Rheumatoid Arthritis

Does anyone insure you once you have been diagnosed with RA?
My husband and I have insurance which is for hospitalization only and
has a $5000.00 decuctible.
We began to search for something else and I stupidly answered honestly
that I have RA.
The insurance man that was to meet with us tonight called to cancel and
said that no one would insure me.
We had tried to get BC/BS earlier in the year and they came out and did
blood work. They said that they would not insure us because my
husband's cholesterol was high and they said that my blood sugar was
high. My blood sugar was only 110, which as far as I know is normal.
Does anyone have any suggestions?

Lynette -
Wow! And I thought I was having a rough time. Sheeez. That is really
something.
Have you found any answers? What happens with special needs children as they
reach
legal adulthood (in terms of health insurance)? Sounds like the best thing you
could
possibly do is find a job with full benefits, but is your RA too severe to do
that?

I just started going through the screening process to take part in an investigational study about RA. For the time being, instead of taking my prescribed Naproxin for pain, I'm allowed to take over the counter Tylenol. Anyhow, it's my understanding that there'll be x amount of participents that will get something like 5 mg of the test drug, some will get 10 mg of the drug, so on and so forth and there'll be a percentage of participents that'll get a placebo. Plus, I need to track how much Tylenol I take throughout the day.

Tomorrow morning, I'm schedueled to go in to continue the screening process (I think the screening process will take a couple of weeks.) I'm supposed to fast for 8 hours and I'm supposed to go 24 hours without taking pain reliever medicine. I'll probably soak in a hot tub tonight to help me sleep. I'm already paying for it in a way. I was having a good day yesterday and went mall walking, and now have some pain in my left hip and knee. That's life, I guess.

I just wanted everyone to know I haven't gone for good and I did want to let everyone know how it's going for me.

Love to all,.

Susie

6 weeks ago I was started on methotrexate and prednisone and for the
first 2 weeks it was like a miracle. I am taking 12.5 mg of mtx and
7.5 of prednisone. After about 2 weeks pain has returned but not in
all my joints which was the case prior but my hips and back are
still very sore. Sleeping is the worst as I cannot get comfortable.
I am trying to do at least 20 minutes of walking every day as this
does help except for today when I thought I would go a little
farther and I was not sure if I would make it home due to the pain.
I do appreciate in the pain reduction in my feet and hands and my
knees. I do a lot more around the house than I have in years.
Unfortunately the prednisone is giving me elevated mood and I do
want to get off of it as soon as possible because of this. I have
bipolar and it is triggering mania. I appreciate the fact that I can
actually get on the computer and type without pain. There are many
pluses. Why does the meds effect some joints differently than others?
Janice

Hi, All ...

Have been following this group for a few weeks - Thought I would share my experience.

Was diagnosed with RA shortly before my 61th birthday two years ago. This was about six weeks after an extremely stressful period, which seems to be a triggering factor for this disease. I had been experiencing some joint pain for a while, but woke up one morning and was barely able to get out of bed, barely able to walk. This was due to overall weakness as well as joint pain.

All my symptoms pointed to RA - pain in feet, ankles, knees, shoulders, elbows hands and

equal to right and left. My primary did blood test and confirmed higg RA factor and referred me to rheumatoligist.

Rhuemy explained need for agressive treatment and started me immediately on Vioxx, Prednisone, MTX and folic acid. I started with 10 mg Prednisone daily, 20 mg MTX weekly as well as daily Vioxx and folic acid.

As symptoms improved, I slowly went off the Prednisone over a period of 8-10 months and after Vioxx scare, discontinued that. Condition improved continually to the point that I was basically symptom free most of the time.

I have noticed that if I do not get enough rest (I'm a nightowl and for many years have burned the candle at both ends) I will experience a flareup. I did a short time adding Arava during one of theses flares but after Vioxx whoopla, quit Vioxx and Arava and have been only on MTX and folic acid for over a year. I remain symtom free for the most part and continue life as normal except for more attention to adequate rest.

I experienced a flareup recently with pain in hands and slight feeling of "feverishness" - Rheumy had me take Celebrex - 2 tabs a day for 1 week, then 1 daily for a week - that seems to have done the trick. Occasionally I take Vicodon (500 acetophetomin- 5 hydrocodone) for pain usually several days before weather changes which seems to be the only time I am symptomatic.

Considering where I started - totally crippled, barely able to walk, lift my arms, button a button or open a jar - I feel extremely lucky to have had success with aggressive treatment from the start. I have only a slight "swan" deformity in several fingers of one hand - not enough to keep me from my favorite pastime - playing classical guitar.

I hope this account will give hope to those of you who are just starting on this uninvited quest. There is life after RA diagnosis and it can be normal and good. Good luck to you all.

Jack McGuire - Carlsbad CA

Hi Everyone
Yesterday was the end of the 3 month study I was on for Humira. Boy I'm glad that is over! One of the questions was "do you feel better now than when you first started this study?" My answer...Heck yea ...actually I had to mark the box that said "Much Better". I had to fill out a survey like every visit with 5 pages of how many things I could do in the last week, last 4 weeks, since I started humira etc. My chart was very much improved...So for now I think this is the right medication for me.
Since I'm doing so well he has dropped my Prednisone from 5mgs a day to 5mgs one day, 2.5 the next, then 5 mgs, keep rotatiing til my next appt 6 weeks from now. The least amount of prednisone I have been on is 3mgs and that was many years ago. The December appointment will be almost a year since I started seeing my new RD and I started at 20mgs..so he definatley believes in slowy decreasing the pred. So overall it was a good appointment day.
--

I wanted to write in to introduce myself. My name is Linda and I am 41 and was just diagnosed with serum-negative rheumatoid arthritis in March of this year. I ended up seeing a rheumatologist in a round about way. It began with such fatigue that I couldn't get out of bed in the morning. I thought it was severe depression and began meds, but even though I felt better overall, the fatigue was still there. I ended up seeing a hand surgeon and it was determined I had carpal tunnel so he operated on my right hand (had my left one done in 1991). My hand somewhat felt better, but 5 months after the surgery, the pain got pretty bad in my wrist. My hand surgeon checked it but felt I needed to see a rheumatologist. I did and she began asking me questions. I had no clue that all the pain I had felt for a few years in my feet, ankles, knees, wrists, hands and the fatigue were all related! She ran a bunch of blood tests, and my sed rate was 87 and something with my creatinine
was off. She ran all the RA tests which were negative. She diagnosed me in March. I began methotrexate and folic acid. I took it for 2 months and begged to come off of it. It knocked me out for 2-3 days a week. Having a disabled child, I just couldn't be knocked out like that. She then put me on Enbrel injections. I have been amazed at how awesome the Enbrel works. The extreme fatigue is gone, the really bad pain is gone. I had a hysterectomy in June and couldn't take the Enbrel for 3 weeks and boy, my joints hurt. Just this month, my husband, my 2 daughters and I moved from Worcester, Massachusetts to Calgary, Alberta, Canada. It's harder to get in with doctors up here, so I'm not sure if when I'm thru with the last 3 injections I have when I'll get the Enbrel again. I should mention too that for work, I am a nationally certified pharmacy technician, so I stand the whole time I'm at work and do lots of typing, counting pills, etc. I haven't begun working in
Canada yet, but I will within the next month or so. I need to lose about 80 pounds which I know would help my RA, but haven't done so yet. Too much going on in life with a major surgery and huge move. I look forward to talking with others who understand the pain, stiffness, and fatigue.

