Rheumatic

Hi Maureen,
Thanks so much for the good luck-I really appreciate it and will need it!!
God Bless, Sue.
mstettmier <mstettmier@...
Hi Sue, I just wanted to tell you good luck tomorrow with the
lithotripsy. I will be thinking of you. Maureen

I have had two. One was an angiolypoma, and it really hurt. Actually, they
both hurt but the angiolypoma was the worst.
I had mine removed, and it is so much better. They were both on my outer
thigh area.
It was impossible to even let anything touch my leg before removal.
************************************** See what's new at http://www.aol.com

I have had Sjogrens Syndrome for as many years as I have had PA- I just was
not diagnosed. It has gotten worse over the years. It also has its own
cycle, so it unfortunately does not flare in conjunction with the PA
To confirm my diagnoses all those years ago, I had two tests. The first was
by the opthamologist. He examined the corneas and found small lesions from
long term dryness.
He performed a Schirmers Test by placing a tiny
piece of paper into my lower lid to measure the tear production.
I had to get a minor salivary gland biopsy as well and I had my ENT do that
in his office- he took a few very tiny white pin head size glands from my
lower gum area and I had a couple of stitches. By the time I had to get the
stitches out the pathology report was back that said I had chronic inflammation
of the minor salivary glands. I also had blood work I had an elevated sed
rate, CRT, etc. but no specific findings for Sjogrens in particular. But with
the positive Schirmers test and the positive biopsy not to mention the
miserable symptoms of very dry mouth, dry gritty eyes etc... I was considered a
firm diagnosis.
The doc put in silicone plugs in my lower punctum of both eyes in order to
limit the outflow of tears. In addition, I use a lot of preservative free
tears and I wear wrap around sun glasses whenever it is bright or windy.
As for the dry mouth- it was very important for me to use only alcohol free
products. Biotene mouthwash, Toms natural mouthwash, Biotene toothpaste. I
also brush at least three times a day because with a dry mouth it is a
breeding ground for bacteria and dental caries just keep on developing.
Sipping
all day on a sugar free beverage or a sugar free lozenge (make sure it is not
zorbitol either- Equal or sweet n low are okay) is a great way to keep your
mouth comfortable.
I highly recommend the Sjogrens Syndrome Foundation. Once you join, you
receive their incredibly informative newsletters that are jam packed with all
the latest info on SS and other related auto immune issues. They also sell a
book at cost that they have put together that is like a "bible" on
Sjogrens--explaining everything you could ever need to know about it in easily
explained
terms written by several well respected physicians from the US and abroad.
Michelle S
group founder

Hi Janet,
Olive oil is great to add in your diet, but you would have to take very high
amounts in order to get what the body really needs. It is best to take a
supplement of a pharmaceutical grade.
Kathryne
Professional member of the New York Academy of Sciences

Does anyone else have problems getting their enbrel from Caremark?
It is like pulling teeth. I always miss dosages when it is time to
refill prescription and they are just so hard to deal with. Sorry
I just had to vent and wanted to see if anyone else was experiencing
problems.
Joy

Hi Robert,
I hope you have continued good health!!
What prompted you to check if you were in remission??
I've been treating successfully with MTX for almost 3 years. I still
have patches of P and rarely a sore/stiff joint. I too have
wondered if I will always need to take MTX, but I haven't questioned
stopping with my rheumy. In truth, I do not want to chance going
back to my pre-MTX days. It was horrible and I am concerned that if I
go off MTX, and find out that I do still need it, it may not work as
well a second time. The prospect of taking a drug the rest of my
life was very absurd and daunting to me at first. Then, I decided I
was willing to try anything.
Just curious what brought you to your decision.
Stay Well,
David

Hi Linda,you might want to check out www.sarcinfo.com Yes, a special
version of AP works for Sarc

I have a question. I have had a pain "under" my calf muscle for the
last 6 weeks, and in the last week, I have developed a lot of pain
and stiffness in my quadracept. Is this something that is related to
PA? I have had problems with my achilles in the past but this is new
to me.
Thanks in advance for any insight.
Sandy

Kathy F, Fran, Jennifer, Jen, and Karen, thanks for the replies. :)
Not only do my mom and grampa have RA, but some of my other family
members on my mom's side have other autoimmune diseases. Also, about
three years ago I started getting itchy hives all over, and apparently
this is something that happens more often to people who are prone to
autoimmune diseases. I'm just curious as to how all these different
things are related genetically, but then again I'm sure they don't
even know all that yet.
I'm very glad to hear that some other people have gotten psoriasis
similar to mine. My doc seemed to think this was the weirdest thing
in the world and was flipping through all these books to try and
figure it out.
Also glad to know that my affected joints are typical of PA. Is it
like RA in terms of larger joints being affected as well is often
indicative of worse disease?
I'm also interested to hear what people's pain is like. Whenever you
read something about PA/RA it just says pain in the joints and just
goes right on to the next thing, but there's so many different ways
something can hurt. Oh and yes, I do have wrist involvement, so that
tendon/nerve thing makes sense. Before I'd been wondering why I was
getting those pains up my arm if it's just supposed to be pain in the
joint.
--Raina
[Editor's Note: Raina, if your doctor is ignorant about something as common as
the different types of psoriasis, can you get him to recommend a good
dermatologist? You need someone more knowledgeable than you are to assist you
in this fight against the disease and this doctor doesn't sound ready for that
role. I believe you said you have a rheumatologist appointment already
scheduled - that's a great step!. Ah, pain. My pain at times has been almost
unbearable, especially in my feet, hip, hands and wrists. Since I've been on
Humira, my pain has become much more manageable and I am more capable of doing
things that were becoming difficult(like feeding and dressing myself). I think
you have begun the most important part of living with a disease - becoming as
educated as you can while also working with good doctors. You're on your way to
getting better! Kathy F.]

Hi All,
Updating my note below, I've now been off Remicade completely for 3 months and
MTX for one month. All joints remain inflammation free.
I checked in with my doc. She said I took unnecessary risks by dropping the meds
without doing blood tests to make sure all was well (I stopped the meds on my
own without consulting with her), but since all is going fine, we agreed that I
can stay off the meds as long as the joints feel good.
Take care.
-Robert

Have any of you tried Flonase nasal spray? It has helped my nose a
lot. It was so dry that it was cracking, too, and spots of blood when
I tried to blow to clear the airway. But the worst part of the
dryness was that it stuck together at night making me breathe through
my mouth which then became so dry my tongue would get sore. My
primary doctor also gave me a sample of Evoxac (cevimeline HCL)
capsules that have helped the general dryness, including my eyes, to
the point my mouth waters enough to make my mouth drool at night. Now
I have to keep a soft wash cloth under my cheek to keep my pillow
dry. I was *very* skeptical until I tried it.
Ask your doctor about samples to see if it will work for you.
And no, I have not been diagnosed with Sjogren's but "sicca complex"
but as I see it, dry it dry, no matter what the DX may be.
patty in a cool Pineywoods of East Texas

Interesting! Could you tell us more about it? How did you come to hear of it?
Dolores
"rbarna dejazzd.com" <rbarna@...
LDM-100? In researching it is, it is supposed to be a plant based antibiotic.
Looks promising and wonder if anyone has had success with it?
Thanks
Roni

I ordered the book from Amazon and it wasn't much cheaper, $12.00 and some and
some cents. I did get free shipping, but I also ordered other books.
I am almost finished with her book and find it encouraging. She mentions some
things I had tried years ago and just stopped, but plan to go back to...such as
the magnets. They helped me tremendously with pain.
Roni

Some of these products work by boosting TNF which is a major component of
inflammation. My naturopath felt this would be inappropriate for me because
of RA.
Linda

