Does anyone know if you can nurse (breastfeed) if you are taking
Methotrexate? It seems I remember someone on this list who has RA and
was able to nurse taking meds. Though, I have a memory of this person
maybe changing meds to something that wouldn't harm the baby.
Jean
Hi to all,
I am the newest member of this group. My name is Melissa, and I live in West Virginia. I am a Critical Care Nurse. I was just diagnosed w/ RA in January. To be honest, I haven't dealt w/ RA since nursing school several years ago. True, I have seen a few patients that have had it, but we have a high turnover in the ICU so I didn't get familiar with their situations. My rheumatologist started me on prednisone, ibuprofen, Tylenol #3's and methotrexate. The prednisone and ibuprofen have gotten my pain under control, now I only have to take a #3 once in a while for my hands. I forgot to mention that I have the most pain in both my hands, my feet, knees and both shoulders. Hands are definitely the worse. I am starting to get nodule already. I have a problem w/ the methotrexate, though. I also have very bad asthma and get bronchitis frequently. Well, 2 days after taking my first dose of methotrexate my temp shot up to 102, and was admitted for bronchitis. Since then
the RA nurse told me not to take it u ntil I see the doc again. What do you guys think about this? I am certainly worried about my immune status w/ my asthma and the MD said methotrexate was the safest for me. Sorry about the rambling. I hope everyone is doing well.
Melissa in WV
I started taking plaquenil yesterday and ever since then I have been totally exhausted. Does anyone know if this is a side effect of the med? Have any of you experienced it? I'm not sure if it's the med or the RA or what.
Thanks,
Darlene Ashcraft, 50, RA
Hi everyone....
My name is Darlene and I'm 50 yrs old and newly diagnosed with RA. In fact it was just yesterday. I've had fibro for years and I have suspected RA for the past 2 years but it wasn't recognized until I switched to an internal med doc and she sent me to a rheumy.
I have some liver damage so she started me on Plaquenil and fish oil capsules. I'm hoping it will help. I go back to see her in 6 wks. She also did some more lab work.
Thanks for letting me join. I look forward to the friendship and support.
Hugs,
Darlene
dear group,
i have bad rheumatoid arthritis.
i take klonpin 1 mg 4 pills at night.
i take for depression my nevers and my arthtitis.
i been off it for few days and my body have hurt alot puls i had 3
sizusers in my self at time wake me up i jumpi have pankatcks sometimes
at night.
i had sizusers in my sleep if i not on the meds puls my eating gose down
and i get depressed and nevers,,,wensday night i thought i would have a
sizeruser in church i shoke alot pastor's bother his name john came
over to me and ask me angela whats going on we know when you dont get or
when you shake your nevers are bad i was off my meds for few days could
not sleep wake up like lighting hit me i jump i feel my bodu hurts but
called the doctor today he was not to happpy i not called sooner but got
me back on 4 pills at night and it supost to help relax my body and mind
so no sizeusers take place i know i can count i had 3 in my sleep couse
i had headacks after it.
i happy a christian friend gave me 1.oo for my meds and i am back on it
to night the doctor say i will feel little relax but not fulling uitl
its in me for 2 days by satruday or sunday i should be feeling better.
my RA Doctor say i cant be stress it can couse siuzers and nevers bad so
i try to do my relax tharoy my pt gave me i going to do it agian
tonight.
i hear nice muise and sometimes a chirstian pastor teaching i fall into
relaxing time my pt tells me i should do that more to reless stress i
may have to go back into pt for relaxing thapry musle mushes and its
hard in my shoukders my pt pull down on my shoukder for me to try not to
let him pull down.
he pin points my stress and rodes my nick and with a relaxing cream and
sometime use heat and sometime ultersound heat and munshes my back and
shoukders and nick i know my doctor may want to send me back to my pt
but my pt and i talk in email and he writes me tells me what to do he
thinks sometimes warm shower would help,
i also take perdsion one pill in the day and mathtake every sunday every
8 weeks i in for reminced treament for 200mg...i see my doctor in june
so i do keep in touch with my doctor take my blood work every month in
my town i live in and when i go to the clinit for treatment or see my
doctor,,,'
i take tyenol arthtitis pian 2 pills at night and 2 in the morning 650
mg for one pill but i take to.
i have to take benadryl for alngerys i be on then for nect few
weeks,,,,i take my vetiom at day time to help me not to be sick from my
mathtake cemo pills 8 at sunday night....it helps just dain.
the meds help the klonpine keeps me going helps depression stress,
packackts and nevers and relax me i took it tonight the doctor say it
may take a day or 2 for it to get back into helping me sleep but now its
hard with stress and sizuers and packats.
have any one been having trold sleeping with depression and eating not
much and so much going on...i hear for my RA Doctor stress and
depression makes things bad so he put me on the pills 4 pills at bed
time i just got back on it intime my moods been not good,,,,i dont like
rheumatoid_arthritis it just gets to me with my depression but the
doctor say it gose with it and nevers to so he put me back on my meds..
i have to keep a sleep chart,,,i dont how.
but my rheumatoid_arthritis doctors wants to know things,,,,i hope you
all can help me to.
angela from ky
Hi Angela,
I hope you can continue your seizure meds! Seizures
can be very dangerous, most people with epilepsy don't know
that. I almost died from 2 that I had
a year and a half ago.
I don't mean to be a pest but plz do whatever you
can to stay on the meds :)
Take care,
Kelly'
I am getting
Sorry you're in such pain :( Physical therapy, maybe? My back was
(and still is) so tight from RA and OA and a herniated disk that
it was painful to walk and sit and stand, etc. PT has helped and I'm
hopeful that the more they work on the tight muscles, the better it will
get. I hope you can get some relief...
Kelly
normal but been ill and think i've had it since 99
Same with me. My husband said, "You've been sick ever since I've known
you," (11 yrs) and just the other day, a friend of mine that I've known
for about 12 years said the same thing. Fatigue was always a large part
of it, along with infections and OA and general pain. The finger pain
happened very quickly, but I think this has been going on for a decade
or more and I bet that's the case for a lot of people...
Kelly
Well this goes back to everyone reacts differently to meds.....I've been on Enbrel for about 1.5 years now......and for a little bit it seemed to help.....now nothing seems to be helping me......And....I've been on 5 rounds of Antibiotics since January :( AND still have an infection. The doc is Finally concerned about these infections.....but hasn't decided what to do......so out of 12 weeks of injections....I missed 6 weeks this last go round. I wasn't sick for 3 years before I got RA.....now I seem to stay that way...and in the last 4 months...it's gotten worse. Is it the Enbrel? or the MTX? who knows.....but somethings not agreeing with me......I'm stopping the Sulfa something drug for a bit to see what happens....cause one of them is also causing me severe abdominal/intestinal pain. ......
Oh the Joys of RA eh? ;) lol. Enbrel is like anything else tho...you don't know..til u try it.
Good Luck !!
Carla :)
Subject: [rheumatoid_arthritis] Enbrel
I'm thinking of asking my rheumy about Enbrel when I see her next week.
I think I need something more than the MTX I've been taking. I'm
nervous about infections, though. I've had one cold in 2 years, haven't
missed a day of work. But my hands and feet hurt and I'm SO tired again.
My last X-rays revealed an erosion despite being on MTX. Thoughts about
biologic safety? Your own experiences with infection?
Sierra
--
.-.. .-..
( o )_( o )
__ / '-' '-' \ __
/ / " \ \
| \ \___/ / |
\ \`-. ____ .-' / /
- ' /\ /\ '-.
