yourselves warm in the winter months. I'm freezing... and I can't
afford to keep this house heated like I feel like I need it. I wish
I could plug in a heated bathrobe on an extension cord that
stretched all the way through the house and live in the thing. I'm
costantly cold, my hands and feet are killing me and my ears and
nose feel like icicles. Any tips?
Thanks,
Susan... from Early Winter, USA
Just thought I would check in and say hi! Been very busy at work, so not
keeping up on the list too much.
I hope all is well with everyone!
Karen
He is a Rheumatologist... I am on Medicaid and unfortunately cannot
find a really good one. This one was highly recommended... if you
can believe it. He never had me go through an MRI, but he did x-ray
every square inch of my body. I should glow in the dark. My hands
came back just find... he said I had a lot of arthritis in my
neck... but in order for me to get any answers from the lovely man,
I have to track him in the hallway and keep talking. He won't stay
in the room! And he was highly recommended. I will give him this
much, he did diagnose me when others had not given me anything to go
on for nearly five years.
Time for a second oppinion. Let's just hope Medicaid has one good
doctor out there. You just never know and it's getting worse. :-(
Thanks you all.
Susan
I'm on Celebrex, Evoxac, Inderall, and Ultraset. Are any of those
anti-rheumatic?
Question:
My temperature is normal at 97.4.
Anyone else have a normally low body temp?
Hugs, Jacy ~I don't approve of political jokes; I've seen too many get elected.
jacymail@...
IM: jacygal - ICQ: 96949087
www.geocities.com/mtn_rose
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Just wanted to tell everyone I go to my first Rheumy appt. on Monday
@ 1:30pm. I am getting anxious. I need some relief from this pain.
I think this is what is contributing to my depression. Which has
been real bad lately. Lost interest in just about everything. I
have to make myself get on the pc and check my email and post
messages. I have to make myself pick up the phone to return calls
from friends. My house work is gone down hill and you know what I do
not give a damn. (Sorry) That is just how I am really feeling now.
I find myself fussing with my kids over nothing. I get angry about
nothing. I keep a terrible migraine. Which actually with the RA
flare up in my neck that causes severe neck pain, which causes a
headache then turns into a migraine. I do not know what to do
anymore.
Anita
I'm in my late thirties and was diagnosed with Rheumatoid Arthritis,
Sjogren's Syndrome, Reynaud's Syndrome and Hypothyroidism about a
year ago. The worst symptoms seem to stem from my Sjogren's,
however. I do have some swelled joints in my right hand, and I do
have joint pain everywhere, but the symptoms of the Sjogren's are
horrible. Dry everything and very painful.
Anyway, I am not sure exactly what to do about the Rheumatoid. It
has barely begun to "show" and I don't even test positive for it in
my blood samples. Did any of you go through that too? My doctor is
knife happy and keeps asking if I will let him go in to my hand,
right shoulder, left hip and left foot too "see" what's going on. My
response was, if you can't see it on the x-ray and I can still use
my body fair enough, why would I want you to cut me open and go in
so many places. Am I right in waiting on the surgery?
This is all pretty new to me and I'm fairly scared... mostly because
of the Sjogren's. But, I know very well what Rheumatoid arthritis
can do to you... my neighbor has had it for years and has a total of
87 surgeries on her feet alone. That poor woman. So... that scares
me too.
Well, thank you for having me in the group. I look forward to the
posts and participating in the discussions.
Susan
I wonder as to how DIFFERENT in chemical composition and such Viooxx
is from, let's say, Celebrex, Bextra, etc??
I am hoping that folks who were using Vioxx can find pain relief/
management from the other available NSAIDS..:(
I use Celebrex occasionally...
Lindy
RA 6 yrs..mtx plus assorted pain relievers,etc..:(
Good-bye to my friend,
my sweet yellow pill,
you carried my pain,
tummy upset was nil
But the shadow of heartbreak loomed too near and too great
so I must say good-bye, before it's too late.
-Sierra
Hey there! My name is Julie, I recently joined the group, and I
thought I'd introduce myself I'm a 26 yr old self-employed single
mom in Southern California and I love to read, learn new things, and
expand my pool of knowledge. I personally am on a mission to self-
educate myself in a manner that will provide a healthy, balanced,
and happy life. I'm hoping I can find some good info here to help me
with the RA in my knees and left elbow, and I'd also like to meet
some like-minded people. Hope everyone is well and has a great rest
of the week!
~julie
Hi... I wanted to introduce myself since I'm new to the group. I'm a
37 year old woman whom I was diagnosed with Rheumatoid Arthritis a
year ago. This past February I was diagnosed with Sjogren's Syndrome
and Reynaud's Syndrome and Hypothyroid Immune Deficiency Disease. I
spend a lot of time in pain and I'm unable to have the life I had
just a year and a half ago. I'm sure many of you can probably
relate.
I am a single Mommy of a boy with Asperger's Syndrome, Tourettes,
OCD, and ADHD. I homeschool him. I also have Asperger's Syndrome and
OCD. We love to read around this house and to cook and play games
together. We have a dog and a cat, whom I am absolutely sure is
autistic! :)
My Mom helps when she can. She was just here this morning to do
dishes and carry out the trash and bring up the baskets of laundry
with my son.
I am on various medications. Inderall for heart palpatations, Evoxac
in hopes of bringing moisture back to my life, Levoxyl for the
thyroid imbalance, Celebrex, Elivil for sleep and pain, and the
occassional Ultraset.
Does anyone have any good leads on vitamins and fish oils? I take
those, plus an iron pill because I'm anemic.
Thanks for having me in the group. Look forward to the messages.
Susan
Has anyone tried the Joint Fluid Therapy injections in your knees? I
talked to my Ortho surgeon yesterday and he took new pictures of my
knees. My right is bad. We talked about a replacement, total or the
less aggressive, this Supartz therapy. On the one hand I want to
just get a new knee. On the other, I fought an staff infection in
July on a surgery on my wrist and don't want to go through that
again.
It's just that the pain in my knee is getting in the way of me doing
the things I want to do.
What's your experience?
Thanks,
Sherry
Hello to all, sorry I have not posted in awhile. This has been a dreadful September. First, we almost lost our home. (Which may still happen, please pray for us). I could not get my Rx refilled for my anti-depressant, so I have not been taking any since last Thursday. So needless to say I have had a horrible, horrible weekend. I got some samples yesterday and I am slowly starting to feel better. Of course, all this stress has made my RA flare up terribly! So I have been more extremely exhausted than usual. I have been at the end of my rope lately and I do love my family, I just can't seem to cope anymore. But, I will try, because I know some others are worse off than me and I should be happy with what I do have. Well, with me back on the effexors, at least that will improve in a few more days. One thing though, I have medicaid and they only cover 6 prescriptions a month and I already take 6, so what would be the point of me going to my Rheumy dr. on Oct. 4th. I
know he will give me at least one more if not 2 more and I do not know what to do. I know we will not have the money to pay for them. My husband works construction so we do not have health insurance. I heard you could get your doctor to talk to the medicaid people in your state and get your Rx limit overrode, but I was told that was only in cases where you are dying. Oh well, I guess I will cross that bridge when I get to it, but it does not stop me from worrying about it now.
Anyway, enough about my ranting and raving. I hope everyone is doing well. I will chat more later.
Anita
It's OK
you have OA
we'll accept you either way.
No RA?
ooray!
Best of luck, Wally! From Sierra
Hello everyone,
I just got back from the results on my
ankle and leg X-rays and found out at last that
my arthritis is Osteoarthritis. I am sorry
to have to leave this list as
you have given me so much information
that is helpful with any kind of arthritis.
But I think you'll understand that I need to
find out more now about Osteoarthritis
and get some research done up.
I just want to thank each and every one
of you for your compassion for eachother.
Keep it up.
I will still keep you on my prayer list and
hope that soon they'll find a cureing factor
for all of us.
My best thoughts go with you.
Wally.
[LINK]
I just wanted to quickly write and let you all know that I was approved for Embrel coverage and it only took a week. I am going to my Rheumy tomorrow morning to learn how to inject it. I am excited, but don't want to get my hopes too high b/c I have already failed Remicade and many, many other drugs. Wish me luck.