Psoriasis Information Network2004: The Year in Review
The year 2004 marked a very busy year for HealthTalk as we brought you
regular updates on research and treatment news, saw the FDA approval of Enbrel
for
psoriasis, partnered with the National Psoriasis Foundation to bring you their
annual conference program, traveled the country with our live in-person
events, and provided help and guidance on a wide variety of quality-of-life
issues.
It also marked the launch of our Psoriasis Community message boards and live
moderated chats.As we prepare to move forward into 2005, let's take a brief
look back at the news and helpful programs and topics that shaped 2004.Here's a
great opportunity to review any programs you might have missed or refresh your
memory with details from our talks and chat transcripts. As you review this
information, you might want to write down any lingering questions you have and
submit them on our Ask the Doctor page.We'd also like to hear what HealthTalk
has meant to you over the past year. Did your symptoms seem to improve or
worsen? Have you made changes in your lifestyle that helped you or a family
member's condition? Did you move to a new medication you heard about in a
program?
Have you faced depression or problems at work? Did you try a therapeutic getaway
such as Soap Lake or a Dead Sea salt therapy? Have you made other changes
you'd like to share?Please send your insights, ideas and experiences to
stories@..., and we'll share them in a future newsletter. Note: We
have an
aggressive spam filter, so if you get a bounce message, do not be concerned --
we'll still receive the message.Here are the past year's highlights:Treatments
Traditional Therapies: Topicals
Traditional Therapies: Phototherapy
Traditional Therapies: Systemic Treatments
New Treatment Options
Relapses After Treatment Stops
New Oral Medications
Making Sense of Side Effects
Treatment with Diabetes, Lupus, CancerBiologics
Amevive
Enbrel
Raptiva
Remicade
How Biologics Work
How Effective Are Biologics?
New Biologics on the Horizon
Switching Biologics
What Do Biologics Cost?Triggers and Flares
Nail Psoriasis, Food Triggers
Infection, Skin Injury, Stress
Medication, Hormones, Diet
Weather, Allergens
Identifying Triggers, Controlling Flares
Why Legs Are Tough to Clear
Managing Stress at Work
Exercise and Plantar Psoriasis
Spontaneous RemissionHealth and Safety
Dangerous Drug Interactions
Psoriasis-Friendly Foods
Foods That Make Psoriasis Worse
Vitamins and Supplements
The Truth About Zinc
Diet Chat Q&A - Transcript
Psoriasis and Depression
Depression Chat Q&A - Transcript
Therapeutic Getaways
Psoriasis and HIV
What Is Psoriatic Arthritis?
Treating Psoriatic Arthritis
Joint Pain
Improving Your Quality of Life
The Toll on Work, Sex, Sleep
Managing Flares at Work
Work Chat Q&A - Transcript
The Effects of Aging
Psoriasis Statistics
A New View of Psoriasis
Psoriasis: More Than Skin Deep
The Genetic Connection
Psoriasis and Children
Risks for Other Conditions
Be Your Own Advocate
Choosing a Doctor, Preparing for Visits
Getting the Best Possible Care
Advocacy Chat Q&A - Transcript
Debunking Psoriasis Myths
Medicare Coverage
We also launched the Psoriasis Community last July, and your message posts
have been an important and helpful resource for many members living with
psoriasis and psoriatic arthritis. Here are some of the hot topics from the past
year:Biologics
Diet Tips
Scalp Care
Covering Medication Costs
Coping with Symptoms
Sea SaltsHappy New Year from all of us at HealthTalk! We look forward to
serving you in the coming year.
We wish you and your family the best of health!
HealthTalk Search
Our new Search tool helps you find a range of viewpoints from a number of
trusted sites (not just ours!). Search for answers.
Join the Conversation
You are not alone. Compare notes with other members in the psoriasis
community.
Program Archive
Did you miss a program? Listen to the latest replay or browse other programs
you may have missed.
Ask the Doctor
Each week, get answers to your questions on topics ranging from treatments
and side effects to lifestyle issues and caregiver concerns.
Disease Basics
Learn how psoriasis is diagnosed, how it progresses and how it's treated.
Find the facts.
Tell a Friend
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can keep them up-to-date too. And don't miss our discussions on other
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HealthTalk is located at 100 4th Avenue North, Suite 460, Seattle, WA 98109.

Hi Carolyn,
I am an advocate of networking and use networks of groups regularly
in my business. But, I can understand Kathy F.'s points.
It would be a huge task for someone to take on, and there would need
to be some financial commitment probably by more than just one person.
Networking can be great if you meet in person, however, I feel you
can get as much info in this forum.
Yes, it does lack the personal touch, but hopefully most folks have
busy enough lives interacting with their family, friends, co-workers
even if those folks aren't lucky enough to share our disease.;)
Stay Well,
David

the 1st 5 weeks on zith i had the worst pain i have ever had in 10 years
with RA. but now am doing better. i think it was herxing so i just took
pain killers and worked thru it. it's worth it.
monique

have you tried ordering mino from canada? have heard it's cheaper.
i use zith but only b/c i can no longer tolerate mino. mino worked great
for me for 3 years. it didn't sop working on RA but i didn't know re
probiotics/yeast/diet so i got very sick on it. doing better now with
anti-fungal, very strong probiotics, and diet.
monique

Carolyn,
While theoretically I think it would be wonderful to plan such a meet-up, on
a practical basis I think it would be very difficult to pull off. We would
need someone to volunteer to coordinate the whole thing - select a location,
visit hotels to ensure their suitability (handicapped accessible, etc. as we
would need a large number of special rooms). We would need to reserve
meeting rooms and hotels require payment in advance for that so someone would
have
to put money out upfront. Many people on this list have difficulty traveling
and would not be able to make the trip. Many people on this list are living
on limited incomes and could not afford it. Some of us are still working
and use our precious vacation days to spend time with family or to just rest.
I think, therefore, that many people would like to meet, but that translating
that into reality would be quite difficult. Perhaps I'm being a negative
nelly and others may feel quite differently.
Kathy F.
Okay, one more try. Actually, I'm shocked that I got zero feedback
on if anyone has considered attemtpting to possibly meet as a group,
maybe once a year. I will respect any opinions on the subject.
Until Then, Carolyn

Dear Raina,
First of all welcome to our group and I love your nameso pretty and
different. Im sorry about the PA or RA or which ever one it turns out to
be. You are in a rough spot right nowwaiting for your rheumy appointment
and having a million questions in the meantime. Im no expert on any of
this, but you do pick up something after awhile from being with this group.
By the way, the group is just a wonderful place full of knowledgeable
people. As far as your first question, my doctor told me RA and PA are
definitely genetic. My Aunt and sister both have RA, though my sister has
been in remission for almost 30 yearsits really amazing. My Dad had PA,
at least I think he did, but no one ever put it all together until after he
passed away. My RF factor was negative and my ESR was low, but yet I
still have a full-blown case of both RA and PA. (At least thats what my
latest doctor believes) One thing that is frustrating with these diseases
is there arent any easy answers. No positive way to know you have the
disease, no sure way to treat it, no medications without serious side
effectsand the list goes on. I think the unknown with this problem makes
it that much harder on all of us.
As far as the way you described your psoriasis, I have to say Ive had that
exact thing happen to me from time to time. I have the guttate form, which
looks like small cigarette burns all over my arms and legsreally
attractive, but not as bad as some people have it. About 6 months ago, I
had the exact thing happen with my legs. Small fluid filled bumps that
burst and itched like mad, but left me with small scabs like psoriasis.
Luckily, Ive only had that happen to me once. Normally, mine is just like
a said, red round-shaped bumps that go between itching and stinging all the
time. So when it comes to psoriasis I think just about anything is
considered normal.
I also have the ridged in my nails and I have to say that really bothers me.
Also since this all started I have trouble with my toes and my toenails aren
t the same anymore. Instead of growing out they seem to grow up, if that
makes any sense. I keep them short so its not a big deal, but its obvious
my toes and fingers are very much involved. For me my first problem was
with my jaw. By the time they figured out I had PA or RA, my right jaw
joint was almost totally gone. So Im left dealing with a lot of facial
pain and spasms from the slow diagnosis.
Now I have PA or RA in my fingers, wrists, shoulders, elbows, cervical and
lumbar spinal areas, knees and toes. I think a lot of time it starts out in
the hands and feet and moves on. I have more trouble with my toes than I do
my hands as far as pain and cramping goes.
As far as tendonitis is concerned, I also have fibromyalgia, so its hard to
tell where the muscles end and the tendons start. It is almost easier to
say, it just hurts everywherelol.
For your first appointment, I would take a pad of paper and write out the
list of questions you have. Ask your doctor how many PA patients he
treats, and if you have RA what is his success rate on dealing with their
pain and slowing down the disease. My doctors have told me several times
that it doesnt matter if I have RA and PA or just PA. They are treated the
same way and he seems to think its no important. Find out about what
medications he recommends and which one his patients have had the most
success with. Its also important to ask him about pain control and if he
recommends a pain clinic if the pain becomes too severe. I know that you
have a lot of questions for the doctor and being your first time, I would
ask as many as I could. Normally doctors like to keep it to 3-4 questions a
visit, but of course, they dont always get what they wantlol.
This can be a really frustrating disease. Its taken me in the past 5 years
from working full time, running a household and taking care of my children,
to not being able to drive or work, using a wheelchair out of the house, and
a cane or walker at home. I am only 49 and a lot of days I feel closer to
90, but I still mange to keep my spirits up. It isnt easy and a lot of
days Im bored to tears or just lonely for companionship. I also just went
through the empty nest problem as both my girls have moved on and one is in
college and the other just got out.
I dont want this to be negative, so remember that this disease affects all
of us differently. Some people dont even realize they even have PA and
others are almost totally disabled. I hope you find some answers. Youre
off to a good start with this group. If you have any questions or just want
to talk feel free to email me at home. fran@...
<mailto:fran@...
another reason this group is so popular. Take care and good luck. Love,
Fran
*
Hi...I'm new here, although I've been lurking for a while. My name is
Raina. I'm 25 and live in Columbia, Missouri. I've had varying
symptoms for about a year and am currently trying to get a diagnosis
of either PA or RA, (It takes a long time to get a rheumatology
appointment around here.) I've got a few questions I was wondering if
anyone could answer.
1) My mom was diagnosed with RA in her 30's, and her dad had it also.
I know it's genetic, but would my family history also increase my
chances of having PA? (So far my RF factor has been negative, my ESR
has been elevated, and I keep having outbreaks of skin problems, which
is why I think it's PA.)
2) Whenever I read about psoriasis, it talks only about scaly
patches. However, when I have a skin outbreak it starts off with tiny
fluid filled bubbles on my hands and feet, which eventually pop and
leave scaly peeling patches behind. (Sorry if this is too gross. :) )
I also have pitting on my fingernails. My regular doc thought this
was psoriasis, but I've never read about the little blistery things
before. Anyone else had this?
3) I started out with joint pain in my hands and feet, and recently
I've been having joint pain in my hips and knees as well. Is this a
normal set of affected joints for PA?
4) I think I read somewhere that PA affects tendons and such as well.
I've been having pain, for instance, running from my wrist about
halfway up the bottom of my lower arm and I thought this might be from
the tendon. Does that sound likely.
Thanks so much for your time. :) I want to go to the doc next month
as informed as I can be.
--Raina
.