( (_// (_ _) \\_) )
frogge :)
My name is Diana and I live in Colorado. I have had RA for 5 years
now and I am currently on MTX, Celebrex, prednisone and most recently
added Humira.
However, every treatment option that my rheumy recommends is met
with obstacles from Pacificare. They hold up treatment due to "pre-
authorizations" and charge me outrageous amounts for my co-pays. I
pay them about $600.00 a month for healthcare insurance, yet they
make me pay nearly that much a month in co-pays for my meds and make
me jump through hoops before-hand. I am only able to work part-time
now, yet it's not enough to pay for my meds any more. Is this normal?
They do NOT seem to want to help me get better by letting me having
more aggressive treatments as prescribed. I am in constant pain from
the RA, as well as from Pacificare. Do I have any other options?
Does everyone experience this?
Any ideas would be appreciated!
Thanks,
Diana
Thanks Deborah! Now I understand why I sometimes have had pain &
stiffness in the "wrong" places! I really appreciate having this
group. I live in Winnipeg, Manitoba (Canada) and we have only 4
rheumatologists to service our entire area. Needless to say, our
rheumys are very busy and don't take alot of time to talk or explain
anything. They really don't have any time for all of us (and you can't
switch if you aren't happy - I tried)and so all information comes from
our own research. This is truly the best RA resource I have found!
Hi Lottie,
This is Steph in VA. When I began Remicade in 2000, it was the strongest biologic available. In recent months Rituxan & Orencia have been approved by the FDA. In my last visit, my rheumy said that if Remicade stopped working he would suggest one of those.
Take care,
Steph in VA
Hi,
I've been on Enbrel for 3 years and have had no serious infections. I
have had to stop the injections a handful of times when I've gotten
colds or upper respiratory bugs but they were no worse than w/o Enbrel
and the drug worked really well for me until just the last few months.
Coicidentally, I'm heading to the rheumy this afternoon and plan to
finally take him up on his offer of remicade. I think it's time.
Enbrel brought me to about 90% of normal, he thinks Remicade will be
the final answer. My concern is after the remicade stops working,
what's next? He indicates Humira is about as effect as Enbrel & that
Remicade is most powerful.
lottie
Hi Deborah - I hope this question isn't too dumb but what is muscle
guarding?
Barb
I should add that my RA doesn't LOOK bad--no redness or swelling, so it
may be possible that I'm undertreated because of that. The erosion
happened in a joint that was never red or swollen...
Sierra
I'm thinking of asking my rheumy about Enbrel when I see her next week.
I think I need something more than the MTX I've been taking. I'm
nervous about infections, though. I've had one cold in 2 years, haven't
missed a day of work. But my hands and feet hurt and I'm SO tired again.
My last X-rays revealed an erosion despite being on MTX. Thoughts about
biologic safety? Your own experiences with infection?
Sierra
Hi Kathy. I'm sorry you're having a rough time right now. One thing I
have found is that any new medication takes awhile to work enough to
notice any benefits. Fatigue is part of this disease and you will
learn how to adjust your life accordingly. Once you have the pain
managed better, you will find yourself in better shape and less tired.
I agree with Angela that you need a Rheumatologist. I have had a
problem with weight gain but I'm sure it's from my lack of activity
over the last few months. My Rheumatologist gave me shots of cortizone
to help with pain management until the drugs kicked in - it really
helped me feel better. I also use heat for instant relief and have
learned to not overdo it in anything - the more tired or worn out I
am, the more pain I feel. If you can keep on working, please try. It
helps to have something to focus on other than the pain. But if you
can't work, then hopefully you will find the support and encouragement
you need from this list. Good luck.
Barb
Hi I have been diaganoised with RA in Feb.....The Dr. put me on the
Methotrexate I took 6 doses and saw the Dr. again and he increased it.
Saturday I took the 7th dose...Why am I still in pain and so tired?
Has anyone else had a problem with weight gain? The Dr. also put me on
Lexapro for the depression...I tried to take Percocet for pain but
couldn't handle that, now I am on Vicoden...My body feels like it is
in a vice and it keeps getting tighter and tighter....I am getting
where I can't work any more and just want to sleep....any advice?
Kathy
I've had lots of people tell me that for pain relief to use ice but it
doesn't work for me near as well as heat. I figured that the only time
I was truly pain free was when soaking in a hot tub, so I started
using a heating pad at night (kept on low) and it really helped with
the pain!
responding to 2 subjects in the digest.....
regarding onions - I'm a little confused by John's email....
"Onions and their relatives are known botanically as alliums, a plant genus that has been classified at different times as belonging to the lily family, the amaryllis family, or to a family all its own called Alliaceae. "
He said that the article put them in the nightshade family - that's actually the tomatoes, peppers and eggplant type plants.
I've heard that both onions and the nightshades are not good - the onions/garlic are too caustic or acidic? And I don't quite remember why they nightshades. John - could you recheck the article and see whether it's talking about the onions or the nightshade family. I'm wanting to try and alter my diet to lose weight but also improve my RA. So any info is greatly appreciated. I should subscribe to arthritis today - just keep putting it off.
Regarding the jaw flares - I've been having trouble with my jaw too, especially the right side. Was told that I might develope TMJ when I got older if I didn't get braces when i was younger. I think that the RA just accelerated that. Did a little research and found out that tmj can cause ear, nose, sinus, and throat infections - something I was having trouble with. Well, it mentioned some exercises but i couldn't find anything specific. But what I started to do was to drop my jaw open and then shift it to the left (right side was the trouble side). Well it must have worked - I don't get the ear pain and fluid buildup that I was getting and throat has been better. (Was getting shooting pains through my ear). Still have flares but they don't seem as intense. Before I started this 'movement' - at times I couldn't open or close my mouth. Now it's alot milder. When I feel it start up again - I start doing the drop and shift of my jaw. I tend to clamp my jaw when stressed - this
has been helping. Hope it helps you.
Helen P.
NW ohio
Hi! I just wanted to let you know that I also had negative bloodwork
for a number of years. I was also tested for carpal tunnel syndrome
and had corrective knee surgery still without anyone recognizing what
was happening. Finally got diagnosed and began receiving treatment.
Treatments vary - some work for one but not another so your rheumy
will help you find the right drug. Methotrexate and Naproxen works
well for me now. I also understand your reluctance to accept the drug
use for the rest of your life (I went through that also) but your
opinion changes when your body demands relief. Drugs are far easier
than the fatigue, pain and joint damage of untreated RA. The people on
this list are very knowledgable and supportive and you'll find great
relief reading the posts and knowing that others have gone through the
same problems as you are experiencing. Good luck and God bless.
Barb
Hi all about 1 1/2 years ago I finally cried to my dr. about how
much joint pain I was having I dont' think she actually believed me
but sent me to a rheumy who took tons of tests. The RA test came
back negative the other bloodwork was ok too. He said there was
something showing an auto immune problem possibly in my blood and he
was pretty sure it was the start of RA just not showing up yet.
Gave me celebrex nothing then vioxx this was around the time it was
all being recalled and
questioned. Then just daypro for when I was hurting. I went for
several appointments but didn't think that this was something I
wanted to do was take medicine the rest of my life. We really
didn't sit and talk about the disesse much itself he was just trying
me on somethings. So I went last April and didn't go back. I had
just come to the realization I will always hurt. Some times are
much worse than others. I've since learned about flare ups. I made
an apt. and go back next month. I called ahead and just got
bloodwork done 11 different tests so they'll be there when I go for
my apt. I've had terrible joint pain, fatigue (all the time like
a mack truck ran over me) I have it especially in my hands, elbows,
knees, feet but feel tender and achy all over. I had carpel tunnel
test done because my fingers were bad but it came back ok, do have
wrists splints to wear at night. I guess my question is it normal
that it won't show up in the blood work right away? I've gained
weight because I just don't have the energy to work out although I
know its supposed to help. Did anyone else start out with no signs
in bloodwork? Thanks sorry its so long.