Melissa
If you don't mind, could you guys give me a little advice from experience (all experience) on which companies offer the best individual insurance ?
and for those who know to pray, could you pray for me one more time? I just was told that I'm marooned in IL for one more week! I'm on the edge of my nerves, since I need to continue my job search there and keep up my courage to see the Dr. when I finally get there.
I'm not sure what's right and wrong about my life and times anymore, I'm just a lot tired and a little more frightened.
Last night, my mother suggested I use ice to cool my (strangely not feverish, but) uncomfortably hot face and neck... It worked and I was somewhat surprised, since even after cold showers and lots of water, I've had this 'hot head' (LOL) since July or so. She checked my temp and was very skeptical about my contestation that I had a 'fever'...
Does anyone else feel that strange hot feeling? It must be that the rest of my body temp has declined and my head (which i think is always a little warmer than the rest of the body, but feels like a stove to the touch -- mostly evenings) has stayed the same. ?
Anyway, she pretty much said she didn't want me to see a Dr. with a lot of psychosematic (sic?) symptoms... It didn't bother me that she said that. I know she wants to be sure that it really isn't all in my head... or just a fat lady issue...( [INLINE] )
Still, I'm anxious to get my life back to some level of stability. So, first order of the day? Find Insurance plan/Paying Job (LOL) and then, maybe, a Dr.
Thank you for listening to my crazy days! My brother (with whom I live in MI) is being deployed to N. Iraq/Turkey in a few days. You pray for him, please. He's a good man.
Love to you all,
Yellow
Hi Everyone,
I'm back and have had a great week, very relaxing for a change!
I am so glad you are all safe in the Hurricane zone, I have been watching
the news to keep track of it.
Hope everyone is as good as they can be,
Hugs, Lynne
"What lies behind us and what lies before us are tiny matters, Compared to what lies within us."
OPPS! Sorry,
I accidently clicked "send" when reading one of
the posts. Sorry you'll get it back again.
I will be in touch in next couple days when
I get my results as to the x-rays and blood tests
on Tuesday.
Wally
[LINK]

Anita Martinez
Just got a letter from my insurance co. today inviting me to
participate in a special program because of my "complex" (read:
expensive) health condition in which I may enroll by sharing all of
my personal information. The benefit to me? Basically, a nurse
monitors me and I'm given a number to call 24/7 if I have questions
or concerns. Has anyone participated in such a program? Am I being
too much of a cynic by thinking that this has "cost saving measure"
written all over it? Not that there's anything intrinsically wrong
with that, but there could be if the friendly nurse has been trained
to systematically guide her charges to the lowest cost options. It
was kind of freaky to be "targeted" for this service, and it feels a
bit aggressive--If I don't respond, a nurse will call me.
I will be voting for change in the upcoming election, partly due to
the sick health care system in this country.
Sierra
Sharon,
Good idea!
I have been wrapping my wrists up when out in the garden and lately wrapping up my ankle when it is hurting or I have to walk a neighbors house close by. Untl
next Tuesday when I get the results of my X-Rays I won't be taking the chance to walk into town.
Anything that helps is a blessing isn't it?
Love you all, Wally
My index and middle finger on my right hand have been swollen up like little sausages for several days, so I cut about eight inches off a two inch wide ace bandage, then split it in half lengthwise with a pair of scissors. This gave me two ine inch wide, eight inch long "mini bandages". I wrapped my two fingers with them and fastened the wraps with scotch tape before I went to bed last night. Hurray! I have fingers instead of sausages. Thanks for the idea, Beth.
Sharon
G'day to you all,Actually I am not new to this site. I joined a year
or so ago,but have been undergoing too much.My name has been changed
due to the fact that my name has already been taken. ( by me) but I
don't know how to get a computer to understand that.I used to be
called diggerdoz alias Nea. I became pain pals with a few but sadly
lost touch. I have RA, not on anything at the moment for it,tho that
will change soon. I also suffer from FMS.Trigeminal nueritis-oh heck
just plain ole pain.Looking forward to getting to know you and
Dear everybody,
Thank you so much for responding. I haven't been online much lately,
because I've been sick and exhausted. I'm making my way back to MI
from St. Louis, unfortunately, I couldn't find housing in time.
I can keep the job, though, and if I find another job and a new home
there, I'll get back to it. (It was part time)
Life is still very good.:)
I'd say they were Migranes, even though they don't pulsate, it's more
like a vibration, and though it doesn't correspond with eye pain. It
doesn't last longer than a few minutes or so, because it descends on
me and stops everything until I remain perfectly still and breathe as
deeply as I can... Then it fades. If I had to describe the pain, I'd
say it was the blue/silver color of lightening, with a tremble...
like an burgeoning electric current.
Actually, the eye trouble is a real constant with me -- I've been
wearing sunglasses (I buy them with my prescription) everyday and
into the night sometimes, for about three years now. It's not dry,
although I used to have dry eyes in HS. It's a black, hot, sometimes
just simmer, behind my eye balls. I can't predict when it will be
bad. I have to have 'dark hours' as I call them, or my eye lids swell
and my vision is shot for the next day.
I ask you guys, because I'm afraid it might be my immune system
attacking something that could cause real problems.
The brain thing is new... just the past few months... and it doesn't
really involve any increased heart rate... (outside my anxious fear).
I recently attended a ceremony and got really excited when I realized
how wonderful it would be... that's an example of the brain thing...
it came and went just as quickly as I tried to calm myself down.
I don't know if this has anything to do with my recent health issues,
but I never had this problem before. I have to be careful because
there is a high incidence of strokes, heart disease, arthritis,
cancer AND diabetes in my family.
yeah, i know.
It's probably a good thing I'm going back to MI. My parents have an
internist friend there, who I'm sure, would cop me a few free
consultations.
LOL.
I can't believe I finished this.
I'm so tired right now.
Love to you all,
Yellow
Have you seen this?
http://www.scienceblog.com/community/article3759.html
Of course it will probobly be ten years before they are allowed to test it on
humans.
Hi all,
I went to my RA doctor and she gave me a cortisone shot but in my
bottom not in the joint. She said she hopes this will help me until
the Plaquenil starts to work. I got the shot on Thursday and so far
I feel a lot better but my swollen ankle is the same. My question
to the group is about how long on the average do these shots last?
Another question, I haven't been officially diagnoised but the
doctor put me on Plaquenil. Have any of you been on Plaquenil and
not diagnoised?
I would feel better knowing what I have so I know what I am dealing
with. I do have a dx of fibromyalgia but this pain is centered
around my wrists, ankles, elbows, and fingers.
I thank all of you for your kind words and support,
Susan in Michigan
I cannot take the naproxen either. My doctor told me there are a # of different groups for anti-inflammatory med's. He said when people are allergic to one group they can still take some from one or more of the other groups. I, however, am allergic to some in most all the anti-inflammatory groups and therefore he does not feel comfortable giving me an anti-inflammatory for the RA. He would feel better to leave that to my RA doctor because he is more familiar with all the groups. So, unfortunately, for now I guess I have to deal with the pain seeings how the ultracet pain med he gave me doesn't work either. Thank-you for your concern.
My husband does not care one way or the other. He said he just wants a clean house. I have spent all day today trying to get this house cleaned and I am paying for it now big time! And if he says one word about not doing something like he wanted it done I will have the strength to knock him over the head with a cast iron skillet! HEHEHEHElolololol!
Thanks to all for your concern. I go to my PCP next week, so I will see what he does put me on for the pain until I get to my RA doc.
Hugs to all,
Anita Martinez
I am very glad that imitrex has worked for all of you for migraines
that take it now or have taken it. But I for one did not have good
results with it at all. Even if I took it at the first tinny sign of
a migraine coming on. The only thing it did for me was make me hurt
and swell at the injection site. It never did stop a migraine. The
Relpax works great for me though. It too is one that you have take
right away for it to stop a migraine. (Actually, all migraine med's
are that way.) And you cannot take one and then another a little
later. You have to wait at least 2 hours between doses. Then you
are not suppose to take more than 2 in a 24 hour period. If I have
to wait for whatever reason to take my migraine med, I end up at the
ER for a shot of very stronger med's. I too am one that has had
migraines since I was a child. Headaches run in my family, but not
migraines. My best to all.
