Rheumatic

Brenda,
You are in my thoughts and prayers.
Kathy F.

yes im in hosp due to my rite hip osteo eating the joint they do not know why,
im facing maybe hipreplacement im 38. also my back not to sure prayers would be
very helpful, i know everyone has there own problems please pray for me for im
very scared will post when i get back leelioness
annfromthehoosierstate <annordavid.leclere@...
Dear Dick and Sue,
Thank you for your kind words. I am a little new to posting. I am
more of a lurker, but I wanted to respond to everyone who answered
my post. Thank you so much for your kind words and support.
God Bless,
Ann

I usually have been told by my RD to get a flue shot because I am on Enbrel and
because of the risks involved. Flue shots are in obviously very short supply
and I feel bad about maybe taking one that could go to an elderly person. What
is everyone else on Enbrel doing at this point?

For all of you who have been discussing the various "arthritis
diets" and conteplating weather or not to purchase one of the books,
my dear mother found the following for me. I showed it to my Rheumy
and he said that it actually works for some people. I have not been
able to keep to it, but it's worth a try for those of you with
better will power than I.
Heather
For 4 weeks avoid completly:
tea
coffee
chocolate
sugar
alcohol
cow's milk products
meat (except poultry)
shellfish
citrus fruit
pickled or smoked food
wheat
rye
barley
soy
peanuts
eggs
food with added sugar
Reduce salt and fat as much as opssible apart from 1-1 3/4 oz nuts
or seeds a day and the same amount of oil or all vegetable margarine
a day.
Base meals on veggies, fruits, nuts, seeds, unrefined cereal grains
with small servings of higher protein foods.
After 4 weeks reintroduce 1 food every 4 days and observe your
reaction. Introduce milk, wheat, meat and eggs first.
Helpful foods:
oily fish (about 1lb 9oz a week)
fresh ginger
raw pineapple
chili peppers
apples
asparagus
black currents
celery
parsley

1)
Brenda, I hope you know how many people are
thinking about you and your suffering. We are all
hoping for your improvement
2) To anyone who has had good results from
methotrexate: How long did it take to see any
improvement? I just started on it yesterday
(with folic acid of course)
=====
Shalom

Sounds like palindromic rheumatism presentation .. but the high antiCCP
indicates high likelyhood of RA. 70% of RA patients respond to Anti-tnf
drugs ... so you're not alone in not responding to abatacept.
If you wish to try Minocycline, then you need to persuade the docs with a
literature review.
Good luck.

--
Dr Graham Chiu
http://www.compkarori.com/forum

Ron, I have had my shot already and don't feel like I have taken a
shot from an older person since I feel 75 myself (I'm only 55). Our
taking Enbrel shots puts us in the at risk category also. We have
an immune deficiency that makes us more susceptible to the nasty
stuff that is out there. And I for one having had 2 infections
since being on Enbrel already, don't want anymore. This is the time
of year that I get to see my grand children less because of all the
stuff they can get and carry around (that's how I got the other 2
infections). So any protection I can get I will take..
In fact my wife and younger daughter are up in DC right now (for the
last 3 weeks) helping our oldest daughter and son-in-law with their
new twin girls. Both are in the hospital with meningitis. I feel
helpless sitting at home doing nothing, but I can't take the chance
of them passing anything to me that they could pick up in their
daily visits to the hospital. So I sit here wishing I could help.
So if you are taking Enbrel, I feel you should get the shot before
they are gone. Good luck getting one.
Dick

Linda, Did your insurance company approved it, which company is it? I feel
that I will need more Enbrel for optimum effect and I have Group Health
Options. They already pay $2000 a month for my meds I can just imagine what
they will say about another $1000 if it comes to that. Also, I haven't
looked at what the ceiling is for prescriptions but I am sure there is one.
I keep wondering if I am squandering my future med requirements. Sigh!
Cheri
Has anyone else on this list doubled their dosage and what was their
response? Did your insurance company have a fit?!?

Gwen,
I don't think that I am the one who wrote in about Vitamin B6 and
Niacin (also known about Vitamin B3). Both are excellent food
supplements for RA.
I would start with 30 mg per day of Vitamin B3. See
http://en.wikipedia.org/wiki/Vitamin_B3
http://www.chem-online.org/vitamin/vitamin-b3.htm
and 5 mg per day of Vitamin B6. See
http://en.wikipedia.org/wiki/Vitamin_B6
http://www.chem-online.org/vitamin/vitamin-b6.htm
Don't take greatly excess doses of any vitamin. Vitamin B3 in doses
larger than 200 mg causes flushing by dilating the blood vessels,
which can also cause the blood pressure to drop. Vitamin B6 in doses
larger than 200 mg over a long period of time can cause neurological
disorders, such as loss of sensation in legs and imbalance.
Sincerely, Harald

I took Minocin every day (100 mg) from 4/05 until just recently and had no
problems. My doctor did increase my second RX to two 100 mg a day but he
didn't tell me about the change and I didn't catch it on my RX so I never
did it. I have recently decided to try a MWF regime as I think I'm much
better and might do OK with it.
I've never taken the other meds so have no input on that question. El

Sorry Tom, I have never had any itching from Enbrel.
I have had some minor rash around the injection site when I first started, but
it quickly went away and never itched. Linda in Poulsbo, Wa.
Hi y'all,
For those of you on Enbrel - is it just me or does it make you super itchy for
about 24
hours after each dose?
I like that this drug is working so well but the itchyness is driving me up a
wall.
Tom - in Anchorage, Alaska

Esther, I take it for Lyme Disease, I also have a Dx of Lupus. I take 100 mg
twice daily. My husband doesn't have to take as much he can do the same dose
but M,W,F. he also has a TBI DX.
In a message dated 6/21/06 11:58:49 AM Eastern Daylight Time,
esther_warkov@... writes:
Hi Caol,
I wonder if you could tell me the dosage you take and the frequency,
and for what condition. Could you tell me briefly why you didn't
tolerate minocin and if it worked for you?
Thanks!
esther

There is a non flushing Niacin. The supplement I use is from America and is
called "inositol hexanicotinate." (Also known as IHN.) This is an excellent site
for inexpensive supplements.
www.thecatalog.com
Huggles,
Lisbeth

Ron, I'm not sure what I'll do. I know my docs will insist I have one but I
am 55 and have only had the flu once (maybe) in my whole life. I don't get
colds either so if I don't get the shot I'm not going to sweat it eventhough
I take Enbrel. I do, however, take a lot of precautions, ie. regularly
cleaning counters ,phones, keyboards, door knobs, or anything that is
touched/shared by others with alcohol or disinfectant and washing my hands
regularly. I handle money and come in contact with a lot of college
students who were absent when illness etiquette was being taught at home.
They snort, hoot, cough, rub their noses, all while writing their checks or
handing my their debit cards or cash. At work I also keep a small box at my
desk with my own pens, pencil, and staple remover which I never share with
anyone. I do this because I am so allergic to hand lotions, perfumes, etc.
that I can't touch things that others have touched if they are using any of
those products but it has the added benefit of not being covered with
others' germs. In some countries a person with a cold wears a mask to
protect others from their condition. I wish it would catch on here.
However, in answer to your question, I'll probably wait and then it will or
will not be too late. Staty healthy if you can, Cheri

-Hi Crystal,
sorry for your diagnosis! Although I understand the feeling of relief
to finally get one. Methotrexate made me very tired, lethargic, a
little nauseus, and gave me headaches. I sure can't say that this is
your problem but it is possible. Sometimes people increase their
folic acid (with doc's permission) or switch to an injectable form of
it. Sleep disorders can also go along with the autoimmune illnesses.
I hope you can get some answers. Sorry your doc blew you off. I
hate that.
Marti

Ethel,
Thank you for letting us know. He will be remembered by all of us that read
his books and were helped by them.
cooky