[LINK]
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i'm beverley and am moving to a modular house,one long room that
would be easier for me since i have such problems turning door knobs
and pulling doors open.
i have several nifty assisting tools and gadgets for the kitchen and
bath and dressing and reading and doing my crafts, when i can.
but
there is a little step-down porch that is making me very unhappy,
and very concerned for my health and welfare.
i wrote a first post about it, asking for ideas. i looked at all the
sites of ramps and handrails that i could find online but i can't
find what i'm looking for. anything that would help take the
pressure off my hips and knees would help. a ramp wouldnt help much
without rails, but i'm on SSI and that sort of fixed income, plus i
know no one who could construct one for me.
my disability wasn't originally for medical reasons, so that offers
no help in the way of medicaid paying for it.
i could not wait to get on a support group for others who suffer the
way we do, who empathize as only we can, and who know the importance
and healing properties of sharing ideas and problems and humor and
sympathy.
hugs to all,
beverley (who feels SO much better just being here:o)

Hello! I am trying to find some information on Remicade. I do not have
RA or Crohn's, but I was diagnosed with a bone marrow disease in 1993.
I am currently using Remicade. I am trying to figure out if anyone
has heard of Remicade being used to help bone marrow disease. Thanks.
De'Vonda

hi, i'm new to the group, not new to the doom and gloom of rheum-
type moods and depression and sadness that just come along with
everything else. but i'm still a pollyanna-well,most of the time
except for when the pain is too much and the stiffness is too much
more.
anywho, i am moving (strictly for economic reasons) to a modular
home that has two steps down to the ground like an RV or trailer
home; and after only two days of carrying NOTHING in my hands or
arms to carry into the place, just going up and down the steps a few
times each day, i am so sore from my shoulders to my ankles that i
am wondering how to get my deposit and first month's rent back.
i am such a coward about confronting people to ask for a refund,
especially people i have bought something from or paid to do
something, and now i will have to either ask the owner to build
handrails for me to use the steps a little easier on me or ask for
my money back.
it's only since friday that i paid him. what do you think?
i am still in my apt. where they are raising the rent on the first
but it's on the ground level,the door is. and, at the new place,
they are paying all the utilities and providing a safer, quieter
environment.
it's a little one-room "house" situated in the middle of an RV park,
so it's not as if the owner is a rental-estate agent or owner who
does maintenance work.
i need to move,i already paid them the money,but i could so easily
fall. you know? what should i do? any ideas appreciated. thank you.
beverley

I went to my Rheumy Tuesday, and the MRI on my hands and feet showed
inflamation, but no joint erosion yet. The pain in my wrists is tendonitis
again.
I am having more pain in my fingers and toes though, so he increased my MTX from
12.5mg to 17.5mg. Took the first dose Tues. night. I was a little light headed
Wed, but no serious aftereffects from the increase.
I have been having some "triggering" in my fingers...they sort of get stuck and
won't bend, then there is sort of a snap when they bend. It goes away as I use
my hands, but comes back if I don't move them for a while.

I have just found out when they are going to do my knee surgery it
will be January 19 i am not looking forward to it as i am a little
acared of what to expect has any one had this done and after that i
have to have ny knee surgery i habe th go in for a total rusen on my
riaht anlke
Sherrie

Hello All

I have heard from my G.P. who has in turn had a report from the Specialist I saw 2 weeks ago. They want me to start on Hydroxychloroquine, has anyone any experience with this at all please?

Thanks

Ruth (U.K.)

Wendy check and see if you can convert your COBRA policy to a self-insured policy at the end of the COBRA time period. Some policys have that clause written in and some do not.

Beyond that check with Unicare.com As a long as you have no break in health coverage you should be able to get coverage.

This is one of the problems when you leave from under and employer sponsored health plan. They can apply all kinds of rules about pre-existing conditions.

Good luck

Toni

Help! I left my job in May to go into biz for myself and can't find anyone to
insure me
now! RA stinks! I'm paying over $300/mo for COBRA, but that will eventually
run out.
Anyone have any ideas about health insurance???
wendy from birmingham, al

Hi Cynthia,

I know what you mean about getting back to part of your "before arthritis" life. In my life I was a dance student & teacher (tap, ballet, jazz, modern & aerobics). About 3 years after arthritis I took a summer adult ballet class for beginners. It was disappointing that my body couldn't keep up with my mind. I've wanted to try again but it never worked out. So, I got involved in new things -- volunteering with the animal shelter & Red Cross & walking 2 marathons. It has been fun, but I do hope to put my ballet shoes on again someday. :)

Take care,

Steph in VA

There was considerable research done on special diets for the joint
pain in RA and it was found that a vegetarian diet with the addition
of fish and a little chicken was most beneficial in aiding to combat
inflammation. Also complete avoidance of coffee, alcohol and dairy
products. Adding pineapple juice since it contains bromelaine, a
natural anti-inflammatory.

Newly diagnosed with RA. Wanted to start Humira but insurance denied it
until I use Enbril first. I should have my first injection next week.
Are there any side effects? How many weeks until relief? I am looking
forward to getting off of the prednisone. I hate it!
Gena

I've had RA for 3 years now and I've being taking this low cost, no
side affect drug for a year and a half and it's working. Little or now
pain. Please check this website out for a full run down. It deals
with MS primarily but it covers all autoimmune diseases. THIS IS A
LIVE SAVER, HAVE NO DOUBT.
http://www.lowdosenaltrexone.org/
http://www.lowdosenaltrexone.org/ldn_and_ai.htm
I hope it works for you, Please only get drug from recommended
pharmacies on Website. Your GP can prescribe it.

I started a study a few weeks back for a Anti-TNF injection, it's a once a week shot. And like Susie's no name yet. Research studies go in phases, the first is usually a double blind study, that means both you and the research will not know if you are receiving the drug or a placebo. I'm in a third phase of a clinical trial, that's means it's open label, everyone in the study gets the drug and they are studying potential side effects on a larger segment of the population. Normally at this point the drug has been determined 'safe' and the dosage has been narrowed down to a effective dosage. My experience so far is good, the swelling is down, my energy is better, not great but better. I even cooked last night! That's a big thing for me. I do have a question: As the swelling went down in your joints, has anyone else experienced itching in their joints?

Before any participation in a study the research will go over all possible side effects, what the study entails, what is expected of you and any tests. You will get written information about all aspects of the study. It's also a way to get the ultrasounds and MRI's your HMO will not pay for.

Oh, and I should introduce myself, my name is Cynthia, I am from California. I've been dx since 2000 at 40, although as someone who had 'growing pains' as a teenager, and never had painfree joints, the dx was only a formality after I could no longer walk in the mornings. I knew I had RA, both my parents had it and my mother died from it. I've been on Mtx since 2000, now at 9 pills a week. If you feel sick after taking Mtx, ask your doctor about taking folic acid with it, folic acid keeps that flu feeling at bay. I am also on Sulindac and the usual other stuff. For those of you who can't decide about taking the Mtx(methotretate), it took at least 3 months for me to see any improvement. So don't stop too soon, it takes time. I know I must have had some side effects during that time, but it took me so long to get a doctor to pay attention I was in fairly bad shape by the time I got on Mtx. Enbrel and Humira were not an option then, so you are lucky today to have them.
Although my GP did talk to me about them about two years ago, but that was when they onlyused it for advanced RA. All in all, I consider myself lucky. I only have a few joints that are going visibly bad and my bone damage could be worse. I am still working and hopefully with the injections, I will have another 5 years before I have to look at retirement. Before my Rheumy figured a way around the HMO (gotta love HMO's), I was looking into Disability retirement. Luckily, I have a Rheumy at a research hospital with active RA research going on.

My goals are to be able to do my artwork again and dance.

Cynthia

Subject: Re: rheumatoid studies
I keep forgetting to sign my name.
I'm Susie from Indianapolis. And I'm the one who is taking part in the study.
By the way are there any Hoosiers out there?
Susie

Hi All,
Where do you get the paraffin and how do you do it? Also, has anyone had
good experiences with it?
Thanks,
Elizabeth

Hi Dawn,

I know that this is really late in reply to the Flexeril but I read your post from the last part of September and I thought that I would respond anyway. I took Flexeril for many years and it just kept me doped up all the time. Made me real sleepy too. Didn't help much with the Fibromyalgia or rheumatoid arthritis or the osteoarthritis that I have.

Kathy

Next Wednesday I'm going to start going through a screening process to take part in a study to see if a medicine (to be named) will help treat rheumatoid arthritis. In a way, I'm kind of looking forward to it, because I will be compensated for my time, but in a way I have conflicting feelings about it. The way I understand it the study will determine whether this medicine can be used to treat RA, which if it helps I'm all for it. But on the other hand, I'm a little concerned because of possible side effects. Of course, I know that there is no such thing as a prescription without any side effects. Plus, I know I can always discontinue the study. Sorry to be rambling on. When I find out more information about the study I'll let everyone know.

