Rheumatoid Arthritis

I agree, Diana, about being more stiff in the morning when I've slept
longer. When I get 7 or so hours of sleep a night, I'm stiffer when I wake
up. But I prefer to be stiff and sleep more. When I sleep less every night
for a week or two, I tend to feel grouchy and have little patience. My
rheumatologist gave me an Rx for Ambien to use when needed because I'd been
having weeks of low quality sleep. Funny thing is, once I filled the Rx, I
started sleeping better, so I haven't tried it, but it's comforting to know
it's there if/when the poor sleep pattern starts again.
Jan

Does anyone older on this list wonder if they tire easily because of the RA
or because of natural aging and slowing down? I'm 63, have had RA for 15+
years and some days I can't decide if it's my age or the RA that is tiring
me. I mention this because I'm sometimes concerned I'll give my
rheumatologist the wrong impression about my fatigue and I'll end up taking
more meds than I need. Am I worrying about nothing?
Jan

Sabrina,
Click on "MY GROUPS" and see if this group is still in your list. Iff
it is go to the right hand column "MESSAGE DELIVERY" and you can
change whether you recieve emailsor not. Also at theis same place you
should be able to delete this groups from you list of groups you are
a member of.
Hope this helps,
Jay

Jay,
Hey, how did the rheumy go?

Take care,

Steph in VA

As some of you know my RD switched to to injectable Methotrexate. I
did my first infection last night.
Guess what??? Even though the dosage was increased I had no ill
effects today!!!! I don't know if that is normal but I'm thanking the
good Lord for it.
God Bless you all,
Jay

Dear Group Moderator,
Hello. We have contacted you in the past and hope you will consider
our request. We are researchers from the University of Iowa and San
Jose State University who are studying communication and the medical
encounter. We are requesting your permission to post a link to your

Hello Group!

I am a newbie to the group and have been just reading the e-mails. My husband has had RA for 10 years. Takes lots of meds. He has just started remicade. I am wondering how long it takes to work and what dose is anyone at. Any information would be helpful, since we really don't know what to expect.

Charlie's Wife

Hello to everyone! My name is Heidi, and I am 33. I am awaiting
diagnosis. My symptoms started the last week of June - my hands
felt swollen and stiff when I woke up in the mornings, but it would
pass, so I didn't think a whole lot of it. Right after the 4th of
July, the stiffness didn't go away, and went to my elbows. It got
uncomfortable, and then I got concerned. I went to the local ER,
thinking I was experiencing some sort of allergy or something. My
sed rate was 28, ANA negative, and I was sent home with directions
to take ibuprofen 3x/day and tylenol 3x/day. After several visits
to my local doc, and more blood tests, which all came back
essentially normal, I was referred to a rheumatologist at Mayo
Clinic in Rochester, MN (I live in a town nearby). They did some
more tests; the sed rate increased to 30, and x-rays of my hands and
wrists showed some osteopenia. Still no definitive diagnosis; the
rheumatologist said that although I haven't had it long enough to
make an official diagnosis, signs point to RA. I go again to see
him on the 11th of Sept. I have been taking Celebrex twice a day,
and tylenol 3x/day. I think things are the same, if not even
worse. My hand joints don't like pressure applied to them, and when
I move them at any sort of an angle, they scream! My elbows,
wrists, hands, and knees are the worst, but I have pain in my ankles
and feet as well.
I was supposed to call the rheumy a couple of weeks before my
appointment to report how things are going, so that if there was no
change, they could order more tests and possible joint scans for my
visit. I left a message for him yesterday, so I hope that I can get
some answers and a diagnosis. It seems strange to complain about
the length of time I've been dealing with this when I read how some
of you went undiagnosed for such long periods of time! I just hate
not having any answers. It's frustrating when I'm so miserable, but
yet the tests don't reflect the pain I feel. At least the rheumy
didn't look at me like I was crazy or tell me it is all in my head!
The rheumy told me that if I was still dealing with the pain on my
next visit, they'd be adding another med, bridging it with the
Celebrex. I have done quite a bit of research on the meds, and it
seems that methotrexate seems to be the front-runner as far as usage
is concerned. Is that usually the first med tried? Since it takes
awhile to take effect, is prednisone usually prescribed to bridge
it? I know everyone's circumstance is different, but I am nervous
and wonder what to expect.
Exercise is another thing I'm wondering about. Before all this
started, I gave up my gym membership and bought a Bowflex and a
Gazelle Edge (elliptical trainer). The Gazelle is pretty low-
impact, but does anybody know about Bowflex's usage in RA? Is it
safe? When can I exercise? I have read that if you're in a flare,
you shouldn't exercise, but rather wait until the flare passes. But
how would I know if I'm in a flare vs. just the garden variety
pain?
Sorry if these are stupid questions, and sorry about the length of
the post.
Take care everybody! Thanks in advance for any advice.
Heidi

Hi everyone,
I agree with the rheumy Sandy heard speak. My doctors believe one of the reasons I've had such a great response to Remicade is because I started it 5 months after I was diagnosed (8 months after the symptoms started). I started methotrexate 2 weeks after I was diagnosed. Regardless of potential side effects, I think it was the right decision.
Take care,
Stephanie in VA

I read following lines at arthritisinsight.com. Can anyone tell me about this in detail????

************
Another new treatment is a device called the Prosorba column. It mechanically removes inflammatory antibodies from the blood. The blood is first removed from the body through a catheter (a process called apheresis) and then passes through a column coated with a substance called protein A, which binds to the antibodies. The blood is then returned to the patient.

Hassan

Hi Nancy,
I've been on Azulfidine EN for about 3 years. I take 2000 mg twice a day. I had a similar reaction when I first started it so the rheumy switched me to the brand name instead of the generic. I haven't had any side effects since then.

Take care,

Steph

Folic acid should NOT be taken on days when you take methotrexate. I think this is what doctors advise
Hassan

Does any one have any idea why there is such a diversity in the
amonts and times that we take Foic Acid?
I take 1mg daily to go with my 10mg of Methotrxate weekly. Some
people take all of theirs on the day they take their Methotrxate.
While i'm on the subject, is it better to take Prdnisone twice a day
or once a day? I take 20mg once daily and am wondering if it would be
better to split into two doses.
Yhanks for any input and advice,
Jay

Thanks to you guys for your responses. I feel pretty lucky so far in
that my RA had dramatic results with methotrexate... (maybe that is a
ray of hope for those of you newly diagnosed) I went from being
unable to walk to dancing again with some pain but not enough to
stop. I am planning on doing floor nursing (for those of you who
asked) because so far my hands are relatively unaffected (or rather,
well controlled) but luckily I also have a passion for the research
angle so if things change, I'm ready. I'm just crossing my fingers
that I get through school without major crisis. So far so good. My
biggest challenge is to know when enough is enough... I've never been
good at that. I just have to pace myself a little better to avoid
those major flares... I've resigned myself to the fact that coaching
while going to school may not be such a hot idea. Having you guys as
a sounding board is terrific. Thanks again. Sarah

Hello all,
I don't think I've actually ever posted to this group although I joined a
long time ago as no-mail. It was few weeks ago that I started getting
individual emails sent to me only because I recently switched to a new
Rheumy who is absolutely on the ball so now I'm feeling like maybe I have a
chance. My name is Nancy and I'm 41. I have 2 long haired cats and a ton of
houseplants. I have a 21 yr old daughter who lives with her boyfriend. I
used to tat and knit, but now I'm lucky if I can take out the garbage.
LeAnn, thank you for voicing a plea I have felt for over a year! I've been
diagnosed with zero negative arthritis. I had a bone scan recently that
showed active inflammation in almost every single joint and one spot in the
center of my back. I have arthritis in more places than I actually knew
about. :) Anyways, this new Rheumy has me taking 25mg of Methotrexate once a
week and I've just started Sulfasalazine which will be progressively
increased until I'm taking that 2 pills twice a day. I've been on 2
plaquenil a day and mobicox for over a year. I'm on drugs for hypertension,
anxiety, anemia, stomach problems (from taking all this other stuff!) and
other disorders that the gents would probably rather not hear about. I feel
like a walking drugstore. :)
I hear some of you talking about the "biologicals" quite frequently. I
looked at the website for Enbrel and I can see why I'm not on it. I also
have diabetes although I'm not on medication for that. I would like to hear
more about these and any of you who have had experiences with them. The
methotrexate isn't so bad.. I take them at bedtime and consider the
following day a write-off as I'm too tired to do much.
So that's my introduction. I forgot to mention I'm living on the westcoast
of BC Canada.
*hugs*
Nancy

I WOULD JUST LIKE TO SAY THANK YOU TO EVERYONE THAT REPLYED TO MY
MESSAGE.ALL THE ADVISE GAVE ME SOMETHINGS TO THINK ABOUT AND ALL THE
E-MAILS HELPED TO REALISE THAT I AM NOT ALONE. LeAnn

OK... need advice from you knowledgeable RA veterans. I am one of
the lucky ones who methotrexate is seemingly working pretty well
for. I managed to ween myself off the prednisone and now am taking
15 mg methotrexate weekly and 150 mg of an anti-inflammatory daily.
I choreograph beam and floor routines for gymnasts as well as
occasionally coach and I am starting nursing school this fall.
Obviously what I am most concerned about is the what ifs and what
nexts. I flare up after choreographing all day or if I'm on my feet
all day (not to the level of many of you out there) but because joint
pain (as a former gymnast) is something in the past I've been used
to... I just kind of shake it off and keep going. (Even limping)
Choreography is my moneymaker. Am I contributing to joint damage or
is it an okay thing to continue if the pain tolerance is within
reason and I am on a DMARD? I know it is something to run by my doc.
but occasionally I get not so straight answers from him. I admire
you all so much and your experience and wisdom. Thanks... Sarah
Oh... by the way... no tumbles down the stairs lately. Must be that
I'm back in the gym.