Hi everyone,
This is Sue from Michigan again!! I was wondering if anyone of you
knows if where you live makes the difference? I live in southern
Michigan where it is so humid and hot in the summer and so cold and
snowy in the winter. I remember that when I was young I had a cousin
that was in his twenties that had P real bad all over his body (I
don't know if he had PA) anyhow he moved to Florida and basically
lived on the beach and this helped his P, he never moved back; I also
have an older cousin-she is probably in her eighties and moved to
Arizona because she had Arthritis so bad (I'm not sure what kind) and
it helped. I've been telling my family that I'm thinking about
moving to Arizona for my P and PA. My husband doesn't want to move
so he might be staying here!! I mentioned this to my Rheu. Dr. and
he just nods his head, so I don't know if he thinks this is a good
idea or just thinks I'm a crazy women with this awful PA. My
daughter went to my visit with me and she has P on her scalp now-that
is where I started so that really scares me, I don't want her to go
through with all this pain.
Fran, if you read this I had to laugh so hard reading about your
experience with the scooter thing in the store. I see people use
those things and I think maybe I should use one instead of having my
daughter push my wheelchair for me and and have to listen to her
complain so much.
Thanks so much for listening to me again, Sue.

Crystal,
Welcome to this wonderful group, there are a lot of helpful people here. I can
relate to not sleeping. I had a lot of knee pain, I was so miserable for so
long. I started Methotrexate & Folic acid and it actually got worse. I was so
tired but could not sleep, restless, toss and turn and watch the clock. I tried
different kinds of pain medicines and it did not help. My Rheumatologist
increased Methotrexate several times. That did not help either. I also took
Bextra and did NOT have any negative side effects. I started Enbrel after 4
months on Methotrexate. Things seem to be getting better.
Elaine

Hi Crystal,
I've been on MTX (a rather low dose of 7.5mg a week) and YES, I have the same
exact problems you are mentioning. I always tired (more than I used to be) and
the day or sometimes the second day after, I am extremely tired ~ for some
reason it varies with severity and timing. Anyway, I found myself waking up at
least 10-15 times per night ~ so I never got a full night's sleep. The mtx also
gives me headaches... I originally began mine with Remicade, but have since
been able to stop those treatments.
All this said, I am willing to put up with it to have the relief ~ and before I
began the medications, I was so tired all the time anyway, and unable to walk or
drive, this is much better.
I have found that acupuncture GREATLY helps me sleep through the night and I do
have a little more energy ~ it's sort of like I can occassionaly get really
excited about something again...
I don't have any experience with the other drug, bextra...
I would suggest if you're not happy with your doc's, take the time if possible
to find a good one. Maybe someone on the list has some suggestions if they live
near you?!
Best Wishes,
Karen (idaho)

Hi Sue,
Jane from Michigan here (I live on the tip of the mitt
on the sunrise side - Rogers City). Last winter I had
to take a medical leave during February and a bad
flare up. (As for Arizona being better, I can't say -
when I lived there I didn't have P or PA.) However,
the cold here is very painful, I also have Reynaulds
so I have to bundle up in layers just to stick my nose
out the door in the winter.
Warm blessings,
Jane

Tom, I have never had any itching after Enbrel injections. But I have only been
on it three weeks, so I may not be the best one say. Elaine

I started mail ordering my enbrel and it was only 15.00 for a three
month supply. I have a Blue Cross PPO though so I don't know if that may be
the difference. I was paying 50.00 a month for arava and then my Mom told me
to do it mail order I would save. I asked my rheumie and now I get that for
15.00 a three month supply. I can't believe the mark up. You have to ask the
doc for a three month prescription though. I feel very lucky to have this
insurance and as I say this they are probably planning on changing it.
Joy

Josie, please tell me where to buy Clyndamycin or
other antibiotics used for Ap on line without
prescription. Any informtion is welcome and needed.
Nan
--- Ethel Snooks <emsnooks@...

If the enbrel is making you super itchy for 24 hours after the shot hat is
not a normal occurance and you should call your doctor .
sincerely cathy from massachusetts

Zoella, see, you are not only a valuable and necessary you know what to do
in a crisis. You probably saved that man's life. I don't know why you have
to suffer so much, it's just not fair. I am glad you do have joy for
balance. I couldn't get your picture to open but would not reject you, no
matter how bad it seems to you. Happy Halloween yourself, Cheri :-))

I buy my antibiotics, and other medication from 2 different sources on the net.
http://www.1meds.com/ which seems to have the better prices.
I also use http://freedom-pharmacy.com/
Shipping is free unlike another online pharmacy that I was using.
I've used Minocin, Flagy, Doxycycline, Tetracycline and the one that works for
ME (emphases on ME) is Keflex. I've been ordering on lin for years, and have
never had any problem.
I just ordered from both places this past weekend, because I always wait till
I get very low on my medication. 1 is faster than the other, and I can't afford
to miss a dose, as I get very ill quickly.
Josie
º¼ÐÐ <xinghunglo@...
Josie, please tell me where to buy Clyndamycin or
other antibiotics used for Ap on line without
prescription. Any informtion is welcome and needed.
Nan
--- Ethel Snooks дµÀ:

Beth,
The following is a repost of one of my recent messages on the subject
of minocin during pregnancy and thereafter:
"Go to www.google.com and do a search on
+minocin +baby +teeth
Here are two results:
See http://www.healthsquare.com/newrx/min1270.htm
"If you are pregnant or plan to become pregnant, inform your doctor
immediately. If you take Minocin during the second half of pregnancy,
it may cause permanent yellow, gray, or brown discoloration of your
baby's teeth. There is reason to believe that taking Minocin during
pregnancy could also harm the baby in other ways. Therefore, Minocin
should be taken during pregnancy only as a last resort. Because
Minocin appears in breast milk and could harm the baby, it should not
be taken by a woman who is breastfeeding. If this drug is essential
to your health, your doctor may advise you to discontinue
breastfeeding until treatment is finished.
http://www.drugs.com/cons/Minocin.html
"Pregnancy - Use is not recommended during the last half of
pregnancy. If tetracyclines are taken during that time, they may
cause the unborn infant's teeth to become discolored and may slow
down the growth of the infant's teeth and bones. In addition, liver
problems may occur in pregnant women, especially those receiving high
doses by injection into a vein. Breast-feeding - Use is not
recommended, since tetracyclines pass into breast milk. They may
cause the nursing baby's teeth to become discolored and may slow down
the growth of the baby's teeth and bones. They may also increase the
sensitivity of nursing babies' skin to sunlight and cause fungus
infections of the mouth and vagina. In addition, minocycline may
cause dizziness, light-headedness, or unsteadiness in nursing babies."
Regards, Harald

Are you sure about the $5,000? I thought they could only take up to, and no
more than $2,000 period...not matter what your settlement amount was. They take
the money from your settlement, and you do not even have to deal with it.
I went the lawyer route and it was so painless and easy. I cannot imagine the
aggravation of doing it yourself when you already feel so horrible.
Linda in Poulsbo, Wa.
In a message dated 10/21/2004 5:14:13 PM Eastern Standard Time,
susieesue@... writes:
How much did you have to pay
the Attorney or did they take that out of your SSD settlement? I
didn't have to pay for an attorney and didn't want to.
They get a percentage of your retroactive pay up to $5000. I never had the
money so I did not have to pay out of pocket. They took a bout $2000.00 and
I got the balance of the retro pay.
Janet

BTW, be sure to take plenty of Probitics 3 hours after you take your
antibiotics. I buy my probitics (acidophiles) @ the Vit. shoppe, I also eat
yogurt through out the day.
º¼ÐÐ <xinghunglo@...
Josie, please tell me where to buy Clyndamycin or
other antibiotics used for Ap on line without
prescription. Any informtion is welcome and needed.
Nan
--- Ethel Snooks дµÀ:

Dear Group, Since we have all basically agreed that humor is helpful to our
health, I had to pass this one on. Love, Fran.
Cinderella is now 95 years old. After a fulfilling life with
the now dead prince, she happily sits upon her rocking chair,
watching the world go by from her front porch, with a cat
named Bob for companionship.
One sunny afternoon out of nowhere, appeared the fairy
godmother.
Cinderella said, "Fairy Godmother, what are you doing here
after all these years"?
The fairy godmother replied, "Cinderella, you have lived an
exemplary life since I last saw you. Is there anything for
which your heart still yearns?"
Cinderella was taken aback, overjoyed, and after some
thoughtful consideration, she uttered her first wish: "The
prince was wonderful, but not much of an investor. I'm
living hand to mouth on my disability checks, and I wish
I were wealthy beyond comprehension.
Instantly her rocking chair turned into solid gold.
Cinderella said, "Ooh, thank you, Fairy Godmother".
The fairy godmother replied "it is the least that I can do.
What do you want for your second wish?"
Cinderella looked down at her frail body, and said, "I wish
I were young and full of the beauty and youth I once had."
At once, her wish became reality, and her beautiful young
visage returned. Cinderella felt stirrings inside of her that
had been dormant for years.
And then the fairy godmother spoke once more: "You have
one more wish; what shall it be?"
Cinderella looks over to the frightened cat in the corner
and says, "I wish for you to transform Bob, my old cat,
into a kind and handsome young man."
Magically, Bob suddenly underwent so fundamental a change in
his biological make-up that, when he stood before her, he was a
man so beautiful the likes of him neither she nor the world had
ever seen.
The fairy godmother said, "Congratulations, Cinderella,
enjoy your new life. With a blazing shock of bright blue electricity,
the fairy godmother was gone as suddenly as she appeared.
For a few eerie moments, Bob and Cinderella looked into each
other's eyes.
Cinderella sat, breathless, gazing at the most beautiful,
stunningly perfect man she had ever seen.
Then Bob walked over to Cinderella, who sat transfixed in
her rocking chair, and held her close in his young muscular
arms. He leaned in close, blowing her golden hair with his
warm breath as he whispered ........
.............................
.............................
"Bet you're sorry you had me neutered".

Hi Karen...
Not exactly what you're looking for, but as an fyi... I combined mine with
Remicade from the very beginning ~ the doctor perscribed it this way because he
said the MTX wouldn't kick in for at least 4 to 6 weeks... The two together
worked within a day...
Karen (idaho)

---
Hi Janet,
I'm on the 50mg. pain patch. I've been on this dosage for about 2
mos. and it has helped alot, I haven't had to ask for the stronger
dosage yet. I don't know about the withdrawal symtoms-I did go a
couple of days without a patch because I had to wait for the Dr. to
mail the prescription to me because it is one of those medications
that cant't be "called in" here in Michigan-I could tell the
difference in the pain without the patch. This probably didn't help
you much in your question.
God Bless, Sue in Michigan

Dear "xing...,"
Whenever anything comes through from you, I get a box that comes up telling
me that if I want foreign characters displayed properly, I need to install a
Chinese language pack, etc., etc. Isn't there any other way you can have
your address Anglicized? Even if I just want to delete the message, I have
to go through the canceling of that message box that pops up. I'm sure
everyone else must be experiencing the same thing.
Ellen

Fran,
I hope you get the oxygen set at a level that is comfortable for you,
that is so important. It took me like 6 months to get used to mine,
but now I wouldn't even nap without it. It has really made a
difference in my overall health I feel. Prior to being diagnosed
with sleep apnea and using my CPAP, I would sleep 10 hours a night if
I could and still want more and more. Now that I have my machine and
use it faithfully, I can go strong on 5-6 hours of sleep!
Good luck to you,
Tamara

-Hi all,
I'm finding the gadget thread helpful. I don't want to plug a brand
name over any other but since someone asked I now have an electric
jar opener by Black and Decker which is advertised on sale at k-Mart
for 34 dollars this week. I have had good succes with it. It opens
the twist bottles too. Over the years I have used many varieties of
jar opener gadgets. My hands finaly got so bad that the electric one
was necessary for me.You can see pictures of some of my gadgets in
the member photo section. There are also pics of tongue and groove
pliers there. I am never far from a pair of pliers to us as a grip.
I have even used one pair in each hand on occasion :) I think it was
Cheri who had the blow dryer holder. I have one that hangs on the
wall but you can get them on a stand too. I also have a electric
peeler that I haul out to bake apple crunch or make mashed potatoes.
If I have just one thing to peel I use the good grip peeler already
mentioned.
about time for some apple crunch :)
Best,
Marti

Dear Friends,
Sorry I am just learning how to use attachments and the first try failed. Will
attempt again to send you a picture of my legs.
Blessings to all,
Zoella

Good Luck to you on Wednesday Maritza! Maybe you can write down some
affirmations and keep repeating them to yourself on the drive to NYC. You sound
very positive about school so maybe you can keep your focus on that. Try to
keep all your thoughts positive, things will work out as they should. Keep the
faith and know that we are wishing you well. Please keep in touch.
Maggy

In months past, there was correspondence about RIFE machines. These
are expensive radio wave generators, which apply user-selectable high
frequencies. Allegedly, there are specific resonant frequencies which
kill "bad" germs, while not harming "good" germs. In several emails,
I explained why I thought that RIFE machines are a hoax.
Somewhat related to RIFE machines are low frequency electromagnetic
generators called TENS units. "TENS" is the acronym for
Transcutaneous Electrical Nerve Stimulation. A "TENS unit" is a
pocket size, portable, battery-operated device that sends electrical
impulses to certain parts of the body to block pain signals.
Allegedly, TENS units are approved by the FDA, while RIFE machines
definitely are not.
Also somewhat related to RIFE machines are low frequency
electromagnetic generators called EMS units. "EMS" is the acronym for
Electronic Muscle Stimulation. EMS units can also be pocket size,
portable, battery-operated devices. These are sold for reshaping and
firming thighs, buttocks, and for maintaining muscle definition.
After testing a TENS unit and doing online research, I purchased a
combination TENS / EMS unit online yesterday. That unit costs $109
and is described in www.paincontrolproducts.com/micro850.htm. I will
let you know how it works out for me and my wife.
Doing a www.google.com search on
+TENS +EMS
brings up 568,000 pages. Apparently, the TENS / EMS industry is
decades old, and there are many distributors. Two are the following:
http://medword.com/MedwordStore/PCP/
http://www.paincontrolproducts.com/emp-product%20list.htm
Sincerely, Harald

There is osteoarthritis which involves the bones.
There is PA and RA which involve the soft tissue.
Per my Rheumatologist the weather affects osteoarthritis not PA/RA
but...people with PA can also have OA...so the answer can be yes and
no.

My son, age 30, has been diagnosed with RA. The bones in his feet are
already disintegrating - he can't wear his work boots, etc.. The
rheumatologist put him on pain killers and Plaquenil.
I have MCTD, with SD prevailing and have been on the AP therapy for 6 years
and a member of this e-mail groups for 2 years.
He won't listen to me about supplements and AP therapy.
so, are there any men out there with RA that would reply to me that AP,
supplements worked for you and I could have him read your e-mails?
thank you.
Sandy
Beaumont, CA
MCTD, pulmonary fibrosis, etc.