Hugs,
Anita
So... this summer I was lucky enough... or maybe frustrated enough that I got to go on a 'drug holiday.' Of course I told my Rheumy what I was doing and he supported me. I think that I have told you guys that I am 24 and have had RA since I was 18. Anyways, I have been on pretty much ALL the RA drugs out there and we have not been having much luck. This summer my joints were not too bad and I just got rejected from a Humira trial (I live in BC, Canada and its still in trial here) so I went on a 'drug holiday' to give myself a break. I am usually just as good on meds as I am off them. Well... summer is over and so is my 'drug holiday!' The weather here in Vancouver has been fluctuating so much and my joints have been extremely painful, swollen AND THE FATIGUE... oh my goodness... its bad. I tried the biologic Remicade in the winter/spring but it didn't seem to work for me, so now that I have been rejected for the Humira trial my Rheumy is applying for Embrel coverage for me
(I am on disability). Pretty much this is the last drug until new ones come out to market that I can try and we are hoping that it works for me, but in the meantime I am back to a pretty neato drug regime. I am taking 1000mg/day Naprosyn E, 20mg/day Prednisone & .065ml/cc (equal to 16mg I think) Methotrexate injectable. I lose my hair with Methotrexate REALLY BADLY and I am scared to have it falling out again. I am just having it grow back from last time. It comes out in clumps and clumps... its gross. Oh, did I mention that the depression is back full force? yah, fun... more drugs (Welbutrin XR).
Thanks for letting me vent... I needed it.
Oh, one good thing today... I got a free facial that I won... whoo hoo. Oh and for all of you supporting me on my S.Beach Diet... I'VE LOST 8 POUNDS.
Melissa (PS: looking for Entertainment Books? Email me and I'll tell you how to get one (your local book) and support the only young adults support group in Vancouver, BC)
Hello Yellow,
I agree with Jenni 100%. I have migraines pretty bad and they are totally different than a regular headache. I have all the same signs as you and have been on migraine med's for a very long time as well as on and off pain med's for the migraines and now for the RA. (Which I might add does not work now for either- it was "ultracet". Did not do a thing for pain. I am currently on Relpax for migraines and the only thing with that is you have to take it as soon as you feel a migraine coming on. After you have had it for a while the relpax does not work with just one, you will have to take 2 and you cannot take them within I think it is 2 hours of each other. I have taken the imitrex injection and it did not work at all with my migraines. But people are different and it may work for you. Let me know what the doctor says about your headaches. I hope you get some relief soon. I know when I have one it puts me on my butt hard!! I rank the pain of a migraine as equal
to the pain of RA for me. They are that bad! Alot of times I have to go to the ER to get a shot of stronger med's to get rid of my migraines. I agree with Jenni as well that OTC's are not for true migraines. They only contain a little more caffeine and tylenol in them. I hope you feel better soon.
Hugs to you and everyone,
Anita
Anita Martinez
First I want to say welcome to all the new members. However, I have
not had my first appt. with my Rheumy doc. yet so I am still one of
the ones that is needing advice from the others as well. This is a
WONDERFUL group and the most informed and I know you will get great
advice and the support needed. THIS IS ABSOLUTELY MY FAVORITE
GROUP!! I LOVE THESE PEOPLE!!
Secondly, sorry everyone I have not posted lately. This week has
been terrible! My back has hurt so bad all week and my husband is on
me to clean up the house, which I do pick up I just cannot do much of
anything else w/o being in so much pain. Actually, the picking up
the house is very painful too. I have only some pain med's my PCP
gave me for the pain to last until I can get to my first appt. with
the Rheumy which is not until Oct. 4th. And needless to say the pain
med's do not work at all. I am allergic to aspirin and ibuprofen so
the only thing over the counter I can take is Tylenol. Which does
not work either.
Well, enough complaining from me. I hope everyone has a great
weekend.
Anita
I, too, was very depressed when first diagnosed. I found, however, that when I
was able to start exercising again (I walk two or three miles every morning)
that the depression was much improved. Several years ago I became very
depressed because my MIL developed alzheimers and I was her primary care giver.
As she became worse, I became more depressed until I had to go on Wellbutrin
just to cope. I discovered then that If I exercised every day, I didn't have to
take the meds.
Fortunately, I can still walk a couple of miles if I don't go too fast.
Sharon
YOU ARE
AMAZING SHARON WITH ALL YOUR GAGETS!
YOU ARE A GREAT INVENTOR!
Wally
[LINK]
Here are some "coping techniques" I have discovered. Please share yours, too.
In addition to the pliers in the car to turn the key in the ignition of my car,
in my kitchen I have a pair of channel-lock type pliers that open up almost two
inches to open those plastic bottle caps that you have to break the plastic ring
to open, and a pair of needle nose pliers to grasp and pull those ubiquitous
"pull tab to open" and the plastic plugs in some cartens.
I started buying my milk in half gallons instead of gallons, because I can't
handle an eight pound gallon of milk comfortably.
I traded in my top loading washing machine on a front loading maytag that spins
much harder and the clothes are much dryer after spinning so they are lighter
weight and easier for me to lift out and put in the dryer. (Also it is easier to
pull them out when there is no agitator in the way.)
I am using my chicken fryer skillet for most cooking because it has two handles,
a long one on one side and a smaller grip on the opposite side so I can lift it
with two hands without using a pot holder.
I found a little plastic key chain that has a bottle opener on one side and a
slot to slip under a pull-tab on the other so that I can open cans with pull
tabs.
I cut off the tops of a pair of tube socks to wear under my wrist braces so they
don't chafe.
I changed from a mouse to a touch pad for my computer, because the mouse was
aggravating my wrist.
I got a wireless router so that I can sit in my recliner chair with my laptop to
work on the computer because sitting at the desk for any length of time bothered
my knees and right shoulder. Now I surf in comfort!
I bought a pair of tennies with velcro closures instead of shoe laces.
I bought a big package of ball point pens at costco that have a soft rubber grip
than is easy for me to hold and doesn't hurt my fingers.
I bought a pair of EXTRA LARGE rubber gloves that will fit over my wrist braces
so I can wear the braces to wash dishes if my wrists are very sore. (Or anything
else that might soil the braces.)
I bought a little kitchen gadget that hooks over the top of a vacuum sealed jar
and when you push down, it pries the lid up slightly and breaks the vacuum so
the jar is easy to open.
When I am in Flagstaff in our travel trailer, where the weather is getting
around freezing at night, I keep a heating pad beside my bed and when I wake up
in the morning, I turn it on High and wrap it around my hands and wrists for
about ten minutes before I start the exercises to make my hands function. It
really cuts down on the length of time it takes to get my hands flexible on a
cold morning.
I am short legged for my height, and my knees hurt if I sit without my feet well
supported. I found a little footstool at Big Lots for eight dollers that is
about six inches high. It is just perfect at my computer desk, or even the
kitchen table.
I brought in the little plastic rolling seat that I used for gardening. I sit on
it to dig around in my lower kitchen cupboards since I can't squat down any
more.
I keep a small pair of scissors by my chair to open plastic wrappers and bags
with. I can't just grab them and tear them anymore.
lol
like my title?
does anybody have pain in the sides and back of the head (inside?) during
excitement or sudden movement? does anyone have weak or painful eyes?
me again.
yellow
Hi--thanks for so many responses. I still need to talk to my
pharmacist friend, but all of your comments were very helpful. I
didn't realize there are more steps with using Enbrel (mixing) and I
had not heard about the stinging associated with the Humera shots.
I am very hesitant about Remicade and will probably not go that
route.
my rpimary insurance does not cover injectibles at all, but my
second does at a very reasonable cost. I am very lucky, but am
realizing that I am more stiff and having more pain than before and
do need to try one of these treatments. I also am being treated for
depression, trying different meds for that and trying to get the
boost I need. Today is a tough day for some reason, maybe it is
just hitting me that my RA is getting worse.
Julie in WNY
Here is the link
http://www.billingsgazette.com/index.php?id=1&display=rednews/2004/09/01/build/health/27-remicade.inc
Becky
WASHINGTON (Reuters) - Johnson & Johnson added a new warning to the label for rheumatoid arthritis drug Remicade about blood disorders that sometimes were fatal, U.S. regulators announced on Tuesday.
Johnson & Johnson, in a letter to doctors said the "causal relationship" between Remicade and the disorders "remains unclear." The reported problems included a dangerous reduction in the number of white blood cells that can leave patients vulnerable to infections.