First off- hello to our new members. I wish I could answer you all personally
but my RA has been bad in my hands and fingers and I can no longer type. I
use a pen to press the keys.
Anyway, this brings me to my question. Is anyone here on a TNF blocker
only? I am and in the last few months it has not been cutting it, with me
experiencing RA in new locations of my hands, fingers and toes. My Rheumy
who originally diagnosed it wanted to see how well I could be without the
MTX or other combo therapy. I have always had a bit of pain but very
liveable, but lately I have pain everyday and find I am needing to turn to
narcotics approx. every other day and I am literally crying before I take it.
I am just about to start trying for a baby so now is not the time for the MTX!
Also, I don't want to be taking narcotics either, that's why I am waiting until
I
am crying to take them
Anyway, just wondering if anyone just takes the TNF alone and what their
experience is? Also, any suggestions would be most appreciated.
Elizabeth

i live in parma area.

Got this info form another r/a group.Paula
Some RA related skin rashes and conditions

http://dermatlas.med.jhmi.edu/derm/result.cfm?Diagnosis=-1475948023

Hello
My name is Lillian. I am 64 years old & was diagnosed with Rheumatoid
Arthritis. I would like to know what am I in for? I am in excrusiating
pain, in my ankles, knees, wrists, elbows & my shoulder. Walking is
even difficult at times. Has anyone experienced RA like this & what
could be done?

Hi:
i'm not sure if anyone on this list can help me or not but thought i
might try.
i had a total fusion on my right dominant wrist on August 31 for
something called Kienbock's disease (avascular necrosis of the lunate
bone). I am over the post-op pain but am still experiencing pain in
my wrist 6 weeks post-op. My questions are: is this normal? and if
anyone has had this procedure is your ulna bone very prominent? from
looking at my x-rays and looking at images on line - it looks like my
ulna bone is not fitting into the ulna notch on my radius bone.
the surgeon seems to think that i should be pain free by now and is
not really giving me very good answers as to why my ulna is sticking
out. i can deal with what it looks like but am getting really worn
out by the pain.
if anyone on the list has had any experience with this - i would love
to hear from you.
thank you.
jean

Hi Everyone,
My name is Kari and I have been lurking for a while but feel it is
time to join the conversation. I was diagnoised with RA and Osteo-
arthritis about 3 months ago. I have RA in my feet, hands, wrists
and elbows. I have just started taking sulindac, sulphasalzine,
folic acid and am due to start methotrexate this Sunday. I am
thinking about the catch 22 thing as I am 38 and feel worse on the
meds than not but worry about long-term joint damage vs long-term
side effects from all the meds. I am contemplating going the natural
route. What are some of the side-effects of the MTX??? Do you get
more sick with colds etc,?
My Rhumy is not the most forthcoming and I need to go in with a list
of questions as he doesn't tell me stuff unless I ask. Right now my
hands and elbows are the worst affected.
I have been educated more by all of your feedback on this board, so
thank you.
Kari

My rheumy took my off the plaq becasue of the all over rash I got. I am hoping that that was the med that caused it 'cause he wants to to take arava and I see that that can also cause a rash. Meds aren't fun.

He was going to check my enzymes next time I go in to make sure that they were fine and if not, take me off... I know a lot of people that plaq was discontinued cause of the liver enzymes being high.

I don't need that since I had a problem before with that.

Paula

Hi there...

I live in Canton Ohio. My rheumy took me off of the plauinel....said that was what was causing my rash (from head to toe). it was miserable.
Paula

yes i get them on my fingers also, all i am on is pacquel. i think
thats how its spelled. i get them when i am really stressed out. and
i am really stressed right now. am also in the cleveland area

Hi Deborah...

I take 50 mg of trazadone....but it doesn't seem to help. Maybe I will ask doc about the others that you take.

Thanks..Paula

Hi Miriam.....

I'm in Canton.....we're close.

My hometown is Cuyahoga Falls but we bought a home in Canton and I really miss the Falls....

Have a good evening...

Paula

Hi Elizabeth....

Let me tell you my experience with Humira. I took it a few years back with hardly any side effect except mouth sores every once in awhile...so rheumy took me off. Then..after 2 years, he put me back on cause nothing else was working for me.... Well...I gave me my first shot.....4 days later....a huge purple, reddish bruise that burnt...just like the humira shot does when it is injected..but stayed that way. Called dr and he said to use benadryl 2 days before...2 tabs a day and 1 tab the day I gave myself the shot... Told him I was very leary cause I couldn't stand the burn with this. The benadryl helped my 2nd shot..not so bad but the 3rd shot (every 2 weeks...on July 27)...the reaction was sooo bad that I couldn't even put a sheet or anything on my leg...left my leg outside the covers with the fan blowing on it...it burnt so badly. Anyway...from July 27th till about 3 1/2 weeks ago..there had formed a scab and when the scab fell off, there was a pressure (decubitus)
ulcer under it.. like a deep crater. Went to the wound care center and am now packing it 2 x a day.That's my humira story. I seem to be allergic to many meds now. dr just took me off of plaquinil because I broke out all over with a body rash. Scared to take anything anymore.

I hope you can get some relief.....

Paula

My doctor swears my sinus trouble is allergy related but I know it
is the Humira. I just finished a 10 day run of antibiotics this past
Monday. I injected Humira that night and the next day, I had a
whopping headache and pressure! Its so totally the Humira.
I know I am a lot better off on Humira than not, but these sinus
infections are horrendous!
Just needing to vent!
Elizabeth

Hi Deborah...
Thank you SO much!!
I will check into wisdomking as soon as I am done with my reply.
I believe you when you mention divets on the floor. I am constantly
dropping..no fun to cook anymore. My fiance understands too but they
really can't truly understand it....unless you experience it. It would
be nice if we could send them to the grocery store and go thru what we
do...or just have an hour of our experience with r/a. Just 1 hour!
Dave does helpme a lot ut I feel like such a weakling sometimes..and
forget the pill bottles, or the thick plastic they put over things
now....even opening a box of Kraft Mac and Cheese is an experience...lol
I am having a hard time sleeping..rheumy gave me trazadone but it
doesn't seem to help..50mg. I think it's stress over dental appts I
need..full mouth extraction..r/a did a job on them and PLUS..the
biggie...my 16 1/2 yr old toy poodle is at the vets. He's running
tests on him and it looks like he may have prostate ca. So,no matter
how much I tell myself ...he is 16 1/2 after all...he has had a
wonderful life ... yada yada yada..it is tough. I think it is the
quietness around here. He always followed me wherever I went..my shadow
and has been with me thru so much..... That is why I'm not sleeping.
Glad you got all that rest...I'm sure your body was telling you that
you needed it badly!!
Have a great weekend..thanks for the good advice...
Paula OHio

Deborah..what is the name of the adhering bandages you buy?
Paula

I agree totally. I see people getting down on one knee or able to sit on the floor and get up. I think, I used to be able to do that. Just the little things. Wish I couldget down on the floor and get back up.

I go to my drs office and couldn't turn the handle on the exam room door..had to wait for someone to see if I was okay. Now, i carry a coated type material to help me turn doorknobs. Sometimes I wonder if I am going to be able to get out.

Can't carry much anymore....forget the brown grocery bags.Or the gallon of milk.Now,my fiance goes to the store for me. I can't reach things on the top shelf and if I can...bombs away when I try to bring it down to the cart.

It's hard for people to understand...and trying to turn my deformed hands for change.....forget it. No can do. Finding clothes that aren't a hassle to put on..... wearing ugly shoes cause the pretty ones are out.

I get soooo frustrated and my attitude changes. It can be depressing and you try not to let it get to you but in my head I am thinking..yikes...I'm 56 and I feel 86...how am I going to be in 10 more years...?? What kind of life is this? I worry that I will fall...since my balance is worse than ever. I hate to go anywhere by myself sometimes.The car is getting harder to turn and to put in park or drive.