Hi,
I have been having symptoms for two years now and finally saw a rheum dr two
weeks ago 9of course on a day that my symptoms were almost undetectable for
the first time in 4 months). All the test results came back normal except
to tell me that I had Parvovirus B19 at one time (um, never heard of it
before let alone when did I have it?). She said the x-rays of my hands
looked "great" and she saw only a "slight degeneration of the 3rd and 4th
knuckles" on my right hand. Silly me, I am 35 and to me a "slight
degeneration" of anything seems out of line.
Her letter concluded that "All the results are encouraging, nevertheless,
because you are noticing some changes in symptoms, it is important to
continue to monitor for the possibility that you are developing an illness
in the family of connective tissue diseases".
Huh? O.k. I will probably call her to clarify a few things but still, huh?
Should I be happy, should I feel like I wasted both of our time, should I
just quit bothering people with my petty problems?
I am not by far terrible but am worried if it worsens. So my blood says
there is no inflamation, then why do my joints hurt every day, all day?
Geez, at 18 years old I gave up drinking (among other things) to keep me
from spending my life in a fog, so now that isn't sounding so bad right now.
I don't know but getting an answer in this is almost worse than the
symptoms. I know little old ladies who had it all their lives and never got
treatment, they didn't complain just kept plugging along. Perhaps I need to
be more like them (oh that's right, they didn't go to work everyday, they
were stay at home moms).
Very discouraged,
Dawn

Hi all,
Thought I would follow up on the Enbrel saga. I posted that it had
made me ill the second day after my first injection but I think that
was a fluke. On the third day I felt like Wonder Woman. I am serious.
I felt terrific. This tapered off and then I took the second shot. I
have now taken three shots and do my fourth tomorrow. I am taking
Bextra once a day also but no other drugs. I am very hopeful that I
will continue to improve. I also believe that the Parvo virus is on
it's way out. I'm sure that is helping tremendously. Jay I thought
I'd let you know that my family doc here in Homer says there is a new
rheumatologist that has moved to Anchorage. A woman I believe and I
know absolutely nothing else about her. Hopefully she will tought out
the Alaskan winters and stay around. Good luck on your appointment.
Janet

Hi,

Actually, nodules can occur in almost any type of arthritis. I have Reactive Arthritis and have nodules on my jaw, fingers, wrist, hip, & toes. (only on my left side, though)
Steph in VA

I WOULD LIKE TO KNOW HOW TO DEAL WITH THE EFFECTS THAT THIS DISEASE
IS HAVING ON MY LIFE, AND MY ABILITY TO DO WHAT I USED TO BE ABLE TO
DO BEFORE VERY EASILY. PLEASE E-MAIL ME WITH ANY AND ALL COMMENTS,
THANK YOU.

It is my understanding that most of the newer anti-inflamatory
medications out there today contain lactose as an ingredient. This
can cause somewhat of a discomfort for people like myself you are
lactose intolerant. I was wondering if any of you might know of an
anti-inflamatory that does not contain lactose. Dolobid is the one I
am taking now, but it does not seem to be helping as much, and that
is why I am interested in finding out about new ones.
I am also looking for a good RA Dr. in Connecticut. Please let me
know if anyone knows of one in the Central CT area.
Thanks,
Vicki

I have been taking prednisone for what seems like months now. I have
been trying to get the dosage down to 20mg and everytime i do i have
more pain and stiffness. I now have it at 25mg and can just tolerate
the discomfort but i am frequently needing a cane for support and
balance when walking alot. I am quite stubborn about getting the dose
down, but dont know what else to do. I dont want to be on this high a
dose for a long time. I have started my methotrexate treatment, on my
fifth week now. Any suggestions?

Hi I am 58, will be 59 next month and have arthtitis, fibro, heart, diabetes, high
blood pressure, depression, problems sleeping.
My dr. did some blood work but says I don't have RA. I have
nodules on several of my fingers. I also have pain in my knees
and hips, also in my feet and hands. My hands sometimes I cannot
even open a jar, It hurts and I have not strength.
I also have a pinched nerve in my hip.
He said the blood work does not say RA, but said there
are many kinds of arthritis. do the
nodules mean I have RA? I take for the arthritis and fibro
celebrex if needed, 100mgx2 day, celexa for depression 40mgsx1 day,
then I take other meds for diabetes, heart and high blood
pressure. Everything seem to be under control with my
other health problems thank God . I also take ultram 3xday for pain if needed
and vicodin for break through pain. I also take tramadol 100mg
at bedtime to help me sleep. The dr. just raised it to that and
it sure is helping. I have a lot of stress at
the time, my husband and I of 35 years split up in January,
he has a track record with other women and I am just weary of
going through that again. We also went bankrupt on our home
and I now have nothing. My job was terminated in June. I am
staying in the home at this time as it has not been finished yet,
then I have no idea what I will do. I signed up for SSD and SSI
so hope I will be able to get it. Thank you for listening,
Joy

Hi all,
I am just starting prednisone and only a low dosage....10 mgs per day.
They have also started me on Rocaltrol 0.25 mcg twice daily
I have been taking 25 mgs of methotrexate per week
Folic acid 5 mgs once per week
i brufen retard.....800 mgs twice daily.
I will be eventually be coming off ibrufen and maybe be able to think about
cutting my methotrexate down abit.
Does any one know anything about Rocaltrol?
Also I will be trying a drug called Arava as soon as we find someone to
fund it.
Does any one know anything about this as well?
Cheers,
Paulette

Hi all
Well yesterday was the bigh day for me to start the Enbrel
injections. I didn't think it was bad at all. Very easy to do and no
pain from injection. I didn't notice anything yesterday but today I
have been feeling very tired and do have considerable diarrhea (sorry
for the details). Has anyone had similar experiences with Enbrel when
first trying it. I remain hopeful and hope to have more positive
results to report. The parvovirus seems to be leaving slowly but my
knees are still pretty bad. I am starting physical therapy next
week.Thaks for listenning. Janet

I used to have long hair... just cut it short today since husband
has been deployeed and can no longer wash, dry and brush it for me.
I take 20 mg. of Methotrexate a week and you would never know by
looking at all the hairs on my head.
-Diana

Hello,
I do not have shin splints, but I do have flat feet and nodules on my toes & ankles. I wear Brooks walking sneakers. They cost about $90 a pair. When I'm done with them (but they are still wearable) I bring them back to the store, get 10% off on my next purchase and use it as a donation b/c the shoe store donates them to a homeless shelter. They are really worth the price because my feet are happy in them!

Steph in VA

Hi,

I am new to the group. I was recently diagnosed with psoriatic arthritis. Previously he had also said inflammatory arthritis. For several years now, he had said fibromyalgia. Do all these run together?

Elizabeth

Hi, Everyone I live in Yuma Az. & I need to find the local office of
the arthritis foundation & or any other support type groups or
orgs.that can help me in finding & getting proper treatment &
diagnosis with my arthritis.Any help in this direction will be
greatly ! appreciated !1 Thanx,, D.A.Morgan ,,,damorg2001@...

Hi ! ,, I live in Yuma Az. & I need to find the local office of the Arthritis Foundation & or any other group or org . that can help me to find a good M.D. & some support in my struggles . I need to find proper diagnosis & treatment & etc. ANY help will be greatly appreciated ,,,Thanx,, D.A.Morgan ,,,damorg2001@...