Another good book is "The Inflammation Zone" by Dr. Barry Sears. ISBN #
0-06-059546-9
I found my copy at the library! Good luck! Dolores
melanie smith <mandmsmithfamily@...
There are many who feel an autoimmune response is due to your hormones
being out of balance, so this is very much on topic. A good book to read is What
Your Doctor May Not Tell You About Pre-menopause by John R. Lee.

Im 28, have had P since teens and PA diagnosed around 25. I believe
I had longer it took forever to figure it out. I currently take 50ml
once a week and have done 4 shot in a row then I had a week off due
to insurance crap,I am grateful for that crap though:) Tomorrow will
be shot number 3 and I must say I notice and impovement in my skin
my elbow and knees are amazing, others have noticed. My nails show
improvemment but the I see it getting even better if it is all ready
at this level. still had pain and stiffness hoping by months 6 ill
notice alot of impovement.Cross my fingers.It has been a long
strange trip with dealing with the pain and people thinking im
crazy. Well I have a bit of that too, how boring if not. I work two
jobs that my hands and feet are needed. Trying to finish school.Will
see what the cards deal this year.I hope everyone has a blest year:)
Jennifer

Rose, I used Zithro form my PM. I do not have RA but
the Zithro worked well for the PM. I used it because
it is easier for my system to tolerate. Only had to
take 250 mgs three days per week then taper down from
there over a three year period. I have been off all
treatment for the past 4 months and (knock on
wood)still doing very well.
Hope that this helps,
Robbin

Robbin

There are many who feel an autoimmune response is due to your hormones being out
of balance, so this is very much on topic. A good book to read is What Your
Doctor May Not Tell You About Pre-menopause by John R. Lee.

I have R.A. and have been taking mino for a month now i find it to be very
expensive and would like to know if others from the group are using a gerneric
Zithro or Doxy for their therapy.
Thank-You Rose

Answer to age when diagnosed with PA - I am 57 now but was diagnosed when I
was in my mid 30's. I was told when I was 17 that I had arthritis after
numerous broken bones. As a foster child / adoptee, I never had any history
from biological families. When I had my children, my one son broke bones
just as easy as I did. Now he is 34 and starting, unfortunately, to show
some signs of PA although he is as stubborn as the day is long and refuses
to get tested. He's a grown man and must make his own choices.
As far as meds go, I've taken them all I think. And, the body does
recalculate on a regular basis and requires change of med or increased
dosage.
Currently I am on Enbrel but my employer has refused to allow me to use my
med insurance that I PAY for and the mfg. is in an appeal process. I'm
waiting to hear what will happen. I've been going for PT twice a week but
that is expensive at $160.00 a month co pay on top of the other meds - MTX,
folic acid, prevacid, bextra, bp med, water med, flexoril and effexor.
Nanc

From Pete
With psoriasis, the thicker, larger diameter sores, red edged, dry
in the center type can leave scars where hair thins or does not grow
or come back, just by being there. You can also create the scars by
scratching or debriding too much, or just by using ointment on a
bandade and leaving it there wet, until a crater forms. (Not
recommended). Sometimes the scars can become unpigmented also, or
become sun sensitive.
I have always been aggressive in treating the lesions, using
betamesasone ointment (not creme) under a bandade or dressing for
larger ones, debriding the dead skin(if you draw blood that was too
far), and using bath oil, Balnetar, and coal tar oil, and sunlamp
treatments.
When you get it in the entrance to ears and nose, that is where you
use the sunlamp and put a towel or washrag to cover the adjacent
healthy skin, a bedsheet is too thin. You experiment to get a slight
pink on the lesions, but not a burn so that it is painful. The idea
is the same as the ointment, slow down the lesion growth (killing
the cells) but not killing off the healthy skin or starting an
infection or inflammation. FOR ALL LESIONS, the theory is the same
as radiation therapy, the fast growing cells are more vunerable and
sensitive to damage than regular skin. Of course, sunlamp light does
not penetrate the thicker lesions, that is why you use sandpaper or
nail files and the Dr scholl type abrasives to get rid of the
nonperfused dead cells, so the fast growing overperfused reddish
sore can be exposed to the ointment and light. Again, if you draw
blood , that is too much skin removal. I debride dry skin, not wet
or recently showered. You should be able to feel when you get close
to the perfused skin. Coal tar oil increases sun sensitivity and
seems to reduce perfusion without sun.
Coal tar and sun increase the risk of skin cancer.
Hair can get in the way. When my scalp gets bad, I shave my head and
get tanned. Scraping the sores without being able to see them is a
good way to break the skin and get small, slow to heal infections.
I alternate coal tar mixed with Balnetar and Valisone type
ointment on scalp lesions after work, shower in the Am and use the
lotion (clear liquid betamethasone valerate)on scalp during the day
after washing in the morning.
I have good results on the scaly lesions with red edges. The wet
blister type lesions can get better or worse with sun, the small
hard wart-like not well perfused bumps are more resistant to the
above regimen.
So every bad outbreak, I get bald to save my hair. I have been using
this regimen for 25 years, and at age 54 have better hair than my
brother or son. My son has lost almost all his hair to the sores,
and lives in fear of side effects instead. I would rather die
fighting than just give up or let nature take its course. Nature is
not always kind, I prefer risk and discomfort to conceding any
ground to the disease.
I trace my ANCESTRY back to Abraham, the tribes of Dan and Judah
recur in my bloodline. Psoriasis and Pagets are family traits in the
larger family tree.
I have had RINGING IN MY EARS for years. Some is due to the various
medications, some to trauma. The lesions in the ear canal can be
right against the eardrum. Sun does not get there, and topical
medicating is blind, so systemic steroids, enbrel, and methotrexate
are better for lesions in tight places.
Pete from Baltimore

Okay, one more try. Actually, I'm shocked that I got zero feedback
on if anyone has considered attemtpting to possibly meet as a group,
maybe once a year. I will respect any opinions on the subject.
Until Then, Carolyn

Hi, Im Fran Mishler and I live in Port Richey, Florida. I was diagnosed
with PA in 2002, RA in 2002, and Fibromyalgia in 1991. Im going to be 50
this June, and I still cant believe it. My body feels about 150, but
inside I still feel 16. Take care and hope you have a pain free day. Love,
Fran

If you are looking to slash all your expenses by 75% then you found
the right place! This is how the television show began. The company
has a website at http://theshopperadvantage.com I thought it was
very interesting and decided to check it out. I am very skeptical by
nature so the first thing I did was check out the company. I
contacted the Better Business Bureau and found that the company has
had no complaints lodged against them, I also contacted Paypal who
has verified this company. They told me that they verified the
company's licenses, bank accounts and other paperwork indicating to
them that the company is legitimate. Then I started asking co-workers
and friends about this program and to my surprise 6 out of the 10
people that I spoke with were already using this program. They told
me how pleased they were with it and how much money they had saved
and are currently saving. So I decided to sign up for this program on
9/17/07. On 9/21/07 I received my complete membership package and
the fun began. Using their program and the free lifetime membership
that it includes I went to the supermarket ready to make a killing.
The cashier rang up my grocery bill and it came out to $239.87 then
using this program, I saved $223.38 - my final bill was only 16.49!
The cashier wasn't the only one shocked! I then joined their
Wholesale Mall this place is full of amazing items at great prices.
I am almost done with my Christmas shopping and I only spent a
fraction of what I did last year!

