When I take Plaquenil, I can feel it "go to my head" about an hour
afterward. (I've only been on it about a month.)I feel sort of odd,
am not as mentally sharp and just feel a bit "off." At home, it's not
an unpleasant thing, but I'm uncomfortable about having this reaction
at work. I also get very thirsty from it. Anyone else?
Sierra
Hi all. I hope everyone's holidays were/are nice and a soon to be
Happy New Year. I was just put on the triple combo of methotrexate,
plaquenil & azulfadine (sulfazine) because methotrexate on its own
had stopped working sufficiently. I hate being on so much (not
because I don't believe they help but because of so many different
side effect possibilities.) I would appreciate any advice from
those on this combo and any personal experiences are helpful.
Thanks tons! Sarah
I hope everyone had a Merry Christmas. It went great here, but glad
that it's over. I still have my congestion in my chest, getting kind
of worried about it, being on the Humira. I took my second injection
Wednesday, my rheumy told me to continue it, and just take some
Tylenol Cold medicine. I would like to find out about something
going on, wondering if it might be related to the RA. At the tip of
my fingers, they are getting really rough around the joints. It's
not really from dryness, or chap skin. Also my two big toes, on the
top,(joint area), it's like the skin is brownish and hard. Kind of
weird, in the exact same spot on each big toe. Thanks, Tawny
Hi there,
I need to spend some time away from the computer and stop obsessing
about my health. I hope to make some postive changes and get some
grief support for my dad and sister's deaths. Wish me luck and I may
be back.
Blessings,
Kristina
just thought i would pop in to wish everyone a very merry christmas!
hope its safe and hope everyone is having a great time with their
loved ones.
I am sorry that I haven't been posting to much, have been down with a
terrible cold, today I am really flaring. All the stess I guess.
Everyone is right, please stay with us. We all our joined in this
way, and we need each other. I know from experience about what you
have to go through to get a diagnose. I would like to share what I
went through on Monday. My daughter who is 9 years old, has been
experiencing joint pain, unexplained fever, and a rash that comes and
goes. I took her to the doctor, who told me, I am sure she will have
it since you do, bring her back when she is really flaring, and I
will do some blood work on her. And then showed her some exercises
to do before gym, because of the pain she is having. I am just so
upset about the way some doctor's treat patients. Yes, I am going to
find another for sure. So don't give up Kristina, we are here for
you my dear. I hope that you have a Merry Christmas, have fun, and
be careful, Tawny
I send you and yours a wish for a joyous and peaceful Christmas!
Love,
Kristina
Thanks for making me feel so welcome
I would like to wish everyone a Merry Christmas, take care Tawny
Melissa, I haven't heard from you, I hope that everything is going
alright. You are in my prayers dear, Tawny
Hi everyone,
I found out today my test for RA was negative so now the MD will
explore the possibility of Fibro. I feel I should probably leave the
group now that I know I do not have RA. I enjoyed learning here and
wish you all a healthy, Merry Christmas and Happiest of Holidays.
Blessings,
Kristina
Husband has these at times, very bad. He does not have RA. He takes a quinine tablet which he has to get by prescription. Of course you need to ask your doctor if this would be o.k. in your individual case.
Peggy
Is it common to have pain with no inflamation in RA?
Just wanted to say thanks to all that have responded to my help call.
i got enough info to make a decision. I am going to try the Enbrel. I
also want to let everyone know that its great to be able to get
feedback from people in the same situation as i am, so keep up the
responses. thanks again.
What life changes have you folks made to minimize stress? Has it been
difficult to give things up? The reason I ask is because I started a
master's program and had a challenging class last semester. I had to
do a final group project with some classmates who were only available
on week nights, so we had about 6 sessions of meeting from 5:30-9:30
p.m. (after a day's work); the whole thing was exhausting and of
course it was hard to keep up with my homelife with that going on.
I felt worse physically than I ever have (though adrenaline got me
through). So...I'm assessing whether I want to continue with school
in light of my physical health. I would be sad to give it up. I'm
taking the next semester off to think about it and to rest. Thoughts?
Sierra
In an effort to provide support for people who speak languages other
than English, the Global Health Network has added 4 new support
groups.
Chinese
I've just joined this group and wanted to say Hi! Hi! I have RA and
at the present time I am taking Sulfasalazine and Prednisone. I also
take Darvocet at night sometimes so I can sleep. I also have
Hepatitis C so my treatment options may be limited because of the
liver problem. I've just found out about the C so the doctors are
still running test and stuff. My main problem with the RA is in my
feet. They had gotten so bad I could hardly walk. Since starting the
Prednisone they have been 100% better. My doctor says it's just a
bridge till something else can start working.
OK, enough rambling on. It's great to find this group, I know I'll
learn a lot.
Hi! I am 27 years old and have been suffering with awful joint pain
since 2002. In March of '02 a 6mm nodule was found on my right mid-
lung, and said to be a chronic inflammatory foci. In April of '03,
blood work was done, and I had an elevated Rheumatoid factor (30).
I also have this round lump underneath the skin on my left
elbow...it is hard, but does not hurt. My worst pain is in my
knees, I have difficulty walking up and down stairs. Other areas of
pain are my feet, hands and shoulders (+ weak feeling). I do not
have swelling, but ALOT of pain. I have seen a neurologist to rule
out any nasty neuro diseases. What do you think? Thanks.
Holly
Hi,
I am wondering if it's possible to get a doctor who can remember me.
Even a vague memory would make me feel great. Every time I see a
doctor, any doctor, it's like the very first time they've seen me.
I'd even settle for a thorough review of the chart. Last time I saw
my rheumatologist he thought it had been three years since I last saw
him, but it was only one month. When I told him about going off of a
med that was giving me trouble, he gave me a look like I shouldn't
have done that--until I said, "I called." (I didn't want to embarrass
him by adding: "It's what your nurse told me to do.") I have set up
a second opinion appointment in Jan. with a different rheumy. Any
tips on being remembered and getting good care?
Sierra
I met with my rheumy yesterday and we have determined that the
methotrexate is not working. Therefore he has given me the option of
Enbrel, Humira or Remicade. From what i can see, none of them are
much fun. But what i need to decide is which is best for me. Any
suggestions or comments from those that have taken these treatments.
I am to call him soon with my decision.Im just not sure i can give
myself injection.
Hi,
I'm one of the lucky ones that Methotrexate + Celebrex works for with
no side effects.
I'm 57, work full time, and am able to do most ordinary, everyday
things if I'm careful. I've been doing internet dating, and have met
some really nice guys, but as soon as they look up Rheumtoid Arthritis
on the web, they etherize. I'd like to meet some men who have health
issues themselves, so that they'll understand (not MENTAL health
issues, there are plenty of those in the Personals :-) I live in
Albuquerque, NM. Does anyone know of a support group or Personals
group here?
Thanks,
Jan
If you ate a lot of sweets and junk food....theirs your reason for the pain maybe......best way to fight back is to drink lots of water to flush it out of your system.
Happy Holidays!
Trish
www.herbals-unlimited.com
From: gloriarex@...
Subject: Re: painful morning
I'm going to allow myself just a bit of self-pity here. I've been doing so
well lately!! and now this morning I am hobbling back and forth and need a cane.
Over the past week things just started to go downhill. Stress at work has
been high. Usually it takes about a week or so to affect my body. But my meds are
the same and I'm still doing everything I was when I was feeling so well.
Darn! Maybe it's eating too much junk, too? Holiday parties and stuff you know.
Okay, end of sob story. Thanks for letting me vent.
gloria
I also can atest to the diet change.....and it works to keep the pain away.
I "usually" do not eat bleached sugars or bleached flour and i drink a gallon of water a day.
You will find bleached sugars and bleached flour in almost all processed foods.....so i make every thing from scratch.
Also green peppers make me hurt and aspartman sweetner and the pink stuff....so i stay away from the pink and blue stuff.