This information was helpful. I think I am going to buy myself a new
pair of shoes. Thanks for the tips.
-Diana

Thanks for letting me join!!
The woman I want to be my girlfiend just told me that she has RA.
I'm pretty ignorant on the whole thing. I've read a few of the posts
and believe this group will be very helpful for me in understanding
her situation.
-GEMRYILER

Hi All,

I am Ru, and new to the list.

I have just been dx'd last Tuesday with RA, though the bloodwork is not yet back. Is that possible? I have osteo in my right knee, and the joint problems I have now originated in my legs with the first set of painful days, The second time it happened it was ankles, knees, my back, but really bad in my shoulders and neck and elbows. Now this last time--the one that initiated the trip to the doc, was all the above and then my hand/wrists and fingers---so bad I could not write or type, both of which I need to do for work. I couldn't turn my head to drive, it was too stiff and painful.

At my docs he gave me celebrex and took blood, and said he would call when the results were back in, but that is sounded like I had RA. Sounded like? Is this blood test definitive?

Ok, far the really weird part, I know I should know all this, I am an RN, LOL. But I have spent all my time either in telemetry or OB, and the last year and a half in public health, doing OB. So I am researching this online.

Any thoughts or ideas that maybe this isn't RA and could be something else?

Thanks,

Ru

---
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Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.505 / Virus Database: 302 - Release Date: 7/30/2003

Hi all, my name is Donna and I have mixed xonnective tissue disease,
for those of you who are not familiar with this, to break it down I
have ra, lupus, and fibromyalgia.
Anyway, there are plenty of ppl who are worse off than me so I am not
complaining. Actually, my main reason for coming into this group is
for some issues that I am hoping someone may be able to help me with.
Okay, here it goes, I have 2 dogs that I love more than anything and
our daily walks are the highlight of their days, as well as mine. I
have never been much into exercise, but when I take my girls out for
a walk, somehow it is not exercise then, do ya'll know what I mean.
Well, here lately, I have been getting severe shin splints and my hip
hurts so bad that I am barely able to take them around the block,
before we walked 2-3 mi. a day. And I know the hip pain at least, is
because I am having a flare up and it is one of the rougher ones that
I have, but I have never heard of shin splints being a problem with
what I have. So, does anyone else suffer from them and if so have you
found any way to relieve the pain and discomfort. Really anything
that anyone can tell me would be so greatly appreciated.
Thank you all so much and I hope that maybe I can return the favor
and be of help to someone else one day.
Donna

There has been some awsome posts on these subjects. I thought I might
add a little to it with your indulgence.
I was diagnosed in April of this year and finally get to see a Rheumy
the 27th of this month. My Doctor has me on a list of meds and when I
take the right amount of steroids I seem to do OK.
I own my own business, I am in the Alaska Army National Guard and I
am a EMT in my home town. At this time I am 150 miles north of the
Arctic Circle working as an EMT at a remote site. I am comunicating
via satelite.
I am 55 years old with an 11 year old daughter at home. She has been
such a blessing since this started. She helped me put on my shirt
when I couldn't by myself.
Sometimes I ask all the rhetorical questions but it does no good.
There are no answers so I trudge on.
I have learned that I have to slow down and take it easier. If I'm
having a bad day I ask for a little extra help. I am more careful
about how I walk as I have fallen twice now out of the blue. Other
than being embarassed no injuries.
I asked my ambulance service if they wanted me to take a leave of
absense and they said no. My experience and being a crew chief was
more of a loss to them than my asking for extra help when needed.
The weekend before I came up here I spent out in the field with my
guard unit. I did as much as I could and rested when needed. The Army
will probably medically retire me but I can still serve until they do
as best I can.
My little girl loves for me to hold her in my arms and on a good day
I will sit her on the cabinet and she will slide off into my arms and
she wraps her little arms around my neck and gives me the biggest
hug. On days I can't she remains on the cabinet and we make do. She
just can't take the running leap into my arms like she did before
last March.
RA has changed my life but I am learning how to deal with it. Even
the depression that sometimes accompanies the desease. There are
pretty good days and not so pretty good. Some days hurt more than
others so I take an extra pain med.
I can't imagine my wife and daughters, I have 4, trying to make it
without me and I sure don't want to miss seeing what they do with
their lives. I still go to my grandson's soccer games when I can.
Life is worth the pain and stiffness and effort. Hang in there
everyone. New meds are on the way and in ten years it will be a hole
new ballgame.
God Bless and thanks for reading my rambling thoughts. If you made it
through HA HA!
Jay

I was diagnosed with RA and Fibromyalgia in Nov 2001, since that time
I have made some amazing discoveries about myself, my family and my
limits. There are days when getting up off the bed is a challenge
and there are days when keeping my eyes open is tough, but there are
many more days where its really pretty manageable. I am very
fortunate compared to many of the posts I have seen, I have three
awesome kids and two beautiful grandsons to keep me going. My doc and
I agreed that I would try to manage my symptoms with minimal drugs,
that did not mean torturing myself with pain and inflamation so I am
monitored quite closely (every month blood work & physical checkup)
Very fortunate my insurance covers it. I worked with my boss and
took it a bit easy for a few weeks while my meds were adjusted,
started with NSAIDs and have since moved to Celebrex so far so good.
The PA at my Docs office told me to try modifying my diet, it started
with a pretty bland diet with soy supplements for 2 weeks then
introducing items from various food groups one at a time as tolerated
no more than one item in a week. So now I drink a soy shake for
breakfast with some fruit, have yogurt, a light protein (chicken or
fish) and some steamed veggies for lunch and similar items for
dinner. Sounds a bit plain but I feel so much better, I was in a
wheelchair for a few weeks and it scared me so much that sticking to
the diet is easy now. I stay away from highly processed foods, red
meat, wheat products and chocolate. The return is far greater than
the loss. I take a Yoga class with some pilates included.. at first
I could not make it past ten minutes, now I can do a twenty minute
session nearly every day (the improvement is awesome). I do feel a
bit sorry from time to time about the things I can no longer do,
Volunteer with the local fire department, search and rescue, but the
trade off is a good life, I can participate with most of my grandsons
activities they are 3 & 4, and I have a good life.
I get a bit scared when I see the postings of how bad the flare ups
get, I had one real bad one last fall, since then pretty minor
limited to 7 to 12 days. I thank god daily for my life and I pray
that those who are suffering find relief. Thanks for letting me
participate with those who know how it feels...Anneta

Does anyone take embrel 3 times a week? They sent me a questionaire
and asked if I take shots once,twice or three times a week? I didn't
know you could take embrel more than twice a week?
Sharon

Does anybody have any suggestions to fight the fatigue that comes
with RA. I feel exhausted all the time.
Thanks,
Sharon

Are alot of people out there with RA able to work full time? I myself
am having problems with it?

Hi everyone,
Nothing posted for a couple days so I take it most us are doing
fairly well. That is good news to me.
I know I can't complain as I have had much worse days than I'm having
now and hope and pray it keeps up for us all.
Best wishes to all,
Jay

I have a weird question for you all... I've always joked that I'm
kind of a clutz (I was a gymnast for 15 years... we're a mess outside
of the gym) but since all this RA stuff started, I've been dropping
stuff right and left and I've fallen down 2 flights of stairs
(could've been scary) and just random falls. Has anyone else
experienced this? Thanks! Sarah

Hi everyone,
Before I started Remicade, I couldn't go below 10 mg/day of Pred without hurting and being swollen. After 3 years on Remicade, I'm now down to 4 mg/day, with plans to be down to 3 mg or 2 mg/day by next month. I could have been off the Pred by now but my rheumy advises no dosage changes during periods of high stress or travel. In the past 12 months, 3 of my uncles died and I lost people I knew in 9/11.
As for Remicade dosage, I started at 200 mg every 8 weeks, then went up to 300 mg every 8 weeks when the benefits started to wear out at 6 weeks.

Take care,
Stephanie in VA

Hi, my name is Rebecca and I have Fibromyalgia and osteoarthritis, and my husband has a advanced case of RA. His grandfather had AS, I can't think of the full name, but it's related to RA. I'm 31 and he's 33. It seems like there's a competition between the 2 of us related to who hurts the worse. I don't really care who the winner is, I'm just mad that our pain is under treated. Anyway, I think that it's sad that friends and family members disappear when we gets sick. They seem to think that we should be able to bounce back and do all the "normal" stuff that we used to be able to do before the pain got too bad. It's hard on us to know that "normal" will never be in our lives anymore. I have a 3 year old son and I think that he's a little crazy, but that's a good thing cause it shows that he's definitely our kid. I just worry that with my developing arthritis when I was 12 and my husband when he was 28, that my son will have problems before he's fully grown up. Maybe
by that time, there will be a way to control the problems without bottles and bottles of medication. I am going to school and want to be a lawyer when I grow up. LOL. My husband is a machinist and will have to go back to school to get trained in something that's not so labor intensive. Having fibro has caused alot of problems for me and I don't work now cause I can't keep a job. Fibro just takes your life over and then you have to learn to live a different life. At least it won't kill you. My husband is on methotrexate and sulfazine. I can't see that it's helping. I know that his pain isn't as bad when he takes his meds, I just wish that he could take one of the newer meds, but his rheumy won't prescribe it cause when he was on Arava, he developed pneumonia twice and that ruined it for him. I think that the rheumy is a jerk, but my husband won't fight him. With him on methotrexate, it also compromises his immune system, but I guess I don't know what I'm talking
about because I don't have a degree behind my name.
Well, that's enough from me now. Glad to meet yall and hope yall have a pain free day.