Sandy, I hope you will get MANY responses. I, too, have a son with RA
moving quickly and he will not follow my treatment. I will pass on any emails
that come here. Sandra

Hi Sue...
No, believe it or not, my husband was very young. I do not remember exactly,
but he was in his early 20's...
The entire process was insane ~ and I fought tooth and nail ~ and called and
called ~ and pushed and pushed (both the local offices and the doctor's) to do
something. Everyday I called, cried, begged, etc... We had only been married
for a couple of years and had a baby ~ and we had no money and he simply could
not work.
The key is in proving that you are not able to do ANYTHING, literally... I had
an uncle (lived in Chicagoland) and he was never approved, yet he had been burnt
over 95% of his body in a steel mill accident and was unable to sit for long
periods, use his left hand or arm (and he is left handed),and walk long
distances ~ but they felt he could do something, however menial or however LOW
the pay and it didn't matter if there wasn't a job opening anywhere near him,
they felt he was employable.
With my ex-husband, we proved he was not able to work in any industry he had
training in, that he wasn't able to work in any environment where there was any
kind of "anything" in the air (perfume, chemicals, saw dust, cold air, humid
air, etc)... When having an attack, which happened at least 3 times per week,
he couldn't do anything for himself (dress, eat, bath, etc) because he couldn't
breathe. He was depressed, etc... In one sense, we were lucky if you call it
that, because his medical records were present ~ emergency room visits averaging
3 times per week, doctor visits, medicine after medicine, etc... Like any
autoimmune disease, when he wasn't sick, he looked fine and could sometimes
almost be normal ~ but he wasn't... In the end, that is the key ~ you have to
make it obvious that it is impossible for you to work in ANY capacityand it is
hard to want to make a case that strongly ~ you must use every single problem
you have, even if you don't want to (mental issues count
big time)...
Well, at least this is how it was in Idaho about 12 years ago...
I know we were lucky ~ and I saw first hand within my own family how the system
didn't work. Honestly and I hate to say this, but I also saw a few people who
qualified and never should have!!
Anyway, I know it seems more likely not to happen on the first try, I just
thought I should share when it did.
Karen (idaho)
susieesue <susieesue@...
---
Hi Brenda,
I hope you are on the way for recovery. I will pray for you. Ask
for as much pain medication as you can get so you don't have to
suffer. I will be thinking of you.
God Bless, Sue in Michigan.

Hi Harald,
Have you ever heard of the Ondamed Machine? It was presented at the Lyme's
Conference in VA earlier this year. I know one lady who bought it; another
bought the Rife Generator. I've tried them both but I can't say whether
they helped. I have felt good after both experiences.
Isn't the TENS unit used by physical therapists? El

See the Klebsiella connection to AS
I highly recommend you google it.

What disease is AS?
Susan Mitchell <mitchell.ok@...
met a man yesterday who suffers from this.
I would appreciate your knowledge on this disease.
Thanks, Susie
To unsubscribe, email: rheumatic-unsubscribe@egroups.com

Hi Maritza, It is Dolores again here in NYC. I forgot to give you my phone #
212-475-0207. We live near the NYU campus. It's a college oriented neighborhood
with a few seniors like me thrown in. Call if you need anything while you are
in NY. I have S/D & R/A diagnosed 2 yrs. ago and on Minocin 8 months. Dolores
Susan Mitchell <mitchell.ok@...
to welcome my best friend Maritza. She
came to visit me in July and I really enjoyed having her. She is one
fine lady and a very positive person.
I really can't remember how I felt when I started AP years ago. I was
so sick with active scleroderma that I can't remember what symptoms I
had. Maybe it's good that my memory has failed me.
Please help her with your experiences. Maritza has gone through so
much, ie...chemo. Let's give her a big welcome.
Love, Susie
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Gloria.
I had one knee replaced. If I had to have both of them done, I would do them
both at the same time and you only go through the pain once instead of twice.
jan
"Gloria M. Tate" <miss.gloria@...
Hi,
I scheduled knee replacement surgery for August 23. I scheduled to do both knees
at the same time, but I can change it to one. Do anyone have experience with
getting knee replacement and have an opinion on getting them both done at the
same time? The doctor said that it raises the risks and I would probably need a
blood transfusion due to blood loss during surgery.
Any opinions?
Thanks,
Gloria

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Brenda,
We are all here for you and wish you well. Our thoughts and prayer are with
you.
Janet

I saw my rheumy today and asked his option of the
Vioxx study that has everyone so riled up.
He said that since I am an otherwise-healthy
41-year-old pre-menopausal female of acceptable weight
with no current signs of cardiac disease, he has no
problems with me continuing the Vioxx at 25mg per day
or less. (He didn't seem concerned that my father died
of heart disease at an early age.)
His opinion of the study is that it red-flags higher
doses of Vioxx (50 mg) taken for more than 5 days at a
time, especially in patients with other health issues
that can contribute to heart disease and cardiac
incidents.
Until someone does a better study or I have another
reason to quit, I'm going to keep taking Vioxx. I know
that when I miss a dose, I can barely move.
Your mileage may vary, so consult your own docs
regarding possible complicating factors.
-- Allison
=====

Hi leelioness,
I will pray for you and hope you a speedy recovery. I went through 2
hip surgeries-my diagnosis was Oseoporosis/Osteoarthrisis after I
broke my hip-before it broke I had awful pain in my thigh and could
hardly walk. The hip break/and recovery is one of the most painful.
Once you get through it you will be on the road for recovery. I'm
having a total replacement in Dec. I will be glad when it is over.
I will be thinking of you. God Bless, Sue in Michigan.

I saw the rheumy today. Overall, I think I'm doing
well on the most obvious issues -- skin clear,
affected joints mobile but still a bit uncomfortable
-- but my neck and back are killing me!
I know there's inflammation in soft tissue on the left
side of the C3 vertebra, and I suspect as much in the
mid-back. I thought fibro to be involved, but my key
pain doesn't map to the fibro pressure points, and the
pain is asymmetical (left side of the neck, shoulder,
and back only). I also have limited movement in my
neck, and a clicking sound deep inside when I reach my
range limit.
The doc upped my MTX from 16 units (6 pills) to 20
units (8 pills) and added a muscle relaxant. He says
"muscle spasms" are causing the pain.
So.... from this I gather there is still inflammation
at work in or near the spine, perhaps pinching a
nerve? Has anyone experienced anything similar?
-- Allison
=====

This is false, check out snopes.com
http://www.snopes.com/politics/medical/vitamins.asp
Claim: American consumers risk losing their right
to purchase and use vitamins, minerals, and dietary supplements.
Status: Multiple see below:
* In June 2005 the USA will be forced to
accept Codex regulation of vitamins, minerals, and dietary supplements: False.
* Bills proposing the regulation of dietary
supplements are currently before Congress: Not any more.
It did not seem feasible LOL
Sallie

Hi Mary,
Good luck with the injection. Good to hear the bones are feeling better. Now
for the skin eh?
Hope you can get that sorted out too.
Take care,
Martin

In a message dated 10/22/2004 6:03:54 AM Eastern Standard Time,
lbschroeder@... writes:
Are you sure about the $5,000? I thought they could only take up to, and no
more than $2,000 period...not matter what your settlement amount was. They
take the money from your settlement, and you do not even have to deal with
it.
I went the lawyer route and it was so painless and easy. I cannot imagine
the aggravation of doing it yourself when you already feel so horrible.
I thought it was up to $5000 but I could be wrong because I am in brain fog
all the time. I definitely agree with your last sentance and that is feeling
so horrible to begin with I did not want to deal with any of it.
Janet

In a message dated 10/17/2004 7:29:23 AM Eastern Standard Time,
fran@... writes:
Soooooo. I figured out if I froze
half a bottle of bottled water, then before we leave the house, I add cold
water to the rest of the bottle. This way your water says ice cold all day
long and down here in Florida that is a big deal for me. Just had to get my
2 cents in I guess...lol. Love, Fran
That is amazing Fran. I always freeze whole bottles of water and it is
never defrosted when I want to drink it. By doing what you do is wonderful and
I
feel like a jerk for never thinking of it myself.
Janet

-Hi Liz,
I understood what you wrote and I'm not even blonde....LOL!
keep wrting...we all have something to contribute.
:)
Marti

Josie,
Thank you very much for the valuable information to
buy meds on line. Nan
--- Josephine Bradshaw <jjosie007@...