I'm getting ready to visit a new rheumy next month, she's a
replacement for my last one who just retired. I have mixed feelings
as I hate "breaking in" new doctors.
In the past I've had doctors who get huffy when I tell them what's
wrong. I've been confronted with the attitude of "I'm the doctor,
I'll you whats wrong". My attitude has always been, "I've been
dealing with for 20 years, I KNOW what's wrong".
My last two doctors have been great. Whenever I would go in they'd
ask me whats going on. I could always say, well, I'm pretty sure my
sed rate's up, there's fluid in such and such joints, etc. And they
were always like, ok, lets get it sorted then. They understood I knew
more about my body then they did.
Now I'm faced with starting over, and I have no idea what she's like.
I'm really hoping I don't have to deal with the typical MD ego.
Have any of you ever experienced this? Do you ever get tired of
doctors who are resistant to listening to you because you know the
jargon and know the disease?

Jane,
Having survived cancer twice, I'm here to say... Get it checked out. In my
case both times it didn't appear to be anything extra ordinary (just not the
norm). Several year later, I developed a lump in my arm. Knowing my history
and propensity for cancer I was knocking on the doc's door the next day. He
wasn't sure and sent me to a surgeon. I was fine and I felt finer after seeing
him. He took one look felt it and declared it "no problem." I still have the
lump and I check it monthly. It's my life and I'm in charge. If a doctor EVER
TELL ME IT'S A FRIVOLOUS VISIT, IT WILL BE THE LAST TIME HE TALKS TO ME.
My 2 cents. Go to the doc. Depending on what he says you can then decide if
you need to start worrying. In the mean time, enjoy life.
Sandy swOhio
janekarsten <janekarsten@...
Hi everyone,
There's been a bit of discussion lately on P in the nostrils. While
I've got something similar, I don't think that it's P but more likely
dryness caused from Sjogrens. I had a crack at the corner of my mouth
for several weeks that finally cleared up with cortisone cream, but I
don't think putting that up my nose is advisable. My family doctor
has had me putting vaseline on a q-tip into my nostrils at night, but
I've been doing this since October with no improvement. The cracks
have started moving to the front of my nose and are visible, as a
kind co-worker pointed out today...I'm so attractive now :)
I was hoping that someone could have responded to my question
regarding Sjogrens that I posted a couple weeks ago, but there were
no takers. My parotid glands have been causing me a bit of misery for
the past few months now. The first bite of anything, even bread,
causes these glands to react as if I'd bitten into a dill pickle. The
right one has now hardened and now today the left is sore, swollen
and painful to the touch...I resemble a chipmunk now. I've been
applying heat in the evenings to calm them down enough to get some
rest, but it's getting increasingly more uncomfortable. Knowing that
I have Sjogrens and this is probably the natural course of
progression, is this something that I should go back to my m.d. about
or wait until my rheumy appointment on 2/16?
I've also had various lymph glands swelling in my neck. They get
sore, then shrink, and harden before disappearing after 2-3 weeks.
I've been on Humira for almost a year, and had to stop Enbrel before
that due in part to swollen lymph glands. Given that my maternal
grandmother's demise was due to lymphona cancer, am I putting myself
at an increased risk by taking Humira? Is lymph node swelling also
something I should be seeking medical advise for whenever it happens,
or do I ride it out knowing that it's the course of this disease?
Anyone out there have any thoughts on this? I'd appreciate your input.
warm blessings,
jane (chipmunk)

My ANA is elevated too. Are you on any meds? I am taking Plaquenil for a year
now. It has brought huge relief.
Daniel
tickmeister1 <wtptoo@...
Has anyone else experienced when their ANA levels are low they feel
terrible and have bad symptoms of the autoimmune illness such as
inflammation, pain and skin symptoms? Yet when the ANA is sky high
they feel better? I am going through this now where my ANA is reading
negative currently, but when it was over 2,000 I felt much better and
was able to be more active and have lower pain level.
This is crazy. I do not understand what is going on.
Angela
To unsubscribe, email: rheumatic-unsubscribe@egroups.com

Hiya,
My symtpoms are very similar to yours. I have the scaly patches as well as
really small blister-like ones. I've had doctors fight over whether I really
have P or excema. Course, I've had doctor's tell me there's no such thing as PA,
go figure.
My worst joints right now are the knees and hips, although all my joints are
affected (even my jaw, I've worn my ball joints down to spikes).
My PA is genetic and they've discovered the HLA-B27 gene. I'm the only one in my
family to show signs of the arthritis however.
I also have the pitting on my nails, which was one of the first things that
clued my then-pediatrician to possible arthritis. It took 4 years to be
diagnosed as arthritic, and another 1-2 to diagnose PA.
I have the lesions on my arms, legs, behind the ears, had it in my scalp, and my
"debut" of P was in my belly button, of all places. I've never had it on my
elbows which seems to be the most popular place for it, which has always seemed
odd!
Jen
rainabear79 <raina@...
Hi...I'm new here, although I've been lurking for a while. My name is
Raina. I'm 25 and live in Columbia, Missouri. I've had varying
symptoms for about a year and am currently trying to get a diagnosis
of either PA or RA, (It takes a long time to get a rheumatology
appointment around here.) I've got a few questions I was wondering if
anyone could answer.
1) My mom was diagnosed with RA in her 30's, and her dad had it also.
I know it's genetic, but would my family history also increase my
chances of having PA? (So far my RF factor has been negative, my ESR
has been elevated, and I keep having outbreaks of skin problems, which
is why I think it's PA.)
2) Whenever I read about psoriasis, it talks only about scaly
patches. However, when I have a skin outbreak it starts off with tiny
fluid filled bubbles on my hands and feet, which eventually pop and
leave scaly peeling patches behind. (Sorry if this is too gross. :) )
I also have pitting on my fingernails. My regular doc thought this
was psoriasis, but I've never read about the little blistery things
before. Anyone else had this?
3) I started out with joint pain in my hands and feet, and recently
I've been having joint pain in my hips and knees as well. Is this a
normal set of affected joints for PA?
4) I think I read somewhere that PA affects tendons and such as well.
I've been having pain, for instance, running from my wrist about
halfway up the bottom of my lower arm and I thought this might be from
the tendon. Does that sound likely.
Thanks so much for your time. :) I want to go to the doc next month
as informed as I can be.
--Raina

I would love to attend the doctor chat but I cannot register anyone on the web
page.
Please let me know as to what I should do.
Thanks,
Mary.

Hello. I have just joined this group. Iam a 40year old women. Last
jan. I went to see a doctor for what I thought was the flu. They
told me that they could do nothing since for the flu. They sent me
home with the usual advice. Plenty of fluids and rest. Sadly they
were wrong. I had strep. But nobody realized this until my ancles
swelled so much I could hardly walk. I decided this was getting and
again went to the doctors. This time they were conviced it was a
thyroid problem. I instited on going to a specialist and he told me
that no way was this thyroid and did a series of test. I came back
positive for strep. I had to fight the intial doctor to get anything
done. He ran the test again and when they saw the strep had me rush
back for a shot of penecullin. I then started seeing a
rheumatologist and a cardiologist. I am much better now but I had to
go through a lot of pain. I was very swollen at times and could
barely walk. At times my wrists were so swollen I could not urn a
key or start my car. My knees, anckles and wrists were all swollen.
I was treated first with high dosage asprin but had to stop once they
realized this was affectin my liver function. I had to go on
prolonged prednisone therapy which I really wanted to avoid. Now I
am strep free and my ekg is normal. Had concerns about that for
awhile. But I am on penecillin for life. I now wonder what this has
done to my immune system. Is it conpromised for life. What are the
effects of long term antibiotic therapy? I have six year old son and
every time he comes home with some bug we worry about him and about
me. We are always being tested for strep. Has anybody had anything
similar to this. I am very luck I know but I still worry about the
longterm reprecussions of this experience. Any info is welcome.
Laura

Didn't know there was one... Hmmm...
Karen (idaho)

Dear Group,
It seems that our group is drifting away from its core purpose, which
is share information related to rheumatic diseases. How can we
reestablish this focus?
Yes, many of us have other health issues as well, but is this group
the right forum?
Sincerely, Harald

hello raina,
i will preface this by saying you definitely sound like you have
pa... however it is also possible to have both - only a
rheumatologist can tell you for sure.
with respect to 2), what you have described on your hands and feet
sounds exactly like the type of psoriasis i have. it is
called "plantar palmar pustular psoriasis" (plantar meaning feet, and
palmar meaning hands). it is not nearly as common as plaque
psoriasis, which i believe accounts for approximately 80% of ps
patients. there are, i believe, 5 different types of psoriasis. the
internet has some very good information on the different types. with
respect to tendon pain, i have this as well and i believe many others
also suffer from this. i have the added 'joy' of also suffering with
fibromyalgia, which makes i difficult at times, when dealing with
tendon pain, to know exactly what causes it. re-reading your
message, you mentioned pain running up the inside of your arms. my
question to you is, do you have wrist involvement? i very frequently
get pulsating shooting pains running up the inside of my arms and
have been told that it is caused by inflammation in the wrist area,
putting pressure on the nerves. it is, i believe, very similar to
carpal tunnel syndrome, however i do not experience numbing in my
fingers. typing very much also exaccerbates it considerably. ice
seems to help.
i hope the above helps. know that you are not alone and we are here
for you, anytime. you are taking the correct approach in trying to
educate yourself as much as possible before seeing the rheumatologist.
good luck raina, and please keep in touch,
best, karen