The company also added warning language about rare cases of blood vessel inflammation in the brain and spinal cord experienced by patients treated with Remicade.
Here is the link to rest of this article, I found doing a search in Google.
http://www.reuters.com/newsArticle.jhtml?type=healthNews&storyID=6059613
Becky
My adult daughter began taking plaquenil on August 7. On August 9,
she had sudden severe pain in her neck, radiating down her arm and
numbing her fingers. MRI's showed 4 herniated discs in her neck
with C5/C6 causing the pain. Could plaquenil have contributed to
this? I realize it probably did not cause the problem, but could it
have aggravated it? She had surgery to wedge the vertebrae with a
cadaver bone, strengthened with a plate. The disk had calcified so
it was totally removed. Fusion will occur as a desired result.
Thanks for any help in this matter.
Worried Mom
Hello and thanks for all the good posts.
I must admit I'm still up and running when
I'm up. I read your posts and cry.
Yesterday was my day,I went for blood
tests to see what kind of arthritis, but in the
X-ray of my ankle (which has been keeping
me down), the technition asked if I had my
pant leg down, of course I didn't and she came
back a 2nd time asking if I had a leg injury
and I said no, came back a 3rd time and felt
my leg, which is tender up to the knee, and
said not to worry as it would be sent out and
read.
I don't think it is serious, but it was shadows
she said that shouldn't be there. Whatever
that means.
Anyway, being layed up isn't so bad as I get
some mail done, and lots of reading and talking
on the phone .
God be with you all and keep your chins UP!
Wally
[LINK]
Hi everyone. I am 37 and was diagnosed 2 years ago with RA. Have
been on methotrexate/folic acid and naproxen. Saw ym rheumy today
and he wants to start me on a biologcal, so I came home with videos
on Remicaid, Enbrel, and Humera all in an insulated totebag with
giant lettering HUMERA on it (ha ha ha).
He wants me to watch all 3 (I did) and decide which one I want to
try. Help! Anyone have their choice like this? I can read the
product inserts and talk to my friend who is a new pharmacist, but I
wanted to hear from some others with RA. Mine affects mainly my
hands and feet.
I really appreciate anything anyone can share about their
experiences with these drugs.
Julie in WNY
I was moved onto the injections of methotrexate today instead of the pills and noticed a very odd taste in my mouth after the shot - does anyone else have this experiance? I also seemed to have a really hard time concentrating for most of today - more so than on the pills. I thought I had read that the side effects were lessened on the injections but it definitely seemed a bit worse for me.
Angela
"I can resist everything except temptation" - Oscar Wilde
"Physics is like sex: sure, it may give some practical results, but that's not why we do it."
-- Richard P. Feynman
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Hi Group,
I went to my internal medicine doctor about my swollen ankle and he
got me in to see my RA doctor today. I hope she will do something
for it because the Bextra is not working and it is too soon for the
Plaquanil to work.
I also had protein and blood in my urine. I really don't know what
that means. Is that common in RA? They are sending it to the lab
for further testing.
Thanks for all your help,
Susan in Michigan
Hi. I found this site the other day and have been reading alot of
the old messages. Very informative. I was dx in August with RA.
I'm 51 and live in very HOT Central California. Finally got into the
rheumy last week. Started on prednisone and methatrexate and folic
acid. Took my first dose of mtx Saturday night and this afternoon,
boy was I tired. I only wish there was a bed at work!
Nancy
Hi All,
I'm new to this site and was looking for some insight by those more
experienced. I have been having rheumatoid arthritis symptoms since
February and finally decided to see my GP. He did some blood work
and called today to tell me that although he thinks I have the
beginning of RA, my blood work is negative for RA and lupus.
Good news, I know, but has anyone out there also experienced most of
the symptoms of RA and their blood work was negative?
I feel like I'm running around in circles! I've had episodes of
joint swelling and tenderness of the elbow, shoulder, ankle and both
hip joints. When the hip pain began I was barely able to walk or
lift either leg and felt like I had the flu. The other joint pains
were less intense, but painful nonetheless....
My GP told me to take over-the-counter anti-inflammatories and to try
to exercise to keep the joints from getting too stiff. Easier said
than done.
I used to walk 3 miles a day, but stopped when the ankle swelling
started about 3 months ago. I'm a 47 year old female who feels like
she's going on 97! I've never had any major problems with health and
avoided drs. as much as I could.
Thanks to all of you for any suggestions or advice!
Hugs, Tee
Does anyone out there have any suggestions to help
stomach upset? I am currently on Plaquenil,
prednisone and Voltaren and I am trying to switch my
dosage schedule around a bit (from night to morning),
bit this stuff made me so sick that I had to miss a
few days of school. HELP!
Thanks in advance.
Cait
Well, my bloodwork came back positive for RA, negative for lupus, negative for
parvovirus and with a sed rate of 10, which he said was very good. He took
xrays of my hands and feet, kept me on the naprosin, and scheduled me back in a
month. He didn't want to change my meds until he saw the xrays. I am better
the last two days than I have been in a month. He told me to avoid stress. I'm
TRYING to. It just seems to gang up on me lately.
Maybe if I can avoid any more MAJOR stress episodes I can get this under
control. My husband's West Nile-induced encephalitis brought on the first
flare, and one of my riding students had her horse fall on her labor day and
broke her pelvis to bring on another flare. Hopefully things will stay quieter
for a while.
I really like my Rheumy. He has a wicked sense of humor, and it helps. I told
him I seemed to have a "joint of the day" and never knew what was going to hurt.
He said "Hmm. Joint du Jour. DJD."
Then when he was examining my feet, he asked me if the left foot or right foot
was the worst. I said the right, and with a straight face, said "That's good,
the left one is the one that causes personality disorders." I nearly cracked
up.
I am much more optimistic about this whole mess now. At first I was very
depressed because it seemed like I couldn't do any of the things I like to do,
and had to have help with even the simplest household tasks. Now, things are
getting better, and I have developed some "coping techniques" and life is
looking brighther. (A pair of pliers makes it much easier to turn the ignition
switch in the car, for example.) I'll get the best of this yet.
Sharon
HELLO EVERYONE,
Reading the posts of what some of you
have gone through, really enforces the feeling
that Anita has expressed, that you are honest and
caring to eachother.
What works for one is not jambed down the throat
of another as we all need
to see our doctors because we have different bodies.
I love to see your stories whether they are good or
bad.
With so many options this list gives us its easy
to take them to our doctors who sometimes need
our input as to what we would like to try.
Tomorrow I am getting ankle x-rays done and
blood tests for the finding out what type of arthritis
I do have, and update on the other
various things I have to keep track of.
I won't have results for 2 weeks so until then I'll just
chug along with your posts and take in all I can
learn.
Thanks for being there for me.
A grandmother's love to each one of you,
Wally
[LINK]
I just want all of you to know just how much I really appreciate
Happy Birthday Mary Rue!
Hugs, Jacy ~Growing old is mandatory; growing up is optional.
jacymail@...
IM: jacygal - ICQ: 96949087
www.geocities.com/mtn_rose
Signature powered by Plaxo Want a signature like this?
Following medical referrals, my husband is considering joint
replacement in his hands. We are wondering if anyone has had this
done and any feedback you can give us. What were your experiences
with it. Did it help and in what way? How long did it take for you
to recover and was it worth it? He has RA involvement in just about
all of the joints in his body. He is taking a variety of meds
including Embrel, and MTX (maybe the meds are slowing RA down, but
certainly not controlling it). Of course, he will have to go off of
these meds for at least two weeks for the surgery to allow healing.
He also heals very, very, slowly so I know I'm concerned about this
aspect. I would also like to hear opinions about other joint
replacment surgeries. I fear that he may have to have other
surgeries in the future and wonder about these potential surguries
also. TIA for any information you can share.
Hello everyone,
I would like to pick your brain. I have been wearing the same old
worn out tenny shoes for quite some time, mainly for financial
reasons. Actually, my house slippers feel wonderful, I wish I could
wear them all the time, but I also realize I need good support too.
Lately, even my good ole pair of Birkenstocks just do not feel right.
I am looking to buy a new pair of walking/running shoes and then also
would like to buy a pair of nice winter shoes. Any suggestions on
good shoes?
Thanks in advance for any and all suggestions...
Thanks,
Peggy with feet that seem to always hurt
We would like to remind you of this upcoming event.
