in? Are you exercising
enough? Exercise stimulates something in your brain (endorphins
or ??) and exercise helps beat depression!!! Try something new and
different, get up and get out of the house! Also, do you have a
local support group or person that you can talk to?
Hang in there and be patient. Things will get better!!!
Bridget Northam

Hello everyone,
Well today I am 23 days out. I am in a mental slump
at the moment. I would have never imagined that it
would effect me emotionally like it has. I am not
going back to work until the 18th because I just don't
feel like being around people. Has anyone out there
had feelings like this?
Thanks,
Kristy

WTG HON!!! that is exciting news!!! your doing great! Keep up the
great work skinny!! :)

Hi Jill, congrats on almost stopping quitting, your doing
incredible!! I had to quit cold turkey, and its been 4 years next
month for me. I smoked 1.5 packs per day since i was 15, it wasd the
HARDEST thing in the world for me to, even divorcing my 1st hubby
was easier LOL anyway... i remember my doc saying i had to quit, and
i told him i had, he sad if i started back, he would not do the
surgery. I think thier thinking was that if your strong enough to
quit smoking, you are strong enough to actually lose the weight and
go through the surgery. Plus there is a huge risk as it is for GBP
patients, this isnt an easy surgery, and these docs are trying to
save our lives, so allowing thier patients to smoke, could enduce
health risks that they DONT want to be associated with THIER great
deed if you know what I mean. You are doing great, keep it up, get
the gum if you like, my husband who smoked as uch as you did, is
STILL chewing it 4 years later, but i dont care, at least he isnt
smoking the bad stuff!! Funny how i still miss it every day, but
then i look at the new me and say how aweful a cig would look
hanging out of my mouth now! And the hardest time is when i talk on
the phone, i used to love to smoke, so instead i do laps in teh
house LOL my family thinks im nuts, but honey yu do what you have to
do! Good luck hugs

Kristin,
Congratulations, feels good doesn't it? Keep up the good work and keep us
posted.
Hugs,
Laurette
4/23/04 open rny
309/290/211/160
St. Vincent Charity
Cleveland, Ohio

Thanks so much for your reply. For the most part I haven't really been
feeling bad. Knowing this puts me in a real funk!
Elaine

I know how you feel. I try to do things around the house, then feel
guilty when I hurt and cannot do them. Your friends mean well, they
just don't know how to help you. Suggest that they read some of the
info on this list and some of the sites that tell about PA. Maybe
some education (for them) on the subject will help you more than
anything else.
"shirley_s_2002" <shirley_s_2002@...

<<A lot of my friends seem to feel that I am depressed and that
accounts for a lot of my pain.
Sounds as if you need new friends.
Julienne

Mindy - I have not seen that from my Humira use. I have heard horror stories
from several women about Arava, but not Humira. I did have my hair come out in
clumps from MTX, and used a product called Shen Min which did seem to help. They
sell this at GNC and Vitamin Shoppe.
I tell you what, I am 35 and it was incredibly depressing to have my hair come
out. I hope the Shen Min helps
Julienne

G'morning all.....just had to tell someone. Friday is my designated weigh-in
day. I decided that stepping on the scale every day was just gonna be
depressing. So since today is Friday (in case anyone had'nt noticed,
lol)...I did the deed aaaannnnndddd....drum roll pls.......18 days out of
surgery....the magic number is 238.6!!!!! Down from 260 on day of. I'm am
so thrilled...I hav'nt seen below 240 territory in like 8-9 years. This puts
me at officially the 100 lbs to go to goal mark.
WWWWHHHHHEEEEEEEEEEEEEEEEEE!!!!!!!!!!!
Kristin