Teresa,
I don't know a lot about it, but I had mine checked and my level was normal.
I've heard people rave about how much better they felt after having theirs
checked and going on therapy for it. Hopefully, this will give you some
improvement in your symptoms. It's one more piece of the puzzle...
Emma
**************************************
See what's new at
http://www.aol.com

---
Hi Mary Jane,
I still take the two of the 25 mg-you can get it (Enbrel) into one
syringe so you will only need one pin prick-the nurse showed my
daughter and me-she said she didn't understand why other nurses in
Drs. offices don't show their patients so they didn't need to use
both shots-you just need to put the Enbrel into the same syringe.
Hope this helps. I was happy. God Bless, Sue.

I also have found tanning to help. I first noticed it when I got
sunburned really bad one time. After the burn went away and I went
into a tan, I noticed my skin looked so much better. I then began to
go to tanning salons.
I've sometimes worried about doing due to the chance of skin cancer,
but tanning has helped much more than any of the ointments. Now I
just wish I could get rid of the ugly scars and not be embarrassed to
wear shorts in public.
Jen

Why is the PA chat room always empty?

Hi...I'm new here, although I've been lurking for a while. My name is
Raina. I'm 25 and live in Columbia, Missouri. I've had varying
symptoms for about a year and am currently trying to get a diagnosis
of either PA or RA, (It takes a long time to get a rheumatology
appointment around here.) I've got a few questions I was wondering if
anyone could answer.
1) My mom was diagnosed with RA in her 30's, and her dad had it also.
I know it's genetic, but would my family history also increase my
chances of having PA? (So far my RF factor has been negative, my ESR
has been elevated, and I keep having outbreaks of skin problems, which
is why I think it's PA.)
2) Whenever I read about psoriasis, it talks only about scaly
patches. However, when I have a skin outbreak it starts off with tiny
fluid filled bubbles on my hands and feet, which eventually pop and
leave scaly peeling patches behind. (Sorry if this is too gross. :) )
I also have pitting on my fingernails. My regular doc thought this
was psoriasis, but I've never read about the little blistery things
before. Anyone else had this?
3) I started out with joint pain in my hands and feet, and recently
I've been having joint pain in my hips and knees as well. Is this a
normal set of affected joints for PA?
4) I think I read somewhere that PA affects tendons and such as well.
I've been having pain, for instance, running from my wrist about
halfway up the bottom of my lower arm and I thought this might be from
the tendon. Does that sound likely.
Thanks so much for your time. :) I want to go to the doc next month
as informed as I can be.
--Raina

I'm going to be 40 next month, I was diagnosed with fibromyalgia and PA in
2000. Thinking back though, I have had many symptoms, even as a child, just
never had the pieces put together.
Sarah D in MN

Hi everyone,
There's been a bit of discussion lately on P in the nostrils. While
I've got something similar, I don't think that it's P but more likely
dryness caused from Sjogrens. I had a crack at the corner of my mouth
for several weeks that finally cleared up with cortisone cream, but I
don't think putting that up my nose is advisable. My family doctor
has had me putting vaseline on a q-tip into my nostrils at night, but
I've been doing this since October with no improvement. The cracks
have started moving to the front of my nose and are visible, as a
kind co-worker pointed out today...I'm so attractive now :)
I was hoping that someone could have responded to my question
regarding Sjogrens that I posted a couple weeks ago, but there were
no takers. My parotid glands have been causing me a bit of misery for
the past few months now. The first bite of anything, even bread,
causes these glands to react as if I'd bitten into a dill pickle. The
right one has now hardened and now today the left is sore, swollen
and painful to the touch...I resemble a chipmunk now. I've been
applying heat in the evenings to calm them down enough to get some
rest, but it's getting increasingly more uncomfortable. Knowing that
I have Sjogrens and this is probably the natural course of
progression, is this something that I should go back to my m.d. about
or wait until my rheumy appointment on 2/16?
I've also had various lymph glands swelling in my neck. They get
sore, then shrink, and harden before disappearing after 2-3 weeks.
I've been on Humira for almost a year, and had to stop Enbrel before
that due in part to swollen lymph glands. Given that my maternal
grandmother's demise was due to lymphona cancer, am I putting myself
at an increased risk by taking Humira? Is lymph node swelling also
something I should be seeking medical advise for whenever it happens,
or do I ride it out knowing that it's the course of this disease?
Anyone out there have any thoughts on this? I'd appreciate your input.
warm blessings,
jane (chipmunk)

That is a good question! I am not for sure to tell you the truth. All
I know is they were Jews. They came from germany, but alot of
Sephardic married German Lutherans to come over here and I personally
think that is what happened to us because my Mom`s dad side were
Lutheran, so maybe there is connection here. thanks for your relpy!

hello micky, dear friend,
i was wondering what you were up to. thanks so much for such a newsy
and delightful (as always) message... please take care - i can well
imagine, after plastering 6 rooms, that you'd be feeling the
affects.... silly man :)
please don't be gone for so long next time.... ok?
love, karen

My name is Jennifer Im 28 mother of a soon to be 8 year old. I work
two jobs to try to get back in school, but what you feel like crap
what am I to do. My marriage had problems but I for sure not knowing
why I hurt did help. I have had P since my teens and have had PA
diagnosed at 25 but my signs indect longer than that. I noticed my
feet started looking different well my toes and no one believed me
forever it seems. I still think they dont believe that one mornig I
feel ok and that next a train hit me.That was last week my feet
killed.
I started the Enbrel on my seventh shot on thursday, i had a two
week break in between do to mail order bologona. I take 50ml once,
at my last appointment we talked about increasing but we are going
to wait. I notice inprovement on my ellowbows it is amazing. My toes
and finger nails are starting to look alot better. I have felt dizzy
and tired but I m on so much crap I never know what is the true one.
I feel nausea always . It like be in pain or take stuff your belly
does like. My belly has always been iffy.But i keep everything
crossed that it will get better:)

Hi Julia - I've experienced the ill effects of PA for
years but was only diagnoised in 2003 after many
doctors telling me that it MUST be in my head since
they didn't know what it was. After I broke out in P
for the first time in mid 2003 the pieces fell in
place for them and I was quickly diagnoised with PA.
When I broke our with P I was broke out for many
months, 75% of my body, and it was terrible. I used
every ointment that the derm. could think of. 30 lbs.
later from the cortisone the doctor told me to tan
every other day. What a miricle. I quit the
ointments and have never touched them again. I bought
a second-hand tanning bed and got rid of the P but not
without leaving many scares. I've been able to
control P since. As for PA I haven't seen a lot of
benefit from it. How bad is your joint damage and are
you taking Enbrel, Remicade, etc.? I'm in pretty bad
shape and seem to be getting worse quickly and I'm not
taking anythink but pain meds. My doctor, an
internist,...well I'm not going to speak ill right now
but he has refered me to a rhemy in a larger town. I
am anxious for my February 7th appointment. But I'm
also terrified also because of the times I've gone to
the doctor to be told that it's all in my head.