Rebecca [INLINE]

Hi Lorraine,
When were you diagnosed? I was diagnosed in November 1999. A week after that, I started methotrexate. 4 months later, I started Enbrel and 2 months after that I started Remicade (ending Enbrel, but continuing my metho). My rheumy thinks one of the reasons I've had such a great response to Remicade is because I started aggressive treatment early.

Take care,
Stephanie in VA

Hello Everyone,
I am here to promote my Arthritis Group that's called "Gouty
Arthritis~Arthritis Group". Please use cut and paste with the link I
give you. This is our homepage, but you can join by using the link on
the page or in the guestbook. Feel free to leave your comments.
Truely Yours,
Robin (owner)
Link: http://www.geocities.com/robinj41/goutyarthritisgroup.html

Hi! Is there anyone from the berkshire Ma.. Like Chat Thank you
bittan bittan62@...

Has anyone heard or tried a new drug called Humeria?

Hi Jan,
Everything is set for my trip to Detroit -- I just bought my plane tickets yesterday. I'll be arriving on Tuesday September 2 and returning Friday September 5. I'm staying at the Marriott at Detroit Airport (which is where my conference is).

Where did your son & his family live in VA?
I love dogs too. I rent now so I can't have a dog. So I volunteer with the local animal shelter so I can live vicariously by finding good homes for dogs & cats.

Take care,

Stephanie in VA

Sorry everyone.
Put out my last message with the wrong subject heading.
Cheers,
Paulette

Hello all, because of the circulation problems with my legs and
irregular arterial doppler, my GP wants to schedule me for an
arteriogram. Has anyone had this, if so what can I expect. Thanks :)
Jennifer

Evening, I have been off line for a while due to my resent troubles
with pain. It seems that for over 3 weeks I haven't been able to move
my head and neck. The pain in my shoulders,neck, and back have made
it impossible for me to even sit at the computer to read the post. I
called my Rheumy's office and they told me to see my Family Dr. (this
was 2 weeks ago).
I went to family Dr. and he said it's just a pulled muscle. I have
been going to a physical therapist since then. Every night after
therapy I'm in worse shape. I started having pain in other areas of
my body. I had nothing to take for relief so I could at least eat.
(When I am in such pain I can't eat, I get sick, literally!) I am now
at 98 pounds.
I saw my Rheumy today and he said I have fibromyalsia(sp?). Is this
something that any of you have been told you have, on top of the RA?
With everything that I have I am to the point of depression of no
return. My husband doesn't know about this recent diagnosis. I don't
feel like hearing "now what", or "what next". He was supportive for a
while but with feeling worse with no reason for it, he isn't very
understaning about all this pain.
Right now I just need someone to help me deal with all of this and
someone who will just listen. I'm sorry this is so long but I really
don't know what else to do. I have to go lay down. Just typing this
has my neck and shoulders hurting and it's causing a really bad
headache.
Brenda

Hello All,
Well I just returned from Seattle and was very pleased with the
Rheumatologist that I saw there. He wants me to start on Enbrel. Only
problem is that my insurance company is balking that it is an
experimental drug. I had to have the Dr. write a letter of medical
necessity and they said it could be up to 3 weeks before they let me
know. My pharmacist says that is will be approx $1500 per month if I
have to self pay. I need to do something. Because I have tried all of
the other drugs in the past and have already suffered more joint
damage and bone loss than I even realized, he wants me to go directly
to the Enbrel. Unfortunately I contracted Parvovirus(yes there is a
human version of this) this Spring and that is what is causing my
recent awful flare. Those of you with children or involved with
children, be aware of Fifth's Disease. It's a childhood disease that
when kids get it is fairly benign. However if adults, particularly
women get it it can be quite disabling. Fatigue, severe joint pain,
low grade fever and flushing of cheeks. I guess if you already have
RA it's rather like adding insult to injury. At least that explains
why I have felt the worst I have in 15 years.
Have any of you had problems getting insurance companies to cover the
drugs? Has anyone ever gone to Canada to get the drugs? I heard on
NPR that this is becoming a popular approach to out of reach
pharmacutical costs. Wish me luck. Thanks for listenning. Janet

Hi Patsy, I agree with everyone else who has answered your post ...
I have had RA for 16 years and this disease can affect people
differently, but for most it is progressive and destructive ... I go
through phases where I feel much better and then wonder what kind of
truck hit me ... I have never been fortunate to have the disease go
into remission, but I know it can happen especially with the newer
drugs available now ... get all the info you can so you can make the
most informative decisons about your care and see more than one
doctor, if you feel it is necessary ... I wish you the very best ...
be well and God bless ... hugs ... Marianne

Hi Jan,

This is Stephanie in VA. Humira is an injectable biologic that can be taken for both RA and MS. My aunt takes it b/c she has both illnesses and it's worked well so far.

By the way, where in MI do you live? I might be in Detroit for a conference September 3-5. If you're nearby maybe we could get together. Email me personally if you like.
Take care,

Stephanie

Hi Patsy

I would worry about the ongoing destruction to the joints if you are not taking some type of medication. Pain killers are wonderful, but they do not stop the progression of the dis-ease as far as I know or have read.

Becky in AZ

Hi Patsy,

This happened for me when my symptoms first appeared. My fingers were so swollen that if I spread them apart they almost touched! It affected my left hand & I'm left handed so it was awful (my arthritis only affects my left side). I suggest you call the rheumy right away! Even though you don't like to take meds, flares rarely go away by themselves without medical interference.

Take care,

Stephanie in VA

Hi Patsy,

This is Stephanie in VA. Yes, the test results could change. I was diagnosed 3 years ago with Reactive arthritis. I have never tested positive for the RF but my rheumy said that can always change.

As far as meds go, the pain and swelling (plus fatigue) of my arthritis was too much NOT to take meds (for me, at least). You're a strong person to make the decision not to take meds.

Take care,

Stephanie

From what I have read, the finger joints closest to the fingernails
are not usually affected by RA. Does anyone have problems with these
particular joints? I was just wondering how true this is. Thanks so
much.
Pam P.

Hi everyone. I don't really post much but I do read what everyone has to say. I have posted before stating that I was blessed with not only RA but also with MS. I was doing very well on methotrexate, azulfadine, plaquinel, and relafen until they put me on a medication for the MS. It's an interferon injection called Rebif. It has interferred with the RA meds and I am now back where I started from. Pain so bad I could hardly move. I couldn't get up and down very well. I would say I have a severe case of RA. My rhematologist gave me prednisone and it seems to be helping. This is the 3rd time in 9 months that I have had to go on prednisone. My question is does anyone know how long you can stay on prednisone and what bad side effects does it have? Also, does anyone else here have RA and MS. A woman wrote and told me before that her husband had both and was going to the neuro but I haven't heard from her. Thanks for listening.
Jan in MI