I went to a health food store last week and bought a bottle of-
Norwegian Cod Liver Oil. I've been taking a tablespoon in the morning
and a tablespoon at night(it's not real oily and has a lemon flavoring
added). After only 1 week, I have noticed a difference in my joints in
that they are moving better and my pain HAS decreased.
Anyone else taking liquid fish oil? Any good results?
Anyone have side effects involving your Gallbladder from MTX? I
changed Rheumy's and the new one thinks that the MTX may have caused
gallbladder problems. My liver panel has been up for the last 2 labs
and he said the gallbladder can do that. I don't know but I had an
ultrasound today and should have the results by Wed.
Love the new Rheumy. He is an Internal Med. with a specialty in Rheum.
Saw him last Thurs. and was having a bad flare. He gave me a Medrol
Dose pack and I lost 11 pounds of fluid in 4 days. Asked if I needed
pain meds and told me to call anytime if I had a flare and he would
send me Medrol. He said the Arava would not fully kick in for 3 months
and that I might have more frequent flares until then.
Stacey
I was reading in Arthritis Today that Onions ( yes of the night shades ) are good for arthritis by helping the pain and inflamation in the joints . It said the diease fighting chemicals are stronger in yellow , red , shallots , and less in white and sweet varities according to Rui Hai Liu , MD , PHD
john
Just thought I'd pass along something helpful I just discovered--GEL
PENS are more arthritis-friendly than ballpoint pens. Very little
pressure is needed to get the ink to flow. My hand is happier and my
handwriting has improved since I made this discovery. Thought I'd pass
it along.
Sierra
Melanie.....
I have to have my coffee...but I take Darvocet with it. Weird but it doesn't make me feel hyper. I think it is because I'm so used to it. Darvocet does make me feel like I have more energy once it kicks in. I know a few people who can't take it because 1) it makes them sleepy or 2) makes them feel hyper. LOL
I'm a coffee drinker also.... have to have it first thing.
Have a good week...
Paula
" He then replaced the femoral head and stem. It is doing
ok
hi,Sandy! I have had both my hips replaced (2004 and 2005) but not for the same reason as you; my just wore out. and now I have the thigh and lower back pain... had a MRI in March and have sciatica...going to PT now for the past 4 weeks...I feel good after the therapy, but wake up with the same old pain/problem...now will be going to the Pain Clinic to beg for something other than the tramadol(ultram) that I currently use ...gentle hugs! Marcia
Hi! It's been a long time since I posted..but I've been through a
rough time. My hip spontaneously snapped about 18 mo. ago. The
orthopedic surgeon chose to pin it since I was under 50- still am
for 4 more months!) 9 months later, after continued pain and
inability to walk, I had a CT scan which showed that it did not
heal. He then replaced the femoral head and stem. It is doing ok
now, but I'm having pain in my thigh and lower back from it. My
bone density study is normal, despite the prednisone I've been on.
Most information I have found seems to indicate the risk would be
from osteoporosis induced by Prednisone. So I am wondering, has
anyone has heard if there is any relationship between hip fracture
and RA?
I also had a reconstruction of my thumb/wrist joint (CMC) with a
nerve release in my elbow and a carpal tunnel release in early
March. I just got out of the cast last week and have started
therapy which will take about 3 months. I still have to go thru the
same procedure on my left hand. I will assure any of you considering
this surgery, that the post op pain and rehab is far easier to deal
with than the pain from before the surgery. I can already tell it
has been worthwhile.
Blessings to all of you!!! I'll try to keep you all posted if
interested.
Sandy
Hi Kelly...
I'm sooo glad that you have a very supportive husband. It's nice that HE has a headache and can sympathize with you. David doesn't do that...lol he talks about how bad he feels..and whines... I think that is a man thing. (some men anyway). But he is good at helping me out and not expecting anything from me if I can't give it.
I am surprised at how much pain I can endure without complaining too much. Guess I've become accustomed to it after 20 some years. We're stronger than we think.... Like they say, r/a is not for sissies.
Hugs..paula
Ken,
I'm so glad you are wise enough to reach out when
you are in need. My thoughts and prayers are with
you. I think it's great that you decided to have a day
of play, and Im so sorry it ended up this way. Keep
your chin up, as well as your wonderful spirit.
Hopefully everything else will follow. Keep us posted!
God Bless You
Ken.
Melanie
Hi group!
I don't post all that often but am feeling frustrated!
Back in October I went off all my meds because I had planned to
attempt a pregnancy in December and was also having some skin
reactions to the meds I was on. To make a long story short (kinda) I
wasn't able to become pregnant in Dec or Jan so I've given up for
the time being because my RA continues to get worse and worse while
off the meds.
Since I had an apt for April, last month I just called my dr. and
said enough was enough and she went ahead and put me on 5mg of
prednisone daily until I could get back in to see her (which
thankfully I go tomorrow). Between that and the Mobic that I started
taking again I've been able to coast by until recently. The last few
days have been really rough. I'm having little flares all over and
tonight it's my jaw. I can't close it or really open up, my mouth is
stuck just about in the middle; it's driving me nuts, almost feels a
little numb and just aches no matter what.
Thankfully I do go to her tomorrow morning but am feeling pretty
lousy because I know whichever meds she decides to put me back on
will take weeks to kick in and I'm wondering how I can keep going in
the meantime. I'm so tired again and just dont have time for
this ....haha...as if my body listens. The last meds I was on were
plaquenil and mtx, and I'm on mobic and the pred now, any
suggestions that I should ask for med wise? Any ideas?
Thanks
Hi all,
I have been doing a lot of reading on the possible link between RA and
food allergies. Has anyone had any experience with fasting and
switching to a vegetarian diet? If so, did it help your RA?
Thanks for any info/feedback.
Karen
Didn't you all talk about kidney flushes recently? How do you do
that?
Thx,
Kelly
I get them frequently but only...
*Warning, personal info on it's way!*
...when I have sex from the "front" where pressure is
put on my urethra.
Actually, not "only" but "always" really. That and bike
riding, horseback riding, etc. Frustrating to watch all
the bicyclists riding by outside my window :(
For a long time I did have good luck with cranberry pills,
so that might be worth a try...
Good luck,
Kelly
Hi Bonnie,
This is Steph in VA. Sorry it has taken so long for me to reply. My rheumy died a few weeks ago & I've been completely depressed ... I'm also getting married on May 27th so things have been very nutty!
I'm 28 and was dx'd when I was 22 in 11/99. I went for 3 months with symptoms & 13 doctors before being dx'd. Many people wait longer but it felt like a lifetime to me. I was in my last semester of college but these things never happen at a "good" time. When I was dx'd, few doctors believed in aggressive treatment -- my the rheumy that dx'd me did. I was on methotrexate within 3 weeks of being dx'd, and he spoke with me about the "new" biologics, Enbrel & Remicade, which had just been approved at the time. I was on Remicade within 5 months of being dx'd, and I am still on it. I'm actually a spokesperson for Centocor, the company that makes Remicade.