I try to excercise daily......light weights one day, bike the next, walking the next and rotating them.
I also take handfuls of supplements..........I am 48 .......diagnosed in my mid 30s with RA and I am on no meds...........and doing well :
Just wanted to say that diet change does work to ease the pain......in my case....it keeps the pain away along with excercise and supplements and a gallon of water daily.
God Bless Everyone
Trish
www.herbals-unlimited.com
Hi all,
#1 on my Christmas list is help with
the synovitis I have going on big time
with the RA. My right hand is a mess!
Is anyone else dealing with this and
if so, what is being done to help?
Happy Holidays to all
Shirley
I'm not sure if anyone mentioned iron. With RA you often get
the "anemia of chronic disease" and anytime I have stopped taking
iron supplements (ferrous gluconate in my case) I become very
tired/lacking energy. I take 2 a day though the doctor actually had
recommended 3 - 3 set off the stomach problems.
Luckily the gastrointestinal system has improved - gall bladder
removed and started drinking lactose free milk. The difference due
to the milk was amazing. I was ready to try a dietician just to get
a diet of things I could eat and now as long as I am careful and
moderate it's fine. (I found out moderate does not include a Harvey's
cheeseburger and fries with chocolate mousse cake)
annette
It is so good to hear that Saddam was caught. My daughter is in the
military, and I am so glad that at he has been captured.
Hello J,
This is Stephanie in VA. Where in PA are you? I graduated from Mansfield University in north-central PA in 1999.
I've had arthritis for 4 years. I was diagnosed with Reactive arthritis (RAA) during my last semester in college when I was 22. My current meds are: Azulfidine EN (4000 mg/day), Prednisone (4 mg/day), Ibuprofen (2400 mg/day), Folic Acid (3 mg/day), Methotrexate (20 mg/week) and Remicade (300 mg/6 weeks). I've also tried: naproxyn, vicodin, celebrex, vioxx, Enbrel, doxycycline, & tylenol.
Unfortunately, your response to the steroids is common -- they mask/control the pain but do not stop it from happening. I had a great rheumy in PA -- Dr. Thomas Oleginski. He is at Geisinger in Danville. I saw him at Robert Packer teaching hospital in Sayre, PA. He's the one that diagnosed me (I still keep in contact with him). Chondroitin and Glucosamine have shown to do well in studies of patients with osteo arthritis not with RA. My boyfriend has RA and fish oil capsules have helped him. He follows the directions on the bottle (I think it is 2 or 3 per day).
I agree that you may want to switch to Ibuprofen from naproxyn. It worked better for me & didn't give me as much stomach upset.
I haven't used a chiropractor but I've found deep tissue massage in the months opposite from my Remicade treatments works well for me.
Arthritis caused an all over achy feeling which may explain the leg muscle pain -- however fibromyaglia is a type of arthritis that affects the soft tissues connecting the joints. You should talk to the rheumy about it.
Take care!
Steph in VA
hi all..well for those of you that know me, I just wanted to give
everyone update. As you know, my wife has had RA for the past 12
months. Shes 29 and started taking remicade in March. The Remicade
was helping a lot with a combination with Methotrexate and Folic
Acid. She received her last infusion in Oct and at that time, she
went in a week early because she was hurting and they also increased
the dossage from 3mg/k to 5mg/k. 2 weeks after the infusion, she
was still hurting and it looks like her body is building antibodies
against the Remicade. Also, 3-4 months ago, she started getting
rashes the size of a quarter on her back, behind the ears and now on
the side of her face and chest. they said it was drug induced LUPUS
and that all the other autoimmune drugs would cause the same rash.
We have found that it's being caused my the Remicade and theres only
like 8 cases of this reported and when its reported, they report it
in dermatology reports not rheumtology reports.
Now its back to the drawing boards because shes on increased amount
of methotrexate, folic acid, and steriods - prendisone (20mg per day)
If anyone has any ideas or thoughts, please let me know..i dont want
her to take the 20mg of prendisone beacuse of the long term
effects. Also, any ideas on other treatments would help. I've
heard a lot about the food book, but cant get my wife to belive in
it because she never hurts after eating any particular food. Any
other alternative treatments..acupuncture..etc.
Thanks
Paul
Hi Everyone. This is only my second tme posting here and I have a
question. I started on Arava this week because I wasn't getting a
good response from the Methotrexate (have been on plaquenil and
prednisone for months)( and my Humira was upped to once a week:3rd
dose so far) My question is about the Arava. It is making me feel
very nauseated. I am on the starter dose of 100mg for 3 days, then
drop to 20 a day. Does the nausea get better on the lower dose? Has
anyone else experienced similar problems from Arava? I don't want to
write it off just because it makes me feel sick to my stomach,
especially if it eases with time. I really need this and the Humira
to start working as I am in a bad flare and am having a hard time
functioning right now. Funny how the medicine we have to take to
make this better makes us sick;-) If anyone else had been on this
medication, I would love to know how it worked out for you. Thanks
for any info. Hope everyone is hangin' in there!
Jen
Hi,
I have gotten some relief in the last few days. The RA seems almost
isolated to my ankles and feet. Sometimes it feels like I have real
bad sun burn on my feet on top--strange isn't it? I have used a
whirl pool tub and a portable foot soaking tub -- the water therapy
seems to have helped alot! I am also exercising again. I do yoga!
Yoga Journal has a web site in case some of you are interested in
learning more.
I switched to over the counter naproxen and I am not as nauseated
now. I have another appointment with the primary care doctor on
Tuesday. I am not able to get a rheumatologist appointment before
January. But right now, I don't feel like I need much medicine--not
sure why this is happening, but very greatful for less pain. I have
also cut down on eating all types of meat and switched to tea
instead of coffee.
Maybe my reduction in pain won't last, but I am grateful for a good
day today!!!
Melissa-you didn't say where your RA is or if it just hurts all over
but I wanted to caution you about using heat near your belly since
you are pregnant. Stay away from heating pads, therabead pads, or
real hot baths involving your abdomen until you consult with your
OB/GYN. Heat on the abdomen can sometimes bring about early labor.
There are plenty of single mothers out there and you will be a great
mom and in most all communities of today there is alot of support
for single moms!!!
My girlfriend has been diagnosed with RA, but other doctors she's seen haven't been sure that's exactly what it is, so take from this what you will:
About 6 weeks ago, on the recommendation of an M.D, she began a 120-day raw-organic-plant food only diet, and has noticed a significant reduction in pain/inflammation. She started with two weeks of fresh fruit/veg juices only, and then added solid fruits/vegs. No animal products whatsoever (including milk), and ALL organic, and ALL raw (not even steamed veggies, or brewed stuff like soy sauce). Advocates of this diet insist that it's important that the juices be fresh (home)-squeezed and all food be raw, so as to consume the enzymes while they are still active, and also insist that the fruits/vegetables be organic as to avoid the toxic pesticides rampant in the commercial varieties.
Anyway, the plan is for her to do this diet for 4 months for a complete 'detox', although she may continue it beyond that, assuming she otherwise maintains good health and proper nutritional balance. Now, I'm a hard-boiled, meat-eating New York skeptic who tends to look askance at 'granola heads' and their wacky diets, but y'know, in support of her, I've started going much, much lighter on meat and much, much heavier on fruits/veggies, and I gotta say that I (who thank God, has no major health issues, knock wood) can notice a real energy difference.
Now, please be clear that I'm not advocating this diet, because it's too soon to tell, but I just wanted to share the experience for whatever it's worth and ask whether anyone else has experienced dietary changes of ANY kind making any difference with their RA?
JB
Ok I need some advice again.
Does this RA stuff knock you down to where you can't get up. I've not
been able to get out of bed and it's not due to the pain.
Is extreme fatigue part of this lovely little diagnosis? Why am I
sooooooo tired and how do I get rid of it?