A lot of my friends seem to feel that I am depressed and that
accounts for a lot of my pain. I cry because of the pain mostly as
it wears you down. I am one of these that I am useless without sleep
or if I miss a meal. Just mention Lassie and I cry!
I do feel down but not especially depressed, lonely but only when I
am alone. People want to see me better I know but I feel like I have
to oblige by looking well. Then they see me close to tears and start
trying to fix me, give me advice on this condition which unless they
have experienced it which no-one around me seems to have, they come
out with some very sensible advice like get some exercise get out
and about and eat well, you will feel better soon.
I feel like I am letting people down when I don't get better and have
a bad day cos they say its just a flare up and will pass soon.
Since last September I have had exactly two weeks of some relief
through cortisone injections.
I hope for some relief soon and I am waiting for a different
medication as MTX and Avara made me really ill.
I am going to try and look at alternatives like aromatherapy and
nutrition and natural antibiotics.
If I have any success I will pass on the info.
I have to get better to make my friends happy!
"jetzsun" <jetzsun@...

Elaine
These symptoms are all related. This disease is one that affects all areas of
the body. Shoulders, ankles, feet, hands even the eyes. I was at home one night
a couple of months ago when I suddenly went blind in one eye.My sight has not
returned and I blame it on the weakening of my auto immune system which is a
causative factor of PA. So be sure to report all these symptoms to both Doctors.
Good Luck
Walt

Last September I was diagnosed with PA and started on Enbrel.
Although the Enbrel was great for my skin, I was having terrible
injection site reactions, which drove me crazy, and switched to
Humira in January. I don't feel any different on the Humira but have
noticed that my skin is getting bad again. At the end of January I
fainted in my home and broke my ankle. EKGs and blood work checked
out normal and the ER doctor thought the light-headedness might be a
side effect from the Humira. Personally I think it was a freak
accident. Now I'm having shoulder pain and in looking up bursitis
and tendinitis on the internet yesterday, I came across something
that said TNF medications can cause this. Unfortunately I can't find
that same website today. Found something from the Cleveland Clinic
that says 'other diseases or conditions that weaken shoulder muscles
are rheumatoid arthritis, gout, psoriasis, etc."
Any opinion on this? I'm going to see an orthopedic tomorrow and
have an appt with my rheumatologist next week. Do you think these
can be related? I also have stiffness in my left hip when I stand
and am starting to have pain in my foot when I walk. Sometimes I
think it's my imagination. I don't want to sound like a
hypochondriac! Thanks for listening and sorry for the long message.
Elaine

Patty S
you say recovery is alot easier then c section. I have a ? though compared
to a c section how was the pain less or worse? Just wandering cause I also had
a c section. Also if anyone in here had a c section and had the open surgery I
would also like to hear this answer from you as well cause I will be getting
the open
Love Debbie

Hi Lynn,
my feet are always sore and walking is not much fun, so now I soak my feet
first in water that has some Hibiclens (you buy it in the drugstore). It helps
with the sore spots, then I use just a little neosporin + pain, put it on the
spots that really hurt and finally I use either "Emu-Blue" or "Miracle Foot
cream" massage it in real good then put socks on. I use thin socks, not the real
heavy one. I manage almost all day this way.
I usually do it before I take my shower. I put the stopper in and sit on the
side of the tub for about 5 minutes and use a soft toothbrush on the bottom of
my feet, real gently.
Maybe this will help a little.
Eva

I am not severly afflicted wih PA compared to some of you, and I also
have OA. But my feet and ankles are are really sore and it's hard to
walk. I have been taking 10mg MTX once a week for the last 9 weeks and
haven't noticed any improvement. I have a follow up with my Rheumy on
Friday, and she mentioned that she also prescribes Enbrel if the MTX
doesn't work. I am wondering if she will up the MTX or will just add
the Enbrel. Has anyone been in this situation? I know the Enbrel is
expensive and I have an HMO (Kaiser) and am wondering if that will
dictate what drug treatment I will go to next. Anyone out there with a
similar situation? Thanks
Lynn

I agree with you. Mine began after a very stressful
situation involving my husband and his lover. Then
after minor surgery ,it struck with a powerful blow.
There is still stress because of his situation and
many more like it. I have found that a low dose of
antibiotics daily helps the pain.
Theresa