HI PATSY
WELL I WAS DX WITH RA WHEN I WAS ABOUT 25 YRS OLD. WAS PUT ON ANTI-INFLAMITORY TABLETS. AND PAINKILLERS. THEY SEEEMED TO HELP MOST OF THE TIME APART FROM GETTING FLARE UPS NOW AND THEN.
THEN I THINK I MUST OF WENT INTO REMISSION FOR A COUPLE OF YEARS COS I DIDNT SEEM TO HAVE TO MUCH BOTHER. THEN WHEN I WAS ABOUT 35 YRS OLD IT CAME BACK WITH A VENGENCE. I WAS IN AND OUT OF HOSPITAL WITH REALLY BAD FLARE UPS. TRIED VARIOUS MEDS BUT NOTHING SEEMED TO WORK FOR ME. WHEN I WAS 40 YRS OLD I HAD A HYSTERECTOMY AND MY RA JUST WENT ON THE RAMPAGE AFTER THAT. I HAVE BEEN ON METHETREXATE STEROIDS AND LOADS OF OTHER MEDS . BUT NOTHING WORKED .I HAD TO GIVE UP MY JOB AS AN AUXILARY NURSE . 6 YRS AGO I HAD A NEW WRIST JOINT PUT IN AND 1 YEAR AFTER THAT I HAD MY OTHER WRIST FUSED. I ALSO HAD TO USE A WHEELCHAIR FOR OUT DOORS AND WALKING STICK FOR INDOORS (STILL DO).COS OF JOINT DAMAGE TO KNEES AND ANKLES.
THIS YEAR MY WRIST JOINT THAT WAS REPALCED HAD TO COME OUT AS ALL MY BONES HAD CRUMBLED AWAY AND I HAD TO HAVE A WRIST RECONSTRUCTION DONE AND FUSION.
I AM GOING INTO HOSPITAL IN SEPTEMBER FOR MY LEFT KNEE REPACEMENT THEN A BIT LATER ON I WILL HAVE MY RIGHT KNEE DONE.
THEY DONT REALLY KNOW WOT TO DO ABOUT MY ANKLES THE ONLY THING THE RHUEMY SAYS WOULD BE FOR THEM TO BE FUSED.
I AM CURRENTLY TAKING ARAVA.NAPROXEN.CO-DYDROMAL. PAROXITINE TO CALM THE IMMUNE SYSTEM . ALSO STEROIDS BUT ONLY WHEN I GET REALLY BAD FLARE UPS OH AND I ALSO TAKE TAMOXIFEN AS I HAD BREAST CANCER 4 YEARS AGO .
I THINK I HAVE JUST LEARNED OVER THE YRS TO LIVE WITH THE RA AND HAVE JUST HAD TO ADAPT TO THINGS. I HAVE A BRILLIANT HUSBAND AND A GREAT FAMILY TO HELP ME.
I BET YOU WISHED YOU HADNT ASKED ME NOW HA HA
LET ME KNOW HOW THINGS ARE WITH YOU AND HOW LONG YOU HAVE HAD RA
LOVE JOYCE
XXXXXXXXXX

Hi, I just read your post and wanted to respond. I am 28, like
Diana, and have been married for 8 years. I am relatively newly
diagnosed but from what my doctor has told me, children are
definitely a possibility and with all the new drug combinations out
there, living a relatively normal life is completely possible. Of
course, the spouse of someone diagnosed with RA needs to be
compassionate and willing to sacrifice time and energy to help when
there are flare ups, but that could be said for many things. I'm
also concerned that your fiance thinks that her lifespan might be
shorter. RA is not a fatal disease... untreated it can be crippling
but I hope she has a doctor she can talk to if she is scared about
the possible effects. If you are in love with this girl then RA
should definitely not stand in your way... good luck. Sarah

Overnight my hand went from working to not working..It's so
painful..three fingers are swollen like sausages and feel very stiff
that I can't straighten them...i'm typing with my thumb on the bad
hand..It's almost unuseable except for the thumb..is this what is
called a flareup and if so how long does it take for my hand to get
better... at least enough to use it...anyone have this happen..Also,
my elbows hurt now as they turn, almost like someone is pulling them
out of their sockets. I don't like this...I've never been this
bad..It's been extremely hot and humid this past week, could it be
that...
thank you...
Patsy

Hi Sandy,
Sorry to hear about your past experiences with Methotrexate. When I
first started Methotrexate I too had side effects but they
diminished after a few weeks of taking the drug.
Remicade can be taken alone. I wish you well if that's what you
decide to take.
I'm glad you got some relief with NSAID's. My feeling is that you
feel better with the Aleve, great. Keep taking it. And I hope you
fine a disease modifying drug that works for you. Please let us know
how you are doing.
-Diana

Hello Sagar,
My name is Diana and I am a 28 year old, happily married, woamn with
moderate - severe RA. Rheumatoid arthtitis is a disease the affects
many aspects of ones life. I have a very difficult time with some
household tasks. I cannot change the sheets on the bed or carry a
laundry basket. I will never be able to put a heavy turkey in the
oven. My husband is leaving in 2 weeks as he is in the military and
has been activated for an assignment far away. Together, we are
learning ways for me to do things without his help. I won't say it's
easy, but it is possible. I will certainly have limitations but I
will manage.
My husband and I want to someday have a child. We have come to terms
with the fact that I may not be able to conceive a child of our own.
But, if we can't, there are alternatives. It is unclear as to
whether of not I will be able to get pregnant due to my disease and
the medication that I am on. But if I can't, we can adopt. Depending
on your girlfriend's disease, you may or may not be able to have
children. My husband is willing to take care of a baby if I can't
hold the baby, change him, etc... So if we can have kids, my husband
is willing to sacrifice his career until the baby is old enough.
This may be soemthing for you to think about.
You have to make your decision but know that living with arthritis
is not impossible.
I wish you well,
Diana

I had that RF test taken jan. of 01..since then I've gotten so much
worse..I'm not taking meds yet as I hate taking medicine..but totally
understand how it helps everyone..I went to my rheumy a month back
and he said I have RA but he wasn't going to pressure me to take
pills..He said I will be alright and won't get too bad yet.as I'm in
the very early stages of it and can manage it most of the time..My
two knees are swollen but for some odd reason they don't have hardly
any pain.me ...Mostly what bothers me is my feet and hands, chronic
fatigue, stiffness all day long and muscle weakness...I also have low
thyroid so that could be cause some of my probs. too.
I heard that the antibiotic treatment can work in RA..if that is the
case when I get where I can't manage, I'll try that medicine.
My question is about the test again...because it was three years ago
since i've had it done... If I took it now could the result
different..
thank you all again for your help and I wish you all strength in
dealing with your pain.
patsy

Well, this is an update, my rheumy has diagnosed me with an
inflammatory arthritis, but we cannot pinpoint which one as of yet,
since I have a negative RF, He still thinks that it may be RA but
since all inflammatory arthritis is treated the same I guess it does
not matter, but for my own peace of mind , I would like to put a name
to it. From everything I have read, RA is the only thing that really
fits. Anyway, I started treatment with Methotraxate last week. Today
will be my second dose. So far the only side affect that I have
noticed is a sore mouth. I am also taking 30mg of Prednisone which
seems to help. The problem is that everytime the barometric pressure
changes within 200 miles of me, i get pain and swelling even worse.
My hands are really affected, and since my job entails using my hands,
(i am an ultrasound tech)it is a real problem. Any thoughts? Will
this improve? Thanks.

Hi Jill,
Sorry it took awhile to get back to you. I ran a 2 week summer camp that introduced kids to volunteering. It just ended on Saturday.
I was never a runner even before I got arthritis but I've always loved to walk. The Arthritis Foundation has an awesome training program! It is 16 weeks and you get a coach that customizes your training based on experience, limitations, and such. Your fundraising goal is based on the site you choose. Personally, I figured I would go places I hadn't been before and get a "vacation" out of it.

My first marathon was December 9, 2001 in Honolulu, Hawaii. My fundraising goal was $4200, which I made. Your fundraising covers: training, roundtrip airfare, 4 nights in a resort hotel, race entry, a pasta party the night before the race, breakfast the morning of, and a party after the race. The rest of the money goes towards research and programs for people with arthritis. Despite my training, I was unable to complete the Honolulu race for several reasons -- it was 98 degrees, the roads were re-opened, and they took away the mile markers & fluid stations after 5.5 hours. When I was picked by a marathon vehicle, I was told I was at mile 23.5. It was disappointing but I promised my rheumy I would stop when my body told me to.

On November 17, 2002 I walked the half-marathon in Hamilton, Bermuda. (I switched to the half due to a pinched nerve). The race in Bermuda was only the 4th year they had done it but it was great. It was all walkers and everyone did it for a charity. The fundraising goal was the same as Hawaii.

I am unable to do a marathon this year but am looking into doing one in 2004. Oh, for Hawaii I went without knowing anyone. For Bermuda a co-worker did the race with me so I got a $250 credit for being an alum and a $250 credit for recruiting a friend.

E-mail me directly if you have more questions about the races.