Angela
I've been reading the posts about how much everyone hurts. I take Humira, Methotrexate, Prednisone - you know, the works. But I also do whatever kind of exercise I can. I do Pilates, I try and get on the exercise bike and do weights. I do a lot of stretching (which feels really good). I do think that trying to get your body to move helps with the pain. There are days when I'm too tired to do much. But I keep weights at my house - 10 pound weights, ankle weights, exercise bands. Even when things are hurting, I feel better when I can do some movement, even if it is only stretching. Maybe it's just psychological - I don't feel like I'm giving into the disease quite as much. I realize it's a day to day thing. But attitude is so important in dealing with a chronic disease. Whatever I can do to take back some part of my body helps my attitude and gives me hope for better days ahead.
I'm 38 and have been on Humira approaching 3 months. I haven't
noticed any side effects from Humira including injection site
reactions. I was quite nervous about injections when I started, but
am getting used to it more. For me, I found injecting into the
thighs were fairly painless. I do get some stinging during
injections though.
I also notice that the effects start wearing out around 1 1/2 weeks,
though as I'm approaching 3 months, it's not as noticeable as when I
first started. My RD said Humira builds up in your system to a peak
at 3 months. Maybe that is what's happening.
I did read from http://www.rxabbott.com/pdf/humira.pdf that "The
systematic clearance of adalimumab is approximately 12mL/hr. The
mean terminal half-life was approximately 2 weeks, ranging from 10 to
20 days across studies." Whatever that means. I know one person
taking Humira every 10 days.
I felt all the RA fatigue lift the first morning after taking
Humira. My swellings came down maybe 50% after 1 week. When I took
my blood test after 1 month, my ESR dropped from the 40's to normal
at 10. I've reduced my methotrexate from 12.5mg to 7.5mg as a
result. I don't feel any benefits from methotrexate, only side
effects. I was taking methotrexate alone along with an NSAID and
folic acid before starting Humira. I've also recently dropped my
NSAID and am doing alright without it. I did have a flare when I was
on Humira and I still get some soreness in certain joints.
I was diagnosed about 8 months ago with RA, but had symptoms for
about 2 years. My new RD says it could be Psoriatic Arthritis or
gout rather than RA. The Humira cleared up a small psoriasis patch
on my scalp as well. I do have bone erosions in my finger and
probably in one toe.
Good luck to you all,
Mike
Hi Everyone, I am 34 years old and mom of 2 teenagers. I have finally
been
dagnosed with RA after over a year of being sick with weird things,
having a fever all the time, etc. I am on Humira 40mg. weekly,
Plaquenil 400mg a day, 10mg prednisone, Arava, Lasix and Percocet. I
have only had two doses of Humira so far and my Rheumy changed it to
weekly because my joints are still so swollen. I saw your post Tawny
about the Humira, but I haven't noticed any side effects from it as
much as from nausea from the Arava. I was on Methotrexate but it did
not agree with me at all. My doc is not happy with my response to
meds yet and neither am I. I am finding it hard to keep a positive
attitude after all the time of everyone thinking your nuts and then
they finally figure out what you have and nothing is working. I feel
bad for my kids, I used to drive them everywhere and do everything
for them (I guess I kind of spoiled them) and I can hardly stand on
my feet for more than 15 minutes at a time now. I really hope
something gives soon. Oh well, Sorry, I just had to vent. It's hard
to talk to your family about it because of all the extra burden put
on them and they can't understand how crummy you feel because they
haven't been through it. I am glad that this group is here and
thanks for letting me rant. :-) Jen
Hello, I am brand new to this group and I am just fumbling around
this website today for the first time.
I have been on Humira Injections going on 4 months, and I too have
noticed that the injections last me about 1 1/2 weeks also. I am in
a flare up now and have no energy. I did well for a couple of months
with no flare ups. I just gave myself an injection this morning
(Dec 10, 2003) and I am hoping and praying that I get out of this
pain (in my hands and wrists and shoulders) and my energy level comes
back up.
Two weeks ago after my previous injection, the viral cold I had
turned into a bronchial infection and I was quite sick and had to go
to the emergency room on Thanksgiving day. Feeling better now with
the cold symptoms, but my energy is the pits.
I've also been experiencing a lot of muscle cramps in the body for
about 3 weeks. I ran out of my multi vitamins for a few weeks and
now I just bought some this week to get me feeling better. I know
that I have to take cal/magnesium 2 x a day. I know that I need
potassium which is included in the multi vitamins. My legs also ache
if I stop any of these supplements.
All in all, I feel Humira is much better for me than the Methotrexate
that made me quite ill. I now take Mobic every night and need to use
Tylenol with it. I also take Celexa antidepressant (15 mgs per day)
which has helped me tremendously to have peace inside and feel more
emotionally stable. I take 50 mgs of Trazadone to sleep like a baby
at night is also a blessing for me.
I am only on 2.5 mgs of Prednisone every other day. Today I go for a
blood test to see if I am inflamed since I am in a horrid flare up
this week.
God bless you all.
Please write me if you wish.
Love and Light... Eva
Hi Melissa, Tawny, and All,
The therabeads seem to work okay for a little temporary relief. The
therabeads are in a pad nad the pad is small. There is a place on
the internet that has a larger one but I decided to try the small
one first. I bought it at the local drug store. It is moist heat
and the pad stays warm for about 20 minutes. It's nice when you are
watching TV and don't want to deal with a heating pad cord!
The naproxen is making me sick--my stomach hurts alot--even when I
take it with food. I am going to try the over-the-counter one which
is half the strength of the perscription naproxin that I was
taking. My primary care doctor is stalling me until I can get to
the rhematologist in January. The primary care doctor doesn't seem
to know what additional tests could be run to make a definite
diagnosis.
Additionally, my spouse is upset about the whole thing and called
the doctor himself!! He doesn't believe that I could have RA or
another autoimmune dissease. I told him genetics plays a factor and
my paternal grandmother had it, so this could be where I got it
from...but he is having a difficult time.
I' am sick today...on top of the RA, I have some type of flu or
virus-so I am staying home from work.
J Sala
PS. (for Tawny)--My Primary Care ran the usual tests--ANA, Lyme, Sed
Rate, CBC, RA. I was told that all were negative. However, I
requested that my labs be faxed to me so that I could hand carry
them to the Rheumi --and when looking at the Sed Rate it appears to
be elevated! It is a 23 (I am a 36 yr old female)
Hi everyone,
I took my first injection of humira today. I don't feel to good. If
anyone has taken humira, I would like to hear from you. Everyone
take care, and be good to your self, Tawny
I am doing much better tonight. I believe my nerves might have had a
lot to do with it. I was light-headed after the injection, but I'm
OK now. Thanks friends for caring, Tawny
Hi, welcome to the group. I am sorry to hear about your pain and
suffering. I hope this group can lift your spirits. I am 40 years
old, live in Oklahoma, and diagnosed with RA last year, among other
medical problems. I have lived with it a long time, just had doctors
that were,(what can I say),QUACKS! So your doctor has not actually
diagnosed you with it yet? Has he ran any blood tests, or x-rays?
What type of steroid were you on? The chodoitin and glucosamine are
herbal. The naproxen is non-steroidal anti-inflammatory drug,
(NSAID). I have been on a lot of different meds, but haven't really
found any that worked. I am on Prednisone right now, 5mg one a day.
I am soon to start Humira, which is an injection every two weeks. I
also take Darvocet for pain, and Prozac for my depression. I would
be careful on some of the medication, check it out first. I am not
to familar with herbal medicine. I watch my diet some, I eat a lot
of veggies, fruits, and avoid caffeine if possible. With taking
prednisone I worry about weight gain. I hope this helps a little,
just know I am here for you if I can be of help, let me know.