Amelia,
I think that, at least for me, you are quite right. I also tend to
internalize things. I changed jobs before my PA became so bad I had
to go on disability. I went from a moderately stressful job to an
extremely stressful one. My body went on TILT! The most ironic thing
is that everyone, coworkers, family didn't even know that I was under
a lot of stress or in that much pain for that matter. Since quitting
work I have a new lease on life. Yes, the joint damage is still
there, and it's substantial, but the rest and peace of mind has done
wonders for me. I was running blood pressures of 190/95 even with
taking beta blockers. Now it is running 120/68. My frame of mind in
general is 100% better.
Hang in there and I hope you can find some relief.
Deanna

I wanted to know if anyone has had a delayed drug reaction.
I had been taking Diclofinac for almost 5 months and it was working great.
However, I stopped for a week (Doc. told me to take as needed) and then when I
took another one my throat completely closed up. I could breath, but it felt
like an allergic reaction. I was wondering if anyone else has experienced this.
I'm terrified to take any pain relievers right now and am lucky that my joints
aren't all rebelling against me.
Help?
Sarah

Hello Wendy,
I had my surgery on Oct 6th i have lost 50 lbs. Mine was done laprocopically. I
also in the past had 3 c-sections and recovery was ALOT easier for this than
having babies LOL. I had a denile the first time it went to my insurance and had
to show proof of co- morbiditys. But i was very persistant with the surgeons
office and insurance and they approved it the 2nd time around. I would do it
again in a heartbeat. Please ask away the group here is great with sharing their
expeiences and answering questions.
Welcome to the group
Patty S.
Have a great day!
Patty Schroeder

Judging from the way MY body replies to arthritis and injuries, I always call my
Rheumy when I injure my foot. I sprained my ankle once and the swelling didn't
go down for almost 5 months--I went to 42 million specialists, but didn't get a
logical answer until I saw my Rheumy and she was able to explain what was going
on.
My rule of thumb is that only YOU know your body and how YOU respond to
treatment, illness and injury. However, if you don't feel like you are healing
properly, call them ASAP.

Hi Jil..welcome! All I can tell you is I had my first cig when I was 9....when I
was almost 45, I had a hysterectomy. My doctors begged me to try the patch. I
said ok...figured I'd be fine using it in the hospital but thought for sure
while I was home on a 6week medical leave I would smoke again. I smoked 3 packs
a days at this time. I had tried a few other times to quit but cried all the
time. Well for me, the patch took away the emotional edge. I had an open pack in
my purse when I went home and 2 cartons in the fridge. I never reached for them
in 2 weeks, so I gave them all and my ashtrays to a smoker friend. I truly
believe it was a miracle because I didn't believe I couold quit...I knew how
very addicted I was. But I did quit. I tell people to try the patch and have a
hysterectomy! lmao I had such a bad smokers cough it hurt like hell to cough. I
don't know if I've helped, but at least you now know it's possible..I've been
smoke free for over 5 years. Never did anything as hard
but have never been so proud of myself!
Mary open rny 12/3/04
Jill <iamsimplyjill@...
Hi, be patient this is the first time I've done this! I'm trying so
very hard to quit smoking, I've gone from almost 2 packs a day to
only 2 whole and several drags since last friday! This is truly the
most diffuclt thing I've ever done! My question is has anyone been a
heavy smoker like me and told they must quit before surgery and been
told they needed to pass a nicotine free test? I'm afraid that if I
stray and the doctor see's a trace he won't do the surgery. Not that
I need validation, (I know it's bad, wrong, unhealthy etc etc) But I
can't understand why someone can have unplanned open heart surgery or
any other kind of surgery and be a smoker and have it be unthinkable
for me whose trying to quit and it is the one obstacle that may stand
in my way. Could any sympathetic smokers or former smokers respond
to this post? I don't want a lecture I want information that will
help me. Thank you so much for taking the time to write me. p.s.
I've done 95% of what my surgeon calls for before I can even schedule
an appointment with him and I'm happy to say I'll be meeting with him
on January 18. I'm so excited, it's felt like a never ending, lonely
process to get this far.