About your hounds & taking them to the vet ... I agree! Many people take the children/spouses/animals to the doc when things aren't "quite right" but we ignore ourselves. I don't have kids, but I do have a soon-to-be spouse & a dog.
The new meds can be quite remarkable in slowing the progress of RA. I have had arthritis for 7 years now almost and after prednisone & the disease I'm still within normal range with my DEXA tests (bone density). Your rheumy will probably do a baseline DEXA soon if he/she hasn't already. I get mine every 2 years (my next one is in a few weeks).
About your lifestyle changing ... it doesn't have to. When I was dx'd I was planning to be a high school English teacher and I chose to change my major. I worked for non-profits. For the past 1.5 years I have worked for the Commonwealth of Virginia ... great benefits & flexible schedule -- they let me off for doctor visits, treatments etc.
As you can see ... I write alot too.
Take care,
Steph in VA
Hi Tana....
I have a feeling that since we have r/a..we're going to have more UtI's than others may have. I know I am prone to them.
Paula
Do UTI problems frequent RA patients? I have had a reaccuring
infection 3 or 4 times this year. My Rheumy seems concerned, but I
don't really know if it is related to the RA or the fact that I had
bladder reconstruction last year.
Hi Sierra.....
That is wonderful news..... I'm glad you can feel better again. Plus, it's no fun worrying about lab results.
Have a nice pain-free Easter..
paula
Thought I'd update you on my situation...I had the elevated lab result
that never got to my doctor. A repeat of the tests showed normal
results, so I am back on MTX. The week that I took off the med was
quite uncomfortable!
Sierra
Hi Deborah....
The B cell meds do sound wonderful! My rheumy (who doesn't get excited about anything) was really stoked about Rituxan and especially Orencia (that has very few side effects..if any). I am on medicaid disability so you have to jump thru hoops to get anything approved but I'll be doing a little calling myself this week. Seems like any of the other meds I take causes an allergic reaction anymore...such as enbrel, plaquinel, humira, etc. (or they just don't help me).
I think these are going to be wonderful in helping r/a.
Hugs...Paula
Hi Bonnie....
That's great that your dr has talked about the panic attacks with you.
I know what you're saying about how others just don't quite understand our pain and disease. My sister would say...just exercise... I don't think she had ever read anything about rheumatoid arthritis...if she doesn't have it...it's not important. But she will give her two cents worth anyway.
Anyway, my David understands pretty much. Though i know it's trying to him when I ask him to open this up or others little tasks that I just can't do. My fingers are not very good anymore and I'm forever dropping things. I told Dave that everyday I have pain....sometimes less pain sometimes more. We live with pain. The orthopedic surgeon I had talked to about my feet said that he finds rheumatoid arthritis sufferers can tolerate so much more pain than the normal person because we are used to it. That's true. I mentioned to David that if he could just be on a 24 hr rheumatoid arthritis day himself....ranging from less pain to a major flare...he would understand better. Wish our drs could do that too. Just 24 hrs cause I wouldn't wish more on anyone. My aunt has r/a, she is in a wheelchair at 86. My mom had r/a but she passed before any real damage came about.... I think she was diagnosed at 57 but she died of heart problems at 59. My daughter thinks she may be
getting it everytime her fingers are sore. I pray not.
So, hang in there. Hope you can get some relief.
Hugs..Paula
Hi
I've been seeing this on TV and reading about this for awhile. I am one
of the lucky? ones who a poor enough to receive state aid for my meds
but here is a link:
https://www.pparx.org/Intro.php
for the people who can't get their meds anyway else. It is a program run
by Montel Williams and funded by companies and other stars and according
to him no one is turned away. What do you have to lose - if you need
meds go and fill out the app. He says his organization partners people
up with companies who are either to give the meds to the people who need
them or a person who is willing to fund the meds for the person.
I have no personal experience with this but people who are in the
nursing home with my mother in law are getting meds through this program
that the state won't approve and at the rate things are going I may have
to end up trying this myself as well as my DH who has terminal kidney
disease.
Sincerely hoping this helps someone.
Ila in Maine mailto:sewcraftyila@...
"I'm Halloween's answer to Santa Claus."
Stephen King
Have any of you any had any experience (or problems)
with insurance companies and employers?
My husband is being accused of something he didn't do
at his job, which could result in termination, and everyone
involved is being very cagey about it.
We can't figure out why anyone would want him gone, but then
I realized that, since the first of the year I'm costing the
insurance company a ton of money. And will be forever.
We're feeling kind of paranoid, but could an insurance company
put pressure on an employer to get rid of a costly employee?
Thx,
Kelly
Hi all,
I am currently coming off medication to make it safe for me to fall
pregnant. I have been off Mtx for 5 weeks now - so far so good.
I am wondering if anyone has experience coming off Humira for this
reason? I want to know how long before you started trying to concieve
did you come off Humira? I have been told one month but I have
recently read somewhere that it needs to be 5-6 months, I am confused.
I know there have not been many studies done on Humira and pregnancy
but I am interested in what other people have been advised to do.
Thanks.
Suz
I had two seizures in Sept 2004 after being seizure free for 20ish
years. After that things went downhill fast and I was DXd with RA
early this year. I think that the seizures were definitely related to
the RA but I tend to think that the inflammation from the RA probably
triggered the seizures. Although, since they don't know what triggers
RA it could be the other way around.
No matter what, it sure sounds like you should be seen ASAP by
a neurologist or epileptologist ASAP because of the numbness and
tingling stuff.
I agree, Skelaxin was great at first and then...nothing :(
I hope you'll be able to get some relief soon...
Kelly
Thank you Harold.... That will be my next avenue if I can't get the okay from medicaid.
Also, thank you too for all of your help and knowledge. You're really an asset to the arthritis group.
Hugs..Paula
Karen...I take darvocet for pain but it does keep you up. Maybe someone else can let you know what they take that has helped them. I just know it works well for my pain. he also said I could take vicodin but that makes me sleepy.
I will keep my fingers and toes (lol) crossed for you tomorrow.
Paula
Hi Eric....
I've had r/a since 1983 and my hands and feet are both deformed. I had a mother who had r/a but passed away due to heart problems...her sister, my aunt, has r/a and is in a wheelchair. She is 85 years old.
I would suggest that you go to your doctor and talk to him about your concerns. Also, your tingling and numbness. See if he has an opening tomorrow or a cancellation this week. He can do some bloodwork and/or recommend you to a rheumatologist in your area.
I'm not sure about r/a after having a seizure. But do call your dr and see if he can help you with your questions.
Take care...Paula
Hi Karen...
I know some people with r/a have normal blood tests. I've talked to quite a few and it's so hard to get anyone to take them seriously if the blood work shows everything is fine.
I am glad that you're going to a second rheumatologist. It's good because he may know or see something the first hasn't. Have they done rheumatoid factor? if so, that probably shows normal also. AUGH!! It's maddening.
There are so many different meds out there. Maybe you can try the self injectable. The one that worked for me was enbrel...but liked the enbrel that you mix yourself. Doesn't have the burn to it. I had to go off of that because of mouth sores.
I hope your new rheumy can help you feel better. Do you take pain meds? I am on darvocet for pain.