Mary Rue Birthday
Date: Wednesday, September 15, 2004
Time: All Day
Mary Rue Birthday (1949)
Hi all, I've suddenly been feeling like I have "mouth sores" or
canker sores?? Except they are way up on the gum line, like my gums
just hurt way in the back maybe....sorry can't think how exactly to
describe since I'm not sure what the heck it really is :O)
I was wondering if any of you knew if Plaquenil can cause mouth
sores? I think I read that meth could but didnt think plaquenil did?
I've been on plaquenil about 2 months and just recently started to
feel like it had finally kicked in and am wondering if that's a side
effect maybe?
Thanks,
Tracy
Hi There,
Just to let you all know that I am going away for
almost 2 weeks so am setting my mail on group mail until
I get back.
Take care, Lynne x
"What lies behind us and what lies before us are tiny matters, Compared to what lies within us."
Wally thought that this would interest you.
* * *
~ PERSONAL MESSAGE FROM Wally ~
Hello group,
I was sent this article this morning and thought you would find it interesting
like me. Any study on something that is less harmful on the stomach is a hope
for all of us.
Thanks, Wally
* * *
~ FROM WEBMD HEALTH ~
New Drug Treats Arthritis, Easy on Stomach
Prexige fights arthritis pain as well as ibuprofen and naproxen, but with less
risk of causing stomach ulcers.
Click here for more: http://my.webmd.com/content/article/92/101970.htm
* * *
~ LEARN MORE AT WEBMD ~
We invite you to visit WebMDHealth, designed to help you and your family
enjoy healthier lives.
At WebMDHealth you'll find instant support and feedback for your health
concerns, Live Events and Chat hosted by Medical Experts, the latest
Medical News and more! Visit us online and become a member of the WebMD
community! http://my.webmd.com
WebMDHealth is committed to your privacy. For more information please
visit - http://my.webmd.com/medcast_channel_toc/1761
WebMD's Address:
WebMD Inc., c/o WebMD Office of Privacy, 1175 Peachtree Street
100 Colony Square, Suite 2400, Atlanta, GA 30361
I knew I kept it after it was sent the first time by Jacy? Was still in my email box and I'm happy to post it again for all those who are interested. MELISSA
78 WAYS SUGAR CAN RUIN YOUR HEALTH
In addition to throwing off the body's homeostasis, excess sugar may result in a number of other significant consequences. The following is a listing of some of sugar's metabolic consequences from a variety of medical journals and other scientific publications.
1. Sugar can suppress the immune system.
2. Sugar can upset the body's mineral balance.
3. Sugar can cause hyperactivity, anxiety, concentration difficulties, and crankiness in children.
4. Sugar can cause drowsiness and decreased activity in children.
5. Sugar can adversely affect children's school grades.
6. Sugar can produce a significant rise in triglycerides.
7. Sugar contributes to a weakened defense against bacterial infection.
8. Sugar can cause kidney damage.
9. Sugar can reduce helpful high density cholesterol (HDLs).
10. Sugar can promote an elevation of harmful cholesterol (LDLs).
11. Sugar may lead to chromium deficiency.
12. Sugar can cause copper deficiency.
13. Sugar interferes with absorption of calcium and magnesium.
14. Sugar may lead to cancer of the breast, ovaries, prostate, and rectum.
15. Sugar can cause colon cancer, with an increased risk in women.
16. Sugar can be a risk factor in gall bladder cancer.
17. Sugar can increase fasting levels of blood glucose.
18. Sugar can weaken eyesight.
19. Sugar raises the level of a neurotransmitter called serotonin, which can narrow blood vessels.
20. Sugar can cause hypoglycemia.
21. Sugar can produce an acidic stomach.
22. Sugar can raise adrenaline levels in children.
23. Sugar can increase the risk of coronary heart disease.
24. Sugar can speed the aging process, causing wrinkles and grey hair.
25. Sugar can lead to alcoholism.
26. Sugar can promote tooth decay.
27. Sugar can contribute to weight gain and obesity.
28. High intake of sugar increases the risk of Crohn's disease and ulcerative colitis.
29. Sugar can cause a raw, inflamed intestinal tract in persons with gastric or duodenal ulcers.
30. Sugar can cause arthritis.
31. Sugar can cause asthma.
32. Sugar can cause candidiasis (yeast infection).
33. Sugar can lead to the formation of gallstones.
34. Sugar can lead to the formation of kidney stones.
35. Sugar can cause ischemic heart disease.
36. Sugar can cause appendicitis.
37. Sugar can exacerbate the symptoms of multiple sclerosis.
38. Sugar can indirectly cause hemorrhoids.
39. Sugar can cause varicose veins.
40. Sugar can elevate glucose and insulin responses in oral contraception users.
41. Sugar can lead to periodontal disease.
42. Sugar can contribute to osteoporosis.
43. Sugar contributes to saliva acidity.
44. Sugar can cause a decrease in insulin sensitivity.
45. Sugar leads to decreased glucose tolerance.
46. Sugar can decrease growth hormone.
47. Sugar can increase total cholesterol.
48. Sugar can increase systolic blood pressure.
49. Sugar can change the structure of protein causing interference with protein absorption.
50. Sugar causes food allergies.
51. Sugar can contribute to diabetes.
52. Sugar can cause toxemia during pregnancy.
53. Sugar can contribute to eczema in children.
54. Sugar can cause cardiovascular disease.
55. Sugar can impair the structure of DNA.
56. Sugar can cause cataracts.
57. Sugar can cause emphysema.
58. Sugar can cause atherosclerosis.
59. Sugar can cause free radical formation in the bloodstream.
60. Sugar lowers the enzymes' ability to function.
61. Sugar can cause loss of tissue elasticity and function.
62. Sugar can cause liver cells to divide, increasing the size of the liver.
63. Sugar can increase the amount of fat in the liver.
64. Sugar can increase kidney size and produce pathological changes in the kidney.
65. Sugar can overstress the pancreas, causing damage.
66. Sugar can increase the body's fluid retention.
67. Sugar can cause constipation.
68. Sugar can cause myopia (nearsightedness).
69. Sugar can compromise the lining of the capillaries.
70. Sugar can cause hypertension.
71. Sugar can cause headaches, including migraines.
72. Sugar can cause an increase in delat, alpha and theta brain waves, which can alter the mind's ability to think clearly.
73. Sugar can cause depression.
74. Sugar can increase insulin responses in those consuming high-sugar diets compared to low sugar diets.
75. Sugar increases bacterial fermentation in the colon.
76. Sugar can cause hormonal imbalance.
77. Sugar can increase blood platelet adhesiveness which increases risk of blood clots.
78. Sugar can increase the risk of Alzheimer Disease.
Hello Yellow, I also have PCOS and RA too. So my severe fatigue is
coming from both probably. As I have neither one under control yet.
I see my rheumy on Oct. 4th. My family dr. said since my glucose
level was fine, which he did a blood test for with no fasting, there
is nothing he can do for the PCOS.
To everyone else as well, when your RA is under control and you have
a flare up does the fatigue set it then? I have been having a bad
flare up all over this week. Especially in my neck and my back.
Today it is real bad in my hands and feet. The fatugue is not as
bad, but is still present. I am not falling asleep, but feel I could
go take a veeery long nap. I need to clean my house (which has not
been done all week), but just do not have the energy. I guess I will
do a little at a time.
I hope everyone has a great day and wonderful weekend!
What should I expect at my first visit with my Rheumy dr? Could
someone tell me so I do not go in there not knowing anything at all.
Should I tell him everything that is going on even if I do not think
it is RA related?
Anita
Hello kay,
I was drinking a lot of fat free milk for the
fear of Osteo. That is full of Vit.C,
but I have gone off that. (Rosacea). I
want to go to the druggist and ask him how much
Vitamin C I should have a day. I think the measley
bit I'm getting in my one a day vitamins isn't enough.
I will let you know when I see him. Everyone is different
and all we can do is read and learn what others are taking,
then regulate for our own body I guess. This is all mind boggling to me with diet and vitamins.
I am so glad I got onto this group as you been very informative
and honest with the ups and downs everyone has. Thats life,
what works for one, doesn't another.
Keep chugging along, Wally
Wally,
I am backing off some vitamin C after reading about problems. I got some flaxseed oil and keep forgetting to take it with my omega 3.