Stephanie in VA

HI
I HAVE HAD RA FOR 30 YRS NOW
I HAVE SUFFERED CHEST PAIN FOR ABOUT THE LAST 5 YRS OR SO
I WAS TOLD BY MY DOC THAT IT IS CALLED COSTOCHONDRITIS. CAUSED BY THE RA.
LOVE JOYCE
XXXXXXXXXX

Well, here I am again with more questions. I just love this list and
appreciate all the help I have gotten so far here. I went into a
terrible flare a couple of weeks ago (once again, after being out in
very hot direct sun, (hmmm...., I have to think it's not a
coincidence.) Anyway, I was having extreme, long lasting morning pain
and stiffness, but worse, I was getting the low grade fevers and
feeling so terrible and ill. So I started back on the Prednisone,
which is a lifesaver, although I hate the stuff, and I wss actually
able to make it through a week of Vacation Bible School as a helper.
(Took it day to day, and made it each day. Yea!) Within the last
couple of days, I seem to notice a puffiness under my armpit, which
looks to me to be swollen lymph glands. Has anyone had this in
association with their RA? I'm not sure how long it's been there--I
just noticed it. Again, thanks so much for all the previous help.
Pam

I'm going to be starting Remicade soon, I just got off of Pred... can
you be on Remicade alone or do you have to take metho w/it? I ask
because I was on metho for a good month and it knocked me out four
days out of the week. My Rheumy got me off of it right away. I'm
miserable right now only being on Oxy & Vicodin.... I tried Aleve
yesterday and was stunned at how well it worked!
God Bless!
Sandy

I joined the list a few weeks ago and want to thank everyone for the
wonderful posts. I've had RA for about 16 years and did well with gold
shots through the years. When Solganal was discontinued, I went on
Remicade. At first, it seemed to work, but now I'm having problems. I don't
know if it's the Remicade or having to adjust to a new climate. (I moved
from Orlando to the Miss. Gulf Coast a few months ago.) Reading what you
all write makes me feel not so alone with this disease. I rarely talk about
my RA to anyone but my rheumatolgist, so it's nice to feel part of a group
that shares.
All my best to each of you,
Jan Dean

My mom (Sandy) has tried to post twice now, after a long leave of
absence, why aren't her posts showing up?? She did get the daily
digest yesterday, so her updated email addy was accepted.... I was
surprised to see only four posts. Is this group not very active on a
daily basis? Don't get me wrong, I'm not downing the group, I'm just
trying to understand for my mom. I'm very much 'into' this RA for
her, surfing for RA info has become my new favorite past time.... mom
needs as much support as possible!!
Speaking of which, Mr. Van Tuyl, I don't know if this is 'your'
group, but I must say.... your posts/replies are sooooo informative,
uplifting and encouraging.... you are a tremendous asset to this
group!! You would be to ANY group like this, where people need info,
advice, a *listening* ear, support & encouragement.... God gave you a
wonderful gift and God bless you for using it! You sound like the
kind of man who would let someone cry on your shoulder..... I'm
amazed at how at ease I feel reading your posts, and I don't have
RA!! *smile* Keep up the AWESOME work!!
(((((*BIGHUGS*to*all*)))))
april (Sandy's daughter)
:):)

Hi everyone,
I'm so happy to have found this place to chat with others about this
disease. People who don't have it (or know someone who has it)
think they know how we feel. I really doubt it!! I've been given
such a difficult time by management in the workplace, that now I am
off on sick leave since Feb. Have been working on
depression/anxiety and trying to deal with ongoing pain.
Firstly, I'm 45 and married 18 years. Both of us have RA. Husband
47, was diagnosed in 1990 and my diagnosis came in Dec 2000 after
months of pain. He takes methotrexate and folic acid. I take
sulfasalazine and celebrex. We see the same Rheumatologist. Hubby
can't work and is working on depression. He is waiting to get a
disability pension.
It's frustrating to be young and not able to do things like you
could before. It's lonely too, I think friends get tired of us not
keeping up with them and leave us out of plans. I hope to find
people here who have similar situations who can share how they
handle this disease. I hope to make some new friends who really do
know how I feel...somedays are good and others are not. I'd like to
be able to help others too.
We are in Toronto, Canada. With a place to chat, there is not much
distance between us!
Elaine

I have been lurking around here for a few months. Last May I was
diagnosed with RA when my son was 8 weeks old. Since then I have been
on methotrexate, prednisone (down to 3 mg/day), and now Vioxx (which
doesn't do a thing). The last few months the drugs don't seem to be
working as well as in the beginning and my Dr. is talking about trying
Enbrel.
I have read some about this drug and the possible side effects scare
me quite a bit. I am looking for comments from people who have taken
it and what their experiences have been.
Lee

Hi everyone! I am a new member, and I can not wait to learn and
share with everyone on this site! I have been on Remicade with
Methotrex. for over a year now, and have been very happy with the
treatment. (The happiest I have been in the 15 years since first
diagnosis)I just had an I.V. yesterday, and I am experiencing
horrible backpain, horrible burning with urination, and headaches.
These symptoms make the 4th "bladder infection" in three months. I am
begining to suspect that this could be related to the treatment. My
rhemy is on vacation, as well as my general doctor. If anyone has
experienced these or similar symptoms on Remicade or other
medications, please provide information. Thank you so much... eager
to stop this pain!

HI All,
I am Sagar from India. I am planning to RA affected Gal. Bu tI do not
know whether my decission is correct or not. Cause I have lots of
dreams about children and marital life. The gal whom i like says it
is very difficult for RA patients to lead normal marital life. She
also says that the decease can attack the children. More Over she
says there is no cure for the decease and she will die after some
time.
Can any body explain me about the marital life with an RA patient??
Plz help me.

Hi Gang, I joined ages ago, my how time flies! Anyway, do any of you
take Remicaid (sp)? Can you tell me how it works? Any
improvements? How about the RA pain? I'm on oxy & vicodin and I
still hurt SOOOOOO bad! I just got off of the steroids so I'm
waiting (in pain so bad it literally makes me sick) to get on the
Remicaid (sp). I pray it works!!!
How are you all doing? Hope all is well, considering.
Sandy

I had a blood test done For RF ..Under my REsult line was <20 and
under the REference line was <20. I'm confused because my doctor
told me it was normal.. Shouldn't the result line just have
said "negative" instead of giving a number.
thanks for any input..
patsy

It's been a few days since I posted. I've been having a serious flare-
up starting Jul 5th. Finally hit it with 60 mg of Prednisone then 50
mg yesterday and today.
Unfortunately today was my Methotrxate day and starting to get the
Metho aches. Nothing compared to the flare though.
My MD switched me from Hydrocodone to Oxycodone due to the amount of
Actemetiphin in the Hydocodone. I was taking about double the amount
the liver can stand.
Hope everyone is having a nice weekend.
Best wishes and God Bless,
Jay

Hello everyone,
Has anyone had experience with Raynaud's syndrome. My GP thinks that
this is what is going on with my legs but I'm not sure. I see the
Rheumatologist mid August so I guess I'll keep my feet up for the
next month (they turn a beautiful shade of purple I don't.) Take
care and have a great day!
Jennifer :)

I had recently joined after being told I had Rheumatoid arthritis.
The good news is, I don't; the bad news is, I have Fibromyalgia.
Thank you all for your support, the information I took from the board
will help me in my indever to repair damage to my body.
Again, Thank you to all and may God Bless you and keep you safe..
Kerri Baker
Alexandria, VA

Hi all, I just joined this group and I wanted to introduce myself. My name is
Jenn. i was diagnosed in July 2001. Currently I am taking Enrel and see
some improvement. In reading the recent posts, I would like to share of my
experiences.
My rheumatoid begin in 1997 but was miss diagnosed becaue only one joint,
my right hip was effected so severely drs just thought it was a strange
occurance from a childhood fever. For over 4 years, I went to many different
doctors and they kept saying, it is not rheumatoid. Then in 2000 my wrists
and hands began to swell and finally a 3rd RA dr. looked at all the results and
agreed it was in fact RA, Isn't great to put your faith in doctors who seem to
be
missing the boat. Oh well, I finally have a dr I respect and listen to since I
am
finally seeing results (little ones but they are there).
So my question for the group is about nutrition. I recently lost 65 pounds on
Weight watchers. Since on the new medications, I have stopped weigh loss
completely. I am currenlty on 4 medications (a new cocktail). Enbrel, bextra,
arava and plaquinal (may have spelled it wrong - sorry :)). Since on the
combo, I am very tired nd hungry. In recent weeks I meet with a alternative
medicine doctor and nurse practioned to look into other options to try since I
am having problems with the drugs. Their sugestion was the Zone diet - no
dairy, no carbs and grains (or low) with a goal of "wheat free." My original
feeling was BS. But now I wonder. I have tried balanced meals for the past 3
days and I seem to have a little bit more energy but now I am dizzy. Has
anyone on the group has success with the balanced diet (protein to carbs to
fats)?
Sorry for the novel. Next time hopefully I will be shorter in my message.
Thanks for letting me ramble.
JennH

Rhonda,

Are you taking Folic Acid with the methotrexate, it will help with the side effects.