Hi everyone,
This is probably a stupid question, but I am going to ask it anyway (I
wont be able to hear you if you are snickering anyway...LOL). Anyway, I
know because of the meds that we are on, that it is important to call
your Rheumy if you think you may have any kind of infection. But what
about if you have an injury? I fell yesterday, my foot rolled sideways
and I tore the ligaments in my ankle. I went to the emergency room, no
broken bones, torn ligaments and they put my foot in an air-cast for a
few weeks to heal. Is it important that I let my Rheumy know about
this?
Thanks

Interesting. I have found the same things. Fried food is awful and
increases my pain. I have also found all beef and pork products make my
arthritis worse, so I just avoid them as much as I can. I wish I was
consistent. I only cook with olive oil and try to stick with a low fat
vegetarian diet and when I am consistent I feel much better. I have not
drank cows milk for over 5 years and usually drink soy milk. I have
also noticed that many spices make me feel better including ginger,
garlic, cinnamon, curry, and turmeric. My husband makes a vegan soup
called mulligatawny that is fabulous and I immediately feel better after
eating it because of all the fabulous spices. How did you get
information on your chronic pain and inflammation protocol? Is there a
web site I can go to for assistance? What medicines are you taking?
Thanks for your help.
"Shelley Sheridan" <sksherid@...

I am so jealous! My husband and I lived in Nashville for 7 years (I loved it
there), moved from there to Alabama and from there to Illinois. We just drove
through Nashville today on our way home from East TN. I get homesick every time
I pass through!
Joy in IL
Dora McCary <dobie161@...
Linda,
I sure hope not. My husband was born and raised in Nashville and I can't see him
ever leaving. I would love to move back to Murfreesboro where I grew up (35
miles south) but will stay here for him. My work is here too and the drive was
killing me since it would take me over an hour to drive that distance each way.
But you are right, I never say never!
Dora
Lap RNY 9-20-04
Vanderbilt Hospital
Nashville, TN
447-375-165
-Nobody can make you feel inferior without your permission.-
Eleanor Roosevelt

Hi, be patient this is the first time I've done this! I'm trying so
very hard to quit smoking, I've gone from almost 2 packs a day to
only 2 whole and several drags since last friday! This is truly the
most diffuclt thing I've ever done! My question is has anyone been a
heavy smoker like me and told they must quit before surgery and been
told they needed to pass a nicotine free test? I'm afraid that if I
stray and the doctor see's a trace he won't do the surgery. Not that
I need validation, (I know it's bad, wrong, unhealthy etc etc) But I
can't understand why someone can have unplanned open heart surgery or
any other kind of surgery and be a smoker and have it be unthinkable
for me whose trying to quit and it is the one obstacle that may stand
in my way. Could any sympathetic smokers or former smokers respond
to this post? I don't want a lecture I want information that will
help me. Thank you so much for taking the time to write me. p.s.
I've done 95% of what my surgeon calls for before I can even schedule
an appointment with him and I'm happy to say I'll be meeting with him
on January 18. I'm so excited, it's felt like a never ending, lonely
process to get this far.

Hello everyone and thank you for asking this question.
My theory for myself is that through the years my immune system was
weakened from stress; that I had the gene, and finally minor surgery
totally triggered the onset.
I also believe that personality type plays a big part in how we react
to stress and therefore some of us; not knowing it have internally
turned that stress into illness.
So for myself it is not just one thing but a combination of factors
that precipitated this illness in myself.
Wishing everyone an awesome day..............amelia

Hi Wendy,
I had my surgery on Sept 7th and wouldn't change a thing about it.
I have lost 74 pounds so far and in a size 16 down from a 24. I
feel so much better and stopped using my asthma med's. The emotions
you feel and will feel are very common and normal. I know most
insurance has gotten stricker but I was able to be approved within a
few weeks. Just remember they are all different..even we are so we
have to remember not to compare each other. Good luck and we are
here to help you along the way. Also, welcome to our family.
Hugs, Linda in AL.