We're allowed to be upset with what we're going thru..who wouldn't? So, vent away all you want cause we understand completely.

Hugs....Paula

G'd evening everyone..It has been along time since I posted..alot
of neww people on here...Well on was on Enbrel and MTX fro 3
months..instead of gaing energy I was sleeping around the clock..No
life at all. So after much thought I stopped the meds..now after a
few weeks have gone by..my syptoms have really gone wild..Feels like
every joint in my body is at war....So I am in a Catch 22 situation.
I have been on all the DMARDS except Humera but that is so much like
the others....I am thinking of going back to Remicade..
As anyone else here had similar problems? Please let me know.I need
imput and some people to talk with...Skye

Hi everyone,
Another question I have for all of you; is there anyonelse out there
that gets teeny tiny little blister type bumps on their fingerstips.
They never really pop or even get big enough to pop but they can be
sore. I seem to get them every now & then, and I think they seem to
come when I'm off my meds or in a flair........what do you think?
These aren't the same as the bigger pink hot nodule type bumps, these
are for sure tiny little blister type things.
Just wondering if it's common/related or another quirk of mine.
Thanks

I checked out Limu and it is very expensive .. I think $44 for a bottle....is that correct? How long will 1 bottle last?

Paula

I've been out of town and haven't read posts for a few days until this evening.
I'm really
glad to know that tomorrow is Arthritis Day and will mention it to people. I'm
also glad to
know that others are concerned about taking meds to alleviate symptoms while
leaving the
causes untreated. i have had a hard week. i stopped my plaquinil, then cut
back on pred.
and sulfa drug only to have pain i hadn't experienced in many, many months.
it's so
upsetting. very emotional. not wanting to believe that the drugs are as
helpful as they are
- that I'm dependant on them to feel okay and function normally. also realizing
that i
stayed at a job i hated because of the money, and ended up with RA. i believe
my
personal unhappiness brought out the disease. i want this to go away!!! aren't
there ANY
success stories about there of folks who "beat it"?

Hi there,
You may or may not be aware that tomorrow (12 October) is World
Arthritis Day. I have been thinking about what this means to me and
what I can do on this day to help "us" (those who suffer daily with
RA). I have come to the conclusion that the best thing that can be
done is increase the awareness of RA amongst those close to us and
others in the community.
At times, my family and friends have said "I feel so helpless, what
can I do to help?" I really believe that the best they can do is
try to understand some of what we go through on a daily basis. They
can not know the pain we experience in our joints, the grief we feel
at the loss of our health, the thoughts that go through our minds
each time we pop another pill or inject a new treatment. What they
can do is increase their awareness and understanding of RA so that
we dont have to explain ourselves next time we cancel an appointment
with them, have to go home early from a night out or when they
cannot understand why we are happy and well one day and bedridden
the next.
I plan on emailing some of my friends, family and colleagues and
letting them know about the significance of World Arthritis Day. I
may also direct them to some websites that may help with their
understanding of RA. If you feel that this is something you also
wish to do, I encourage you to do it. 12 October is OUR DAY to have
our voices heard.
As I write this email, I am in the middle of a bad flare, which
reminds me of the purpose of this support group. I dont write often,
but I do think of you all often and you will all be in my thoughts
tomorrow - 12 October.
Love, Suzie

Hi Maggie...

My mom passed in 1981 and at the same time, I was having a problem at work with a horrible lady co-worker. When my mom passed, I was dx about 3-4 months later with r/a. I truly believe the stress with her death at 59 yrs of age and the stress with the work situation caused my r/a to manifest itself.

Thanks for sharing your story.

PAULA ohio

Has anyone had a problem with a skin rash with Arava? A friend told me that Arava causes a rash also. Yikes.....

Paula

To everyone who's rheumy's are acting like some of the problems I've
been reading about aren't related to RA I just want to say. I feel
for you. I don't remember who it was, but someone mentioned how they
were treated like swollen legs was a 'girl thing' I don't blame you
for looking for a new doctor. That's ridiculous. I'm really lucky.
My rheumatologist really listens to me and when my knee and ankle was
really swollen he added methotrexate and folic acid. When the
swelling started having an effect on my circulation he increased the
dosage. I'm not real keen about it, but if a slight increase in my
dosage helps to alieviate the swelling and the circulation problem
then I'll deal. I know he'd like to see me be sympton free.
Hugs,
Susie

Well your Rheumy sounds a lot like Mine...:( I have a KNOT on my neck.....to which he said was a pimple.....(@@)....I made his Nurse feel it and asked her if it felt like that to her...She said NO...and I knew they weren't either........SOOOOOO......I went for MRI's of the neck.....and the KNOT ....is Bulging Disks........Don't think I wasn't Smug when I carried the MRI's to the Rheumy and SHOWED them to him ;) LOL...... Turned out ..I have OA with the RA and that was swelling my neck and shoulders....causing the disks to bulge from an 18 year old injury.....causing the headaches and pain and stiffnes in my neck. ...Not a freaking Pimple......sheeshhhhhh.........SOMEDAYS....I Just want to ask him ..if he Wants his Stupid sign....(@@). Or ask him if I have Stupid stamped on my forehead......it gets really Frustrating sometimes.

I have several episodes like yours with my RD......And now I'm getting more aggressive in telling him ...PAY ATTENTION to what I'm telling you......I've lived in this body 41 years...NOT YOU!......He still doesn't listen......Unfortunately.....I have no where else to go as far as Rheumy's....cause I can't drive any further to get to one. :( Tho I am considering changing to an Intern. Anyone here see an Intern or other Doc for your RA??

My RD...says about the same thing as yours....I ONLY deal in RA....see your GP about other stuff....YET !!! MY very first visit.....He asked me why I hadn't had a Breast Exam in 3 years...........What was up with that????

I Lost my Mom in March this year....unexpected..and almost lost my Dad that same night....He was in the ER with Chest Pains...and I was in ICU holding my Mom's hand while she died. :( Dad is doing better....

I also lost my Grandmom in Sept :( She had Cancer...and we knew she was dieing.....but it's ALL soooooo Hard.

We are a close knit family....and haven't had any Close relation deaths in years...and to have 2 within 6 months......2 Kids.....RA....trying to keep the family together with all the deaths.....teaching my Dad to take care of finances and Himself.....

I lost it in my GP's office one day.....and just cried and cried....something I've never done in the 10 years I've had this GP......I just COULD NOT..handle it anymore........I was sinking fast and didn't know what to do. :(
She put me on Lexapro...10 mg starting out.....now I take 20 a day....it Helps.....I still have those sinking moments....but not as bad as before.

And I still find Laughter is still good....and I still try to laugh at it all ;)

Carla :) in TN too :)
--
.-.. .-..
( o )_( o )
__ / '-' '-' \ __
/ / " \ \
| \ \___/ / |
\ \`-. ____ .-' / /
- ' /\ /\ '-.
( (_// (_ _) \\_) )
frogge :)

Hi all.....

My rheumy called and definitely told me to stop taking the plaquinil.....and to restart my arava after the rash has cleared.

He always calls me a challenge.....

Paula

Hi Marcia....

Wow...one dose..... Plaquinil is supposed to be one of the lighter meds... That's amazing that that happened to you.

The rash is scary because it doesn't seem to want to go away. What a pain! They say a rash is one of the rare side effects but not from what I've been reading.

Thanks..glad you're not on it anymore. I don't know what the good doc will put me on now but I'm scared to take anything. He is talking remicade so we will see....that is a scary one for me too.

Paula

Hi Tracy and all...

Thank you for your response about the plaquinil.

I'm waiting for my rheumy to call me back about what to do now. I took plaq years and years ago with no problems at all..but seems anymore anything I take...gives me reaction of some sort. Humira did the same thing. I used to be able to take Humira and thenit turned on me.

The plaquinil really was helping me too so I'm bummed about that.

I am taking the prednisone the p/c recommended for the rash but ..the rash is still here. From my face to my ankles... hope this isn't going to be around a long time. I feel like a leper. The rash started out as pink dots and now looks like blotchy hives. Ugly! It seems to bother me more at night...the itch and all

I started taking the plaquinil in mid August... My p/c said it was Megace which she gave me to stimulate my appetite but I don't think that's what it was.