Tawny
Hello,
I am new to the group too and new to RA. I am pretty sure I have it
or something very closely related to RA--I responded well to the
steroid medicine my dr. perscribed for a "flare up". But now I am
off the steroid, and the pain is back again!!! I don't go to the
rheumatologist until January 2004...so until then I need to be
patient. I am starting to take the Chondroitin and Glucosamine.
Also I am taking Fish Oil. How much are any of you taking--what is
the dosage?
I now wear "long johns" on my legs, it keeps them warmer, so I can
move around better. I use a heating pad and am trying out
a "therabeads" pad (you just stick it in the microwave to heat it
up).
I am taking naproxen but am not sure how safe that is either???
Are any of you on special diets? Or have found that certain foods
have an effect?
I am also considering chiropractic, any experience with that?
I am also a little confused because sometimes I get pain in my lower
leg muscle--if RA is in the joints, why am I getting pain in my
lower leg?
As you can see I have a long list of questions...I just wish I had
more answers!!!
P.S. I have a 15 month old adopted son so I can't let RA slow me
down.
J Sala
in Pennsyvlania
My mom has RA and visited Delhi. She was given an herbal preperation to use on her painful hands. She swears that this has helped her and now she does not need as many percocets to control her pain. Has any one had any experiance with massage and oils. She does not remember the name.
Melissa Anderson <tinymewy@...
thank you Joyce, that was so kind of you! I hope you are doing well right now...you were so lucky to have had the RA go into remission during your pregnancy! Luv, Melissa
The Little Known Cause Of Arthritis Will Crack You Up
A drunk that smelled like a brewery got on a bus one day. He sat down next
to a priest. The drunk's shirt was stained, his face was full of bright red
lipstick and he had a half-empty bottle of wine sticking out of his pocket.
He opened his newspaper and started reading. A couple minutes later, he
asked the priest, "Father, what causes arthritis?"
"Mister, it's caused by loose living, being with cheap, wicked women, too
much alcohol, and contempt for your fellow man," the priest replied.
"Imagine that," the drunk muttered. He returned to reading his paper.
The priest, thinking about what he had said, turned to the man and
apologized: "I'm sorry, I didn't mean to come on so strong. How long have
you had arthritis?"
"I don't have arthritis, Father," the drunk said, "but I just read in the
paper that the Pope does!"
Hi Melissa
welcome to the group. I know you will find a lkot of comfort and support from the group. Congratulations on your pregnancy.
By the way I was dx with RA when I was 25 and when I was pregnant with my youngest daughter at the age of 28 My RA went into remission
I hope it is the case for you
love Joyce
Hi Melissa,
Welcome to the group, I am also fairly new. Congratulations on your
pregnancy. You must be going through a rough time with no medication
to help with the RA. How long have you known about RA? I am also
looking for friends, so I would be happy to get to know you, hope to
hear from you Tawny
The Global Health Network is proud to offer several new groups for
people who speak other languages. If you speak another language and
would like to share with others, you may enjoy one of the following
groups.
reggae girl
Hello.... I don't know if my 1st post was received or not but my 2nd
was just a test to see if it reached or not. Then i got the message
that it will be posted upon approval. Will that take long? Are all
the post posted upon approval. I sorta could use the info i was
requesting as soon as possible because i will be going on a cruise
tomorrow.
Reggaegirl
Hi, my name is Fiona and i'm 31. I live in York, England and was
diagnosed with RA in 1990. I have ha a total left knee replacement
done and am also being considered for a right hip replacement. I'm
on Piroxicam and Azathioprine with co-codamol and Tramadol for pain.
If anybody knows anything about hip replacements - especially in
younger people - or has had one done, i would love to talk to you as
i am very apprehensive about it and not at all sure whether to have
it done now or try and wait a bit. Any advice would be welcome.
Fiona
hello everyone. My name is Melissa, I am 29, going to be a mother in
June, and I suffer from rheumetoid arthritis. I thought it would be
good to join a group where I could make some really good online
friends who I can talk to, and they can talk to me about what life is
like with this condition. I get lonely sometimes and just knowing
that there are other people out there helps me to know I am not
Good Morning!
Does anyone know anything about the possible heart problems with RA?
I've been having a hard time lately with irregular heartbeats - very
scary! I've seen my GP, had an EKG, the whole deal, but nothing
shows up. She figures it's benign (which I'm hoping!) and tells me
it's actually a very common thing.
To be on the safe side though she's sending me off to an internist
who specializes is cardiac issues as she says there is a tiny, tiny
chance it may be related to my RA.
Anyone gone through this? I'm kind of wondering what to expect...
And how does/can RA affect the heart?? That was a new one on me.
Thanks very much - hope everyone is doing well!
Lynn
My doctor recently put me on Bextra, which I think is a COX-3 inhibitor. I can't take the COX-2 stuff because of a prior history of ulcerative colitis. I think that it is working well for me. I ran out of it and was off of it for about 5-6 days, and was doing okay. But when I started taking it again, I had a bad couple of days. Maybe it takes a while to get in and then out of your system. But I'm back on it and hoping that things will settle down again.
Is anyone else taking Bextra? I'd be interested to hear your experiences.
My rheumy told me that COX-2 meds are all the same, but I've been
hearing from individuals who use them that mobic is eaiest to
tolerate. Comments?
Sierra
Hi Chris
Hope you are not having to bad a day today?
Yes we are very very fotunate to have such wonderful husbands.
I think it is my sense of humor that has kept me going all these years I am always laughing . Some days it is hard as you will know but we get there dont we?
When I read some of the sad stories in the archives I feel like I have been very lucky over the years.
The co-dydromol are painkillers and the Kenalouge is a steroid injection.
(they put it in your bottom) ha ha ha ha. I have tummy probs with the oral steroids.
I am sure the grafts will be fine I will let you know after I have been on Wednesday.
you take care Chris
love Joyce
xxxxxxxx
Hi, Does any one know anything about any possible side effects in taking
both methatrexate and Arava.
I am at present taking 18 mgs methatrexate weekly and 8 mgs prednisone, 20
mgs Arava, .25mcg Rocaltrol and 1100 mg Synflex daily plus of course Losec
and 5 mg folic acid weekly.
I have stopped drinking alcohol as i thought I read somewhere that the
combination could bring on some serious liver problems.
Cheers,
Paulette
Joyce,
It occurred to me to wonder as I sent the last post if your knee replacement was due to RA. It sounds like you've literally been through
H--L. But it also sounds like you somehow manage to keep a sense of humor. I admire you tremendously for that. I feel like such a baby some days, but mostly I have good days. I'm so glad that your family and husband are so supportive of you. That absolutely makes all the difference. We are blessed in having spouses who believe in sticking with us through the "worse" as well as the "better." The only meds you mentioned that I haven't read of are co-dydormol and Kenalouge.
I live in Western New York , U.S. Right now it is very cold and damp here, which seems to play up the aches a lot.
Do hope your grafts will be okay. You have been put through it!!
God Bless,
Chris
Hi everyone,....
I hope that everyone is doing alright today, and relaxing a little.
I have been approved to start Humira soon, I am excited but a little
scared also. If anyone has anything to share with me on Humira,
please let me know. Sincerely, Tawny
A positive rheumatoid factor does not mean a person has RA. People
with other connective tissue diseases, infections, etc. can have a
positive RA.
Sierra
60 y.o. male, generally good health. Pain - I have a chronic static
level of pain in my knee, hips, lower spine the runs from about a 2
to 5 (on a 10 scale) most all the time. Then I get what I can best
describe as "attacks" (lasts a day or 2) where most of my joints hurt
and the pain goes over 5, sometimes up to a 7 range. Can't sleep
when this happens and the only drug that seems to dull the pain is
oxycotin(sp?), 20mg. I can take one at night and sleep, but then I'm
foggy for several days following. No other drug seems to help the
pain, but most of the narcotics really make me foggy, and I hate the
feeling and can't function. Had x-rays, mri's, etc. and 3
different "experts" all pretty say the same thing - we really don't
see anything that we would not expect to see on a 60 year old man -
you don't have severe arthritis. All other tests are negative,
including for rhemuatoid. Comments? If possible, please email me
direct at aKansasGuy2002@...
