glaucoma

2008-11-21 01:15:02

Well, lucky me, add glaucoma to the list of ailments! I got the good news
from the eye dr. today - just when I was expecting a doctor's visit to be
short and sweet with no problems!
Anyway, I researched a little bit about it online and while mine is probably
due to diabetes, steriod use can be a contributing factor.
So all of you on prednisone, or who were on prednisone (the drug we love to
hate), please, please, please, get your eyes checked.
Glaucoma isn't a big problem if caught early, but if not diagnosed, you could
lose your vision. Please get checked.
Thanks,
Tracy

Dr. appointments and new symptoms

2008-11-20 23:51:18

I had an appointment with the physical rehabilitation doc. She is just as
confused as my PT therapist as to why I am not getting any better. I have been
going to PT for a month now. I told her how I wake up during the night and how
I am in excruciating pain in the morning. She said to keep my pain killers by
my bed and to take one when I wake up in the middle of the night (as long as it
is before 4 am. She said that way I can sleep throughout the night and maybe
the pain killer will still be working in the morning so I don't feel so bad.
I also told her how I always forget things and how I am always falling asleep.
It was scary b/c I drove myself to the appt. this morning (hubby had to work)
and I fell asleep at a light. It's kinda like I blackout just for a little
while and then I wake up and for a couple of seconds I forget where I am at. It
is so frightening. I really do feel like I am losing my mind (just as my
husband said). I asked if it could be the meds and she said it is the fibre and
depression. I knew it couldn't be the meds anyway b/c I didn't take them this
morning I was scared to drive so I waited to take my meds. I still have the
horrible fatigue. It is mind numbing. It painful to stay awake. And, it
doesn't matter how much I sleep, it is always there. My vision is blurring and
sometimes I see double. This is happening more often now. Often I have to
close one eye and squint to see. It only happens for a little while, usually
when I am VERY tired. I have also started stuttering at times and repeating
myself. My doctor said that I might be on too high of a dose of the neurontin.
Did anyone else have any similar reactions to neurontin? I really hope that it
is from the neurontin b/c in that case I can quit the med and it will go away.
If it is from the fibre then I will be stuck with it forever.
I asked the Dr. about the EMG and she said I still need to get it. The
neurontin is helping with the tingling but I still have the numbness. The
tingling comes and goes. She said that I will have the numbness forever and it
never goes away.
I told my husband about how I fell asleep at the light. He got really angry.
He told me that I was going to kill myself and he is tired of me seeing these
doctors that don't do anything to help me. He didn't understand why I have to
go to the doctors all the time. He blamed it on my medications and didn't
believe me when I told him the doctor said it was from the fibre and depression.
He went on about how he hates his life and how he was in a good mood until I
called him and told him that. I told him that it isn't my fault and he said it
isn't his fault. He said I have to be careful. He told me not to call him and
tell him about things like that anymore. It is like he rather not know, so he
doesn't have to worry about it.
He called me after to apologize. He told me that he loves me and that he is
angry with my doctors. He doesn't want anything bad to happen to me. He gets
upset and forgets that I feel the same way as him (even more since it is my body
). Some times I am afraid that this disease will rip us apart. It puts such a
burden on our relationship. I know he isn't happy. I am not happy either. I
love him and he says the problem is that he loves me too much. This disease has
changed me though and I am not the happy girl he fell in love with. I don't
know what to do. He says that I have to be more careful and not put myself in
these positions. I tried to explain to him that he can't drive me to every
appointment or to work everyday . I had two huge cups of coffee this morning,
took a shower to wake me up, I even had the windows rolled down to give me fresh
air. Nothing wakes me up when I am this tired. I go to sleep early and that
doesn't help. The doctors gave me no suggestions. I really don't know what to
do. I have to go to work and I have to drive to get there....Even right now I
am nodding off. I have to leave for lunch soon and I am afraid to drive. All
the way up here I was swerving...From the way I look I am afraid that people at
work will think I am on drugs. I can't keep my eyes open. Gotta go.
Take care,
Leslie