Kay
Thank you all for replying to my post. I don't see my rheumy dr.
until Oct. 4th. That will be my first visit to him. I hope everyone
has a great weekend.
Anita
owner of Swaps4meandU
When my RA was uncontrolled I would come home from work too tired to
even eat. It was terrible - I did not even have a full time job.
Once it was more controlled things eased up.
In the last few months it is getting worse (the fatigue) but now I
have Sjogrens also and it is also fatigue causer.
The iron pills I take help with the fatigue - if I miss them I can
tell quickly. You can develop "the annemia of chronic disease"
Annette
Well, I know it's the weekend and postings will probably get sparse.
Have a good weekend everybody!
Hello everyone,
I have been having extreme fatigue off and on here lately. I cannot keep my eyes open and I fall asleep just sitting on the couch or at my computer chair. And that is very unusual for me. I also find it hard to drive, because I have almost fallen asleep. Which I do not drive anymore when I a extremely exhausted. Does anyone else have this problem? Is this caused by the RA? I do not go to my Rheumatologist until Oct. 4th. I also have polycystic ovarian syndrome and I know that causes fatigue as well. This extreme fatigue has recently started about a month or so ago. It is not extreme everyday, but I am tired everyday. Just wondering if this is normal for RA.
Anita Martinez
Hi again,
Thank you for your welcome to the group and all the information you
have given me.
My ankle is getting bigger and bigger and sorer and sorer everyday.
My other ankle has a protruding boney growth. My hands, knees, and
hips ache. I have been on plaquanil for about 3 weeks and bextra
for over a year. I take about 2-3 darvocets a day but that doesn't
even help. Should I call my RA doctor? She hasn't diagnoised me
yet so I don't know if she will give me anything stronger. I did go
to my internal med. dr. and he said that he can't do anything more
than my RA doctor has. Help-all I do all day is put ice or heat on
everything that hurts. If I walk around the block, I am in tears by
the time I get home. Yesterday I soaked in the tub and cried my
eyes out.
Susan in Michigan
I just wanted to quickly post that all you taking Vitamin C... you can take too much. I was taking Vitamin C at the recommended dosages and ended up with cysts (bleeding) inside my bladder. I had to go for many intrusive exams to find out why I was peeing blood and the culprit was Vitamin C (mostly) and medications (very little). I just wanted to let you know this b/c what I went through was not fun, not fun at all. I was lucky that the bleeding stopped after I cut my Vitamin C dose in 1/2, but I would have had to go for surgery to remove the cysts if this didn't work.
Take care with how much Vitamin C you take.
Melissa
Many thanks for the welcome Lynne,
I am seeing the doctor this week to
get an appointment with a doctor as
you mentioned. I do need new ideas,
like you say its not like when I first
was diagnosed, but new drugs are out that
may help me keep on my feet and my stomach
healthy.
Thanks again, Wally
Hey guys!
I got the job!!
This is a huge shocker for me, since I've been looking
and interviewing in MI for 2 years, since before I
started my own biz!!!
Anyway, God bless St. Louis and all those who prayed for
me. Now I can do something for myself.
Yellow
currently buys there own because of no prescription coverage.I have 7
boxes of expired Enbrel.You would have to pay for overnite shipping E
mail me @ tvmanjon@...
Good afternoon,
I am the new kid on the block here today.
I don't feel new as I am 63 and a grandma
of 2. I live downstairs in my daughter
and family's house, I have my own apartment,
so I get to see the grandkids everyday. This has
been a blessing to me.
I have had arthritis (never was told what kind), since
I was early 30's and was on Motrin till 1999 when I
broke out into hives and was changed to Naperson.
I only stayed on these for about a month as my stomach
was just so irritated, and long before thought I was in
trouble stomach wise.
To my docs disgust, I refused anything in meds. Once the
initial shock was over I thought things were going well,
and they were up till this last winter.
My knee is very sore and swollen at times now,and I
sometimes can't get out of bed, my whole body and ribs
are so tight that I can't move. But then it can leave as quickly
as it began, and I have no pain at all!
My ankle has started to be painful
along with swelling when I walk ( I do a lot of walking).
I joined this list for new information on meds and other things
like vitamins that I can be on. I'm looking to getting to know you
and reading what you are going through if you are like me, the
Lord lays me on my back in order to look upand depend on Him.
For now, Wally
[LINK]
HI ALL,
i'm a new member of this group,and i'm so happy joining it.
Actually i have a rare disesse called TAKAYASU,(i wonder if anyone
in this group was diagnosed by this disease),it's an inflammatory
disease of unknown etiology that affects the aorta and its
branches,it caused me hypertension,and most of my veins were
affected,i'm now a 32 year old female who lost all her dreams and
her aim is searching everywhere for the right medicine to this rare
disease,that attacked my whole life changing it to a sad,depressed
one.
sometimes it's good to share your experience with others especially
those who suffer from other illness,cause i think the pain is the
same although the only difference could be the name of the disease.
with respect.
MIRNA.
on Enbrel it is a battle because the drugs will work, but not forever....my
body seems to "get used to" the meds. and then they fail to help....then you
and your doctor search for new combinations of meds......hang in there; we
all have good days to treasure.....gentle hugs, Marcia
Marcia,<<
I have been watching the same process about my body getting used to the
latest meds I throw at it and the fact that they give relief for a time and
then fail. I thik it is all in our immune disorder that enabled the RA to
take hold to begin with. I am very sure that, in my case, my immune system
ultimately recognizes that there is something new in my chemical cocktail
and then mutates to fight it. So I have been playing with short courses of
everything. I use a lot of alternative therapy prodcuts as well as the main
line defense meds to try and keep me going. My biggest challenge is to
reduce the steroids that have ruined my immune system. If possible, I will
then do eveything I can to "boost" it in an attempt to normalize my body.
It has been very difficult as I have been on steroids for over 10 years and
virtually have no adrenal function left. I found that Enbrel was a welcomed
miracle in turning off the RA but some of the side effects were more than I
could handle. I also find foods can really set me off - Andy can always
tell if I have had a Snickers bar as the day after I pay the price for my
indulgence. VBG! Good luck to you and everyone else here in this daily
battle.
warmest regards,
Darcy
In the summer we spend half the week up in the mountains at 7300 feet, and the
other half at 1000 feet. I feel fine up in the mountains, but the day after I
come home, I can hardly move and it is just beginning to get better when we go
back up again. Anyone else have problems with change in altitude?
I have only been dealing with this for about a month, and it seems like I have a
"Joint of the Day." One day my pinky fingers are so sore I can hardly move
them. The next day they will be better and my right ankle swells up like a
baloon, then the next day it is my thumb, etc. I never know what to expect
every morning when I wake up. I go back to the rheumatologist on the 13th and
he is going to start me on MTX or Palanquil (sp?) or both. He wanted to do more
blood tests first and I am just on naproxin now. (He is testing for parvovirus!
I thought only dogs got that!)
Sharon
I have gained about 40 or so pounds since I developed RA 6 years ago. I have decided lately that I have to do something about the weight gain and I found the perfect plan. I am on the South Beach Diet. It is an amazing plan that in the 1st two weeks you are restricted on the carbs you can eat so that your system can clean itself out. Then you can slowly add foods back to your life that you enjoyed before. By the end of the diet I will be able to eat almost all the food I used to with slight modifications. (ie. brown instead of white). The nice thing about this plan is that I am able to eat until I am full, so I have not been hungry at all. I am finding this first two weeks a little difficult. But, at least I know there is a light at the end of the tunnel. I am hoping to lose min. of 30 pounds, but i am happy if I just lose a bit too. The lack of activity and drugs that side effect are weight gain are not a good combo.
I will keep you updated on my progress... so far in 5 days... 3 pounds.
Melissa
Hello everyone,
I do not post on here to much, but I wanted to share a company that I use that has shoes and also other things that help with arthritis. I have bought a couple of pairs of shoes from them, and I have been happy with them.
I hope this can help!
Soft Hugz, Linda
http://www.footsmart.com/ProductList.aspx?productCategoryId=16
I love the San Antonio Shoes (SAS). They are sooo comformable and last for over 10 years with daily wear. They also have a walking shoe that is almost stylish and you can wear at a professionally office. They cost about $90 and come in 4 browns, navy, wine, pewter, black, etc. They fit a insole and are all good quality leather.