Thanks everyone for their experience with plaq.

Paula

Well....like several here......my baby days have come and gone......I'm in the High School group now...one Senior and one Freshman...:)
I would not trade them for the world.....tho the last 4 years....they might trade me ;) They have been great about helping me out since RA set in....

I don't mind you all talking about it here either....and I Pray that if you decide to have children....All goes well and you have as many babies as you want. :)
I can't say what I'd have done concerning children...had I been with RA in my 20's.......I'd think...I would go forth and have children....but I can't put myself in your shoes to know for sure what I would have done.

But I'm here Rooting for you...and Wish you the Best.

Carla :)
--
.-.. .-..
( o )_( o )
__ / '-' '-' \ __
/ / " \ \
| \ \___/ / |
\ \`-. ____ .-' / /
- ' /\ /\ '-.
( (_// (_ _) \\_) )
frogge :)

I worry about long term effects too.....I'm going into my 2nd year taking all this stuff....and looking back over my records.....I've been in and out of my GP's office over and over and over for upper Resp infections......:( and Having HUGE pimple type critters popping up all over....and man do they hurt.....cyst type things.....drives me crazy...

On the other hand.....I can walk again....not pain free....but walking hobbling....lol. :)
It's a catch 22 life eh?

Carla :)
--
.-.. .-..
( o )_( o )
__ / '-' '-' \ __
/ / " \ \
| \ \___/ / |
\ \`-. ____ .-' / /
- ' /\ /\ '-.
( (_// (_ _) \\_) )
frogge :)

Hello all. I was diagnosed with RA 12/04 at 31. The symptoms started
when my mom was diagnosed with cancer in September 2004, she passed
away a month later on her birthday, October 20. I was having a lot of
joint pain and swelling, especially in my wrists and shoulders. The
doctors would give me shots and send me home with Ibuprofen, assuming
I had hurt myself lifting Mom or it was the trauma of her passing
making me feel bad. When it got to where I could hardly hold a
toothbrush or brush my hair in early December, they tested for RA. I
was notified a week before Christmas that it was positive.
My rheumy put me on Salsalate. He couldn't put me on MTX or any of
the biologics because my fiance and I knew we wanted a child. (I have
a 5 year old from a previous marriage.) Finding out I had RA made us
want to start a family immediately so we got married in March and we
immediately got pregnant. Unfortunately we suffered a miscarriage at
6 weeks. My rheumy has since changed me to Sulfasalazine-6 a day and
Diclofenac after my symptoms started getting worse.
I appreciate the previous posts about getting pregnant. We are at a
stand still on having a baby. I want a child so badly with my husband
and my little girl prays for a brother or sister every night. After
the miscarriage, we tried so hard with no luck. My OB said that he's
not sure we can get pregnant again due to other gyne issues and that
I need some testing and most likely fertility drugs. So we stopped
trying in August.
My rheumy said that my RA is not full blown, which terrifies me. I
have already had to change so many things in my life, mostly my
independence. I have changed my career. I went back to school and got
my Master's in teaching when I was pregnant and finished when Haley
was 2. Now I can't teach anymore because I can't be on my feet that
much a day, nor do I have the energy for a classroom of young
children. So I've taken about a 50% cut in pay to work an office job
where I can sit.
I guess I'm wondering, at 32, if I can even handle having a child. I
have a wonderful husband, who I know will help me take care of a
baby. But there are many days that I just have to lie down when I get
home. I want to be able to be active and do things with a child.
After having Haley, I realize that my purpose in life is to be a mom-
and I cherish every minute of it. My husband says that he will stand
by any decision I make. That he deeply wants a child, but he wants to
do what's best for me and my health. We're both stradling the fence
on this one.
To beat it all, when I saw my Rheumy two weeks ago, he was very
sarcastic and patronizing. When I asked him about my legs swelling,
he said it was a woman thing and he couldn't do anything for me.
Seeing as how my legs have never swelled until I was diagnosed, I
don't think it's a woman thing. When I told him about my sleep
troubles, he interrupted me and said that he only deals with
Rheumatology issues, that I need to see my family doctor. Then when I
was checking out he looked at the nurse and said, maybe you two and
go to the doctor together--she isn't sleeping well either. I was
flabbergasted! Needless to say, I am looking for another Rheumy now.
I'm sorry for the long post. I don't have anyone to talk to that
truly understands the pain and loss you feel with this disease. I
feel bad for complaining as I'm not full blown like most of you! How
do you stay positive? I get sad and angry about losing my career, not
being able to be active, hurting everyday, staying sick (I had
walking pheumonia 4 times last year, not to mention other illnesses).
Should I see a therapist, get on anti-depressants? I'm just having
trouble dealing with it all, plus losing my mom, the miscarriage, and
my grandmother just passed away the night of my birthday in August.
Any thoughts or ideas would be greatly appreciated. :)
Thank you so much for listening--this board is a wonderful thing.
Gina in TN

Hi Shelly.....

My p/c told me not to take hyydrocortisone since she upped my prednisone and I rcvd a steroid shot...she said that is a topical steroid and doesn't want me to use it. Told me to use benadryl anti-itch ointment instead.

It seems to take forever to go away...worse at night..... was red dots and now red blotchy.... I'm all ready for Halloween....lol

Thanks ladies...Paula
[INLINE]

What kind of skin reactions did you get with plaquinil?

I used to be able to take it with no problem..now I think it has caused an allergic dug reaction which I've3 been having to deal with for about 4 days so far. Dr gave me something for it..prednisone,steroid shot, etc but seems to be taking forever to resolve.....itching and red. Miserable.... I used to be able tolerate these meds (dx in 1983) but now my body has had a reaction to Humira and now plaquinil....

Anyone else have bad skin reactions to plaq???

Paula

Hi all,
I've posted before but am noteably not a regular poster here, more
of a reader. Anyways, to refresh everyone, My name is Tracy, I'm 30
and have been diagnosed for about 1 and 1/2yrs now. I had been
taking Plaquenil & Mobic to control my RA until recently, I decided
that I just couldn't stand the skin reactions to my Plaquenil so
I've stopped taking it as of a week ago. Wasn't a real hard decision
as I'm hoping to conceive in December and would be needing to stop
it soon enough anways. I'm hoping that mobic & tylenol can control
me for awhile and hopefully I'll be lucky and have a remission type
pregnancy.
Ah, anyways I have a dear family friend who's 59 and has had RA for
20 something years. She's got severe RA, with full deformities on
her hands, knee problems yada yada. She's been taking MTX, Plaquenil
and a few other things for 20 something years. She doesn't take any
of the newer drugs like Humira or Remicade because her cost for it
is way too high :( Last year she found out that she has Myloma (sp)
a blood cancer that can invade the bone, which at that time was
dormant. She feels it was caused by her meds after so many years.
She was hospitalized last week for acute pneumonia, high blood
pressure, and her cancer that was dormant is now active and her
meds / ra is flaring and her body is just having a heck of a
reaction with everything I guess.
Just wondering; do you ever think it might be better to not take all
these drugs and see what happens. Does the risks ever scare you,
really scare you? I worry more in the long term since I'm only 30.
My mother who is 53 was just diagnosed this year but I feel she's
got a better prognosis than I because I will have to be on the meds
so much earlier than her.
Sometimes I just wonder, what would be worse, being crippled up and
in pain alot or risk something worse by longterm use of these drugs.
*Sighs*
I dont know

I had hip revision surgery, and now have severe sciatica. They tell me it could be bone spurs or arthritic nodules, anyone here have those? They may do surgery to remove them, once the MRI shows where they are. I hope this is a simple fix!