Hello,
I am new to the group. I went to my primary care physician
complaining of knee and ankle pain and fatigue. Two visits and
three phone calls later...the physician is referring me to a
rheumatologist (possible RA).
My question to the group:
What are the screening tests that my rheumatologist will do? I am a
big "chicken" when it comes to tests and my rheumatologist
appointment isn't until January. That's along time for me to wait
and agonize over things. So far my CBC, RA, ANA, Sed Rate, and xrays
are all normal. I am waiting for the results for a C-Reactive
Protien and Lyme Disease test.
J Sala
With all the flu, and sickness going around, how do we keep ourselves
from sickness and infections. I am beginning to get a little crazy.
I have took my flu and pneumonia shot, and try to stay away from
illness. I am soon starting Humira. If anyone has any information
on it I would appreciate it. Thanks, Tawny
Thanks guys!
The past 24 hours have changed my outlook on the side effects of the
meds. It can't be worst than this pain.
Thank you so much for the positive advice; it's greatly appreciated!!
angela
I just want to take a moment to tell everyone to have a nice day, and
take care of yourself. Sincerely, Tawny
Hi, I just found your group and would greatly appreciate any
advice/info you can give me. I was just diagnosed with RA last
Tuesday and my doctor wants to start me on Plaqunil; has anyone found
any non prescriptive alternatives?
Hi my name is Tawny, and I live in Oklahoma. I have RA, and need
some friends, and kind words. I am on Prednisone at the present
time, thinking about Humira.
thanks, Tawny
Hi I am trying to join this group and I dont know if it working.
Michele
Hi all. I've had something somewhat new happening and could use
some feedback. I've been awakened three times in the past week with
pain so intense in my right hand and wrist that is different than my
usual pain. Instead of bad pain in just the joints, it feels like
nerves are involved (I can't open and close the hand totally and it
feels kinds of that numb fuzzy feeling along with the pain) and the
pain really radiates. The surface of the hand and wrist is slightly
swollen and the skin itself is really sensitive as well. Does this
sound familiar to anyone? I'm pretty nervous because it lasts at
least 24 hours every time it's come on and I have finals coming up.
I'm also calling my doc. tomorrow but you guys often have such great
advice! Thanks tons. Sarah
Oh.. I also thought I read somewhere that the wrists are an area
that is especially worrisome because it indicates a progression of
the disease. Has anyone else heard this or am I mixing up a bunch
of different stuff I've read?
Hi Chris
May I ask when you had your knee op done? Was it your second knee?
You seem to have done very well in getting back to work just after 7weeks!
The tendons in the back of my knee seem to be causing most of my pain.
My wound feels sore but it looks ok.
I dont think we will ever get back to normal. like you I have forgotton what normal is ..lol
take care
Joyce
Happy Thanksgiving from Alaska to all of you out there. I hope you
have a wonderful day and few if any symptoms.
I am so very greatful for all the support and input I have received
from so many of you since I came down with RA.
God Bless you all,
Jay
Hi. My name is Katy and I'm 48. I've been a member of this group but
have not visited it for a long time. I have RA along with
myelodysplasia, a blood condition sometimes called pre-leukemia). I
had sudden onset in January 1997. Went to bed thinking I was coming
down with the flu or something and woke up the next morning and my
whole body from head to toe (including jaws) was so painful I could
not move. After 4 months of being bedridden and running 104 temps and
going downhill fast I was admitted to the hospital for blood
transfusions (I had no iron in my blood) and high doses of steroids
by IV. At first they thought I had Stills Disease because my RA
factor was negative, and still is. After going thru all the medical
treatments, we have finally found something that works for me and
keeps me out of bed and functinal. I've already had both hips
replaced, a year apart one in 1999 and the other in 2000. Not sure
if the hips deteriorated so fast because of the RA, the several high
dose steroid iv treatments or both. I was on 20 mg of Prednisone
daily for so long and have finally been able to taper it down to 5mg
a day. Needless to say, I have developed osteoporosis because of the
Prednisone. Right now I am taking 25mg inject of MTX weekly. Daily
meds are 5mgPrednisone, 20mg Paxil at bedtime, 10mg Amitryptiline at
night and I take 500mg of Hydrea every 3 days which is a chemo drug
for the blood disease. For pain, every day I take 40 mg of Oxycontin
3 times a day and if I need it 2 Norco 1 to 3 times a day). I am on
5 vials of Remicade every 8 weeks. My progress has been gradual but
I am now able to take care of myself, do house chores, shopping and
even drive now. If I pace myself and take rest periods thru out the
day (my fatigue is still horrible) I do very well compared to how I
was even three years ago. Now, the problem I'm facing. With all the
negative publicity about oxycontin and the government breathing down
doctors necks, I am scheduled to see a pain specialist next week. I
think the insurance company is also behind it because the oxycontin
is costing over $400 a month (which I cannot possibly afford if I
didn't have a RX card). The insurance company has to authorize the
doctor to write it for me or they won't pay for it at all. I know
I'm seeing the pain specialist to see if there are any alternatives
to the oxycontin and I am scared to death that they are going to take
me off of it and I'm going to end up an invalid again and be in
constant pain. Before I started taking the oxycontin, I couldn't
even hold a coffee cup or pull up my underwear because of the pain in
my thumbs and hands. And then I'm afraid that if they do take me off
the oxycontin and see that I really do need it and put me back on it,
it isn't going to work any more. I watched the Oprah show the other
day about prescription drug addicts and then I started wondering if
I'm addicted to it. I've been taking it for 3 years. What if I am
addicted to it but I still need it for the pain. I am so afraid of
having that pain again. I don't think I could have survive going
thru all that again. Since I've been on pain medication for so long,
I have built a resistance to it because my 2nd hip surgery was so
painful and had a difficult time getting relief from the doses they
were giving me that the nurse couldn't believe I could be in as much
pain as I was after giving me so much of whatever she was giving me.
Now I'm afraid to have any kind of surgery at all. Maybe I just have
a low tolerance to pain (although I didn't before all this
happened). Has anyone here experienced any of this? Have you seen a
pain specialist and what do they do? I know they like to get you off
of pain medication if they can. Believe me, I really do wish I
didn't have to take pain medication to function. Before getting
sick, I would suffer for hours with a headache before I would even
take Tylenol. What will I do if I am addicted to this medicine but I
still need it for the pain? I have taken Vioxx and still do when I
get really really bad but I'm supposed to stay off these kind of
medications unless I really need it because the other anti-
inflammatories resulted in my developing a huge bleeding ulcer. Am I
just being Paranoid about all this? Please advise me if anyone can.
Sorry this is so long but I really don't have anyone else to talk to
that can understand what I'm talking about. Thanks, Katy
Hi..I'm new to this group.I've had ra since i was 16. I'm 23 now.
Just wondering if anyone has anyone ever used enbrel while pregnant?
Enbrel has been a miracle drug for me and I can't imagine being off
it. any help would be of great help!! Thanks
HI
I HAVE JUST HAD LEFT KNEE REPLACEMENT 2WEEKS AGO.
THINGS WERENT SO BAD AT FIRST INFACT I WAS DOING VERY WELL WITH MOVEMENTS ..BUT NOW I FIND THE PAIN IS WORSE AND THAT MY KNEE IS SWELLING HOT AND BURNING.DONT KNOW IF I HAVE BEEN OVERDOING THINGS
ANYONE HAD SIMILAR EXPERIENCE?
ALL ADVISE WELCOME
JOYCE
HI
I HAVE JUST HAD LEFT KNEE REPLACEMENT 2WEEKS AGO.