Hi Andy,
I don't know of any organizations studying this, but many of us with PA (or
other types of arthritis) have noticed over the course of having it that high
barometric pressure really brings some relief to the usual symptoms. The
corollary is that some of us can reasonably predict a coming storm (low
pressure) because our joints tend to start really hurting. For myself, I figure
there's at least a 70% correlation between low barometric pressure and joints
really acting up. It's no surprise to hear your R doesn't seem interested. It's
only been in recent years that Rs and some other doctors have seemed to
recognize that their patients making such claims may have been accurate all
along (i.e., not "crazy" of otherwise have odd things going on in our heads).
If you find any organizations, research centers, studying the issue, please
let us all know.
Don
Boston

Hey Pat,
That's alot of moving in a short time...LOL!!! I have to admit I
lived in the same house from birth till I was 18. Moved with Mom
and Dad to a new house..and left there in 2002...LOL!!! I stay'd on
when I became a single parent so my Son could be nurtured by my Dad
on a daily basis. When my Dad passed away in 1991 I stay'd on to
help my Mom who was lost without any direction. I felt I could
leave when we both found Men. Since moving up here we have only
moved once to our current home. Now I know I have several more in
my future...LOL!!!
Hugs, Linda in AL.

Hey Pat,
I also can eat sweets...and do to a minimum. I don't overendulge
but once a week sweet attack isn't all that bad...and I am still
loosing too! I am down 74 pounds since 9/7 and feel alot better
now. 5 more pounds and I will be 199!!!
Hugs, Linda in AL.

Yes, and now read the book "The Road Back" by Henry Scammell. It will tell you
why many people have switched from arthritis medicine to antibiotics. I have and
the three months I have been on antibiotics have helped me to start feeling
better.
Eva

Hey Julia,
That is right, fruit preserves. I had just bought some from the
store and anxious to use them.
Hugs, Linda in AL.

<<Hello, my name is andrea. I am in the process of researching air
pressure and arthritis. Why? because in 2001 I developed psoriasis
after I moved to 4500 feet from sea level
Hi Andrea. I'm again thinking along the lines of minerals may have
something to do with psoriasis. I've heard many other accounts of psoriasis
changing
after moving to a different location/ climate. Do you suppose it could be
something in the water that made the difference? If you don't mind me asking,
where are the two locations you have lived so I can try to find info on the
water. I tried a long experiment with using distilled water and noted no
improvement. Orin

Hi Shelley,
Definitely all fried foods and prepared meets like sausages, frozen, and caned
foods are aggravating my PA, although I tried consume all organics,it did not
worked,and I am avoiding them.
also if I take high calorie foods with red meets for more than one or two days I
will pay for it with pain and inflammation in my joints specially ankles. High
Sugar containing foods and fruits are the same. I avoid alcohol and smoking
and use spices like Ginger and garlic and replaced sugar with the xylitol and
Stevia, also avoid omega 6 oils that aggravate inflammation such as corn oil,
soy bean oil, safflower oil and sunflower oil. I follow a chronic pain and
inflammation protocol
(long -term joint pain, chronic inflammatory diseases) which is helping me to
manage my inflammation and pain better. I know this disease is not curable but
with medicine and choosing healthy lifestyle and dietary and supplements we can
have more chance of sending it to remission more often and for longer terms.
Unfortunately the only thing that I cannot avoid it is stress, which I try to
use relaxation techniques such as meditation and so on.
I wish you the very best of health,
Peace soudi