Becky

Arizona

Hi ... I just joined so all of this is new to me, but I just read
the latest digest and I found some of what I read interesting and a
lot related to me such as running low grade fevers, I do that on and
off and my doc said it is normal ... thanks for the info on sun and
plaquenil ... no one ever told me that, you would think the info
from the pharmacy would state it and I think fatigue is my worst
enemy ... anyone have any ideas on how to beat it or just lessen
it ... I am tired of being tired ... I have had RA for 16 years ...
take care and be well everyone ... Marianne

Hi ... I just joined so all of this is new to me, but I just read the latest digest and I found some of what I read interesting and a lot related to me such as running low grade fevers, I do that on and off and my doc said it is normal ... thanks for the info on sun and plaquenil ... no one ever told me that, you would think the info from the pharmacy would state it and I think fatigue is my worst enemy ... anyone have any ideas on how to beat it or just lessen it ... I am tired of being tired Smiley emoticon ... I have had RA for 16 years ... take care and be well everyone ... Marianne

Trust in the Lord with all your heart and lean not on your own understanding. In all ways acknowledge Him and He will direct your paths. Proverbs 3:5-6

Please visit my web site ~*~Marianne's Space~*~ at http://www.geocities.com/marianne549/pages/marianne.html

I am wondering if anyone else out there has been experiencing any
chest wall pain/ache along with their RA? is this unusual?

My rheumatologist strongly suspects RA and after everything I have
read about it, I would be shocked if he diagnosis' something else. Do
many experience the dry eyes and mouth and marked fatigue? along with
the symmetrical pain and inflammation in numerous areas. One other
question i have about it is i have pain and stiffness most of the day
not just in the morning and therefore i cannot evaluate the morning
stiffness criteria. Is this usual.
My dr. currently has me on 30mg of Prednisone, (dont like it much)
and i have been experiencing leg cramps and night sweats. I will say
that the pain and swelling has improved but the fatigue is still a
problem. Any suggestions! Thanks for your help

I'm wondering if any of you have had relief from saunas (dry) and if
so, is there a way to get your health insurance to help pay for the
sauna?
Thank you.
Rhonda
Prov. 3:5

I'm 51 and finally just got to the point where I was comfortable in
my life - got my mid-life crisis out of the way, renewed my marriage,
re-committed my life to Christ, started a new wonderful job, have a
wonderful 12 year old daughter. I'm not sure when this RA thing
actually started, but my major symptoms started around November of
2002. I suddenly had a horrendous "kink" in my neck. It was so bad
I was nearly crazy with the pain. I just kept thinking it was how I
was sitting at work or perhaps a stress knot or something. I saw an
acupuncturist who helped relieve the pain for about 5 minutes. Then
saw a chiropractor 3 times. All in all, I was in pain for close to a
month. Then, I fell & broke my ankle (perhaps the RA was why??) and
while I was hobbling around with the big boot on my foot, I noticed
my hands & fingers were swelling. I figured it was the winter weight
add-on and that all I needed was to lose some weight. I used to wear
lots of rings and one by one I had to take them off as my fingers
kept swelling.
I went in to have my annual pap exam and by that time had some pea-
sized nodules in my hands & fingers. My OB/GYN guy referred me to a
rheumatologist. The day before I saw him, I couldn't stand it
anymore and had to have my wedding rings cut off by the jeweler.
That was a tough one. Upon first exam, the dr. said he was 98% sure
it was RA. My blood tests came back negative so he explained about
sero-negative. He put me on plaquenil (in April) I have taken it
religiously along with naproxen. I felt like it was getting worse,
but decided it was in my head. My hands, wrists, shoulders, elbows,
knees, ankles & toes are killing me. So I went in just this week and
sure enough, he confirmed it is getting worse. Took some more blood
(I've not heard anything on that yet) and prescribed Methotrexate &
folic acid as well as Vitamin B6 after a discussion about carpal
tunnel. He said when the RA gets under control, the carpal tunnel
will also improve.
I have zero energy and could nap at the drop of a hat (or my head on
my desk) and today I am experiencing the nausea he told me to watch
for with the Methotrexate and I feel like crawling in a hole. Also,
the pain in my neck (and I don't mean my husband) is back and I'm
walking around like a zombie, wishing I could just go home sick, but
don't want to come across like a wimp.
I am not liking this adjustment period here at all, but will do a
Proverbs 3:5 and trust that God will get me through this as He has
done every other crisis of my life.
It's nice to find others who can understand.
I'll pray for all of you as well as me.
Rhonda

Hello all,
I have a quick question, has anyone had problems with the circulation
in their legs? My feet turn purple when I sit for more than 3-4
minutes. Any ideas would be helpful.
Jennifer

Hi,
I'm Jennifer and new to the group. Quick question - Does anyone have
a problem with the circulation in their legs? When I sit or stand in
one position for more than a minute or two my feet turn purple and go
to sleep and sometimes numb! Any info would be a great help.
Jennifer

My Doc told me I had a Baker's Cyst on the back of my knee. He didn't
offer any remedy for it or expound on it. Is any one familiar with
this phenomena?
Tonight I was standing on one foot taking off my sock from the other
foot and my knee just folded and down I went. It was the knee that
gives me alot of pain and problems. Is this something else to look
forward to?
Jay

Hello all,
I have been lurking here for a bit but this caught my attention. I only have
my hands and wrists affected at the moment but I have noticed that on hot,
sunny days my hands are worse. As a natural red-head I avoid the sun as much
as possible to limit the freckles and thought that this was coincidence
until I read the posts here about it. Is there anywhere with more
information about this?
I also have a couple of other questions; I have noticed since I started
taking Plaquenil that I am extremely fatiqued and sleeping a lot more (I
have been on it a month now), I have been having problems with excema, and
my gums are cintinuallt bleeding. None of this was happening until I started
the Plaquenil. Could there be any connection?? My other question is, well to
put it bluntly a bit embarassing, but does anyone else have problems with
lowered sex-drive? Since I started with this whole RA thing I seem to be
less interested in that much to my husband's and my disappointment - anyone
have any hints??
Thanks in advance
Angela

Hi,
Last year I started having joint pain, the Dr. said that my RA factor
was just mildly elevated. This year she said it is higher but I
shouldn't worry--yet.
My question is that for about a week or so it will be intense,
although the fatigue is worse than the joint pain (although that
seems to be increasing) and then it is like it is gone. Perhaps a
twinge here and there but generally no swelling or fatigue.
It seems like I am having about 3 good weeks and then it hits again.
Does this sound like RA still?
I do not improve as the day goes on either. If I wake up hurting it
doesn't seem to let off.
I am avoiding running to a rhuem right away, it seems to me that I am
not that bad off at this time and don't want to take a bunch of drugs
if I don't really need to.
Insights?
Dawn

Morning all - well, here in NZ anyway.
Heard from my sister re test results she has undertaken and thought I
would put them to the group as it doesn't mean a whole lot to me.
Her RA factor on 30 May was 82 Ul/ml.
Protein C Reactive was 10.5 mg/l
Waaler Rose test was positive
Sedimentation 1st hour 30mm and 2nd hour 62mm.
This is her second week on Methotrexate - had a bad night last night -
two hours sleep! Not sounding very good at all.
Appreciate your help in deciphering the above - I gather it is not
too encouraging.
Take care all.
Veronica

Dear all,
I hope and pray that you are fine.

Issue 1:
In responce to my last email, in which I said that my Rhematologist also prescribed Calcium supplement to my sister, Harold said that calium is for general health only. I discussed this with my sister (who suffers from RA and is a doctor herself) and she said that steroids ( i-e Predinose ) causes Osteoporosis thats why doctor prescribe calcium supplements. (usually these supplements also contain Vitamin D)

Earlier my rhemy also said that only food which RA patient should take "daily" is milk (for calcium reasons)

Issue 2:
My sister's RA was diagnosed AFTER about 3 months of pains. The reason was, all doctors are taught in medicine text books that RA pains are ALWAYS symmetric and they start in hands mostly.

In case of my sister, pains started in ONE foot-joint only (it was NOT symmetric). Can other people share their experiences that how their pain started + was it in even no of joints or odd??? if most people have pain in odd joints (i-e pain is assymetric) shouldn't medicine text books tell this thing??

comments?? suggestions??

Prayers,

Hassan

Hi all. I have another question... As I mentioned before, I don't have a definitive diagnosis of RA , but my rheumatologist suspects it. I take Plaquenil and Mobic, and due to a flare that is just beginning, I am starting on a round of Prednisone. My question is this.... Does sun or heat cause anyone to flare? I seem to flare horribly after being in the sun, which I thought was more of a lupus thing. I am running low grade fevers, having horrible hip and shoulder pain, and also pain in fingers and wrists, and I spent a day at my sister in law's pool the other day. It always seems to happen after a day at a pool. Just wondered if anyone had heard of this being related to RA. Thanks!
Pam

We would like to remind you of this upcoming event.
Barbara's Birthday
Date: Saturday, July 12, 2003
Time: All Day

Hi Pam,

This is Stephanie in VA. I have Reactive Arthritis, which is an arthritis that is triggered by an infection (for me it was an eye infection). RAA is one of the few types of arthritis that is always assymmetrical. I test negative for the Rheumatoid Factor. Before I got diagnosed, my Sed rate was over 200. My last bloodwork it tested at 16 (Yeah! Normal range!)