THINGS WERENT SO BAD AT FIRST INFACT I WAS DOING VERY WELL WITH MOVEMENTS ..BUT NOW I FIND THE PAIN IS WORSE AND THAT MY KNEE IS SWELLING HOT AND BURNING.DONT KNOW IF I HAVE BE OVERDOING THINGS
ANYONE HAD SIMILAR EXPERIENCE?
ALL ADVISE WELCOME
JOYCE
I have another symptom to ask about... I know that RA can attack
soft tissue and have had related pain in my throat that went away
with increased anti-inflammatories, but has anyone had any problems
with their nasal passages? I feel like mine our continually getting
narrower and that I'm plugged up all the time. I don't have a cold
and my nose isn't runny just can't breathe through it as well.
Anyone had similar symptom?? This has been going on close to a year
now and I guess I always just figured it was a virus whenever I went
to the Doc. so I didn't mention anything. Thanks, sarah
Hi Guys,
I was wondering if anyone in our groups has experienced any strange
rashes or whelps since being DX. I found out about my RA 2 years
ago. Since then I have had these strange whelp and and rash attacks.
They come without notice and last for about an hour. They are red
and look like I have been struck with a whip.
I have discuss these with my doc. He seems perplex by them. Of
course I never have them when I go to his office.
You guys let me know what you think? andybody ever had anythink like
this?
Has anyone on Remicade experienced any breathing problems? I've had them
for several weeks, so my doctor ordered a chest x-ray, but I haven't heard
the results yet. Until I hear, I'm curious to know if any of you had to
give up Remicade because of breathing problems and what your doctor
recommended as an alternate treatment.
Thanks!
Jan
Hi all,
I'm back from my appointment. The official word is: "undifferentiated
connective tissue disease."
Sierra
The Global Health Network along with LMNO Productions (The Learning
Channel) is interested in talking to you about featuring someone on
their "Amazing Medical Stories" program.
LMNO Productions, in Encino, California, is beginning production on
the third season of the popular Learning Channel series ³Amazing
Medical
Stories.² The series will premier in 2004.
³Amazing Medical Stories² is a reality series that follows the lives
of people with rare and surprising medical afflictions and documents
the remarkable medical treatments that are used to cure them.
The type of stories we are most interested in telling are those in
which the medical condition or injuries are severe and the medical
treatment is complex and sophisticated. In other words, the more
amazing, the better. We are especially looking for stories where the
medical treatment or rehabilitation is still in progress.
In addition, it is helpful to the telling of our stories if there is
video of the surgery or medical procedures. In the absence of such
footage, and in the case of a great story, we can use x-rays, photos
or other medical imagery.
³Amazing Medical Stories² is an inspiring celebration of the winning
combination of science and human inventiveness over illness and
disease featuring the amazing work of the physicians and others who
treat these people.
³Amazing Medical Stories² is produced by LMNO Productions for The
Learning Channel. Eric Schotz and Bill Paolantonio are executive
producers. Bob Niemack and Ruth Rivin are co-executive producers.
If you are interested in participating in the show please send me an
email message with your story and contact information.
David Hughes
Founder
Global Health Network
http://www.GlobalHealthNetwork.org
E-mail: dhhughes@...
A week after starting Enbrel I started having mild diarrhea. It has
been over a week and still have it. I broke down and picked up some
Amonium AD and it has helped today. I was up in Anchorage at the time
for an EMS Symposium and may have picked up a bug there.
Has anyone else had this effect from Enbrel? The Enliven nurse said
she has no data on this particular subject.
Thanks,
Jay
I appreciated the responses to my post. It helped just to share my
story "out loud." The appointment's tomorrow morning. My biggest
fear, I think, is that I'll get a diagnosis. I like the hopefulness
of not having anything with a name (because then maybe
it's "nothing"). I also worry about acquiring what will eventually
be "a pre-existing condition," a curse when I switch jobs/insurers.
Will a diagnosis lock me into the job I have now? (I like my job, for
the most part, but don't plan to stay with it forever.) What do you
folks know about this issue?
Sierra
P.S. I liked the Web sites I was referred to; very high quality.
Hello,
I'm 42. I have had a low level, intermittent, undiagnosed problem for
about five years. My primary physical symptom is joint pain. No
significant swelling (a little in the knuckles of one hand), no
redness or heat. I have some mild fatigue. Basically, I feel well. I
have consulted with both an internist and a rheumatologist since the
pain began and have been tested several times for autoimmune
diseases. I have a slightly elevated ANA and RF, but they are both in
the "equivocal" range. I have some definite OA in knees and feet.
About a month ago, the rheumotologist suggested I try Plaquenil.
After 11 days, the side effects of nausea and dizziness brought an
end to that experiment. I see him again on Friday and wonder what
will come from that meeting. Any ideas? I know early, aggressive
treatment is important for RA, yet, is there such a thing as "too
soon"? I'm not sure what is going on with me, but no doubt, time will
tell.
I also recently quit Vioxx after one month because of side effects,
so I'm back to using ibuprofin cautiously--minimal dose, on full
stomach, not too close to bedtime--I've had past stomach pain from
it. I was sorry to have to quit the Vioxx; it worked well initially.
I've always been sensitive to meds, and I worry that this may limit
future therapies. In addition to the 200-400 mg. of ibuprofin a day,
I take dried ginger capsules and fish oil for their anti-inflammatory
properties.
Besides getting traditional medical care, I'm vigorously pursuing
complementary therapies:
-acupuncture
-Rolfing
-massage
-supplements (came up with a plan from lots of reading, but mostly
from the book "Preventing Arthritis" by an MD who worked with
arthritis patients for over 50 years--Zucker?)
-dietary changes (am investigating possible food sensitivities)
I like the work of Dr. Andrew Weil and have taken a lot of guidance
about dietary changes from his writings.
I'm nervous about my meeting with the Rheumatologist on Friday and
would appreciate any thoughts about what I might expect to hear at
this stage of the game. One more question: has anyone experienced
symptoms getting much worse immediately after going off a strong anti-
inflammatory like Vioxx?
Thanks in advance for anything you can offer,
Sierra
Has anyone had a flu shot the same day as you inject Methotrexate? I do mine on Friday's and my Dr has a visiting nurse doing flu shots this Friday. I don't really trust what they say as opposed to someone who has actually done this.
Elizabeth
Hello all. Hope everyone is doing ok. I was originally diagnosed
when I was 6 and between the ages of 21-29, I had minimal flares.
Now we are back in full swing. I am learning about the new injection
medications, Enebral & Humira. I am a bit afraid of needles though.
I just started taking Methotrexate again. Is it possible that the
Methotrexate may help the disease alone? It did in the past, or
should I really plan on trying the new injections? How has it worked
for some of you? Also, I had to have a TB test and got a shot to
prevent pneumonia. Is this something that is normally done now? I
feel so new to this disease again, because alot has changed in the
past few years. It's nice to have a place to read about other people
going through the same thing though. I don't feel as much alone as I
did when I was younger.
Thanks and take care,
Vicki
Hello all,
I haven't been posting much have have done a lot of reading. I saw
my Rheumatologist last week and my arthirits is flaring... been off
Methotrexate since Sept. because of a desire to get pregnant. Well,
looks like I start Enbrel as soon as the insurance company ok's it.
That could be a bit.
I, too, am petrified of needles. I don't know how I will be able to
do it but Dr. thinks (and me too) that that would be the best
choice. Some Dr.'s believe it is ok to take Enbrel during pregnancy
but a Maternal Fetal specialist said no.... I will listen to him.
Very little evidence out there on that and I don't want to risk it
or have my unborn child be a guinea pig.
So Enbrel and increased Prednisone here I come.
-Diana
Has anyone ever had surgery while in a flare up stage. I am wondering if there are greater risks of complications if one is having a flare up? The surgery is unrelated to the rheumatoid arthritis.
Helena
Just a thought/comment. I work for myself now. That was god sent for me because I know my previous employers would have found a way to fire me or run me off and dared me to sue them.