Hello My name is Andrea I currently live in Utah (again). I have a
theory about my disease that I want researched or at the very least
studied. In 1990 I moved to Portland Oregon (sea level). In 2000 I
moved back to Utah SLC (5000 ft above sea level). In the year 2000 I
had a diagnosis of Psoriasis, one small patch on my shin. In 2002 I
moved back to sea level and the psoriasis disappeared. I had no other
symptoms in the next 2 years. In 2004 I needed to move back to SLC
Utah for various reasons. In January of 2005 I was diagnosed with a
shallow vein thrombosis. In late 2005 and early 2006 I had to sleep
after work every day and developed a bruise like area on my clavicle.
By June 2006 My left fore finger swelled up and I began to have
severe fatigue and dizzy spells. It was in July and the remaining
moths of that year that I was diagnosed with this disease. I now have
full blown Psoriatic arthritis that is resistant to treatment. There
is something in my physiology that is linked to sea level pressure
but I have no way to prove it. My husband and I wish to move back to
the Washington/Oregon area and I want someone to study the effects of
this climate change on my disease. I am willing to do what ever a
research team needs to look into this aspect of auto-immune arthritis
because I think it will be valuable in the ongoing arthritis research
studies.
Please take this offered opportunity to study this. No one else has
and I believe it is valid for at least some sufferers. Since my meds
at retail are 1400.00 per month for just ONE of my meds I would think
that some entity would like to research the alternatives to this
devastating disease. I am not asking for finances I am not asking
for anything but for someone to at least track this for the sake of
more information for everyone. I will move back to the northwest come
hell or high water with or with out your study. Please take advantage
of this opportunity to study this aspect of this disease.
Please At least consider that this might provide answers for some
sufferers. I am an open book, I will give you access to my med recs
and anything else and if by chance you can help me in some way ok.
But that is not my goal here. My goal is to help others and to
advance research for these diseases.
I hope that you will consider my offer.
Sincerely,
Andrea

The scar really depends on how your surgery is done...with lap you would get
about 5 small insisions and with open it usualy goes from the breast bone to the
belly button....Mine has gone away somewhat.....I have been told it will go away
more when I get my tummy tuck...it depends on the elasticy of your skin....no
clue on the weight ....I lost about 17 my first week....I have a friend same
surgion and she lost about 12 I think....
Kim Graby
Open 5-5-03
242-121
lilawen_87 <triciaturkturk@...
I just have a couple of questions. After looking through many of the
photos I saw one woman with a large scar on her stomach. Does that go
away? Also, what's the average amount of weight expected to be lost
like the first week and from then on out? I'm sure it's all on a case
to case basis, but there must be some average. Thanks.

I just have a couple of questions. After looking through many of the
photos I saw one woman with a large scar on her stomach. Does that go
away? Also, what's the average amount of weight expected to be lost
like the first week and from then on out? I'm sure it's all on a case
to case basis, but there must be some average. Thanks.

Hi, I'm Cathy and new to the group. I was diagnosed with PA 27 years
ago when I was 32. I've tried many things through the years including
Enbrel and Remicade. Enbrel quit working and with Remicade I had 2
life-threatening infections. I am now using Humira and having good
results. I hope to be able to continue with no more infections.
Looking forward to getting acquainted with all of you and learning new
things that may help.
Cathy

I see some messages about ear pain and can relate. For me it is
constant but I can also hear a mouse fart a mile away. Don't whisper
around me your secret isn't secret. Right after I moved back to 4500
feet my left jaw seized. I could not eat solids for 3 weeks. Since then
I have intermittent ear pain and aching on both sides. my doctors have
little comment. i think it is air pressure. Yeah yeah I am a harpie on
that one but I think it is relevant.
Just my 2pence
Andy

<<My theory is that the low air pressure here is causing my immune
system to react in this way. I can not find any studies or other info
This is a good theory, and to add my 2 cents- I know whenever I fly, I
am in agony pain-wise. My joints ache so bad that I have a hard time
deplaning. Must be the altitude.
Tammie

How does medicine effect you after surgery? For example I have
Bipolar and Borderline Personality Disorder and I have to take
medication and one of the medications I have to take at bedtime
makes me sleepy (Seroquel 300mg). How is my small pouch
going to handle 300mg of medication like that? Will it just knock
me out as soon as I take it or will it just be normal like it is now
and I will just get sleepy in an hour or so? Normally our stomach
has food in it and can soak up some of the medication but with
that little pouch, I didn't know how that will work.
Lynn H. <

This is interesting. My rheumy and I just discussed Remicade -- and she
didn't recommend it. She said it had the same basic properties as Humira
(which I'm on) and that the biggest difference was that you got the Remicade
in one big dose, whereas with Humira, the dosage is spread out over a period
of time. She said most people had more side effects with Remicade and that
if there's a major issue, it's harder to take someone off it quickly. For
example, if you get sick, the Remicade is in your system and treating
certain illnesses (i.e. bronchitis) is more difficult. With Humira, you can
stop a shot or two if you get ill.
It's interesting hearing your experience.
Patty

I also get it in/out my ears -- Olux works great!!
Cheryl M.