Medication list

2008-11-20 16:16:55

Does anyone else take a list like the one below?
Remicade - 2nd infusion was Monday April 22nd (still no relief)
Methotrexate - .5 CC's - once a week (shot)
Leucovorin - 5 mg - 12 hours after Methotrexate shot
Folic Acid - 1 mg - 1 every morning
Prednisone - 5 mg - 2 every morning - 2 every evening
Bextra - 10 mg - 1 every morning (newest anti-inflammatory)
Azulfidine - 500 mg - 3 every morning
Others:
Lipitor - 10 mg - 1 every morning (High Colesterol)
Cardizem - 120 mg - 1 every morning (High Blood Pressure)
All this, and I just turned 39.
What a bummer :-(

chat

2008-11-20 11:31:48

hi all
i know the one this afternoon is eastern time. jan i will try to
make it this afternoon. having a family crisis today,
so i might not be able to make it.
thanks
susan

Fwd: Psoriatic Arthritis: A Growth Industry

2008-11-20 09:52:25

This is an interesting article I just ran across. Not sure what to
think.
--- In RA-SUPPORT@y..., "Gina Walker" <Matsumura_Clan@m...
Psoriatic Arthritis: A Growth Industry
By Jennifer Huget
Special to The Washington Post
Tuesday, February 19, 2002; Page HE01
On Jan. 16 the National Psoriasis Foundation announced results of a
survey that showed that psoriatic arthritis -- a chronic, progressive,
inflammatory form of arthritis associated with the skin disease
psoriasis -- is more than three times as common as previously
believed.
According to the survey, the painful, unsightly and sometimes
debilitating disease affects as many as 1 million Americans.
That doesn't help the afflicted, but it's big news for Immunex Corp.,
a
Seattle biotech company that helped fund the survey and announced, on
the same day the survey was released, that its drug Enbrel had become
the first drug to receive U.S. Food and Drug Administration (FDA)
approval for treating psoriatic arthritis. Enbrel, already approved
for
and often used to treat rheumatoid arthritis, is expected by its maker
to reach $1 billion in sales this year. It costs about $12,000 per
year
to treat a typical user.
The survey (which another biotech firm with a stake in the psoriasis
market helped to fund) was done not by epidemiologists but by market
research firms. According to the National Psoriasis Foundation, the
researchers randomly selected 27,000 Americans and interviewed them by
phone. One-half of 1 percent of the survey group self-reported having
been diagnosed with psoriatic arthritis; the firm applied this figure
to
the U.S adult population to come up with the estimate of 1 million
adults having the condition. Previous estimates -- which for years
stood
at 300,000 and were raised to 500,000 by medical consultants just
prior
to the survey -- were based largely on percentage estimates of the
psoriasis population.
Psoriatic arthritis primarily affects people aged 30 to 50, but people
much older and much younger (including children) can suffer from it,
too. With symptoms that can include joint pain, swelling (particularly
in the hands) and thickened and pitted fingernails, the disease is
often
misdiagnosed or undiagnosed. Because its symptoms are similar to those
of rheumatoid arthritis, it is frequently mistaken for that disease.
In
other instances, its symptoms may seem so minor that patients don't
even
mention them to their physicians, who, in turn, might overlook them.
The situation is complicated by the fact that psoriasis patients
generally are treated by dermatologists, who aren't necessarily
focused
on recognizing arthritic symptoms. According to the National Psoriasis
Foundation, about 4.4 million American adults suffer from psoriasis, a
serious skin condition resulting from an overgrowth of skin cells.
The foundation's survey bore out the notion that psoriasis and
psoriatic
arthritis are closely linked: About 85 percent of those with psoriatic
arthritis also reported having psoriasis. Yet about a third of those
with psoriasis said they had joint stiffness but had not been
diagnosed
with psoriatic arthritis. That finding, the foundation notes, suggests
that a substantial number of people have psoriatic arthritis and don't
even know it. In fact, according to Kenneth Gordon, a dermatologist at
the Northwestern University Medical School in Chicago, some people
with
psoriatic arthritis don't even show any signs of psoriasis.
Gordon and his colleague Eric Ruderman, director of rheumatology at
Northwestern, are about to open what is believed to be the first
clinic
for the treatment of psoriatic arthritis. Their patients will be able
to
consult simultaneously with the skin doctor and the arthritis expert
and
to coordinate treatment. (Ruderman and Gordon have served as
consultants
for Immunex.)
In the absence of any drug specifically approved for treating
psoriatic
arthritis, doctors have for several years made off-label prescriptions
for Immunex's Enbrel, which had already been approved to treat
rheumatoid arthritis. But since many insurers won't cover off-label
uses
of a drug -- particularly one that costs $1,000 a month -- its use for
the condition has been limited. Doctors also draw on other drugs
usually
applied to rheumatoid arthritis: aspirin and ibuprofen to ease some
symptoms; systemic, disease-modifying agents such as methotrexate that
relieve symptoms and may slow disease progression and minimize joint
damage; and the immunosuppressant cyclosporine.
Enbrel, a "tumor necrosis factor-alpha" (TNF-alpha) receptor, is
expected to trump these treatments by interrupting the essential
mechanics of the disease.
But it will not be immediately available to all comers. Because demand
outstrips supply (new manufacturing sites are in the works),
prospective
patients must apply to be added to the Enbrel waiting list. Once they
get the drug, they need to be on the lookout for some serious side
effects, including heightened susceptibility to infection and,
apparently, the potential onset or exacerbation of multiple sclerosis.
(Enbrel carries a prominent label warning.)
If things seem a little cozy between Immunex and the National
Psoriasis
Foundation, they are, but perhaps no cozier than other drug makers and
the nonprofits they give financial support to. Foundation spokesperson
Molly Marshall says her organization purposely timed the release of
its
survey to coincide with the FDA's approval of Enbrel, hoping the
coincidence would spark media interest. "Past experience has shown the
press doesn't want to talk about psoriasis," Marshall said. (Those of
a
certain age will remember widely mocked television commercials
lamenting
"the heartbreak of psoriasis.")
Marshall suggests the survey's numbers may be imperfect, in that they
depended on people's accurately reporting their own symptoms and
diagnoses. "The only way to know the true incidence or prevalence is
to
bring people in to see the doctor and diagnose them," she said, adding
that chances for funding are remote.
For its part, Immunex says the new numbers, despite the fact that it
helped pay for them, won't much affect its marketing plan:
Spokesperson
Robin Shapiro says, "We always knew the market was several hundreds of
thousands of people, so in terms of market projection, there was no
substantial change."
In the meantime, watch this space: The Psoriasis Foundation data
released in January represent part of a larger survey conducted in
December 2001. The other part, dealing with psoriasis itself, is to be
released in April. The Boston biotech firm Biogen Inc. anticipates FDA
approval for its psoriasis drug, Amevive, by the end of the year. And,
yes, Biogen was the survey's other major funder.
Jennifer Huget is a frequent contributor to the Health section.
© 2002 The Washington Post Company
--- End forwarded message ---