Hi everyone,
I hope you're enjoying the fall weather, and that your body is
feeling OK as we head into winter.
I have a question: I was diagnosed about a month ago with RA, and
have been feeling the stages of grief associated with a new
diagnosis. I'm feeling better now, but the past month was tough --
more snippy with people, and sad and angry. I'm worried that I may
have been showing this distress at work. What makes it harder is
that I work in an organization that helps people with a disease
similar to RA, and the constant exposure at work, and not feeling
like I could tell people at work what I was going through, didn't
help me emotionally. My workplace is great, I just hesitate to bring
in my personal life, or health, when I don't need to.
So, I guess I'm wondering how you've coped with workplace
communication as it relates to your disease. Did you wait until you
had to make workplace accomodations, tell a few people, or just
be "up-front" about it right away?
Hope this is clear as mud. :-)
Jennifer
My g/f had been diagnosed with RA a couple of years ago, but she saw
another doctor recently who suspects that she doesn't have RA, but
rather a 'toxic system'. He's recommended a strict 'raw organic
plant food only' diet for 4 months, the first two weeks of which
would be juices ONLY! She's a pretty healthy eater anyway, but
needless to say, she's a bit nervous about such a radical change in
diet.
Has anyone else had experience with a similar alternate diagnosis,
and/or had any experience with these de-toxification diets?
Hello, I was recently diagnosed (last week) but have been suffering
for 2 years with Rheumatoid Arthritis and have no idea of the
prognosis. I got started with plaquenil and medrol a couple of days
ago. Can somebody please guide me on anything I can do to feel
better? my main problem is the fatigue and soreness. I would also wan
to know if there's any special diet that would make me feel better.
Any help is really appreciated. Thank you very much!
Regards,
Claudia
I took my first dose of Enbrel today, about 5 hours ago. Since that
time I've noticed an itching at the site that comes on, last for a
minute or so then goes away. That happened 3 or 4 times. There is
some redness about 5-6 cm by 2 cm. Other than that no discomfort,
tenderness or anything. Maybe I will have little to no reaction to
the injections.
Now I hope and pray that it will be effective. My feet have been
giving me a fit for over a week now, and minor symptoms elsewhere.
Thanks for all the encouragement and infomation from everybody.
God Bless you all,
Jay
Thanks all for the feedback on the correlation between rain and RA. Since at least one person thought humidity might be a factor as well as the change in barometric pressure, it might be worth trying a de-humidifier to see if that helps...
P.S. sorry for neglecting to delete the original digest from my email (particularly for those of you who receive your emails in digest form and who therefore received a digest WITHIN a digest!).
My Dr. has prescribed Humira, an injectible biological. After I got over the huge sticker shock of the price, I gave it a try.
I have had four doses, each two weeks apart. It seems to help but I only get relief for about a week and a half then I have four excruciating days until I can take another injection. The medication seems to be effective 24 hours after injection.
My DH thinks I am dreaming. He says the medication should be in my system and not "wear off" after 10 days.
Is this a normal progression. Is anybody else out there on a biological? I would love to hear some anecdotal stories from people trying these biologicals. I know the Dr. said there was another med. that you injected twice a week, has anyone tried that.
Thanks
Hayley
Porterville CA
Psalm 118:8
The pain your girlfriend is experiencing when it rains is two things
The humidity seeping into her system and the air pressure. People with Rheumatoid arthritis usually hurt more when there is a low.
Email me anytime :
God Bless
Trish
1-888-520-3012
AOL instant messanger - Trish8549
trish@...
Quality Vitamins and Herbal Formulas since 1992
http://www.herbals-unlimited.com
To see our PRODUCT SPECIALS go to
http://www.herbals-unlimited.com/goldshield_sale.htm
HI all,
Just wondering if anyone else who takes Enbrel has gotten injection
site reactions. I am starting my 4th month of it and since month 2
have been getting them. Is there anything you can do for them? Don't
see my doc for awhile. Thanks Janet
Sorry if anyone has already sent this to share. I just ran across it thought it was useful. http://www.askapatient.com/index.asp
Elizabeth
Is their anyone up here who has rheumatoid arthritis if solease e-
mail me at REHILL@... it's for a project
Well the VA did it again, what a beaurocracy!! I was sent to the
wrong place, to see a surgeon, when I was supposed to be at the
surgical department which is where they give Remicade infusions. one
and a half hours after my appt. I finally talked with one of the
doctors who give the infusions. The medicine has to be ordered two
days prior to the appt. so there was no way I could get mine.
To top it off before Remicade is prescribed rules require that a RA
patient be prescribed Enbrel first for at least 90 days. Must be less
expensive!
I do prefer trying Enbrel since I won't have to drive 120 miles for
the infusion.
So, the Enbrel has been ordered, 90 days worth. When It arrives I
will see my Doc and get started, hopefully within the next 10 to 14
days.
Now I'm perusing any and all information I can find on Enbrel. I
would appreciate any information from any one taking this drug.
Thanks and God Bless,
Jay
Hello!
I've been lurking here for a little while and thought I should speak
up and introduce myself.
My name is Lynn. I'm 34 years old and have had JRA for quite some
time. I was initally dx'd at age 12 and went into remission at about
18.
I thought it was gone for good, but no such luck. At 25 I was dx'd
with RA. Luckily (aside from some nasty flare ups requiring
Prednisone) things haven't gotten too bad for me. While it effects
just about every joint in my body - thankfully not my spine, it seems
to be progressing very slowly and I haven't had to go on the heavy
duty meds.
At 30 I was dx'd with Multiple Sclerosis which is also ticking along
fairly well with medications keeping things under control.
I just recently saw a rheumatologist after a 6 year period (long
story - horrible GP - got a new one now. :-) ). I'm back on
medications (Plaquenil and Bextra) and feeling much better.
My worst symptoms (aside from pain) are fatigue and sleep troubles.
I take an herbal supplement for fatigue, but the sleep problems are
harder to deal with - mostly it's due to pain in my elbows. Seems
like any other joint (hips, knees, etc.) I can arrange to get some
relief for a while so I can get to sleep. With my elbows nothing I do
seems to make them feel better. It's frustrating! ;-)
Anyways, that me in a nutshell!
Best Wishes,
Lynn
Just wandered how many of you use yoga as a means to maintain or
increase thier flexibility? A n ew yoga center opened near us and am
interested. I contacted them and of course got the 'sales pitch'
from the owner, but am real curious as to those with RA who have
noticed benefits from doing yoga. She offers several classes and
suggested Hatha, kundalini or a class targeted for back/muscle
pain. My pain is mostly shoulders, wrist, knees and bottoms of
feet. Hands and wrist have improved with MTX.
Any advice or suggestions greatly appreciated.
Diane
Hi all,
Just wondering if any one has successfully acquired Social Security
Disability with RA as their diagnosis. You can email me privately if
you want. Thanks. Janet
I have RA. I have recently been having pain on one side at the base of my
skull?..... it is the worse feeling. My RA effects my neck and jaw and I
know that pain but this pain is different. I have never had it there and
wondered if anyone knows what i am talking about. Any help would be
great!
Thanks
Kelly
Hi,
I am usually a lurker but wanted to ask if any of the women in this
group are members of the women's fitness system, "Curves." I was
diagnosed with RA in February of 2003 after a bout of severe pain in
many of my joints, much like what I read about from most of you all.
Anyway, I take MTX (17.5 g per week w/ folic acid [1 each day]), 1200
mg of Daypro (oxaprozin) daily, and 7.5 mg prednisone daily, which I
am trying to wean myself off. I am in drastic need of weight
reduction, so I joined "Curves" with my daughter. I have only done
two workouts and maybe it is all in my head, but I feel remarkably
better and have much more energy. If anyone has any short- or long-
term experience with "Curves," I'd love to hear about it.