Unfortunately, RA and other types of arthritis are not as easy to diagnose as you might think. For me, a neurologist (my 13th doctor) referred me to a rheumy, who instantly believed it was arthritis. I think one thing that prevented me from an earlier diagnosis was that none of the first 12 doctors really listened to what I was telling them.

Take care,

Stephanie

Hello,
I would appreciate it very much if those of you who have been
diagnosed with RA could tell me your experiences and how your
symptoms developed. I already have the DX of osteoarthritis, it's
very severe and the medication I've been prescribed thus far has not
helped. I had an arthritis profile done a little over a year ago and
it was negative except for the C Reactive Protein which was very
high. For years several fingernails have cracked down the middle, I
had a thyroid profile done but it was negative, and I am most
certainly not undernourished. Now my little finger on my right hand
(one of the fingers with a fingernails that cracks down the middle)
is becoming very crooked. I have pain 24/7.

Dear Yolanda,

Hello! I'm Stephanie. I'm 25 years old and was diagnosed with Reactive arthritis 3 years ago when I was 22. It took 14 doctors 3 months to diagnose me. Like you, I was happy to finally have a diagnosis, but shocked at the diagnosis. The few people I knew with arthritis (at the time) were all over 65.

My current meds are: Azulfidine EN, Ibuprofen, Folic Acid, Methotrexate, Prednisone, & Remicade. The combo is really helping me but it is the Remicade that alleviates my fatigue. One of the hardest parts of living with arthritis, in the beginning, was forcing myself to slow down. Now I begrudgingly accept it.

Take care,

Stephanie

Hi all,

My sister takes Folic acid 5 days a week and on remaining 2 days, she takes Methotrexate. Folic acid is there to cure side effects of methotrexate and its VERY important for the liver.

Those taking methotrexate should get liver tested each month. They should also get "RA Factor Titer test" (it determines amount of RA Factor in the blood)

My sister took methotrexate for abt 2/3 months and her RA Factor has dropped. Her doctor asked her to keep taking this medicine for atleast 2 more months.

Dear Veronica, my sister's doctor also asked her to take Calcium supplements because its necessary for her. Plz do ask your doctor about this. which country do you belong to???

Another suggestion is (sorry for repeating this so many times) "DO consider steroids through IV if you are suffering from joint swelling because swelling is very dangerous thing and can seriously damage a joint"

GOD Bless you all.

Hassan

Happy 4th of July! (Click on link below to see the beautiful "card"... it takes a bit to load, but is worth the wait to see it to the end! :)

Becky Pacey

http://www.jacquielawson.com/viewcard.asp?code=1471903700

Hi all, This may well be an inappropriate question for this list and please tell me if it is.
My Doctor has recently suggested That I may want to start looking at Morphine for pain relief.I am not ready for that yet but was wondering if any one knew if it was safe to try Marijuana while taking 22.5 mgs methatrexate pre week with 1600 mgs of Brufen Retard per day.
I would like to be able to sleep a few hours at night and was thinking that a puff or two at night of Marijuana may help me in that direction or maybe I could bake it in a cookie if I knew how.
Hoping someone can help.
Cheers,
Paulette

If you can tolerate the pain and still function reasonably well, you made the right decision. My main problem with Prednisone is that it makes me feel good without slowing down or stopping the joint damage. I had to take it for my first year to avoid being bedridden but now Methotrexate and Remicade together control my RA so I am off Prednisone except for flares. I hope your RA medicines work well enough so you don't need Prednisone.

I have heard that Glucosamine and Chondroitin help Osteoarthritis but not RA. Also I have heard that vitamins and other supplements do not specifically help RA but you should take them for general health. I take vitamins C, D, E, and a multivitamin plus a low-dose adult aspirin and extra calcium for my general health.

My significant other and I have been married for 51 years so we know each other pretty well. My wife is a RN and she goes with me to almost all my doctor's apointments so she understands RA quite well and is very supportive. There is a lot of general information about arthritis on the ArthritisInsight web and your husband could learn a lot by becoming familiar with that site. http://www.arthritisinsight.com/medical/disease/ There is also a very active message board on that site. http://www.arthritisinsight.com/cgi-bin/wsmbb/wsmbb.cgi?SB+KYWRJLLXVS/AKFCLKZQUN+config Good luck and God bless.

My Rheumy had given me the option to start Prednisone as a more
aggressive treatment with my Plaquenil and Vioxx, but I declined due
to the mixed reviews about weight gain. I am already overweight and
having trouble losing the existing pounds. Now I am wondering if I
made a mistake!!! Do the benefits outweight the side effects?
Doc also claims that vitamins and/or supplements like Glucosamine
will not make a difference in my condition. Do any of you take
regular supplements?
Also, if I may ask, how are your significant others dealing with the
disease? My new husband hasn't really said much since I was
diagnosed, even though he encouraged me to see the doctor. I've
asked him how he feels, but he is avoiding the subject.
Thanks for all your support! This board is wonderful!
Yolanda

Hi: I am new to this group. My name is Debby and I am 49 years old. I haven't been diagnosed yet with RA because I am in the process of getting new health insurance and my rheumatologist wants to wait until I am approved for the insurance before he officially diagnoses me and puts me on meds. I have been seeing him for a year for fibromyalgia. Talk about feeling like you have been hit by a Mack truck --- try feeling like the truck not only hit you but backed up over you to make sure he got ya! The doc has finally found meds which work for my aching muscles which is an anti-seizure drug, Neurontin. Unfortunately it is very expensive. It costs me $350 a month for this drug so I take it only at night and once during the day if needed. I started with fibromyalgia after my husband and I separated a year ago. My rheumatologist said that fibromyalgia is usually caused from poor sleep habits, which I definitely had and still have even after being put on meds to help me
sleep. He says it is also caused from stress and people with fibromyalgia are more susceptible to RA. I have aching joints in my fingers and feet. My back is also extremely terribly sore but that is probably from the weight I put on recenty with the meds I was on. All my fat is in my belly and that puts more strain on my back. I type for a living, medical transcriptionist, and some days my hands hurt so bad I can't type. So far there has been very little swelling, if any, just lots of pain in the joints on the palm of my hands. My right foot hurts all the time and he has also diagnosed a Morton's neuroma which I denied for a long time however now I can no longer deny that is what I have because I have all the symptoms now. As soon as I get the health insurance approved I will be able to go on meds for the RA and also the Morton's neuroma. If I can just hold on until then. I hope to have it within the next 4 weeks because my next appt with the rheumatologist is
August 1. Anyway, I just wanted to say hi and why I joined the group. If anyone has any remedies I can use between now and next month please let me know. I have tried Icy hot, that "blue" stuff, arthritis spray, everything .Warm water does help but I can't type with my hands dunked in water :)

Debby
Trust, Have Faith, It is Belief that gets us there. God will help us through life.

Hi All

I have been lurking for a while now and have a question. DH has Ra for past 20+ years he is still very active and works full time He takes methotrexate 20mg orally once a week for past 7 yrs. also viox 25mg He was having numbness and pain in his hand and arm. Reg Dr sent him to a neurologist. MRI shows arthritic changes ,spurs,in his neck causing the problem. Neurologist wants him to do physical therapy. which is not possible because his job requires travel and he never knows where he will be until Monday morning. Neurologist wants to schedule him with Neuro surgeon. I called reg Dr and asked if she should go back to rheumtiodologist and question possibility of different meds or cortisone shots. Reg Dr said no Neurologist can do cortisone shots. What would you do?

Thanks

Sherry

Hi, I'm Kathy. I found this list a few weeks ago and have been lurking, but I thought I would take the plunge. I was diagnosed with RA in 1975, when I was 20. I've been on many different meds over the years, right not it's Tolectin, Plaquenil and Sulfasalazine. I kept working as long as I could, but finally went on disability 3 years ago. I've had wrist and ankle fusins, and my rheumatologst is now suggesting a hip replacement but the surgeon is reluctant to do it in someone my age. Has anyone else gone for the new hip and how have you done with it?

Kathy

Hi all,
Was wondering if anyone has moved from the east coast out to the west
coast for a dryer heat thing???
I lived in AZ a while back and it was super awesome for