further on virus

2008-11-19 22:56:01

Mara is a lady and she sent me an email that my ISP is sending her messages that
the emails to me have been deleted because they contained WORM KLEZE in AOL
attachments.. She says she has not been generating the messages and we do not
have any connection with each other. I have emailed her back saying the virus
must be in her computer but I do not know how it is generating them and where my
email address was obtained. Please be advised, although it may not affect you.
Regards, Gordon

Hair loss with MTX

2008-11-19 13:36:59

Hi all.
I was on MTX for about a year. I got up to 17.5 mg per week with absolutely no
results. I did however, lose almost half of my hair. It did not come out in
clumps where I had bald spots but it filled the drain, tangled around my fingers
when washing it and got soooo thin. When I went off the MTX my hair thickened
again over time. For me MTX was the root of all evil.
Rae

leslie and your mom

2008-11-19 10:27:10

hi leslie,
my heart breaks for you, because right now you should have your mom's
support. as a mom, i know it is hard to watch your child suffer.
i am glad hubbie is doing better. i think you really need to distance
yourself from your mom. think of it in dear abbby's way. are you
better off having her in your life? i think you need to tell her,
mom, if you cannot be supportive of me, then do not call or come by.
and then do not take her calls, and don't let her in the house.
stand firm. as painful as it will be, you will probably be lesss
stressed than you are now. even if you don't get fired for dr's
appointments, you could get fired for getting too many personal
calls. my mom died 3 years ago, and i would give anything to have
her around to ask how i feel. my dad never asks, it doesn't occur
to him to ask. i am in ohio and he is in ga. i see him 2 times a year,
and maybe then he will ask how i feel.
i hope things get better for you, it is hard enough to deal with
this disease as it is.
susan in ohio