Thank you, josie, for the information. Best wishes!
Nan
--- Josephine Bradshaw <jjosie007@...

Alice, I don't know the answer to your question but I had the same problem
when I took Vioxx and I was told I could take Tylenol with it. I did quite
often and had no ill effects. Mind you this is not a recommendation, just
my experience. That is a question I usually ask my pharmacist. It helps
that they are all friends but any good one should be able to tell you if
there is a contraindication. Hope you are better soon. Cheri

Hi Lorna and everyone,
I don't know where you live, but here in Michigan I called my county
health Dept. and they made me appt. after they asked me what chronic
disease I had-I told them I had PA and they said it was a chronic
disease and on their "list" for flu shots-I'm scheduled to get one
Oct. 28th-I'm praying that they have them then. I got my Pneum. shot
last week and the nurse said it was good for 10 years.
God Bless, Sue in Michigan.

I could also be a combination thing... I am also on indomethicine and I do light
therapy 2
-3x a week at the dermitoligists office.

Hi Elaine,
I welcomed you also-maybe you didn't see it. For some reason I'm
feeling sad lately and everything makes me sad even when someone
doesn't respond to my welcoming them.
:( Sue in Michigan.
[Editor's Note: Sending you an offical hug from all of us to you. Kathy F.]

---
Hi Karen,
I've been on MXT for about a year and haven't noticed it helping me
at all. My Rheumy said he had to start me on it and to stay on it
for awhile before he could prescribe anything else. It's been on the
market for about 20 years
Sorry...:( Sue in Michigan.

Research Yields Clues to Lupus, Rheumatoid Arthritis
Cellular targets could lead to treatments, scientists say
http://www.healthcentral.com/newsdetail/408/534623.html

---
Hi Karen,
Thanks for your message. I can understand it better now. I know
what you mean about some people not needed SSD and getting it. When
I went to my first Dr. visit that they sent me to I was the only one
in the waiting room with a cane (I now walk with a walker and use a
wheelchair)and most of people were younger than me (43); I thought
maybe they had heart conditions or something? I don't know.
Anyhow thanks and God Bless, Sue in Michigan :).

Esther,
It appears that the generic minocycline sold by your Walgreens is
working for you. Who is the manufacturer of this generic? Please ask
the Walgreen druggist and let us know. Thanks!
Sincerely, Harald

Thanks for the info, Robert!
Sally in L. Rk here. Can you pls just e-mail me how much (approx) this costs?
I have lmtd time on computer and don't do much "site searching".
And, I need inflammation AND pain relief-does Botswellia not provide
inflammation relief?
Looked up Relafen in "The Pill Book" and see no difference in its side effects
vs the other NSAIDs. Long lists of them, unfortunately.
Thanks in advance for price info and dosing info on Botswellia, Robert.
Sally in L. Rk

In a message dated 9/2/2004 6:58:43 PM Eastern Standard Time,
fran@... writes:
"Bet you're sorry you had me neutered".
LOL, that was hilarious and gave me the best laugh. At least we all
still have our humor.
Janet

You poor darling,
You're right for hating this disease.It is horrible and
unfair, and I wish I could give you a big hug. I have no words of
wisdom, other than please remember, there is a huge group of people
here, who understand every word you type.
Leanne

Dear Janet, Well when you move to Florida you have to figure these things
out or you die from the heat. I do it every time I leave the house and it
has worked every time. It is such a simple thing, but makes a big
difference to me. How have you been feeling Janet? I thought I read where
you don't think Humira is working very well? I have to say that the last
MRI I had sort of set me off again. Just lying down on that table for 30
minutes was so miserable on my lower back. I've found out now they can do
your back MRI sitting up in a chair and that will be a big difference to me.
I think I'm actually in the middle of a flair or it's just the recent cut in
the prednisone that has brought back most of my symptoms. I'm finally down
to 10mg and I'd give anything to take it back to 12.5mg, just to feel better
for a few days. I've just worked so hard to get to this point, I don't want
to mess it up anymore. I want off this drug really bad now and I just pray
I can stay there.
So far I'm on Bextra now instead of Vioxx and I think it's bothering my
stomach, but that might all be in my mind. I know I had problems with
Celebrex. I'm still having numbness in my hand and wrist which is driving
me nuts, but take away all of those problems and I'm doing just great...lol.
Well like goes on and things can always get worse, so I'm happy with the
energy I have on Arava at least. Let me know how you are and I don't think
you are a jerk at all. Love, Fran

ktandtm <ktandtm@...
all can help. I went through
hurricane Katrina while being pregnant. Never had a symptom in the
world. Then after I had my baby in Sep. I got arthritis pain and
could hardly do much of anything. Finally went to the doc and was
told I had lupus. Then moved again and new rheumy said I have RA
and doesn't think I have lupus. I have inproved some on my own
before starting methotrexate. I don't feel the MTX is doing much of
anything and I just want to cry all the time. I am the mother of 7
and three of my children are under the age of 5. It is so hard to
take care of them and I am scared and depressed a lot. I really
thought I would be getting better by now. I am only 37 and just
can't believe this has happened. Now I am also having symptoms of
Raynauds and just don't know what to do. C
Can any of you offer any hope other than taking meds upon meds upon
meds. Seems like when one med doesn't work they just keep adding
more. I don't want to take all these high risk meds but I dont'
know what to do! Sorry for writing a book but no one seems to
understand why I cry all the time. I am normally a strong person
and have never cried much. Now I am a baby! I just don't
understand.
Thanks for listening,
Katie
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Hey Martin,
I just wanted to say thank you so much for your humor and your comments ~ the
sound you more likley heard was the sigh from all of us knowing we'll be missing
your wit support for awhile!
That said, hope you have a WONDERFUL vacation...
In Northern Idaho today, it was 45', very windy, and raining ~ but at least it
isn't snowing ~ YET...
Karen

Hi Sue,
Not sure if this helps, but when I began Remicade treatments this Spring, it
was not yet approved for treatment of PA. My insurance company has covered the
treatments, but I do not know what Medicare's stance is ~ nor if the doctor's
strong recommendation will help.
Best Wishes,
Karen

Owen's spine (lower, above the tailbone area) is affected, and his
Rheumy knew it was an issue, before Owen had any back symptoms.When
he was examining Owen (you know, rolling the hip and knee joints
around) he commented 'restricted' on something, scribbled on a bit of
paper, and put it in Owen's file. The next time we saw him, he asked
owen about new ones, and when Owen mentioned his back -he pulled out
the bit of scribbly paper- it was dated and signed and pinpointed the
exact area, that was now hurting.
Everyone is different, I need to find out as much information as
possible. That way I can answer Owen's questions, and both of us are
informed amd prepared for whatever happens or whatever his Rheumy or
Orthopaedic specialists say. It's a matter of personalities, I think.
I'm glad your Dr is discussing good pain management with you.Take
the help, you have enough to battle without fighting with Dr's to be
comfortable.
Thinking of you
Leanne

Hello, I seldom post, but I always read.
I have a few tips for the kitchen. I find that working at a counter
is a strain on my arms and back as I am not terribly tall. I put the
bowl, pot whatever I'm working on, in the sink. It is much easier to
work with a downward force for me. This is especially good for
baking. I also use an old fashioned potato masher to mix batters
when you can't use an electric mixer. It has a wide handle, can be
used in an up and down motion as well as around. I find repitive
motion very exhausting on my arms. (I still use a spatula to scrape
around the edges as the masher isn't terribly good for that.)I have
an apple peeler for this time of year. I love to cook and bake and
refuse to let this disease make me stop. My family,mostly my 17 year
old daughter are very grateful for that! Sometimes, I take a quick
rest lying flat on the kitchen floor, the hard surface seems to ease
my back and I can feel all my bits relaxing back into their proper
place.
Laundry... a major pain! I mean that literally. The worst is
emptying the dryer. I sit on the floor with the basket in front of
me and fold right into it. No bending no long reaches, no tired arms.
I do not shower, I bathe. Everything is easier sitting down.
Sorry this is so long. I've been dealing with PA since my early
teens and I'm now 47 so I know I have more "tricks" but as they are
such a part of my daily life I just take them for granted. If I
think of more, I shall post them.
Patti