Shalom
Theoretically, PA is not a rheumetism. Rheumetoid arthritis is caused by a
lacking tumor neucrosis factor (TNF). PA is not caused by this, yet it does
react well to the new "biologic" medications (Enbrel, Remicade, Humira). I have
been on all three- unlike most RA patients, my rheumetologists and I are finding
that PA patients build up a resistance to the different bioloicals fairly
quickly. For me, that is about every year or two. I find myself switching
meds, increasing dosages, all sorts of fun. Also, I can literally see when my
arthritis is about to go into a flare-up, because my skin gets worse before my
joints.
Anyway, a quick question, Pamela. Are you Sephardic? My mother's side is and
we have a clear genetic line for the disease. I have spoken with researchers at
Wake Forest University (they're doing quite a bit of Psoriasis research) and
there's no definitive link to Sephards vs. Ashkenasim, but there seem to be
patterns.
Well, take care. Rest that back!
-Larry Lichtenfeld
Pamela Kirstine <sapphira_dot_com@...
Hi, I have been diagnosed as having psoriatic arthritis by my
rheumatologist. Is this a type of rheumatism? My back is quite bad
and my neck. am on disabiltity because of it. Oh yeah, are there any
fellow Jews on here? Shalom and Layla tov!
Sapphira

Yes, I know what you mean. I have patches of psoriasis in my scalp
too. My hair has thinned quite a bit in the last three years. My
dermatologist said the psoriasis in the scalp can affect the hair
growth in your scalp. I have been asking different hairstylists if my
hair
seems thin to them. They always say, "No it's normal." I have a
definite line where my hair parts in the middle, you can see my
thinning scalp. This is coming from a person who used to have very
thick hair as a younger person and didn't know how lucky she was.
I've had psoriasis 21 years and was diagnosed with PA in November. My
dermatologist prescribed Clobex shampoo that I put on my scalp twice a
week for two weeks to see how things go. The instructions of the
Clobex say not to use it more than 4 weeks. I also got a prescription
of Clobex lotion for my psoriasis patches on my skin. Has anyone elso
heard of Clobex? The Clobex lotion has worked wonders on my skin. It
has been a blessing!! I've had some psoriasis patches on my arms
completely clear up from the Clobex.
Thanks!
Rhonda

Hi - I am new to this site - I am 37 and have had arthritis since I
was around 20 - I was diagnosed with PA when I was 34. I have found
that the sundbed not only helps my skin but works great with all of
my joint pain - it has been my little miracle - to getting through
some bad pain - without having to take a lot of medication. Has any
one else found that this works for them???

Good evening to everybody
Just caught up with all the posts that I have missed recently due to having
my computer off line while we had the plasterers in doing the whole house!
That and the fact that I have been playing Call of Duty for two weeks non
stop on my Playstation (what an addictive game) after blitzing my way
through France, Holland, Russia, Poland and Germany I finally ended up at
Hitler's liar in Berlin and won the day!
Glad to see all the regulars are still here and that we have a few new faces
in the group. I extend a warm welcome to one and all.
I see a lot of people are on the road with Enbrel and I hope they all have
some success with it however small. Glad to see Fran has recovered alot and
is back busily posting again.
To Carolyn who asked about the UK system I would just say that it's not as
cutting edge as in the states and they are taking there time to catch up
with all the new biologics, but they are slowly getting there. Also on your
point about no blokes being here due to Women talk I must say that we are
well used to that kind of behaviour by this group, but people like me, Ron
and Martin are far too gentlemanly to complain or should I say we fear for
our life's if we said anything about it! lol
My wife is Irish and she is also a nurse so she can be a bit fiery now and
again! (To say the least) all those Celtic genes I suppose! Lol. Cork is a
lovely part of the world as is all of Ireland and we have done many tours
around the local pubs in Dublin, Kerry and Kilkenny to name a few! Always a
great criac!
I'm currently still going through a flare, but I swear it's to do with all
the stripping we did (not that kind) of the walls before the plasterer's
came! (six rooms in total !) Not my idea of fun I can tell you, and all DIY
has now been banned from our house until further notice!
Hope to catch up with everyone soon
Micky
London

I was wondering how the psorisis affects the hair? I have the plaque
patches on my scalp so I know that part but was wondering if my hair
thinning could be from the p or pa? I have always had fine hair and
alot of it but over the last three years or so it has become so thin
and brittle. I try all kinds of thinning hair shampoos to no avail.
Thanks for any information. Susie

Hi, I have been diagnosed as having psoriatic arthritis by my
rheumatologist. Is this a type of rheumatism? My back is quite bad
and my neck. am on disabiltity because of it. Oh yeah, are there any
fellow Jews on here? Shalom and Layla tov!
Sapphira

Hi everyone: It's sassy here, AKA: Carolyn I don't know what to
think after my Dr's visit. It doesn't make me feel any better that
he doesn't know what to think of my current symptoms either. He now
even questions my diagnosis of PA. Of course, he ordered lots of
blood work, so we'll just have to see. He said that if it is PA, he
has never seeen a case like mine. He validated me in taking me
serious as he knows that when I take time off from work, something
must be cooking. He did consider Rynard's syndrome in that my hands
and feet are very cold and slightly blue. He's concerned about the
fatigue and is open to the consideration for Provigil pending lab
work results. I can't see my beloved former dermmy as I had to
convert form a PPO to HMO because being billed 20% of everything was
killing me nad my beloved dermy does not take HMO's. In the mean
time a strong pain Rx. Also, Cardizem Rx to hopefully get some
blood flow back to my icy exremeties. The rheummy even brought in
his collegue and
they are both still left questioning this puzzle. So, now I think
that surely I should be referred to a Dr. at NASA, as clearly, some
alien life form has invaded my body! Love, Carolyn

---
Hi Ks Di,
With the procedure I'm having with the Kidney stones being broke up-I
still have a stent/stint (not sure about the spelling) in that was
put in during a cysto. that was done to remove my latest painful
kidney stone- anyhow...with the stent in they will pass through that
after they are broken up (hopefully anyhow!). Just having them out
will be great after what I've been through. I don't know if that is
what you were talking about that they still needed to come out.
God Bless, Sue.

---
Hi Maureen,
Sorry it has taken me so long to answer back-I've have had computer
problems and had to have it in the shop. Thanks so much for the
info. I am scared to death-after all I've been through with
everything I am really afraid of this procedure!! My husband went
with me to get the paperwork done and he asked a bunch of questions
about pain, etc. The lady told us that it feels like a hard hit to
the kidney and I would be sore for a few days-my husband asks-"is it
like a kidney punch a boxer would experience?" and she said yes!! I
thought "great" that is all I needed to know. She said they would do
a spinal on me. I am not looking forward to this at all!! Thanks
though for your information it is helpful.
God Bless, Sue.

Rhonda age 41, diagnosed this year. Have had symptoms for 5 years
though.

Hi Howard,
Don't think I've had it there.....yet. But, I do get it inside my
ears, so I would guess that it is possible. Not sure how you would
treat it either, so I hope this passes quickly for you.
Stay Well,
David

I just wanted to poll you to see what your major concerns were with
starting Enbrel. I have tried alternative methods to control PA, and
have some remission with Reiki. And I have not totally given up on it
as I am still learning as much as i can about PA and other treatments.
I am TWISTED up about beginning the medication regime again, and
toying with my already wacked out immune system. I just dont want to
give up on a more natural approach to dealing with this condition. I
dont buy into the " no known cause" and "no known cure". I beleive
that there is far too much money to be made by producing drugs and
accessories for patients than to find a cure for it.
Unfortunately, I have to follow the medicinal approach to treatment
to qualify for any benefits I recieve through my insurance. I feel
like a gun has been put to my head, and my treatments are being
limited to harsher, riskier methods. I feel stress coming on upon
starting Enbrel,, and we know what that can lead to dont we,,,
Help !!!
Brightest blessings to all the brave before me
Sharron

Anyway, I can feel the excitement in your posting and will say a
prayer for you tonight that the success continues. Please keep us
posted !!
Quick question, is your wife on 1 50mg shot a wk or 2 25mgs a week?
Mary
Mary, thanks for the kind words. My wife Marie is on the 50 mg shot. She has
now had three and is doing great. Interestingly, she has an occasional twinge
in her foot (just as you described).
Only side effect so far was rash at injection site of third shot.
We remain amazed at how good she feels!
Glad to hear you are in remission -- we hope to hear those words soon!
Mark

Hi all,
I was at my Rheumy yesterday for my 3 month check-up. He agreed I
needed to change from Humira , which works so much better for pain
and fatigue than Enbrel for me, BUT gives me knock down migraines.
So I'm going back to Enbrel, doesn't give me as much pain coverage
but I'll take that over being laid up with sinus infections and
migraines 24/7/ .
However now the MTX will be even more important to take, to
supplement the Enbrel. However it is so hard to find. The doctor's
office is an hour and half drive and I don't want to start the trip
there every week, esp in this weather, to get the shot there. And I
can not take the pills, I already have GERD really bad.
My mail-in pharmacy , does not have it. Walmart does not have it. My
doctor's office told me to be more agressive and tell the pharmacies
to get it, it's more available , b/c they , the Dr's office can get
it. But I've been calling and callling and no one has it.
I've been using my old supply , which expired in Dec. but it's
better than nothing.
Please let me know where I might look . I live in Central Penna.
near Harrisburg.
Thanks so much.
take care,
Rosanne

Carolyn -- I'd rather you come to the Pacific Northwest. I lived in Miami for 5
months in the early 70s. There are way too many people there for this small
town girl. I admit there is much to recommend it (the fresh veggies, diving,
entertainment, ethnic diversity, etc) but between the humidity, bugs (I'm
allergic to pesticides), the other wildlife, ie toads in the doorway, and
hurricanes..........I'll stay here. My PA is worse in heat, too. Later, Cheri