Hi, I'm Amy and I have PA

2008-11-19 01:04:03

<grin
Hi all,
I got diagnosed 4 weeks ago. Have started on Methotrexate and am
struggling with the tiredness and mouth sores that seemed to come
with it.
This group looks great!
I have yet to see any improvement but have only been on a treatment
(beyond ibuprofen) for 3 weeks so don't expect to see improvement yet.
Brief history:
I live in Ithaca, NY, USA. And work as a Computer Applications
Support Specialist to faculty and staff at the Hotel School (I don't
fix computers. I help faculty make slide shows, and staff manage
grades, etc.)
I eat healthily and exercise moderately. After being diagnosed with
endometriosis about 7 years ago, I had surgery and have avoided
hormone containing foods since then (commercial dairy, commercial
meats, tofu...)
I've been diagnosed with psoriasis about three times for very mild
outbreaks (scalp, breasts, feet) over my 38 years. Last year I
started to have foot pain and this fall I started having severe neck
pain. When it started to keep me from turning my head or walking much
and started moving into fingers and wrist, I hit the web and
diagnosed Inflamatory Arthritis such as RA. (So nice that the
doctor's refs. are on the web! ;) Aleve made me nauseous and
ibuprofen made a small improvement. When I FINALLY got into the
Rheumatologist (after shenanigans with my GP) (In the tiny town there
is only one Rheumatologist...) he immediately pinned it down to PA.
I'm proud of how active and effective I was figuring out what was
wrong, and self treating (i'm taking lots of B vits and stuff
recommended by the arthritis foundation...) and pushing through the
doctor maze to the right specialist. And I was relieved to feel like
he knew what to do so I could relax while the drugs worked...
People keep telling me I'm taking it well. And I was, until I got the
news that the tiredness is a side effect that I just need to live
with. I'm very not interested in being sore, decrepit AND tired.
Yeesh!
Anyway. This goaded me into posting and searching the archives and
starting to be more active, again. So much for feeling relieved and
relaxed!
Looking forward to making my life livable again...
Smiles,
Amy

Back problems...spondylosis

2008-11-18 21:54:30

I was first diagnoised with undifferent spondyloarthroaphy...
WHICH I am beginning to think really means that those of us who
were "undifferent" means we get to have like a sampling of them
all..a little irritable bowel...a little psoriasis...bum SI joints..
etc... and I get to have FMS/FMS too...and gout...and osteoarthritis..
like I told some other friends recently...I feel like I've won the
"crap" lottery...
The rheumy says my twisted wrist...and the pulling/soreness in knees
and ankles is psoriatic arthritis.. I used to have lots of tiny
dots of the dry scalie spots on my upper legs...but after taking
MTX..they finally went away..
I've had "unexplained" back problems for years..(i am almost 51)
I have for years thought the back pain was caused by SI
joints..which are deteriorating some.. My most recent back flare up
lasted for over 2 weeks... and was horrible...My butt swells out
really big..and I was unable to walk...and pain was in a new level
all by itself.. My rheumy refused to see me for it when I did not
respond to the steriod shot he gave me the week before... I thought I
would go insane with pain... HE did get me in to see an orthopedic
dr. who did x-rays...etc... and HE said the problem was in the
back...and SI joints were not bad enought to cause this type of
problem... In the last 15 mo..I have watched myself get very
crooked... My hip pokes far to the right...and got so far out this
last flare..I couldn't walk at all...
Orthopedic doc...diagnoised... LUMBAR SPONDYLOSIS caused by
spondyloarthropathy.... whick far as I know...simply means
arthritic changes to the low spine... no fusing yet...
Anyone else have a diagnoisis of lumbar spondylosis???? wonder if
it was the PA...that has caused this...since the disc/bones look
ok..not deteriorated...just moving close together and out of
alignment....?
I am now in physical therapy 3 days a week..to try to get it back in
alignment some.... PT said something about supposing to have a bend
of 70 degrees...and I only have a 20 degree movement... and thinks
there is no way she can help me get it all back since it has been
this way so long...
betty
[Meghan's Moderator Note: Betty, I would find a second rheumatologist and be
sure to get at least a 40 minute appointment to discuss your situation. When you
go in, make sure to bring a list of all your medications and the progression of
your disease. PA IS a spondylarthropathic arthritis, which means it causes
problems in the spine. So why is your rheumatologist and Orthopedic Surgeon
dreaming up new arthritis for you? Also, sometimes the joints and bones may not
show the exact cause of the pain and dysfunction. How can these doctors not
understand what "connective tissue arthritis" means? Gentle hugs and good luck!]