Andy: I did just a little bit of web searching on the geographical distribution
of PsA (or other auto immune diseases) after some of the recent discussions
among this group. Didn't come up with much but didn't get in depth (i.e.
medline, etc.). However, there was one website and I tend to think it was the
Psoriasis Association which deals a great deal with PsA that gave you an
opportunity to submit research ideas. Might wan to check it out.
Joanna Hoelscher

This is funny since you mentioned gum. I went to bed with an upset
stomach. I was dreaming that I swallowed gum and hung my head over
the side of the bed to vomit (I am getting good at vomiting) I did
fully wake up before I vomited on the floor but that dream really
scared me. Now I can laugh about it. I craved KFC in the
beginning, so I tried a piece, again vomited it back up. So if you
are tempted just remember if your stomach isn't ready it will reject
it.
Pat in RI

Ann --
Could you please explain a little more about the back blocks?
Cheryl M.

Hot and humid is where I experienced my worst flare as well. In fact,
even hot and dry proved terrible last summer. I do much better in
cooler climate w/o a lot of barometric changes, even if cold!
Cheryl M. (in Alaska!!)

Linda,
I sure hope not. My husband was born and raised in Nashville and I can't see
him ever leaving. I would love to move back to Murfreesboro where I grew up (35
miles south) but will stay here for him. My work is here too and the drive was
killing me since it would take me over an hour to drive that distance each way.
But you are right, I never say never!
Dora
Lap RNY 9-20-04
Vanderbilt Hospital
Nashville, TN
447-375-165
-Nobody can make you feel inferior without your permission.-
Eleanor Roosevelt

Carla --
I concur w/Joanna's msg below. I was first introduced to Remicade as
the drug of choice for my daughter when she was dx w/Crohn's disease
and I am now taking it for my P/PsA. After the PA, I started dealing
with IBS, so I welcomed the Remicade when the rheumy received it last
June. My daughter got great results for her Crohns from Remicade.
Cheryl M.
\

Tricia,
Welcome to the group hon and I wish you luck in your journey. Sorry to hear
you have had such a rough life but it sounds like you've got a good head on
your shoulders. We are all here for you when ever you need us. Take care and
keep us posted on your progress.
Hugs,
Laurette
4/23/04 open rny
309/290/211/160
St. Vincent Charity
Cleveland, Ohio

Linda,
Thanks for the recipe it sounds yummy.
Hugs,
Laurette

Hi Tricia,
Welcome to our family. We are all at different phases of surgery,
pre and post. I had surgery on 9/7 and feel like "almost" a
million. I am sure we can all lend you some support along the way
and please ask questions if you have any. There is a high
percentage of teens who are canidates for weightloss surgery and
luckly take advantage of this life changing opportunity. Good luck!
Hugs, Linda in AL.

Can you tell us more about the "new" procedure? Is it good for all
joints or just SI?
Cheryl M.

Welcome to the family Tricia, keep the faith it will happen for you.
We all know what your going through and will be here for you.
Pamela
11/19/02
183 lbs gone!!

HEALTHY COFFEE CAKE
2 cups reduced fat Bisquick
2 cups whole wheat pastry flour
1-1/2 cups Splenda
4 large eggs
2 cups skim milk
2 tablespoons baking powder
2 teaspoons ground cinnamon
1 teaspoon ground ginger
1 cup unsalted sunflower seeds
2 cups low sugar preserves
Pre-heat oven to 375 degrees F. Whisk together Bisquick, whole
wheat
pastry flour, Splenda, eggs, sk