D,
I'm so sorry, I know how bad you must be feeling because what happened with your
son, but please don't beat yourself up because he is ok. Don't dwell on the
"what if's". I know when I was hurting like that and my sister had little ones
who lived with me I trained them to have me stick my fore arms under their
arm-pits and they grabbed onto my arms, and then I just swung them up on my hip
to carry them. Picking them up this way didn't put too much painful pressure on
my wrists and allowed me to still pick them up when they wanted to be held. I
don't know if you can try to do this but I hope you can. The babies really
learned to do this quickly and it came quite natural so hopefully it will work
for you and your son too. Hang in there and I hope you feeling better soon!!!
Denise Axelrod

I had a second cousin die at age 28 of heart complications that were determined
to have been caused by vioxx. It caused her heart to swell to about twice
normal size. This was two years ago. At the time, we believed it was a
relatively isolated case. My brother, an MD practicing Physical and
Rehabilitive Medicine, has told me there are enough good options that if you are
not comfortable with using Vioxx- use something else.
Allison Stein <darkart42@...
option of the
Vioxx study that has everyone so riled up.
He said that since I am an otherwise-healthy
41-year-old pre-menopausal female of acceptable weight
with no current signs of cardiac disease, he has no
problems with me continuing the Vioxx at 25mg per day
or less. (He didn't seem concerned that my father died
of heart disease at an early age.)
His opinion of the study is that it red-flags higher
doses of Vioxx (50 mg) taken for more than 5 days at a
time, especially in patients with other health issues
that can contribute to heart disease and cardiac
incidents.
Until someone does a better study or I have another
reason to quit, I'm going to keep taking Vioxx. I know
that when I miss a dose, I can barely move.
Your mileage may vary, so consult your own docs
regarding possible complicating factors.
-- Allison

joy let me know what you find out from your visit. mine is still swollen a bit
and my neck doesnt hurt quite as bad on that side......

Hi Teresa, Like many people, I too, got confused when suddenly I was faced with
Medicare Part D. I was lucky that I was also on Medicaid. They automatically
added me to UnicareRx w/o me losing my medicare. My husband who is also
handicapped was not so lucky as he has Medicare but doesn't qualify for
Medicaid. The loophole here is that by having Aetna you signed up for an HMO
which they tried to sneak in as part of the package in signing up for Medicare
part D. My husband refused to sign up for an HMO and called UnicareRx and asked
if he was eligible for that w/o signing up with the HMO. They approved him and
now he gets his meds w/o any co-pay or monthly premiums. What's more, Precision
Rx requested that my docs write scripts for 90 days with 3 refills to last one
year. And they will mail it to you wherever you want them in the USA. So, if
you go on vacation or visit family for any extended length of time, they will
mail it to you there. When one signs up with
an HMO, you give up your medicare control to the HMO company who sets up the
rules and you are then limited by the rules of the HMO. If you can get back
control of your medicare, find a pharmacy like mine who will cover your meds.
Walmart, Kmart and Sam's Club all take the Unicare Rx card and you don't have to
be a member to go to Sam's Club pharmacy. Rite Aid, Duane Reade & CVS also
accept the card. That would be the way to go. It is a medical quagmire out
there. That medicare part D thing was a ruse to get everybody on an HMO. My
mom got caught up in that also and was told she had to pay for her follow up
Mammograms while recuperating from breast cancer surgery. She could not go to
her regular PC, but to the one that belonged to the HMO she signed up for. My
mother-in law died from signing up with an HMO. When she got lung cancer, she
was limited to the doc they had and could not go outside the structure of the
HMO for a second opinion or therapy. Within 2 years
she was dead. As you can see, I am totally against HMO's. I am a retired
nurse, so I've seen plenty wrong with them and nothing right. Check it out.
Dolores
Teresa <tmaldonado@...
since I have posted.
Actually, I have been doing well in health so I haven't had a lot of
questions to ask until now. I went on long term disability a few
years ago and then I was told I was eligible for Medicare as my
coverage of insurance. Of course as many of you know, there is now
the Medicare Part D that covers presciptions. Well, I am wondering
if anyone out there on Medicare Part D has encountered any problems
with it. I not only take Doxy for my dermatomyositis but I take
Enbrel shots three times a week for the RA part. Well, like
instructed I signed up for the part D by May 15. I have had a few
prescriptions filled and Doxy being one that is not covered. I went
Thursday to pick up my order of Enbrel and I was told I owed
$1,780.00!! Yes, you read correctly. I called my Aetna insurance and
Enbrel company and was told that I was in the donut hole or
otherwise known as the Gap and I had already used up my limit of
medication money and now I have to pay the next $4,000 to $6,000
before Aetna will pick up again and I will then owe a copay. My
copay was $20.00 until Thursday. Has anyone had this problem and
what insurance are you on? I am lost and don't know what I am going
to do. I am taking my last shot tonight and I guess I get to go cold
turkey. I can apply for assist but it will take 4-6 weeks before I
get an answer and that is if I am accepted. Anyone have any
suggestions besides me calling my doctor?? Thanks in advance for any
advice and input.
Teresa in Texas
DM 8 years this month
AP for the last 3 years
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Hi Allison, YES!!! me too....on my left side,
affecting both my neck and shoulder area. My Doc said
this is part and parcel to PA; not uncommon for that
area to be affected. I wake up so stiff and when I do
rotate my neck (as limited as I am in that area) I
hear the crack eling sound as well. Here I am newly
diagnosed, and I'm feeling so connected to everyone
who is participating on this site....it is comforting
to know that there are others who really do
UNDERSTAND. I find that moist heat helps my
neck/shoulder area and usually apply it every night
before going to bed....hope that might help you too!
Shana

I have had 2 tatal hip replacements and a thired hip replcement [revision hip
lenghening ] the first left and one week later had my right hip done at new
england baptist hospital in boston . the first 3 days after the surgery were
the roughest but i got excellent care and pain management. I had a lot of
problems with nausea and vomiting after surgery . let your anesthesilogist know
if
you have had nausea and problems after surgery from anesthesia. they will give
you something for the nausea and will order something for you in case it
occurs after surgery .after the first week you will improve a little everyday.if
you have any questions no matter what they are you can e-mail me at
pretzelb3@....
sincerely
cathy from massachusetts

I live in Seattle and you can add the following doctors who prescribe
AP--I've seen them all.
Edmonds Rheumatology: Dr. Jeff Peterson
Dr. Philip Mease
Dr. Lisa Davison (an internal medicine doc. who actually told me about AP).
the address on Lutack would be NE or NW

Hi Lea,
I think I remember you from our days of being on this site every day!
Sorry to hear you are not doing good.
I periodically go thru bad times and found that if I change to tetracycline
500 mgms 3 to 4 times a day that in a month or so I can go back to minocin.
I call my GP and tell them I have a sore throat without fever and could they
please order the tetra because it always works for my sore throats.
I have also learned that a refrigerated pro biotic is better to help clean
up leaky gut (we can get it from all the meds we take). I just picked up one
from a pharmacy and took it 2 times yesterday and my hand feels better
today.
Ethel recommends a colon and liver cleanse. I have never had enough courage
to do it but I am going to try maybe next weekend if the is no further help
from the new probiotc.
Hope you find something and do not have to go off the antibiotics.
hugs,
cooky ap 1997