Contacted them concerning my grant. The maximum amount they are
giving is $1400 a year, not enough to cover the copay for Remicade but
will cover Enbrel or go quite aways toward covering Humira. I'm
trying the Enbrel first.
I do have to file more paperwork with them to get reimbursed for the
cost of the Enbrel copay but hope this doesn't take too long.
If anyone is interested in learning about these grants, they have a
website: http://www.healthwellfoundation.com/
Posie in MI

I have learned so much on this list. I will trying Enbrel for the
first time this month so took prescription to my local pharmacy. If it
works I will have to order it from MerckMedco (the provider on my
husband's insurance). I helpt so much to know what to expect.
Posie in MI

Yep. I found two groups for the baby issue:
arthimoms and arthritisandpregnancy
Neither are active, but if folks here get tired of our chatter about baby
issues, we could go
there for that particular topic. Just an idea. If any of the regulars on this
board wish we
would, feel free to speak up. I have just become active on this board lately
and would hate
to annoy anyone! Seriously.

didn't there used to be a group called "arthrimoms"?

John,

I feel really bad for your wife and you. I know her Dad isn't in pain anymore, but the hurt still goes quite deep. I'm doing ok. Just wanted to let everyone know that my hearing for disability went well, no results yet, but lawyer said it looked good. Don't give a single thought to me right now, just take care of your wife. Again, I am sorry for your loss!! ~Shelly
john stratton <kentuckycowboy2@...

shelly smiegal <shelsmieg2000@...

Well, the disability hearing went well today, no, I didn't receive an answer yet, but it did seem quite positive, so I wanted to thank those who wrote and wished me well. ~Shelly

Sorry Shell ,

I must of missed it I've missed a lot my wifes fatfer has been in the hospital out of town and shes been with him and i had to go to her this past weekend and she lost him the 2nd on her birtday :( we put him to rest thursday ( yesterday the 7th of oct. but now hes out of pain any way . sorry ive been away i'll just glance through all the mail so i may miss something inportant if so maybe youll point it back to me if you dont care ?

john

ps i hope your father is still doing ok write back soon

hi, all! my health insurance carrier has decided that I can no longer
purchase my enbrel from the corner pharmacy. I must use a mail-order
service. I can pick either of two. has anyone used (or even heard
of) CuraScript Pharmacy or Priority Healthcare? thanks all around.
gentle hugs! Marcia

I don't know about whether hot tubs and saunas would work for everyone. Like a lot of other things, I think it varies from person to person I know when one of my sisters and I took a trip to the Mall of America the hotel we stayed in had a hot tub, and when my youngest sister and I took a trip to the Cedar Point Amusement Park the hotel also had a hot tub, and both times I took advantage and believe me it was a blessing for me with all of the walking we did at both places it really came in handy. I would advise asking your doctor first and remember that they advise no more than 20 minutes. Maybe to see how you'd react to the hot tub, I'd try 5-10 minutes and build from there. I know that there are times when I'll get in a tub with water about as hot as I can stand to help me relax at night.

Good luck

Right now I am going through a phase caused by a bad drug reaction.
I developed a skin rash all over from face to upper thigh. My p/c
said it was caused by Megace (an appetite stimulant) and dropped
that. She gave me a steroid shot, 20 mg of pred 2 a day, and
zyrtec. Yesterday it seemed better but today worse. She said it
will take a few days for a change. Does it always get worse before it
gets better?
Have any of you ever been through this? It is itchy and red small
spots all over.Miserable...and looks worse. How long before it went
away?
I also called my rheumy I (who of course is off today) to check about
the arava, plaquiniland evozac i am taking to make sure one of themis
not the cause..he will call me back on Monday but I am discontinuing
till them...already took them for today though. The med asst didn't
seem to think they would cause a rash but better safe than sorry.
Any help with this would relieve me somewhat.
Thanks...!! This is a nw one to me. Seems my body likes no meds
anymore....
Paula in ohio

i want a hot tub, my husband wants a sauna. anyone want to weigh-in on which
works
best for RA????

What do ya'll think about this product? Anyone have any luck with it?

Well, the disability hearing went well today, no, I didn't receive an answer yet, but it did seem quite positive, so I wanted to thank those who wrote and wished me well. ~Shelly

"If we do not do that which God has called us to do, then we have misused the specific gifts God has given and the work will be left undone".

I went to the doctors yesterday and he said he would be replaceing my
knee in about 3 to 6 months as he is still waiting for the last
surgery to heal then he will be replaceing it I am not to sure if I am
ready for that as I am a little scared to have it done i know it will
be better than what I have now
Sherrie

I know this is a touchy issue with RA, but what about NATURAL remedies? Anyone
have
any luck with anything NOT manmade/synthetic?

Hello all!

I am new to this group, although not new to RA. I am currently taking part in a study to approve a drug through the FDA. I am in the phase 2 of the study to approve Rituximab (Rituxan), and have seen phenomenal results, sustained over an impressive 11 months. Prior to participating in this study, I was in the process of applying for disability. I was (like lots of us with RA) in a great deal of pain constantly, with "severe morning stiffness" that never went away. All my major joints were very swollen, hot to the touch and extremely painful. All other drugs had failed me.

If anyone is interested in more details about my participation in this study, I would be more than happy to share my experiences.

I do have a question. I have weight to lose. I have lost approximately 85 pounds using the Atkins diet. While boring, it is an effective method for me to lose weight on. However, my research physician once mentioned in passing that people who have RA should probably stay away from the Atkins diet. I did not have a chance to follow up with her as to why she felt that way. Does anyone have any ideas about this? Any information would be greatly appreciated!

Sonia

I go int to the doctors office to day to see what they plan on doing
to my knee as it hasn't got any better will let you all know how it
turns out wish me luck as I hope to get a new knee soon as the one I
have is bone on bone and I can't hardly walk now
Sherrie

I'm scheduled for an MRI on my right hand Thursday. I have one
problem. I can't get my wedding ring off my left hand. Is this going
to cause a problem? You aren't supposed to have any metal for an MRI.
I really don't want to have to have it cut off. (It has been there 42
years!)
Sharon

There has been much discussion recently about the biologic RA drugs
and their tendency to cause increased infections (Respiratory, Sinus
etc). I am on Abatacept (drug being studied for RA) and I had my
second infusion on Tuesday. I went to the Dr. today because I am
sick, and they said that I have a respiratory infection. I had been
on Enbrel for over 2 years with no problems. Teh Dr. started me on
an antibiotic.
My father said I should take echinacea to help me get better. My
question is this. If we take drugs that intentionally supress our
immune system, because that is what is needed to treat our RA, is
there any point in taking echinacea which is supposed to help boost
out immune system?
It seems like a silly question, but which is stronger? The drug to
boost the immune system or the one intentionally supressing it? If
I take echinacea, will it lessen the effects of the biologic drug?
Anyone have any ideas or thoughts on this?
Thanks,
Miriam

Hello,

Just wondered if anyone out there has had their hearing with the Social Security office. I have my hearing on Thursday and would sure love to hear from any of you that has already gone through this, as to what to expect,etc. Please write very soon. Thanks!! ~Shelly

"If we do not do that which God has called us to do, then we have misused the specific gifts God has given and the work will be left undone".

I have had three hip surgeries, both hip replaced, and so far, one revision. Around the time of the left hip revision, I started getting constant, severe sciatica. I feel it could be due to the joint surgeries. I've had multiple MRI's, and a CAT scan, finally after going to Mayo Clinic, they feel they saw something on the MRI and will discuss it and call me this week. They say it might be a nodule or bone spur caused by the JRA. Anyone else been through anything like this? The pain is totally controlling my life, and I take so many medications now would kill a horse!

Hi All,
I have definitely noticed an increase in Sinus problems and infections since I
have been on Enbrel or Humira. My Primary doc thinks its allergy related but I
think I am now prone to them. What is everyone else's experience?
Elizabeth

Here is what I do for sinus problems. I make home made saline solution and use a nettie pot and irrigate them. I know it sounds gross...but it works wonders. I have not had a sinus infection in almost 7 yrs. My old family doc suggested it to help reduce the swelling and get the trapped mucous out. I was amazed when I saw all the nasty stuff trapped up in my sinus.

Here is a site and some instructions. This is something that everyone can try and will not harm you. But still consult your doc before trying if in doubt.