Lynette
Hi I posted not too long ago. Had pain in fingers, hands feet,
knees, went to dr. sent me to Rheumy. Did blood work, RA test
negative but other tests showed something out of wack - Dr. based on
symptons is pretty sure I have RA, said it may not show up for a
while in blood work. Also took hand x-rays, finger showing some
arthritis. Based on pain and symptons in hands pretty sure may be
some carpel tunnel going on but doesn't want to test for that now -
says its painful. Started me out on Vioxx - no improvement. Now I'm
on celebrex was improvement 1st month but this past week or so I'm
not doing good. Everything hurts on me. hands, fingers, knees,
bottoms of feet, even elbows. I'm so new to this. I see you all
posting about flare ups, is there good and bad times and do they know
what triggers this? Also is it normal for the medicine to work the
first month or two and then not or could this just be one of those
flare ups. I read everyone elses post and am grateful that I'm just
on celebrex right now. But am scared that this isn't working. My
mom says I need to exercise. I feel like a mack truck has run me
over the last few days. Do you all exercise when you are feeling
this bad? Also did the RA test show negative for any of you at
first? He also mentioned Lupus once, but still says he's pretty sure
its RA based on all my symptons etc. Thanks for the website.
I went to Mall of America yesterday, determined to find decent-
looking, comfortable shoes for work. My podiatrist had told me that
Nordstroms, though expensive, was a good place to look because of the
selection and the help from staff. I started there, looked everywhere
else, and then returned to buy two pairs of Munroes,which came in
double wide (didn't know there was such a thing) and were deep enough
for full orthotics. Expensive, yes. Thought I'd pass that along in
case anyone else is feeling as frustrated as I was.
Sierra
I smile when i read about some of the pick and choose and ask what helps for the
arthriti. I have been there and done that.
To others i have been on pred and boy do you gain weight with that but i think
you cannot be on that to long because i was and i ended up with some side
effects and also i gained alot ofweight. I tried mexo alone but i found that as
the arthritis progressed it was not enough. So i went on and on trying all kinds
of things which i think everyone has to do til they find out what works for
them.
I am now on enbrel (5yrs) with mexo and i seem to have found my nich. I don't
think we will ever be free of pain until there comes a cure. Take the time to
find a rhumy you like and explore all your outlits with them.
I also use motrin 800ml for swelling and takeing the edge off the pain. I think
of all of you and i wish i could help you all because i am getting progressivly
worse but i keep fighting. Check out thw web sites some have suggested and check
them out they are helpful. Also go to your local arthritis foundation groups who
help you to try and cope with this awful desease.
Well i guess i will go back to just reading and if i can help with ideas let me
know. God Bless
Hi everyone! This is my first post and am seeking everyone's opinion
(well females only LOL) on the thoughts of getting pregnant again
now that I've been diagnosed with RA. Here is a run down of
my "history" maybe for you to judge where I'm at with this---
I was diagnosed in March with RA. From what I know my RA factor came
back high, as did my sed rate; not sure about my ANA. My rheumy did
another test (a co2 or something like that) which also came back
positive. I was put on Mobic 15mg daily, and went for a followup and
was then also put on plaquenil 400mg daily. Neither seem to be doing
anything though, but I'm not crippled so feel I shouldn't be
complaining.
My rheumy is guessing that I've had this for about 2 years already
and just never put the pieces together. I've had several flares that
I can recount now that I never even thought about being ARTHRITIS, I
just turned 29 and previously thought this disease was for old
people LOL; how sadly mistaken huh!
My pain tends to be primarily in my feet. My feet hurt almost every
day; I am now addicted to big thick slippers. I also bought the
ugliest pair of addidas tennis shoes just because they were comfy
LOL. Anyways, I think since March I've had a flare in my knee,
shoulder, elbow, hand, and consistantly in my feet.
Here's my dilema. My husband and I were tentatively planning to get
pregnant again in January. We have 2 children already (ages 7 &4)
but I'm worried now. My Rheumy said it's fine but obviously she has
to know about it ahead of time to stop/change my meds but I'm still
worried about it. She said most of the time the RA will go into an
almost remission state until after delivery but will then flare
again. I'm just concerned about how fast this disease is going to
progress, will pregnancy make it worse or will it get so bad so fast
that I won't be able to care for a baby, let alone my other
children? I feel I might be being selfish if I insist on having
another child if I can't be an duty mom 100% of the time ya know.
I tend to babble so will stop for now and see if I can get any
insight from any of you out there :)
THANKS,
TRACY
Hi -- I was recently diagnosed with rheumatoid arthritis after a few
months of chronic pain. I'd had lower back paid for years and just
attributed it to lack of exercise. I became less and less active as
various joints began to ache, which I attributed to too much weight
and my age, plus lack of physical activity. I finally experienced
swelling in my fingers and hands which I thought was an allergic
reaction due to rubbing various ointments on my aching back and
joints. When it began to hurt to pick up a stapler at work or lift
more than a couple of files, etc. I began to fear that I would no
longer be able to work, but tried rest and various ointments. Rest
just seemed to increase the pain, rather than lessen it. Then my
feet and ankles started getting puffier -- since my mother
experienced congestive heart failure after suddenly gaining nearly 25
pounds of fluid, I got scared and went to the doctor. One look at my
hands and ankles and she sent me to the lab for extensive blood
tests, etc. My rheumatoid factor was up, she said so she prescribed
a packet of 4mg methylprednisolone tablets to take (6 the first day,
5 the next and so on, until I took 1 the last day) and 50 mg of Vioxx
for the pain. I took them before bedtime and felt wonderful the next
day -- the first time I'd been able to function normally in a long,
long time. My fingers continued to feel feverish and achy and I was
worried about having a relapse (just the thought of going through
that sort of pain again was so depresseing), so I went to see her
again. She referred me to a rheumatologist who sent me for more
tests and took me off Vioxx and prescribed high doses of calcium
supplements, 1MG folic acid per day, and put me on 10 mg. prednisone
per day.
My pain kept getting worse (as a result of being off Vioxx) so I took
a few that I had left and the pain was immediately reflieved. I went
back for a follow-up after 10 days and told him that he must give me
something for pain as without it I couldn't do the daily things I
need to do just to live and work. So he reduced the Vioxx to 25 mg.
and said he wants to eventually get me down to 15 mg. per day, and he
also prescribed 15 mg. of Methotrexate to take once per week. I went
back after a month and he said that my swelling hadn't gone down much
and I had gained 31 pounds since I first went to his office about 6
weeks before (I swear I wasn't eating more than enough to gain maybe
5 pounds tops). He said the large weight gain was due to the
prednisone. I asked him to take me off it because I was ballooning
up and couldn't keep gaining weight so fast -- that I felt too
bloated to do anything and was getting winded pretty easily. He
didn't like the idea, but he prescribed a large amount of 1 mg.
tablets for me to gradually reduce my dose by 1 mg. per week. I'm
now down to 5 mg. per day and the swelling in my hands and ankles is
coming back (although I'm not having pain, thank god, due to the
Vioxx).
Has anyone else experienced a flare-up when coming off prednisone?
Also, it doesn't seem to be doing much for me. I want a medication
which will slow down the advance of rheumatoid arthritis and I don't
know what role prednisone has in that. Is methotrexate supposed to
do that? My doctor explained that it helps with the autoimmune
system . . . something about how I have an overactive autoimmune
system which caused the arthritis. But what is good for the joints?
Also, I'd like to know if any of you have had good luck with high
doses of glucosamine and how much are you taking per day? Thanks!!
(Geez I am so glad I found this group...at last, someone I can whine
to when I'm in pain and everyone else thinks I'm exaggerating....)
I mostly lurk but felt answering you about your bronchitis was too
important. I believe you are on Methotrexate?? One of the side effects of
this drug are lung complications. I know as it almost killed me. I already
have a rare lung condition and the MTX put me right over the top. I had
been lung infection/bronchitis free for years till I started on it. Then we
could see a major decline and how seriously my immune system was
compromised. Antibiotics only work on bacterial infections but they are
also used as a preventative, in your case, to make sure your weakened
condition can't open you up to bacterial infections.
I finally quit the MTX and opted for Enbrel. It has even more risk for
folks with lung problems but it really knocked down my RA. Sadly my PT has
been documenting a serious decline in lung function again. Had to have some
minor surgery so I stopped taking it for a few weeks and my lungs improved
tremendously to the point where I have been able to walk a bit now without
supplemental oxygen.