Another Lab that runs a good Lyme test is the Bowen QRIBb test. They can be
reached via www.Bowen.org. The test they use is an antigen test testing for the
organism itself and not the bodies response to an invader an antibody test
which can be a very poor method of testing.
Our blood supply is protected from HIV by an antigen test testing for the
agent itself. Antigen test are better than the standard antibody test. A good
Western Blot, IGenex does a good one can be important in getting a true
diagnosis, as can the Bowen QRIBb.
The CDC has finally said in an article that infectious agents may be
responsible for most autoimmune diseases. My first Dx was Fibro, then, CFIDS,
Then
SLE and finally I was tested by reliable testing and found to have multiple
infectious agents that were introduced into me by a Tick bite. A tick will
annestize you so you don't feel the bite and may never know you were bitten by
one
and 40-60% of people may never get a Bulls eye rash. I actually did but it was
diagnosed as a spider bit and I was given Steroids.
The last thing you want to do with an infectious agent is turn off the Immune
system but that is exactly what has happened to many of us. Emeritus Adjunct
Professor of Laboratory Science, Carol Fisch
In a message dated 8/23/06 10:33:38 AM Eastern Daylight Time,
ehgooding@... writes:
Hi and welcome. You are in the right place and there is help and support
here for you.
The first thing I recommend you to do is get tested for Lyme's Disease...not
just the standard blood test because it's just too unreliable but the Igenex
Western Blot test. Lyme's could be the underlying cause for all your
miseries. And, this is the good part, the antibiotic Minocin is THE ANSWER
to any and all of what you are told you have (read those words
carefully...what you are TOLD you have...doesn't mean they are right but
they have to give you a label in order to give you some meds and blood tests
are sometimes incorrect). Even if you don't have Lyme's the Minocin is
still the answer. I too was falling apart....Graves Disease (I did NOT
radiate), edema, swollen sausage fingers, Raynauds, Sjogren's, Lupus, RA,
did I miss anything....all confirmed by blood tests....finally they tested
me for Lyme's. The standard test came back negative. The better test
(Igenex) came back with seriously positive. I got on the Minocin a minute
after the blood draw (for the RA) and now amazingly all the symptoms are
going away. I still have issues but at least now I'm thinking I'm going to
live. Before the Lyme's diagnosis and starting Minocin, I primarily dealt
with all my symptoms with vitamins, organic food, rotation diet,
acupuncture, massage, PT, homeopathic, etc ... I did take meds for a very
short time for Graves; maybe for six months or less with ever decreasing
dosages....but none of the other stuff. I have a neighbor just diagnosed
with leukemia...taking chemo...not doing well...just found out yesterday she
has Lymes...Lymes is so clever...it imitates so many conditions (see the
website http://www.hopetoheallyme.com/). I suspect she doesn't have
leukemia but the doctor's had to put a label on her altered white blood
count and it seems leukemia is a new favorite label. It scares the stuffing
out of people too and that makes them even more docile to the doctor's
advice. Before the leukemia she was told she had fibromyalgia...so all that
to say Lyme's is clever and most doctor's aren't. !
My advice is to hang in there, see if you can get the Lyme's test first and
right after they draw your blood start the Minocin. I hope someone else
will post re the methotrexate...I think you need to go off that but
slowly...I may be getting it confused with another med...not my area of
expertise other then don't take anything you don't have to take. And don't
let a doctor scare you that Minocin is harmful....many of us have been on it
for YEARS and expect to be on it for LIFE (on maintenance dosages)....
And again Welcome! You are where you need to be. We have been waiting for
you and others to find us so we can help you. If your internist will not do
this for you someone on this group can help you find someone in your area
that might. I'd be tempted to take all the kids and trap the doctor until
he gives you what you want. Twenty minutes of active kids...I'm thinking
he/she will do anything to send you (all) on your way. That's supposed to
be a joke so I hope you're laughing. Regards, El

Thany you for sharing your story with me.We're just starting 'the
journey',but from reading the postings we now know that it won't
break us.
All our loving thoughts
Leanne (taschic6)

Well, I got good results on my MRI. The clavicular joint head showed
improvement since the last MRI in 03. So why does it still hurt so dang
bad?? I have pain in shoulder, clavicle area and sometimes up into my neck.
Along with my feet being swollen and hurting.
My husband, said, She she says your better better....big sigh.
I think that is what hurts the most is that he doesn't understand how depressing
it is too hurt so bad for so long.
Joy

Thank you all so very much! You really comforted me. I so very appreciate your
taking the time to email.
I am feeling better today. My right hand/ wrist is pretty much useless, the
left has problems too not to mention the rest of me. But I am in better spirits
thanks to you!
My husband was really understanding about what happened. That made me feel
better too.
Lawrence, Good luck! I am rooting for you. Thanks for letting me whine.
Leanne, that email was as good as any hug!
Denise, I do something similar but I think your way sounds better. I will give
it a go. BTW Congratulations on your impending move!
Karen, I have a weird name and no one can ever spell it so my friends usually
just use 'D' the first letter that is why. I am from Spokane, Washington but I
have lived all over the state. I have family all over the Pacific Northwest.
Where are you?
Thank you all again!
d

Hi Allison,
It is so interesting that you shared this ~ I have been having the exact same
problem and wondering if it was tied to PA. The Remicade and MTX have almost
completely fixed the pain (major flare) in my legs, feet and hands, but I still
have pain in my lower back and lately, the area you are speaking about.
Have they shared with you how this "form" would be treated differently?
Thanks!
Karen
Allison Stein <darkart42@...
I hope they take a good look at your cervical spine.
And MRI finally identified the source of my
head/back/shoulder pain being the soft tissues around
the c3 vertebre. I feel it up into my head behind my
left ear, and down into the left shoulder (back) and
collarbone (front). From what I've been reading,
having PA in the spine opens up a whole new can of
worms in terms of which treatments are more effective.
Let us know what they find and what they recommend.
-- Allison

Dear sweet, wonderful Fran, God Bless You for enduring such a horrific
experience. I am sooooo sorry you had to go thru such an event. The Dr's you saw
are an embarrassment to valid medical persons all over the world.
ONE day, people will understand, will have good solutions, and at the very least
some compassion.
be well, know you are cared about.
love annie and the pugherd

Linda,
I'm getting ready to go on my trip to Brazil. I'll check when I get back
Take care,
Ute

Hi Gloria,have you seen this.It is news from last year butmight help.
Lynne G

Fran, Kathy, and Maureen
Thank you all for great advise. I'm back at work from the greatest trip I can
remember taking. My boss called a local hotel where we do tons of business and
they sent their van to pick me up. They arranged everything with the airlines
and had an escort waiting for me when they got me to the airport. Taking a hint
from what they did, I spoke with the conceigere (spelling?) at the hotel in
Minneapolis. WOW! I got the same treatment on return.
I didn't have to lift a finger. Everyone was helpful, concerned about my travel
experience, and very courteous. Lessons learned... Don't be afraid to ask for
help AND don't be a bull head and try to do everything yourself.
Because of the lush treatment during the traveling phase, I was in minimal pain
and could actually enjoy the conference ~ somthing I didn't really expect.
BTW, on one flight the airlines was able to put me in a row where no one else
was sitting. On the return flight I was "bumped" up to business class. Looked
like first class to me. lol Not bad for deeply discounted tickets.
Again,
Thanks to all.
Sandy swOhio
Fran Mishler <fran@...
Dear Sandy, I think Kathy said it all in your recent email. The only
suggestion I have is, if you can't afford to fly first class, and who can?
You can always ask to sit behind the first class section near the exit
doors. Normally there is extra leg room there and you don't have someone
crowding you in front. It's great if you have to stretch your legs. The
seats aren't always available, but it's worth trying to get them. Good
luck. I hope you have a great trip. Love, Fran