Hugs..Paula
I had a rhuemy appt. on Tuesday. The bloodwork came back perfect again. I've had a very bad three weeks and told her all that was going on. My last appt. she said I was still having flares because I was not taking the medicine properly. This time she said it doesn't make sense that the Plaquenil, Methetrexate, Declofenac, & Prednesone aren't working, and it works for her other patients. She asked me if I thought I was getting any benefit from the meds. I said I've been on them in varying amounts for 2 years and just know I'm in quite a lot of pain. So, she stopped the Methetrexate and Plaquenil. Tomorrow I see a different Rhuematologist for a second opinion. It would be so much easier if this showed up on the blood tests. I know that sounds crazy, but without those tests, I feel I have to justify seeing the doctor. I've been so bad in my fingers, toes, elbows, knees, and hips, I don't think I'll be able to live in my home in a few years. It is on a rock with stairs inside
and out. But, there is no redness and little swelling.
Karen
Hi Bonnie....
I'm Paula in Canton Ohio and was diagnosed in 1983 when I was 32 years old. I was shocked that I had this "old persons" disease. Needless to say, I learned a lot more about it when I was sent home with a pamphlet to tell me that arthritis is not for the elderly only. I really have to say, I was pretty dumb about it at that time. I'm pretty knowledge now now and I'm learning more every day.
I'm glad that you got a diagnosis...some people go without one for a long time. Now you know what you are fighting. The fatigue and general depression are all a part of it.
I have a wonderful rheumy just out of med school, but I trust in him. I was on methotrexate once but my liver enzymes went up and he took me off of it. I do take folic acid, arava and prednisone. I noticed my baby fine thin hair falling out so went back to my folic acid and vitamins. I, too, sometimes forget to take the vits. My rheumy wants to put me on orencia or rituxan, which are iv infusions, since my inflammation is still high. So, we have to see what medicaid will pay for because I'm on disability for r/a since 1999.
I consider you lucky because the medications that they have for you now treat your disease aggressively. When I was dx'd, the meds weren't that aggressive and now I have hands and feet deformity. So, you've been dx'd when there are so many new and very good meds available to you. I have had this disease since 1983 and just within the past 2 years, I've really felt incapable of doing some things. So, I was lucky to have 21 years with no really big problems.
If you're having panic attacks or depression, tell your dr. This is not new with a diagnosis of r/a. We've all been there and done that.
I live in Canton Ohio and can say that I am looking forward (when Dave retires) to be a snowbird and go to Florida during the winter months. But that's a long way off.
I hope this helps you a little. Keep a positive outlook because there are so many good treatments now and if I could have picked when to have r/a, it would be now....because there's so many new things available and more coming.
Take care...
Hugs..Paula
I had recently been in the hosp. 2xs since Dec. I had a 4 1/2 hr+
gran mal seizure. Once i was stabilized there from my epilepsy, i
noticed i was experiencing alot of pain an discomfort on my left
side. I also noticed a tingling sensation in my left arm down to my
toes.
I asked the dr. about the possibility of having a stroke. and was
told my tests given did not sayi had one.
my left arm and hand are curling inwards and "hooking". My mother
was crippled to a wheelchair at 36 yrs of age with RA.
Now i am concerned for myself that somehow after my two near death
experinces with the ventilator exs, and incubated 3xs too. That i
have contracted RA.
I cannot feel my toes on the left and my fingertips feel like they
are pushing from the inside to the outside.
My epilepsy has really had me for a tailspin these months since Dec.
I have been given Skelaxin 800 mgs 3xs a day (no good after 2 wks).
Cymbalta 20 mgs 1x a day (no good). Motrin 800 mgs 3xs a day (no
good either).
The dr's ask how my pain level is on a scale 1-10, i say 65! it
hurts that much.
I have tried OT & PT. no more can be done. i am partialy paralyzed
now after these seizures on my left side.
Can anyone tell me if this is possible for me to get RA after my
seizures?
Please help.
Eric
rangers_rainbow@...
Just got back from rheumy appt. He said my sedrate was 7 and the other test showed inflammation still. So, we were talking about the Orencia and he said that they're having a hard time getting Ohio medicaid to approve and they are even having problems getting it approved for people on Medicare. So, I'm going to give them a call myself (medicaid) and see what needs to be done.. But anyway, he was also talki g about putting me on rituxan.... I would go to the hospital for infusion one week...go back in 2 weeks and then wouldn't have to go back for 8 months.
No blood work done today. I do back in June maybe sooner if Medicaid can answer some of my questions.
Hope you're all having a nice day..it is in the low 70's today!! Yah!!!!
Hugs..paula
. . . . which when writing is unusual for me but i guess i'm still
trying to come to grips with the diagnosis of ra. when i went to my
primary-care doc and was finally honest enough to tell him of the
aches and pains (which i attributed to our horrid weather lately and
basically just to the aging process) i was surprised at how many
other questions he asked, then the fact that he was taking blood to
test for auto-immune diseases. never even entered my mind that there
really was a physical reason for my general fatigue and depression.
don't know why not . . . . . the minute my hounds show personality
or energy changes, off they go to the vet to be checked, so why not
me ? ? ?
anyhow, bottom line, the test came back positive for ra. he sent me
to a rheumatologist (i guess you call them rheumies here, yes ?) who
spent three hours with me, talking, examining, doing lab work. he's
started me on methotrexate (do i have that right) and folic acid
(because he said the med decreases what's in my system) and aciphex
(because i tend to take my aspirins and/or ibuprofens, which
thankfully are all i need for the pain, on an empty tummy). he says
i'll prolly take a while to "stabilize" and for now i have to have
bloodwork every two weeks. he says we can slow and/or stop the
progression of this disease. they're very positive, both my regular
doc and this new one.
i'm scared because i've never had to deal with something like this
before and yet i'm relieved because there's actually a treatable (or
so i'm told) cause for how i've been feeling recently. they both say
my lifestyle does not and will not have to change. i'm hoping
they're right. but i'm having panic attacks. i guess that's to be
expected . . . . . .
anyhow, i'm bonnie (as can be seen by my addy), i live in los
angeles with two retired racing greyhounds (who expect to go for our
three mile walk in the mornings . . . . when of course it's not
raining), i do yoga in the evenings and i work in a large lawfirm as
a legal secretary. when not involved with one of those activites, i
can usually be found with my nose buried in a book.
please . . . any advice, any comments, anything.
thanks, bonnie/boys
Hi everyone- I am posting because I am having the worst jaw flare of
my entire life! It started last night and my right side began to
swell up. My face looks like I had a stroke, because my whole jaw has
shifted position. My cheekbone, ear, jaw and lips are all painful and
swollen. I cant talk without slurring and I cant eat anything but
soup. It even hurts to swallow. I felt it coming on saturday when I
tried to split a pill by biting it in half. I felt a grinding and
spiking pain and then within an hour, I was drooling mess. I just had
a long overdue Remicade infusion and took MTX last night, but it hasnt
helped at all. Looks like I will have to call the RD and make an
appt. I might have a flare that lasts a few days but this is just
frightening!! Now all I need is a bell and a hump and I can play
Quasi- Moto. If anyone else has ever had something like this, would
you chime in. It would be a comfort. Hugs, Deborah
Wednesday, 4//4 issue of USA Today, page 10b. a full page ad. stated:
"April 2006 marks the 1-year anniversary of the launch of the
Partnership for Prescription Assistance. In a year's time, we've
helped more than 2 million people find programs that provide free or
nearly free medicines. Thousands more come aboard every day. And we
don't plan on slowing down." the phone # 1-888-4PPA-NOW. the email
address: pparx.org
hope this helps out some one here in our group...gentle hugs! Marcia
Hi all,
First of all thanks for all of your support.
My Rheumy insisted that I have a uranalysis run and a CBC to make sure
there was no bladder or other infection (as if you do not know you have
a bladder infection).