Hi Kathleen,
Thanks for the information! My story is similar to yours and my docs
have always just blown it off. I appreciate it.
Best,
Marti

Kathleen,
I too have been diagnosed with Adult ADD. With my new meds I have greatly
improved. My testing was suggested by my pcp out of the blue (or at least I
thought out of the blue). He noticed I wasn't as sharp as I used to be. I've
been with him for at least 10 years and we've always bantered about something or
other during office visits. He noticed that I was suddenly searching for words
(I was a technical writer so finding the correct word had never been a problem
before).
I still misplace stuff and am still a bit slower with the comeback but I no
longer sit at my desk wondering why I'm sitting there and what I'm supposed to
do when I have a stack of obvious work sitting right in front of me.
Your right, lists work. I invested in a bunch of long, thin, lined, note pads
similar to shopping lists. I have them everywhere. I write down todo's as soon
as I think of them. One thing I have noticed is that once I write something
down I seem to remember it better.
Sandy swOhio
Kathleen Merillat <kamerillat@...
In response to your comment regarding the onset of ADD in adulthood.
I was diagnosed with PA 10 years ago. I have worked in a professional capacity
for over 30 years and had never had a problem with my memory, organizing, etc.
However, 3 years ago I started to have episodes of losing things, forgetting
names of people I was talking to on the phone, or forgeting who I was speaking
on the phone or why I called them in the first place. I use to have a recall
that was remarkable - and then all of the sudden I didn't and the change was
dramatic and when I look back on it, it was sudden and very noticeable to me. I
was working for a lawyer w/alheizemers (sp?) so it was my responsibility to keep
him in check - so I thought that perhaps I was just too stressed that I also
started not to remember what I was doing - anyway I told my rheumy about this
and he reassured me that this wasn't the onset of alh. but that I should
probably be tested by a neuropsychologist. I took a battery of 5 hours of tests
and was diagnosed with adult acquired attention
deficit disorder. When I asked why - I was told that stress and pain and pain
medication over a long period of time just wears at the brain. Anyway - I've
been medicated ever since. After 2 years I had to change my meds because they
just weren't effective anymore.
I know when you describe this to just about anyone - how you never had this
problem before but now you do - mostly the response I get is "oh, that's normal
- everyone does that - or I do that - it's just age" or - just that you're
trying to make up excuses for doing things that make you look either stupid or
lazy - I get very very defensive. It is almost impossible to explain it anyone
and have them understand - unless they live with you. I started living with my
sister in July and I know she thought I was making this up - until she saw what
happened to me when my meds stopped working. She is now very understanding and
knows that I need notes and reminders and that you have to ask me several times
if I understood a new task (directions on how to solve a mechanical problem
that's new to me) or to make sure everything is taken care of before I leave for
work (3 dogs, 4 birds, 8 fish, door locked, everything turned off, etc. She's
very patient. She has arthritis but I don't know if
it's rheumatoid or what - but she's in alot of pain all the time and I wonder if
this will happen to her sometime down the road (she's 4 years older than me) -
but she does not use medication except for Aleve for her pain. I've been on
pain meds for years (Darvacet but now Percocet) and my flare ups are pretty
intense and now I've been on predinose for about 3 months until I can once again
start with Enbrel (had to stop it when I lost my medical insurance and now
getting financial assistance from Enbrel). Even when I was on Enbrel, however,
I still had the memory deal - I don't really know if it improved or not because
that's about the time I started "losing my mind" so to speak.
So, anyway, the answer is a definite yes to the adult onset of ADD - it's
extremely recognized in the medical community, as well as mental health
community. I do see a psych for the meds, dosage, etc. I would have the
testing done if you can afford it - make sure it's a reputable neuro psych who
works with either a rehab facility or is recommended by your own physicians who
understands your medical background.

I have had the same problem. So much so that I am going back to the 25 mg
injection kits with my next order. They are supposed to be tomorrow. I
would much rather take two injections that only hurt a pin prick to the to
the one injection that feels like glass chards going in my leg. Mary Jane

Howard,
I didn't treat it for healing so much as for protection and scale removal. The
doc had me apply vasoline with a cue tip. It did protect the area and
eventually it went away.
Please note, we were assuming it was a patch of psorasis.
Sandy swOhio
howard banford <h_banford@...
Anyone have psoriasis inside of the nose? How can you treat it if you have it?
Is this possible?
Howard

In a message dated 1/24/2005 4:04:26 P.M. Eastern Standard Time,
h_banford@... writes:
Anyone have psoriasis inside of the nose? How can you treat it if you have
it? Is this possible?
Howard, I had this once after having a cold...the only thing that worked for
me was neosporin ointment...I just tried it on my own (couldn't get into the
doctor) and it cleared up...
Rachel

Are any of you metho takers having a problem getting injectable methotrexate.
Is just about impossible to locate any here in Ohio.Have you heard when it is
going to be back on the market? My druggist doesn't know. I have enough for
3 more weeks and then I will have to go back on the pills. Sure will hate that
as the pills made me so sick and fatigued.
Joanne

Hi, Howard,
I've never officially been diagnosed with P inside my
nose, but I've suspected for some time that I do, and
that it contributes to my sinus problems.
Now that I've started Remicade, I have a dramatic
improvement -- I suspect it was either actual scales
or possibly just inflammation causing the problem, and
the Remicade has dramatically reduced my skin P AND my
random inflammation hot-spots.
In the past, I've used everything I can think of to
keep my sinuses open -- saline spray and sometimes
neosporin (over the counter antibiotic/first aid
ointment) to keep things moist and reduce "crust";
Zyrtek, Pseudofed, and Mucinex daily to treat
allergies and congestion; antibiotics to treat
infection.
If you can get a doctor to confirm that you've got P
in the nose, there are several folks on the list who
would like to hear it. There was a long discussion
about P in the ears not long ago. You can find it in
the archives.
Good luck,
Allison
=====

Anyone have psoriasis inside of the nose? How can you treat it if you have it?
Is this possible?
Howard

In response to your comment regarding the onset of ADD in adulthood.
I was diagnosed with PA 10 years ago. I have worked in a professional capacity
for over 30 years and had never had a problem with my memory, organizing, etc.
However, 3 years ago I started to have episodes of losing things, forgetting
names of people I was talking to on the phone, or forgeting who I was speaking
on the phone or why I called them in the first place. I use to have a recall
that was remarkable - and then all of the sudden I didn't and the change was
dramatic and when I look back on it, it was sudden and very noticeable to me. I
was working for a lawyer w/alheizemers (sp?) so it was my responsibility to keep
him in check - so I thought that perhaps I was just too stressed that I also
started not to remember what I was doing - anyway I told my rheumy about this
and he reassured me that this wasn't the onset of alh. but that I should
probably be tested by a neuropsychologist. I took a battery of 5 hours of tests
and was diagnosed with adult acquired attention
deficit disorder. When I asked why - I was told that stress and pain and pain
medication over a long period of time just wears at the brain. Anyway - I've
been medicated ever since. After 2 years I had to change my meds because they
just weren't effective anymore.
I know when you describe this to just about anyone - how you never had this
problem before but now you do - mostly the response I get is "oh, that's normal
- everyone does that - or I do that - it's just age" or - just that you're
trying to make up excuses for doing things that make you look either stupid or
lazy - I get very very defensive. It is almost impossible to explain it anyone
and have them understand - unless they live with you. I started living with my
sister in July and I know she thought I was making this up - until she saw what
happened to me when my meds stopped working. She is now very understanding and
knows that I need notes and reminders and that you have to ask me several times
if I understood a new task (directions on how to solve a mechanical problem
that's new to me) or to make sure everything is taken care of before I leave for
work (3 dogs, 4 birds, 8 fish, door locked, everything turned off, etc. She's
very patient. She has arthritis but I don't know if
it's rheumatoid or what - but she's in alot of pain all the time and I wonder
if this will happen to her sometime down the road (she's 4 years older than me)
- but she does not use medication except for Aleve for her pain. I've been on
pain meds for years (Darvacet but now Percocet) and my flare ups are pretty
intense and now I've been on predinose for about 3 months until I can once again
start with Enbrel (had to stop it when I lost my medical insurance and now
getting financial assistance from Enbrel). Even when I was on Enbrel, however,
I still had the memory deal - I don't really know if it improved or not because
that's about the time I started "losing my mind" so to speak.
So, anyway, the answer is a definite yes to the adult onset of ADD - it's
extremely recognized in the medical community, as well as mental health
community. I do see a psych for the meds, dosage, etc. I would have the
testing done if you can afford it - make sure it's a reputable neuro psych who
works with either a rehab facility or is recommended by your own physicians who
understands your medical background.