So far I have a few twinges of the RA rearing its ugly head but not the real
crippling pain I had grown to live with. I can't help but believe that I
will remain off the Enbrel until it gets really bad again then only take
short courses of it for maintenance since it really has affected my
breathing and healing capabilities. It only took 2 weeks on the Enbrel
before I could feel real relief. Just wish we could find a way to cure our
immune systems someday so this is a done deal. Sorry, so long in content.
Going back to lurk mode again.....
Darcy (in Virginia)
I am seeking information on some symptoms I have. My legs have been
giving me a lot of trouble for sometime now especially my left foot.
There is numbness in both my legs from the knees down. But I have
excruciating pain in my left foot especially when I am laying down.
When I move my foot a pain runs through it like I have hit my funny
bone. It is also difficult to walk when I first wake up. Tonight my
left ankle is hurting. Has anyone else had or have symptoms like
this with RA?
Joyce
Hi Everyone, it's Melissa. As some of you might know, I started a support group 2 years ago in Vancouver, BC and surrounding areas for young adults with arthritis, fibromyalgia and lupus. We do not have the resources to do many of the things that we would like so we have been doing different fundraisers and it is the time of year for our favourite... ENTERTAINMENT BOOKS. I hope that some of you from this board will help me and the Arthritis Social Crew accomplish our goal to raise funds for much needed marketing and deposits on further fundraising ideas we have. If you are interested please continue reading below. I have copied the email I sent out to my family and friends. I hope everyone's arthritis is doing ok... mine is flaring today, but it's my fault for going clubbing on Friday night :P Melissa
WE HAVE ENTERTAINMENT BOOKS!!!
The ARTHRITIS SOCIAL CREW is fundraising again this year to be able to increase our marketing efforts and more importantly help provide our members with non-barrier access to this much needed support group for young adults with arthritis, fibromyalgia and lupus.
Help support us by purchasing an Entertainment or Gold C book
$46.00 for the larger Entertainment Book and $12 for the smaller Gold C book. All proceeds go to the ARTHRITIS SOCIAL CREW. Books will be available at all of our activities, Life Chiropractic (Dunbar & 25th in Vancouver), and Melissa, Kate & Desiree until December 17th. You can also email SocialCrew@... if you want a book and we can get it to you OR you can go to http://www.entertainment.com/support and enter our seller # 99956 so we get credit for the book and they will send it directly to you. If you are from out of town you can also go to this link and purchase your local book and still help the Arthritis Social Crew.
We hope that you will help with this great fundraiser for the Arthritis Social Crew. Please feel free to send/forward this email to everyone in your address book to help us raise awareness of the Arthritis Social Crew and to help sell more books.
MELISSA, The Arthritis Social Crew
SocialCrew@...
ASC's webpage link:
http://www.arthritis.ca/local%20programs/british%20columbia/contact%20us/asc/default.asp?s=1
Hi,
I'm really trying not to be too wimpy here but I'm hoping someone will have some great home remedy/advice.
I've somehow managed to get Bronchitis - I'm on the antibiotics and my doctor has given me some inhaler thingy but it takes a bit for the antibiotics to kick in. Right now I feel like crap, have coughing bouts and loose my vioce if I try to talk for more than 2 minutes. Topping it off, the joints have now decided to join in the fun! I've been drinking lots of fluids - any suggestions??
Angela
"I can resist everything except temptation" - Oscar Wilde
"Physics is like sex: sure, it may give some practical results, but that's not why we do it."
-- Richard P. Feynman
---
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My Friends,
Well I just got home from my second visit with my new RD. (My old one
retired...) I am definitely NOT impressed with him. My old Rheumy
(lots of affection there) sent all of his remaining patients there.
My first visit didn't go well either. He came into the room without
even looking at my charts and just said "What kind of problem do we
have here?" After explaining every thing to him (that was in my
charts) of what has been going on; symptoms, pains and therapies. He
said that there didn't seem to be any indication that I had RA!!! For
the first time in my life I got mad with a doc (no capitalization
here on purpose i.e.; no respect for him). I asked him, then why had
I been going thru all of this hell for the past 3 years? Plaquenil,
Sulfadiazine, Prednisone Methotrexate and Humira in different dosages
mix's and such. He said OK then we'll continue with the treatments
and up the dosages to Humira every week and Methotrexate injections
to twice a week at .10cc each and to come back in two months. Well
during this time I had the worst flare-up I have ever had and had to
take some of my wife's Lortab that she had left over from her last
surgery. My Percocet and Darvocet didn't touch the pain. Anyway,
today I go in for my second visit. First thing he walks in the door
and says "Any questions?". I was floored. I told him that HE had
asked me to come back after 2 months and this was it. He again went
thru the whole thing of how except for the pain, swelling and
tenderness I had no signs of having RA. I took my records and left.
Found a new Doc that a friend recommended and made an appointment.
Bad news, can't get in till November. Oh well. Life goes on...
Thank you all for allowing me to vent
Ray in
OKC
Hello, just wanted to let everyone know I have started a new group. If you are interested in swapping and having pen-pals please check us out and join in the fun. Would love to have you there! Swapping or pen-palling in not mandatory. You can sign up for as many or as few swaps as you like and have as many or as few pen-pals as you want. So, come on by and have some fun with us.
Hi Group,
I am new to this group and of course I have questions regarding RA.
My blood work had a positve ANA three times and the fourth time
negative, all other tests were negative except Sed rate was slightly
elevated. I had a bone scan and that showed inflammation. I have a
boney growth on my left ankle and a swollen right ankle and my
fingers, wrists, and elbows hurt all the time. I have also been
diagnoised with fibromyalgia with lots of muscle pain. The doctor
put me on a 3 week dose of predisone and then put me on a 400 mg
dose of Plaquinil. My question is, my internal medicine doctor says
I have inflammatory arthritis and my rheumatologist has not given me
a dx. I am really up in the air about what I have and would like to
know what I am dealing with. Has anyone else had this problem of
being diagnoised?
Just a note. When my MIL was ill, we were able to get the meds free
from the manufacturer because of her limited income and no medical
insurance besides medicare. If you go to the manufacturers website
and search for "patient assistance" they usually have a form for you
and your doc to fill out. Her meds would have cost over 300/month
and we got them free. T
Yellow,
I was a participant in a clinical trial for an oral medication at
Wake Forest University Baptist Medical Center in Winston-Salem, NC.
That's near where I live. It's a teaching hospital.
If you're in a study, you generally have to fit the specifics they
are looking for, but you get free care for your chronic illness and
they observe you while you're taking the medicine. They also outline
in a contract what they will do and what you're supposed to do. I
should also mention that the first thing they verified was that I
actually had the disease in question. All this information gathering
was funded by the drug company and test results became their
property.
Participating in a study literally changed the course of my chronic
illness for the better. I received 6 months of medication after the
study for free as a thank-you for participating(Value $6,000). I
also got to see a world class physician in the area of my illness
for almost 2 years(for FREE). The study(drug company) even paid for
my parking in the parking garage while I was at the hospital.
You could do a little checking at the National Institute of Health
and see if there's any kind of clinical trial for RA in Michigan or
nearby. Here's a url that might get you started:
<http://www.niams.nih.gov/rtac/prog_staff/director.htm#RHEUMATIC_DISE
ASES
I was diagnosed for my chronic illness while I had no insurance at a
local ministry-run clinic where different physicians and nurses
volunteered their time. They also had a pharmacy where I could buy
medications at a reduced price. You may not always get the newest,
priciest drugs here, but you do get something.
This is not a perfect scenario, but it will get you started until
you can do something better for yourself. I had to go through a year
where my dh's insurance would not cover me because I had a pre-
existing condition. Luckily, that 6 months of free medication I got
from the study was received while I was going through that year. I
managed to get through that period of time without a flare-up of
illness.
Going this route is not convenient. You have to wait longer and you
have to provide more information. Your income may keep you from
getting into a clinic, but you should be able to ask questions while
you're there and possibly find a doctor who will take you "self-pay"
until you can do something else.
Hope this helps,
Nita, the survivor :0)
A dear friend of mine has recently been diagnosed with RA, as in the
past three days. She is only 24 years old and has yet to have a