Of course everything came back normal and then the Rheumy says, I guess
you are in a bad flare. It was all I could do but to say no sh_t. I
just looked at her and just smiled. She suggested raising my Pred
through the flare.
Karen
Don't biologics stop slow joint damage, too? I'm switching from
Arava to Enbrel and I'm hoping it will slow the progress :)
Thx,
Kelly
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Does your menstrual cycle seem to effect your disease? It seems like every month I get flares in my fingers and toes right before my period. I was just wondering if anyone else experiemces this.
Vicki
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Hi folks.
I wrote about discovering that my lab had not sent February results to
my rheumy--results that were, for the first time, abnormal. I called
the doctor's office on Monday and was told to expect a call, but it's
Wed. night and I haven't received one. I will call back tomorrow. I
just have to say this to someone (you): I'm frustrated! It makes me
feel very uneasy to have fallen through the cracks.
The lab is at my workplace, so I feel inhibited about complaining. (A
sign I should go elsewhere for labwork.)
The nurse told me not to take my MTX again until I've talked to the
doctor (duh!). I feel a huge aversion to it at the moment. I had some
unusual symptoms after taking it last weekend and now have a strong
sense that I should not put more of it into my body at this time.
Please send some positive thoughts my direction!
Sierra
Hi all,
My Rheumy thinks I am nuts, so I am now asking those who actually
suffer from RA the same question. I never connected this before, but
I think what I am going through now (and have gone through many
times), is a flare.
My whole body hurts/aches. I feel very tired. I stand up and it
hurts to walk from stiffness. My hands and wrists (I have RA in
both) are swelling some and are stiff all day, feel hotter than
usual, and hurt.
My throat is sore and a bit burning, I feel like I have a cold coming
on, and have flu-like symptoms. However, even though I feel like I
have a cold coming on, I do not get one. This has gone on for 3
days, never getting any worse. As I said before, this has happened
on and off for years. If it really were the flu, it would get worse
and if it really really were a cold coming on, I think I would
actually get one.
Does anyone ever flare like this? I am getting to think I am nuts.
Karen
Never hesitate to call the doctor! I just learned this the hard way.
Some of you may recall that I had asked for a copy of my lab report
from late Feb. and discovered high liver enzyme values. Since the
doctor didn't call, I assumed that they weren't high enough to cause
concern. I kept taking my MTX. Last night, the night after taking the
dose, I had some unusual abdominal discomfort. I woke up this morning
with a sore in my nose. Since I have a free morning, I thought I'd call
the rheumy's office. Turns out they never received the February lab
report!
Sierra
Greetings!
My name is Sara Hillard and I am a graduate student at Kansas State
University pursuing a Master's Degree in Kinesiology. I am presently
working on my thesis project which examines barrier's to moderate
physical activity in women with arthritis. After a group focus study,
my colleagues and I created a 41 question survey that, we hope, will
help identify the broad range of barriers to physical activity in
women with arthritis. In order to do this study, I will be conducting
this survey on-line.
I contacted Mr. Hughes, and he suggested I send out my survey link to
see if anyone might be interested and willing to participate. At this
time we are only looking at women that reside in the US.
If you have any questions, please don't hesitate to contact me.
Here is the link to the survey:
https://surveys.ksu.edu/Survey/take/takeSurvey.do?offeringId=49017
Once I have collected my data, I'll be happy to post the results!
Thank you for your time and help,
Sara
Sara Hillard
Graduate Teaching Assistant
Undergraduate Student Advising
Department of Kinesiology
Kansas State University
532-3484 & 532-0702
Hi everyone,
I'm having another nasty flare. It is so strange how things can hurt
so bad and look so normal.
My rheumy says I shouldn't be having flares if I take my meds
properly. I've been taking them as she says.
My RA doesn't show up on blood tests. Although it sounds strange, I
wish it would. I think it would make me feel more confident in taking
all these drugs. I'm on the standard mix of Methetrexate, Plaquinel,
Prednisone, Folic Acid. I'm wondering if anyone can tell me what their
Doctor tried after this mix.
I also take meds, as needed for Migraines, Asthma, and Alergies.
Thank you,
Karen
I go to a clinic right now cuz I have no medical insurance. and thay
are only open on tue, and Im going to the ER when my wife gets home
from work at 6 or 630 am . and I dont have a rumy yet cuz me moved and
I didnt want to beleive thats this was happening to me. so I kept
going the way I was and now I cant do much. so thats the story with my
meds
Sean....can you get some sample pain meds from you doctor? I don't know where you live..maybe his office is closed. But if the pain is too bad..please go to the ER...they can help you. You don't have to suffer.
We're glad to be here for you...
Paula
I have an appointment on the 7th at ssi and one for state med. I just
want to thank all of you for just being here. Im having a bad day , my
back is killing me and Im out of pain meds. so Im trying to hang in
there. just wanted to let you know that Im getting on the right track
and Im dont going to give up an myself. and thank you all for showing
me Im not alone in this ((((((thank you for giving me the stranth to
do this))))
SEAN
Hi Stephanie....
I'm so sorry that your doctor has passed. It's really tough to find a good rheumatologist and especially one that you can share your life/problems with. I'm saddened that he is gone from your life.
Please know I'm thinking and praying for him and his family....
Paula
my name is angela i have have had RA sence i was 12 i had the kids RA
The older i got now 37 i been on all these meds every day and night.
perdisone 5mg i pill in the morning.one at night
methtake cemp pills 8 pills on sunday night.2.5mg
folic acid 1mg at every morning then 800 mg at night to keep me from
geting sick from the meth.
i also take clonazpame 4 at night before bed.
one in the day if needed.
i am on remidiced to 200 mg every 8 weeks on tuesday but that realy gets
to me
i take 2 tanorayl in the day and 2 at night 500mg.
for pain but when it fares up from stress its hard to handal you get
weke out at times but the doctor tells me sometimes alot of sleep helps
your body relax so i try to rest he tells me to try to get 8 hours of
sleep and 30 munint nap in the afternoon.
i have been told my nevers got worse sence my arthtitis did and that
depresion is part of the RA.
alot of others think i am lazy when i cant sleep do to my RA Hurts i
still clam from the nevers but i have alot of pain at times
Hello RA friends,
I just learned that Dr. John Lawson, my beloved rheumatologist of 6 years, died unexpectedly yesterday. Dr. Lawson & I had a great relationship -- he appreciated my desire to learn about new medications & ask questions. He is the person encouraged me to walk my marathons (& donated) and he suggested I become a spokeperson for Remicade. He guided me through broken hearts, job changes & family deaths. He was even planning to attend my wedding, & looked forward to meeting my family. Please keep his family & myself in your thoughts. I have to decide if I am going to switch offices to find a new rheumy.
Steph in VA
Hi everyone. I'm also relatively new to this group. I have had RA
for a number of years (approx.14/15?) but was misdiagnosed for most
of those years. Finally got the help I needed from a new doctor
(about 5 years ago) and the proper referrals, drugs etc. I'm
learning to adjust and live with this disease as best as I can. (I'm
50 and female.)
I've been reading posts and learning all I can from this group of
people and I just wanted to say that this has to be the most caring
and compassionate group of people ever! It helps tremendously to
read experiences and advice from people who can truly understand
what you are going through.
To the new people on the list going through the initial fears and
denial, all I want to say is hang in there - your life will change
but you will adjust. We have all been there. The people on this list
discuss the disease and drugs, etc. as that is the purpose of this
group. But I believe that most (if not all) of us who have this
desease could also tell you wonderful things about our lives. Life
can still be wonderful even though right now it doesn't seem like it.