Thanks to all of you for the helpful information that I read daily. I
so enjoy learning all of the new information!
Joni
Does anyone on this list have any experience using Pulsed Magnetic
Fields alone or in combination with standard treatment to help reduce symptoms?
My
alternative MD is suggesting I try it.
Thanks,
Tracy
Tomorrow I have an appt. with the VA for a consultation for Remicade
which my primary care physician prescribed to go with the
Methotrexate and Plaquinil.
I am wondering if anyone has gone through such a thing and if there
are any arguments I can use in my favor to help convince them of my
need for this medicine.
I am currently taking 200 mg of Plaquinil, 10 mg of Prednisone daily
and 15 mg Methotrexate weekly. I am having pain, inflamation and
swelling. It happens every time I go below 15 mg of Prednisone. They
keep trying to ween me off the stuff but when I go below the magic
number, BINGO!
Thanks and God Bless,
Jay
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Hi... it's been awhile since I've posted (one month into nursing
school) but I wanted to put in my two cents about the shoulder
pain. My RA started like that. I had unbelievable pain in my
shoulder that woke me up one night and only lying in the hot bathtub
brought any relief whatsoever. The following night it happened in
the other shoulder. Two weeks later the symetrical joint pain
typical of RA started and stayed in my feet, wrists, fingers etc...
I'm now on Methotrexate and doing well. Did anyone else's RA start
similar to this with "wandering" joint pain before settling in to
the "norm."? I hope that your shoulder pain goes away without
further problems and I didn't read back far enough to know what your
diagnosis is but if your doctor didn't run blood tests, I just
wanted you to know that I started out with similar pain... not to
scare you.
I just wanted to put out a happy "nursing school is going great and
even with the stress... no major flare ups." So... I feel very
lucky and will have the opportunity to possibly work with research
on RA while in school so I'll keep you posted on the newest, latest
and greatest. Wishing everyone a good week... pain free or lessened
at the least. Sarah
Has anyone ever had any problems with their lungs due to RA? I just had double pneumonia, and the doctor says that it is now cleared up, but it still hurts to breathe. I never know what is caused by what anymore. I don't know if something is pain from the Ra or if I am sick. I had no idea that I had pneumonia because the prednisone masked it. I would appreciate any info.
Teah
I have developed a left
shoulder-down the arm throbbing pain, but it is mainly in my
arm/shoulder
socket. It's excruciating. I've never had it before. I've been
taking strong
painkillers overnight (with minimal effect), but still have a few
hours to go before I can get to
the doctor. I have had arthritis inflammation in my toes in recent
months. Is this what rheumatoid arthritis pain i like and what can I
do to alleviate it?
Well, it has been over 2 1/2 months since the fisrt pain in my neck
started. No biggie. A few days later the pain was severe and went
into my shoulder. Went to Military doc, told muscle strain,
given ultram 2- 4xdaily for 2 weeks. He sent me to PT as well.
Well, I had a fall off a chair that didn't make it any better, GOT
WORSE. Went back (same doc) and he put me on ultram 1- 2xdaily. (?)
well, did as prescribed. Not better getting worse, pain down arm and
numbness back of arm and outside of right hand. Saw my Rheumy and he
put me on ultram 2-4/6 hours with refills. I was still haveing pain
in the base of neck-upper back between shoulder blades.
Well, I went back for a third time, he took x-ray. Radiologist said
it was normal. So he sent me to another doc, a neurologist. He
ordered a CT and it came back two days later. This was last week. He
got the report on Thurs. and that morning his nurse called to say I
needed to get an MRI done in the morning. I did. Results were in
yesterday and I saw him today.
CT showed an extensive bulging disc. The MRI on the other hand,
didn't go down far enough to determine just how much damage was
done. (cervical MRI but only did to the C5.) I will now have to have
another MRI closed thoratic. (sp) He is sending me to a specialist to
see if surgery is required for this disc, since PT and ANSAID's
didn't help.
I can't believe that the base doc didn't catch on with what was
happening. On my last visit to the Base doc, he treated me as though
I was only there to get pain pills. (addicted) yeah right! As if I
really want to add more pills to the pharmacy I already take every
day. No offense guys but if I had been a guy he wouldn't have thought
twice about running other tests and helping me manage the pain. He
never gave me any help with the management. Barly able to function at
all.
Well, now I know that I am not making the pain up in my neck. I have
a seriously bulging disc at the C7-T1. I guess I will have to look it
all up on the internet because I am not to familiar with that type
medical problem. I need to see what type of treatments are available.
All I want is to be able to clean my own house without all this pain.
I already have some pain doing it without this new developement.
Sorry for the novel.
Brenda
It seems to me after a few weeks on the group that there are a great
many people taking Remicade and also a surprising number of people
who take prednisone. It could be that this group attracts more
people with difficult cases who need prednisone, but you should
realize that this is not the best initial treatment for a fairly
normal newly diagnosed case of RA. As someone pointed out a few
weeks ago the side effects of prednisone are horrific, proven and not
reversible.
One theory is that the doctors have a real interest in quick results
so they will not lose the patient to another doctor or specialist.
Prednisone gives you a fairly quick feeling of improvement but it
can't be sustained without damage.
One good reason to use prednisone is to make people with very bad
symptons have some easing of their symptoms while one of the other
types of drug starts to take effect as nothing alse acts so fast.
Anyway - watch out for the prednisone
As for the Remicade, according to my friend, the medical market
research person, the doctors in the US can "warehouse" the drug.
They get it direct from the pharmaceutical companies and sell it
direct to the patients so the doctors make the money that a drugstore
would make in other systems. That means that each person on remicade
is worth $2000 a year to the doctors. Also the administration of the
infusion nets them more money than an injectable.
One drawback to remicade is dosage creep - as your bodyy gets more
accustomed to it, or if you get heavier you will either need more of
it or you will need it more frequently so the cost will go on
rising. She knows of one heavy person who needs it every 4 weeks at
a cost of $68000 per year.
Anyway this is one point of view and I am a patient not a doctor.
Annette
I was diagnosed with RA about a year ago, at age 26, because of
swelling and pain in my hands and knees. At that time, they told me
that I probably wouldn't progress too much further in the next 5-10
years as long as I maintained meds, etc. Sunday night I woke up in
tears from pain in my neck and back that wouldn't be relieved. I
went to the ER and they diagnosed it as part of the RA. They gave me
60mg of Prednisone daily for 5 days and Percocet for the pain. Two
days later, I'm much better but still have stiffness in my neck and
back. I'm going to my Rheumy today as directed by the ER doc. Is
this a flare up? Does this mean I'll have neck and back problems
ongoing? The knees and hands weren't that bothersome but this makes
me wonder about continuing to work and be in good health in general.
I'm still wanting to have children in the near future and being out
of commission for 2 days is a little distressing when you are wanting
to have a baby?!?!? Wondering if anyone can relate or have any
advice for me? I'm thinking about quitting my job due to stress, as
I'm wondering if that is why this was brought on so suddenly. Any
advice would be appreciated?!?!
Jennifer mentioned she couldn't remember everything her doctor told her.
I'm the same way, so I use a steno pad and take it to each appointment.
Whatever is discussed - changing dosages, sleep problems, new meds, side
effects, anything - I write down. Then if I need to make detailed notes, I
wait until after the appt. and write a full explanation. [No doctor is
going to sit patiently while I write a full page. :) ] It's the only way I
can keep track. And I have the notebook to refer back to when/if the same
problem arises. RA is so complicated I get easily confused about what's
what.
Jan
Hi Joanna, I use a supplement called Joint Care. It is produced by a
company called Body System Technology. The basis for the supplement is the
Arthritis Cure book. I really have good luck with this product. I can tell
when I have forgotten it for a few days. My 76 year old uncle also starting
taking it and he notices a benefit for his knees after tennis.
Here is their web site.
http://www.bodysystemtechnology.com
JennH