i was taking methoxreate in tablet form for 2 yrs(8 tblts a week ) but have had
no improvement if anything iam worse .. i have now started injecting myself 25ml
a week ... i have been doing this for a month and still dont feel any better ..
could someone tell me if they have had better improvement by the injection?.. it
will be nice to hear from you ... thanks helen xxx
SEE YOU LATER

Thank you from the bottom of my heart to the many of you that
extended me a birthday wishes. I felt like I just got a big group
hug and that is something that I truly needed. By the way, I know
that many support groups actually meet, if even on a yearly basis.
Has this ever happened with this group? If not, would anyone else
be interested? Why the heck, don't all of you just pack a bag and
come to Miami, where I live and we'll meeet here. It would sure
save me a lot of travel expenses, ha, ha. Miami is afterall the
winter meeting place of the world. Besides, I'll show you the real
Miami, not the SoBe crap, that any native here over the age of 30
loathes. Love, Carolyn

hi all , missed reading your mail. i finally figure out how to
change everthing at least i hope it changed im able to right to the
group so that must be good sign. so hows everyone doing we got lot of
snow here in nova scotia canada . i like being out in the snow
working but it hurts more now to do any amount of shoveling . but i
go out none the less (for the joy of it ) me and my two girls
sniper , skye we have since moved and thats why i didnt get your
letters . the stress of living with a drinker was too much on me it
makes a person so unhappy and having the artritis,crhons fibo. its
not fit living but doing much better stress wise and happier, love my
new place . i lost alot but i think i gained more . its great here .
now i must go and fix or work on something else glad to be back let
me know. thanks fo being there rosemary

hi again carolyn!
i have been here, but mostly lurking i'm afraid (sorry....). i'm
holding my own - still somewhat flary, especially wrists and
knuckles, and feet and ankles bothering me again as well as my
spine. had a 'less than satisfactory' rheumy appt on jan 13 - ended
up in tears in his office - i had so looked forward to seeing him and
had a long list of things to go over - think this turned him off -
after all, only had a 15 minutes appt. he blames most of everything
i have (except for the 6 or 7 swollen joints) as fibro-related - when
i mentioned how bad my spine was he would not even palpate, but
finally did agree (probably to shut me up) to order a bone scan.
this is scheduled for march 15... now off that subject - (it just
makes me angry again and i have moved past it :-D)... have had some
excitement around my neck of the woods in the last while - as you may
know (not sure), my husband and i have two domiciles - a small
unfinished cottage beside a lake where we stay during the week - so
dale can commute to and from work - and a log home (the real house)
up at a ski resort a further hour east of vancouver, BC. a week ago
we had a very sudden thaw - temperatures were more like april than
january and with it came torrential tropical rains from the west
pacific - the lake where the cottage is flooded last week and on
wednesday last week, my husband took the day off work and we got the
house contents ready in case the water rose enough to come in - it
was alot of work and of course, because of the damp horrid weather, i
was feeling pretty badly. i came up here to the mountain in the late
afternoon that day and my husband followed on friday morning for the
weekend. we had much more rain forecast for this past weekend but
thankfully, much of it bypassed the area, going a short ways further
north. because of that the water has receded so there is only about
3 inches of water on the grass now. there is still no water or sewer
services, so i am staying here until they are turned back on. for
the last few days i have also had a touch of flu, but it hasn't been
full blown and i have been resting, keeping warm and drinking lots of
fluids. (i've watched some pretty good movies on the tube!) still
have lots of lethargy (though that's normal anyhow :-D) but all
things considered, not doing too badly at all...
i hope you have a great appointment with your rheumy carolyn. just
be a sassy redhead ok? again, a very very happy birthday love.
karen

dear carolyn,
first of all, a belated HAPPY BIRTHDAY kiddo.... whether you wanted
to celebrate it or not, you are going to get a heap load of good
wishes from yours truly! lol...
regarding your fatigue, i know exactly what you mean - i'm sure most
of us do.... in some ways, even more than the pain, the fatigue is
the most bothersome (except on really bad pain days :-D). and i
further agree with how being on board communicating and sharing with
all of us is a lifesaver... a very safe haven to 'be yourself', warts
and all, and know that everyone understands. we hold up those in
need, and are held up when it is our turn.... your recent posts have
been so informative, and very much appreciated. my dream as a child
had been to be a nurse - went into nurses training but as a young
probie the brother of a close personal friend i was visiting one
evening died when i was there... as a very naive 17 year old, i ran
away because it was too hard to bear emotionally, and it has been a
regret of mine ever since.... i'm such a 'scottie's little softie'...
i hope your rheumy appointment goes well and you get some much-needed
answers, carolyn.
once again, thank you so much for sharing so much with us all. i
always look forward to reading your messages...
gentle hugs,
love, karen

Dear Carolyn, First of all Happy Birthday! I realize you probably dont
want to celebrate or feel like its a great day. Birthdays arent much fun
as we get older, but at least we still have them. Im glad the group has
been so helpful to you. I havent written you (at least I dont remember
if I didlol) but Ive read your postings with a lot of interest. You
always seem to be on top of things and a great writer.
As far as fatigue goes, if you doctor rules out anemia or anything else
wrongIve found vitamin B supplements help me. Id love to get injections
like they used to give out all the time, but I cant find a doctor who does
them anymore. Most doctors stopped using them when the insurance companies
quit paying for the injections. Sort of irritating, but money does talk and
move mountains. Also there is a fairly new drug being used for energy
control called Provigil. It has some side effects, like all drugs, but some
people really think it helps their fatigue. Ive tried it from time to
time, but I tend to have high blood pressure once in awhile, so I use it
very sparingly. I really think Vitamin B works just as well, but that might
be due to my fibromyalgia and we tend to need more of certain vitamins.
Im personally always amazed at how many people can work and still battle
this illness. For me fighting it is a full time job and I hate the fact I
finally had to give up and stay at home. Working can be a real lifesaver
just because it keeps you with people, but it also is just impossible for
some of us. You must be really strong. Maybe since you finally took some
time off, and are relaxing its all hitting extra hard. When we go, go, go,
we tend to just ignore the pain and push things away for a later date. Ive
had that happen to me from time to time and when I finally do relax, it hits
me hard.
I know you said this group is a lifesaver, but its because people like you
post and communicate so well that makes it what it is. We all have
different experiences, use different doctors, try different medications and
thats what makes us so special and such a great place for information. WE
all have this rotten disease to fight, but as long as we all come together
here to vent, cry and laugh I think well make it though. Take care of
yourself and again, Happy Birthday. Love, Fran

Hi everyone! So many of you are posting with your concerns and
experiences with what could be potential side effects of meds and
this concerns me. You certainly have woke up the retired nurse in
me! Lot's of concerns over sed rates (ESR) also. Let me assure you
that it is used as a diagnotic tool that can, let me say this again,
can be a indicator of the body's inflammatory response. I just
recently had a reading of sed rate in the 30's after at least two
years of negative readings with esr's and visible inflammation in my
hands and right ankle. So, of
course, any Dr. in his right mind can't say, "Uh, sorry, this
inflammation doesn't really exist or your blood work would say so.
Sometimes a sed rate can be elevated to indicate inflammation that
it not visible to the eye, such as internal organs being affected.
Any qualified and experienced Dr., esp. a rhemmy knows that. A
qualified rhumy know that this test is expected of him to be
performed to initate the process of diagnosis and to attempt to put
the pieces of the puzzles together. A good M.D. should also see the
M.D. as a acronym of "Medical Detective." That being said if you
want to do some research on your own, try: 1) medscape.com. I'm
enrolled with them aas a nurse but they do give the option of
regestering as a consumer. You will have access to drug info and
diease info. 2) Have a window open at the same time for
medicaldictionary.com There will be plenty of medical jargon used
and you must be able to decipher it. I use them so much that I
installed shortcuts. I look forward to your feedback on your
experiences with this. Please do not get carried away with all of
this medical data. It can be helpful in deciding wah questions to
pose to your Dr's. Love, Carolyn

My MD has recently ask me to try Lexapro for generalized anxiety. I am
finding it very difficult to tolerate. We thought that it might be
beneficial to me because my sister is on it with great results and
absolutely no side effects. For me it winds me up. If I take it at night I
can't sleep. When I take it I get these weird body aches and seem to want
to sit an stare with a heightened feeling of anxiety. It also seems to jack
up my blood pressure a little. However, a few hours later I do feel more
relaxed and less tense. My Dr wants me to stay on it another week at a
reduced dose to see if the side effects resolve. It's supposed to take a
few weeks to work anyway. Has anyone else had similar experiences with
Lexapro or other SUI drugs while being treated for PA? I'm on Enbrel.

Dear Karen, AKA: mission blondie. How are you? I haven't seen you
post lately. Is everything okay? Just wanted to let you know that
I am thinking of you, hope that everything is okay and that I miss
you and your postings. Love, Carolyn