That's it - thanks for being there and helping me even if you didn't
know I was here!
Barb
do you have any side affects from the mobic? I was on it and loved it
but I kept haveing trimers. (((real bad)) I would go to the ER and get
shots to try to stop them . then my wife found out it was a side
affect. so I stoped taking them . just wanted to know
Sean
Hi there:
I am 38, previously very healthy and started having symptoms in
November--I was pregnant at the time so everyone wrote it off to that--
2 months after I had my baby I am diagnosed with RA. The pain is
incredible--my previous size 7 1/2 feet are so swollen they can't even
be squeezed into a size 9! Thank heaven for Crocs! I have been on
Etodolac for two weeks and getting worse the whole time. Doctor is
going to start DMARD--but says they can take 4-6 weeks for relief. I
have 2 year old and newborn and work full-time. Some days I can
barely function, it's hard to hold the kids and I am so tired. My
husband is picking up the slack but I really need some relief fast--
any suggestions about exercise, ice, heat etc? Sorry to whine--this
has been such a huge shock to me-- I feel so useless...any advice?
thanks for that but you need to change it to men and women LOL my wife
need to read this..
I am 39 years old and have been diagnosed with RA since 2001. I
believe I have had it since I was a teen, but it was never diagnosed
and I had long remissions.
My RA just keeps getting worse and worse and I am at my wits end! I
was on Enbrel for 1.5 years, along with MTX, Bextra, Skelaxin and
Prednisone. I had flares but things were basically under control
and I was working.
Last year, the efficacy of the Enbrel ended for me. At about the
same time, Bextra was taken off the market and I was suddenly in
horrendous shape. The Rheumy tried all sorts of things with no
sucess. I couldn't sleep, and spent most of the time rocking myself
because I didn't know how to stop the pain. On July 1, I stopped
working because I couldn't even bend my arms to get them up to the
keyboard, let alone type. I am the sole bread winner for my family
and we have 6 children.
The Rheumy gave me the option of joining one of the drug studies he
was doing and I decided to go with it. I started on Abatacept
infusions and began to get some relief. Suddenly, my back pain was
much worse and I couldn't sit, stand or lay down without pain.
Turns out that the facet joints in my back had deteriorated so badly
that one of them cracked and opened and then it collapsed down on
the next few levels of my spine. In Dec, I had back surgery where
they did a laminectomy and used rods and screws to put things back
together.
Well...the surgery made my RA pain flair even worse than it was
before. I ended up with pulmonary effusions (fluid on my lungs)
that they said was likely from the RA. The Dr. started me on
Oxycontin for the pain and I finally felt that I was getting some
relief, at least to the point that I could tolerate the pain.
I have healed from the surgery, but the Abatacept infusions are not
giving me any pain relief at all. When they feel my joints for
swelling at each appointment, they are all swollen. It is as if I
am not on any meds at all. The Dr. added Lodine XL to my list of
meds.
I started going to a pain management center and they changed the
oxycontin to Avinza and also added Lyrica for the pain. I also
noticed than since surgery, I was having these tremors and jerking
movements and at times would have difficulty with my speech. I was
sent to a neurologist and am now diagnosed with multi focal
myoclonic seizures which could be from the surgery but can also be
caused by the immune system. This Dr. now added Trileptal to my
meds. Of course I am still on MTX and Skelaxin plus meds to try and
help me sleep.
The Rheumy did a bone scan and found that I had considerable bone
loss for someone my age and started me on Fosamax. I had xrays of
my hands and wrists and it shows a build up of crystals that they
believe are hydroxyapaptite crystals and said follow up would be
needed. I just had an mri of my hand and wrists but no results yet.
Meanwhile, my RA is still flaring and my husband and I have decided
that the Abatacept is no longer providing me any relief at all, and
its time to try something else. My options are Humira or Remicaid
and I don't know which to try. What I would like to know is this:
Based on all this history I provided, which of these might work
better? Does anyone have thougts they could provide. Anyone tried
both and had sucess with one but not the other?
Just as additional info...in case you are still reading, I have a
wheelchair and an electric scooter that was purchased by my ins.
co. I wear braces on my arms to help with pain. I have done
aquatic therapy 3x a week for months now. I am extremely depressed
and see a psychiatrist for that and he has me on other meds. I am
still mourning for the life I knew and realizing all the things that
I will never be able to do again. I am only 39, I just can't take
much more of this.
My hubby is extremely supportive and he and the kids do everything
around the house, I can't do anything to pitch in and that just
makes me feel useless and more depressed.
ok...all for now, I will stop my sob story. Thanks for listening.
Miriam
Hi Sean.....
Please know that we can understand what you're going through. AND don't hesitate to whine, cry or vent if you need to. Been there, done that. some days are better than others.
THANK YOU for sharing your story....it means a lot to all of us.
We are always a click away....
Hugs...Paula
Ohio
I wont to thank you all .. just for bring there to help and to talk to
for the longest time it was just me and I said that god did this to
me.. I backed away from him and every thing to do with him. but Im
starting to see that Im not the only one with all this crap. has for
going to the docs I know I need to go but I dont think I can take any
more bad news lol. this crap will show you how strong you are. and I
hear you about people looking at you. I dont leave the house much. and
then theres the lack of sleep. HATE it)))lol But I know now that all
of you are there for me ((((thank you )))) I a real shy and proud man
so its hard for me to let anyone help . so this is a big step for me.
Sean
Hi all,
I mostly lurk and read, but have a question. I am in the TEAR study
with my Rheumy. I am on 20 mg of MTX and 5 mg of Prednisone....
possibly placebo or Enbrel
and
possibly placebo or Plaquenil (sp)
I will not know until February 07 exactly what drugs I have been on.
My RA is somewhat under control, with the exception of swelling in my
hands, feet-which gets much worse when my Pred is ever lowered.
I had a total knee done on 1/18, but that was due to my osteo, not my
RA.
My Rheumy says that I may never be able to get off the Pred, regardless
of what drugs I am on. Is this generally the norm?
Thanks for any help,
Karen
Hi Elizabeth....
That's true....
I was a single mother and took care of my daughter by myself. I worked all my life and lived paycheck to paycheck. I remember that I needed help for groceries and applied for food stamps but was declined because I made $5 a month too much.
I was a divorced mother and had the toughest time getting any support from my first husband. My daughter and I were on our own from the time she was 3 till an adult. I didn't get married again until she was out of the house.
It's very hard. The person who sent me an application for SSDI said that my record was good because I worked since I got out of high school until I married in 1988.
It's tough to get anything anymore. Even with my good work record and even though I worked all my life till I couldn't...I sometimes feel that some people look down on you because you're on medicaid. But I can't worry about that.
I agree..it's tough.
Paula
Hi Marcia....
I'm sorry that you're having all these problems. If you do file...make sure that you get a letter from everyone that has seen you for your problems.
I decided to file for myself. I made a huge mistake because I quit work in 1989 when I married because I was having so many problems at that time with walking. But I could do things l just not as well as before. My hubby told me to file for disability and I thought..no, I probably won't get it. Which could have been true..you never know. Then, down the road, we divorced and I was on COBRA for a couple of years and that was going to be running out. I couldn't work and decided that I needed to do something to get $ and my medications, etc. That's when I filed. By this time...my hands were showing deformity pretty bad and my feet... I don't know if I would have gotten it if I filed in 1989 but should have tried. Except I had such a hard time getting approved in Ohio..I sort of doubt it.