Hi Armen,
Welcome to the group. I'm sure you will be a big help to a lot of people
here.
Martin

Hi everybody! Well I wanted to thank you all again for the help with the
carpel tunnel advice. I just saw my pain management doctor who showed me
the MRI of my cervical area and he is convinced I have spinal stenosis,
which basically means something is pressing on the nerves. Have any of you
in all your pains with your back ever had your hands go numb or burn with
pain? My new doctor seems to think I might not even have erythromelalgia
and it might be all from this pressure on my nerves. I guess I have some
really bad bone spurs and I get to go next week and see how bad the lumbar
area is...OH Goody!!! He also said I osteoporosis in my back which of
course is always more good news...NOT! But he did say that it isn't too bad
and I need to stay on Calcium and take one of the new drugs on the market
for osteoporosis. So I guess I need to add one more drug to my already huge
list of drugs I take daily.
The Good News is he said I will need surgery, but not for a few years. Right
now I know I'm not mentally ready for surgery. Like I've said before I'm
not good in hospitals and becomes "the bad twin" when I get in there....lol.
My husband pretends half the time we aren't even married or he doesn't know
me...lol. I remember once when I was swearing at one of the doctors and my
husband said, "She's out of her mind with pain and doesn't realizes what she
is say"...lol. He was so embarrassed. I just said No I'm not and quit
hiding behind the nurses! Soooooo Surgery is out for sometime...like
probably never I hope.
Anyway, they told me it looks like osteoarthritis in stead of PA or RA in my
neck, but it seems lawfully strange that all these bone spurs have been
growing like mad since I developed PA. I'm trying to keep my hopes up but
at the same time not get too excited that a simple cortisone injection or
epidural would take the pain and burning away in my hands. That would be so
incredible I can't imagine what I would do first. He also thinks the pain
in my left leg that constantly swells and has edema so badly might be
bothered by the same thing. Does anyone know the difference between spinal
stenoiss and Spondylitis?
Well he is also X-raying my wrists to be sure we aren't missing anything
there and another X-ray of my jaw. That is the one that always blows them
away. Well any advice as usual would be great. My hands were really bad
today and I have no idea why. I didn't over do it since I didn't move at
all yesterday due to fatigue hitting me like a ton of bricks.
Well thanks again in advance for all your help. You guys are so great and
make being sick all worth while..lol.
Love, Fran

Hi Tamara,
Glad to hear your baby is ok. Good move getting away from that
idiot........I mean Rheumy.
Hope the new one is better.
Sorry to hear that the P is on your hands now. It is hard enough without
ignorant people making things worse.
Take care,
Martin

Sorry Fran,
I can't help. My problem with the thigh is at the back. Hopefully someone
will be able to.
Good luck,
Martin

How do you fine a good lawyer tha specializes in this?

Hi Debbie,I was on Zestril and my doctor switched me to Benicar 40mg and
it is working well.She wants me to get used to this med as she will be
putting me on MP pretty soon. Lynne

Hi Jim,
You are right about missing meds. Even if I miss the anti-inflammatory by
hours i then pay for it for even more hours. You would think we wouldn't forget
eh? Lol
Take care,
Martin

I will proudly admit on his behalf also, that as soon as they found a miracle
drug for him, he went off SSD... Wish everyone did that so the system was not
impossible for those that really need it and are in too much pain and haze to
have the strength to "work it"...
Glad you finally were able to suceed!
Karen
susieesue <susieesue@...
---
Hi Karen,
Thanks for your message. I can understand it better now. I know
what you mean about some people not needed SSD and getting it. When
I went to my first Dr. visit that they sent me to I was the only one
in the waiting room with a cane (I now walk with a walker and use a
wheelchair)and most of people were younger than me (43); I thought
maybe they had heart conditions or something? I don't know.
Anyhow thanks and God Bless, Sue in Michigan :).

Sue, I am so sorry I did not mean to leave you out. I did read your welcome. I
just overlooked it when I was sending out Thank you(s) I will do better. I
hope you are feeling better. I just love reading all your emails to everyone,
I have learned so much from you and others in this group. It has been good for
me to see that other people are in pain just like me, some alot worse. I took
my third dose of Enbrel today. I feel so much better. I am still taking the MTX
7 pills a week. It will be a while before I go see the Grandchildren.
Elaine

Are you okay?
Hospitals are scary, intimidating places, but when you wake up,
you'll feel like a new woman. Just imagine the pain gone, you won't
know yourself. The waiting is the worst part. You have nothing to do
other than watch a clock and worry. I'm sure you'll be fine.
Lots of Love and best wishes
Leanne

Does anyone know if Dr. Whitman in NJ or Dr. Burton in PA will
prescribe an antifungal along with the AP. Been on Mino for 5 yrs for
a mycoplasma(+) RA, but feel the need to round out my treatment as I
think fungal issues are at the root of my remaining problems.
Thanks for any input...
peggy

Hi Joy...
What to say except I (we all) share your pain ~ even when we are lucky (as I am)
to have a wonderful partner and daugther who are very understanding and caring,
it is a difficult thing to live with. The seemingly endlessness of the pain and
the TIREDNESS can be so overwhelming and limiting ~ even if it is just in MY
mind and body, not theirs.
It is simply amazing how much energy it takes (sometimes more than I have) to
great the day with the attitude of finding joy in the simple and good things of
each moment. Sounds silly, but I work very hard (and yes, often fail) to take
note of what I am given each day ~ the beautiful sunrise (well, okay, so I
probably end up sleeping through most of them since I was busy enjoying the
early morning hours of a restless night), but the sun reflected on the dew of
the grass, the autumn colors slowly drifting downward, my daughter's laugh, my
dog's fierce loyalty ~ well, you get the picture. For me, it helps get through
the tough times and I'd rather put the energy into trying at that and even
failing than sometime else (well, maybe a glass of wine every once in awhile ~
boy, do I miss that!!) :)
Best Wishes,
Karen
Joy Hoormann <jhoorm01@...
Well, I got good results on my MRI. The clavicular joint head showed
improvement since the last MRI in 03. So why does it still hurt so dang
bad?? I have pain in shoulder, clavicle area and sometimes up into my neck.
Along with my feet being swollen and hurting.
My husband, said, She she says your better better....big sigh.
I think that is what hurts the most is that he doesn't understand how depressing
it is too hurt so bad for so long.
Joy

Hello Everyone.
My name is Deb and I was diagnosed with PA about 3 years ago, though I was
symptomatic for about 5. I was diagnosed with Fibromyalgia 2 years ago, as
well. I have been on methotrexate and NSAID's for the last 2 years, and was on
Prednisone for a year before that. I hate the MTX side effects, but must admit
that, at least for the time being, it is doing its job.
I am wondering if anyone else on the list suffers from a rash other than the
typical psoriasis? My psoriasis has never been the typical scale/plaque kind.
I do get itchy bumps on my elbows and knees, plus the very attractive dippity-do
nails, with ridges, pits and occasionally thickness, on my finger and tow nails.
However, I also get odd bumps on my body that have common characteristics. They
start out like a simple bump, looking like an ingrown hair or something, then
get thick like a keloid, sometimes blister, and take forever to heal. They
occur mostly on my scalp, elbows, knkees, upper arms, and infrequently on other
places. Definitely not zits, but definitely "something". I have had them come
and go for as long as I have had the disease. I thought for a while that it was
from a compromised immune system, or a side effect of the meds I take.
From being a lurker for the past few days, I just want to say that I feel that
this is a very supportive list and I look forward to being a part of it and
getting to know everyone.
Deb
New Mexico

Dear Group,
Lately I have been really suffering with my hands. I thought it was PA or
RA, or which ever one it is I have. But when I saw my doctor last week he
said it was carpel tunnel. My left hand hurts so bad I could scream. It's
numb, but at the same time painful if that makes any sense. It's also for
the first time really weak, and I keep d