How to Do a Sinus Irrigation

How to Do a Sinus Irrigation

Your Guide, Cathy Wong, N.D. From Cathy Wong, N.D.,
Your Guide to Alternative Medicine.
FREE Newsletter. Sign Up Now!

Learn this home remedy to help relieve sinus congestion

Sinus irrigation, also known as a sinus wash or lavage, is a simple procedure that can help to increase drainage of the sinuses. For people with seasonal allergies, sinus irrigation can help to remove pollens from the nose. Sinus irrigation has been recommended by physicians for decades, and its use dates further back in traditional Eastern practices.
There is some debate over the type of fluid that should be used for the irrigation:
* Isotonic saline solution - has a similar salt concentration as body fluids.
* Hypertonic saline solution - because of the higher salt concentration, a hypertonic solution is thought to be better at reducing swelling of the mucous membranes. Although some research shows that hypertonic solutions are more effective than isotonic solutions, other studies show that hypertonic solutions decrease sinus drainage and movement of the cilia, which are cells that "sweep" the sinuses and push particles out.
* Locke-Ringer, Gleichenberger, and Ems salt solutions - from the few research studies conducted, these solutions do not appear to decrease ciliary movement, making them preferable to hypertonic saline solutions.

Ingredients for an Isotonic Saline Solution
* 1 teaspoon of salt (kosher, canning, pickling, or sea salt is preferable to table salt.
* 16 oz. of room temperature water (0.47 liter or 1 US pint)
* 1 teaspoon of baking soda

Instructions
1. Mix the ingredients together in a clean container with a tight cover. This recipe can be halved and used for seven days. Do not store for longer than seven days.
2. A clean rubber-topped dropper can be used. If unavailable, an ear syringe or any dropper from a pharmacy, neti pot (a "tea pot" for the nose), or a clean hand can be used. I used a clean dropper top from an empty herbal tincture bottle.
3. Place some solution in the upper nostril. Plug that nostril and tilt the head slightly back and to the opposite side so the fluid runs out the other nostril. Place some more fluid in the upper nostril, then tilt the head slightly backward and to the same side to reach the sinuses. Repeat this procedure with the other nostril. Wash the dropper with hot water before dipping it back into the solution container to prevent contamination.
4. Gargle with some solution, letting it wash the back of your throat.
5. Blow your nose gently.
This procedure can be done once a day for mild symptoms of chronic sinusitis or for prevention during allergy season.
Precautions and Risks
Over-irrigation can compromise the ability of the sinuses to fight bacteria.
People with acute sinusitis should avoid this procedure, since it can facilitate the spread of bacteria and cause more serious infection. People with deficient immune systems should always consult a health practitioner before trying this procedure.

Hi, Just curious of everyone's opinion on becoming pregnant now that
I have been diagnosed with RA.
I was diagnosed in June 04, and had planned to get pregnant last
winter but decided not to until I could figure out my condition a
little more...it's almost a year later and I think I've decided that
yes, I'd like to have one more child, I currently have 2 (8 & 5).
Also, I'm now 30 and feel that I really don't want to wait much
longer as my two are getting older, and I plan to be somewhat
disabled *smile* later in life and don't need to be someone getting
pregnant much older than I already am.
I know I've heard that in most cases the RA actually improves during
pregnancy but usually kicks you in the rear immediately after
delivery. That worries me a little. Any experience?
Also, I'd need to stop my meds soon, I'd like to concieve in
Decemeber and am actually having skin problems from my plaquenil
again so I'm considering stopping my meds now. What do you think?
I am only currently taking plaquenil daily (which I dropped down to
once a day instead of twice and am doing ok) & mobic as needed. I
occassionally have to call in for a steroid pack on occassion too.
Thoughts, suggestions???

Hello, I'm a new member and I was wondering if there are any other members who have been through the social security disability process and what was their experience. I'm thinking about applying and could use some tips on how to make the process go smoothly. Thank you, Don

I have been taking prednisone for over a week now with the
methotrexate and my anxiety and agitation are getting quite bad. I am
bipolar and am afraid this will send me into a mania or hypomania. I
am getting very weird vivid dreams that are actually more like
nightmares. I saw my psychiatrist yesterday and he increased my
seroquel to 400mg per day divided in 4 doses. I did fine before the
prednisone but after a couple of days I was getting agitated and
having a difficult time falling asleep. My jaws hurt and so do my eyes
as it feels as though that eye am blinking too much and by the end of
the night they just ache.
I am taking 7.5 mg of prednisone and it worked when I first started
taking it but I am not feeling the benefits as much as I did when I
first started. I am afraid if they increase it, I will end up in a
psych ward. Is there anything else fast acting that you can take with
methotrexate that does not have the psychiatric side effects? I feel
so frustrated with this all.
Janice

Hi all,
Just saw my RA Dr today and of course there is still no diagnosis.
Did some x-rays, been 2 years so that should tell us something when
she compares them.
Have been having trouble sleeping with the joint pain so she Rx's
Flexaril/cyclobenaprine to take at night.
Anyone use this? Results?
Thanks,
Dawn

Finally heard back from the foundation on my grant request. They said
I was approved for $1400 for one year towards my Remicade treatments.
Each dose will cost me $600 so this just gets me started on the
treatment. Will discuss with my doctor next appointment but can't see
starting a treatment that we cannot afford to continue.
Posie in MI

hey, John, kentuckycowboy. be sure to read the article about exposure to motor and hydraulic oils - not sure what you job was, but when I read it, I thought of you. gentle hugs, Marcia
Note: forwarded message attached.

Hello, everyone. I'm sorry it's been a few days since I've been
here. I've been kind of busy, plus my right hand is really bothering
me, I just don't want to get on the computer, but I also don't want to
leave it alone. I know someway, somehow I want to get a voice
activated device, but it takes money I simply don't have and even if I
don't have my priorities right I'm wanting to do my Christmas shopping
now and set that aside after. It'll probably take me a few months to
come up with the money.

Just because you went to college does not mean you do not qualify for disability. There are TWO DIFFERENT Social Security programs..many keep trying to make them into one.

The first one is SSDI-social security disability...this is the one were if you have worked a minimum of so many quarters you qualify for money as well as medicare.

The second program is SSI- supplimental security income...this is given to anyone that applies and qualifies. In most states it comes with medicaid. This program is based on total family income and is purely income driven. This was designed as a catch net for those that did not work but were disabled. It also pays the lessor amount of benefits.

I know for a fact that my now 18 yo daughter has been in SSI off and on since birth due to genetic problem that has left her disabled. She has NEVER worked. In order for her to qualify our family income has to fit within certain guidelines and she has to have a qualifying diagnosis.

Please get your facts before you deny yourself a program that may help you. Now keep in mind the process for certain diagnosises can take years to get approval. You may require a lawyer for approval after the first denial. It is not uncommon to get denied the first them. Do not give up.

Please check out www.ssa.gov for more info

Toni in Texas

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I wanted to let all of you know about a really neat browser that does not have all of the problems that Internet Explorer has. It is true that some web sites only work well with Internet Explorer but I have only had three instances of that happening to me. It has many different plug ins and you can add Google's search bar to it and all different kinds of Google things.
There are many different things that you can add and one thing that I really love is called Stumble. It is an engine I think that it is what it is called and it is just like the name says it Stumble's upon some of the neatest web sites that I have ever seen. I am sending these two different links, one goes to the download site for the browser that is called Firefox and you can read about it there and see all the different thousands of things that you can get, such as popup blockers, spyware removers etc. Just check it out and read about it all. It is all totally free just like Internet Explorer is. The other link will take you to one of those sites that I used Stumble on. It is horses and you will need to click on each horse separately to see what they do. I thought it was very cute and I hope that you enjoy it also.
http://svt.se/hogafflahage/hogafflaHage_site/Kor/hestekor.swf
This one is of the horses.

http://www.mozilla.org/products/firefox/ This is the link to learn about Firefox. It will tell you everything and from there you can go to the next links and read about the plugins and extentions. I think that you will find it a very good browser and as I said it doesn't have the problems like Internet Explorer has.

I hope that you all are ok and I plan on writing to each one of you individually very soon.
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I do not have Sjogrens Syndrome but I do experience dry mouth from
medications. I have found that water does not really work but Gatorade helps
a lot!
Elizabeth

Hi there...
I was just diagnosed with Sjogrens Syndrome. My dr first told me to
drink lots of water and chew on sugar free candy. But that didn't
really help me much.
He has now prescribed evozac for me to take 3x a day. It seems to
work for me. The other med is salagen.
Hope this helps you.
Hugs..Paula

I also have Sjogrens Syndrome and was wondering if any others had it,
and how you are being treated for it?
Kenajean

I was just hanging out for a bit outside in the sun with my
co-workers. I looked down at my hands and my finger was
swelling out of my wedding rings. My hands got all red and
swollen and now all of my fingers hurt!
Does anyone find this with the sun? I know it is important to stay
out of the sun but I have read that you should get 15 minutes of
sun exposure a day, with some AI disorder people needing even
more. I know those with Lupus can't go out in the sun at all.
Elizabeth

Hello, my name is Mike and I have been diagnosied with RA in the last
few months. The question I have right now is that I have more tissue
pain than joint pain. They have just put me on plaquenil and I take
prednisone also. I am tired all the time, I don't sleep well and
generally feel unwell. I am 48 and am not ready to quite working yet,
if any of you could give me some insight it would be great.
Thanks,
Mike

HI, I HAVE MS AND POSSIBLE RA. MY BLOOD TEST CAME BACK WITH THE NUMER
48.4. OF COURSE I DO NOT KNOW WHAT THAT MEANS. I HAVE BEEN REFERRED TO
A RHEUMATAGIST. CAN SOME ONE EXPLAIN THIS NUMBER TO ME. DNH43

Hi all,
I am wondering if anyone has been successful in getting Medicare to
cover Enbrel. I just started Medicare but was told that they won't pay
for Enbrel. My rheumy told me that they will in certain circumstances.
Does anyone know about this. Feel free to email me privately. I don't
understand the part D or the prescription benefit and how that will
affect the Enbrel cost. Help!! Thank. Janet

I saw my doc and he put me om MTX and folic acid and prednisone. I
have only had RA for 10 months and this seems a bit soon for this
treatment but NSAIDS were not working. I took my first dose yesterday
and did not feel sick but today I am very tired and am sleeping a lot.
Is this normal? I am not feeling super hungry yet from the prednisone
so I am happy. It will be hard on my joints if I pack onanother 10
pounds. I have been reading a lot lately about RA and especially the
grieving process and I think I am somewhere between denial and
acceptance. When I have a good day I try to convince myself I do not
have this but the next day reality sets in and I know what I have is
true. I am just not ready to accept this life long jaunt with it,yet.
Is this unusual? How long does it take to sink in. I have bipolar
disorder and am afraid this will take me into depression.
JAnice

Hi All,
I went to see the Maternal Fetal medicine specialist today and
was surprised to learn that she thought remaining on Humira
and Asacol for my Ulcerative Colitis would be best for me. She
said that flares of these diseases would be harmful to me and
the baby and the practice has seen many successful births in
women with RA.
Whether or not I will stop Humira if I become pregnant is still a
choice I must make, but I was relieved to know she thought I
could be on it while trying.
I would like to hear from others in similar situations.
We plan to try soon and I ask for everyone's prayers and good
wishes.
Love,
Elizabeth

I don't know if anyone has mentioned this before, but I was wondering
how many have tried water aerboics and does it really help? I know
I'm interested in them and I'm thinking very seriously about asking my
rheumatologist about them. I'd like to know if he'd recommend them,
but I'd also like to get some feedback from patients who've tried them
and what kind of results are you getting?

I notice if I have to go a few days without my prescriptions I really
notice it. That's one of the withdrawls of being on long term
disability. Because I moved back in with my parents my rent isn't
very high and I make too much money to qualify for Medicaid. Luckily
for me I've found some insurance that's comparable to Medicaid where I
can get my prescriptions for a very good price. But I'm also on so
many prescriptions that between my prescriptions and therapy (I'm
going to therapy for depression) I don't ever really seem to have any
spending money. I don't really know what I'm trying to say except I'm
out of my meds and I'm glad I get my check this week.
Susie

Just because you went to college does not mean you do not qualify for disability. There are TWO DIFFERENT Social Security programs..many keep trying to make them into one.

The first one is SSDI-social security disability...this is the one were if you have worked a minimum of so many quarters you qualify for money as well as medicare.

The second program is SSI- supplimental security income...this is given to anyone that applies and qualifies. In most states it comes with medicaid. This program is based on total family income and is purely income driven. This was designed as a catch net for those that did not work but were disabled. It also pays the lessor amount of benefits.

I know for a fat that my now 18 yo daughter has been in SSI off and on for many years due to genetic problem that has left her disabled. She has NEVER worked. In order for her to qualify out family income has to fit within certain guidelines.

Please check out www.ssa.gov for more info

Toni in Texas

Hi all,
I'm just wondering if anyone has tried Provigil for RA fatigue. I am
recently off of Enbrel due to financial reasons and no insurence
coverage. A friend said I should check into Frovigil since it is also
recommended for fatigue from RA. I am nervous about stimulants but hear
it is not a stimulant. Anyone have any success with it? Thanks. Janet

Hi,
My insurance company denied my script for Humira because I have not tried Enbrel yet. Can someone tell me if Enbrel causes pain during injection like Humira? Also any side effects you have experienced.

If Enbrel doesn't start to work after 3 months, my dr can call it a failure and I can get Humira.

Is Humira really that much better than Enbrel?

Thanks for any advice.
Vicki

[LINK]

--- USFamily.Net - $8.25/mo! -- Highspeed - $19.99/mo! ---

Hello everyone. Just signed up today and wanted to say hello. Just a
bit about myself. I was diagnosed with RA 2 years ago. I was only 27
years old. I am steadily getting worse, even though I am on Humira.
Due to the fact that I went to college instead of the working world,
SSI Disability is not an option for me. I am looking for people who
understand what I am going through, and don't give me a lecture about
how everyone has arthritis, and its no big deal!

Shelly My doctor started my prossces to get me started on my
disability she did all the paper work then ss called me and set up an
appointment with one af there doctors and he did all the stuff he
needed of the ss department then I was turned down and I sent back my
papers and I was aproved I didn't have to go tp a hearing or anything
I guess I just had a good doctor I did have to quit working for almost
a year but it was wort it ams now I have medicare and that it helps a
lot good luck at the hearing next month I wish you the best
Kove Sherrie

I'm sorry I forgot. Not everyone has heard of Steak'nShake. They are
a restraunt chain (maybe mostly in the midwest, I don't know) Anyhow,
they are a step and half above Burger King (I hope you all are
familiar with Burger King - if not then McDonalds (4 steps above) To
refer to their burgers as burgers is an insult. They serve what they
call steakburgers. Instead of placing your order at a menu board, a
hostess seats you (like Denny's or Frishes Big Boys or Ihop) and hands
you a menu. They also have the very best hand dipped shakes. Hence
the name Steak'nShake. They cost a little more than your average fast
food chain, but boy are they yummy. Come to Indianapolis sometime and
have some.

Does anyone out there in this group receive disability for their RA? I have to go for a disability hearing and would like any input you may have as to what I may be in for. For some reason, I am really nervous about it. Thanks~Shelly shelsmieg2000@...

I am in really bad shap I just need to vent a litle no one really
understands why I don't want to do much here I don't have any one who
understands what I am going though my husband get tired of hearing
about it so I try to keep it all in side he know what pain I am in and
does a lot to help but some times you just need some one to talk to I
got my remicade yesterday and a kelalog shot to and I am still in some
pain and my joints akes they just don't understand just what we go
through really all though they can compain about there pain but we
can't because they think you are just being a pain in the but and they
just don't listen I am just tired af hurting so much I have an avenced
form of RA and OA and now I have skin cancer I do not need kemo though
it is the other kind I guess I got lucky there I guess I will go for
now I sorry but I just had to vent a little
Sharrie

Hi everyone,

Not sure if this subject has been brought up on this list, but does anyone here find that

certain foods make your RA worse?