Anyway...it can't hurt to file....get it started. If you aren't approved after jumping thru the govt hoops..you will still have the records on file and can file again down the road. I know when I was approved, Ohio medicaid wrote in a letter that I would have to be reapproved in a year or two because I could get better... YEAH!!! RIGHT!!!! But I did hear that some say you go back in 7 years to get approved...and boy do I have the hands...knees...and feet to show them for Show and Tell... I am much worse now... First...talk to a disability lawyer...they will really help you.
Hope this helps you....get the ball rolling....keep all paperwork, xrays, etc.
Hugs...Paula
Hi Holly....
It took almost 2 1/2 years for me to get an approval for Ohio for Ohio medicaid.
I know the feeling of people looking at you. My hands are deformed (and feet) from my r/a. When I go out to eat, people are always looking at my hands. I'm 57 and my hands have been like this for so many years. When I was dx'd in 1983..the meds weren't as good as they are now....not much to help with the progression. I went to a hand surgeon and he won't do surgery unless I am in pain 24/7. Since I am on medicaid I think they put you off. He also said that since I have dexterity in my thumg and forefinger...and can grasp things..I'm doing pretty good. Hey, sit down with me one day and watch me eat. (Bring your Gallagher plastic)...lol
I really liked that I had a wheelchair when I was in Florida. David could do the flea markets and I didn't have to sit down to rest. I bought mine for $160 (?) $180 on QVC.com because it was lightweight weighing only 23 pounds. This wheelchair is good if you have someone to push you...my hands cannot work a wheelchair with me sitting in it.
Next step is one of the power chairs...I found they were a lot better for me than the scooters since I had a hard time pushing the acceleration control paddle. I'll be looking for a used one down the road.
Have a good less pain day.....
Paula
Hi Kelly....
Well, it did take me almost 2 1/2 years to get. I got an attorney and even with my attorney, the court turned me down the first time. He said that 96% of the cases are turned down the first time.
I would get all paperwork from your doctors, any xrays, any hospital stays, etc. Get as much together as you can and get a disability lawyer. I called about 4 attys before deciding which one to choose. My attorney did not ask for anything until I was approved for my SSDI and then he got a fraction of my retroactive check from Ohio. Get a letter from your work. Anything that will help show your disability.
I didn't have a cane or scooter when I applied. Matter of fact, my lawyer and I drove up to Cleveland 3 times and the judge did not even see me. I was supposed to have a meeting with him but he said "no approval" and that was that. It take so long to even get in to see the judge. I did call my state representative and told his secy. my story and that I needed to see the judge. They did help and got my application in again. Ohio sent me to one of their Ohio evaluation doctors so that they could check me out. They wanted bloodwork done but they did not check off the rheumatoid factor test...which I knew that mine was very high. It is supposed to be under 15. I checked it off myself so they would run it.... My r/factor was 492!! After talking to the doctor...(and crying) trying to perform tasks...they sent all my info to my atty and to the judge. We went up again and without seeing me, the judge told my atty that he would approve my SSDI because of how high my
rheumatoid factor was...he was amazed at it!! If I wouldn't have checked off that test, I don't know how much longer it would have been before I was approved. Not everyone has that high of a factor...but I did and it helped me to get SSDI. I got a check and approval in 1999....I applied in Sept 1997. Rcv'd a retroactive check for the months since I applied. I am now on Medicaid and my meds, drs. visits, etc are paid for. I get a small amt from the govt every month.
It was hard but am glad that I did it.... sometimes it's very frustrating when the Judge doesn't even talk to you and he's making the decision whether you are disabled or not. But this was in Cleveland Oh...maybe your area is better.
Hope this helps you some....
Let me know if you need any other info...
Hugs..Paula
Hi,
I asked my pharmacist why Humira hurts so bad when you inject and she said it has to do with the high PH balance used in the medicine. Guess that is what makes it burn.
Has anyone felt like it gets hard to push the syringe in and that you have to stop for a couple of seconds, then it is easier again? Anyone know why it does this. I'm thinking the serum must be thick and it takes a second or two for the body to absorb it before you add more.
Vicki
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Hi Paula,
I'd like to start the SSDI application process asap, even though I'm
only recently diagnosed, since my work is suffering so much. And I'm
very much worried about my financial future. Can you
tell me about your experiences?
I've read that the main thing is to get a lawyer and to get good letters
from your doctors. I think my rh would be willing to go to bat for me.
But do you have to be really bad before they approve you? I figure I'd
walk into the hearing and they'd deny me on the spot since I don't have
a cane or scooter, etc.
Any advice you can give would be appreciated...
Thx,
Kelly
Hi Renita....
You are 100% correct... He did run away because he was the weak one...not you, you're stronger than you may realize. I think this disease either makes you stronger or takes you down. That choice is ours to make ... though there will be times that can wear you down.
Hugs..thank you for your story.
He doesn't realize how much he has lost.
Paula
Ohio
yes I have had a second oppion and a 3rd. I hate going to the docs or
the ER thay look at me with this look like Im so sorry for you.. LOL
well to day is a bad day my hands are as big as a house.(((hmmm yard
work bad)))LOL hay have any of you tryed fish oil????
Hi Holly..and all.....
I was 32 when I was first diasgnosed with r/a. I had been doing fairly well on meds until this past year. 2005 was very hard. I am now 57 and for many years my r/a had not bothered my social life that much. Everyone is different and r/a affects everyone differently.
I was approved for SS disability. It seems that the courts always turn down your first request for SS dis. But my atty kept after them and I was finally approved.
My husband is the exact opposite of yours. He is always looking for scooters, pricing them, etc. I tell him that I am not there yet. lol I do have a wheelchair I take when we go to things like a fleamarket (those stones kill my feet). And the hard pavement ..not foot friendly.
Ohio Medicaid will not approve a scooter or chair unless I am bedridden .. also, you have to jump thru hoops to get it. They want you to build a ramp for it before they even talk to you. Looks like when the time comes...we will be buying it ourselves.
Hope you have a nice Spring day. I believe Spring will finally be in Ohio this week....
Hugs..Paula
thank you Holly and help would be great. I live in Enid. Im just
getting to the point where I want to know as much as I can about all
of this,so can I as about things? like why do I get sick from every
little bug. and in the last 4 to 5 mounth I keep getting a strang rash
on my shoulders. any thing to do with R/A
as for meds this is all I take right now Naproxen ,
omeprazole ,amitriptylin , skelaxin and hydrocodone.. (((I was hopping
this would just go away)) LOL And I no all about bad nights . I hate
when everyone in the house is asleep and Im sitting here. but its not
that bad I have alot of time to think.
well right now I dont have med insurance. when all this came up my
boss called me and let me go. so we moved from Oregon to Oklahoma. so
we are still trying to get things in order, we are going to SSI this
week. as far as my wife gos I dont think it will get any better.
(((she just cant take it or maybe she just cant))) I cant talk to her
about how I feel , its like if its not about her then keep it to
myself. so its hard... I was looking at mobility scooters online and
she got so pissed.. so Im looking for some where to vent and just talk
about how I feel. cuz Im not going to lie I was thinking about death
and it freeks me out.. so Im need to change and find some help with
this. and people to talk to. so I hope Im not being to open but I
think I need to brake down. ok all Im starting to cry and thats some
thing that I CANT DO ... so Im going to go for now have a good night
ok Im a 32yr. old male . alitle more them a year ago the docter told
me that I have RA , spondylolisthesis and degenerative dic disease.((I
just went in with back pain . and after alot of tests here I am))) I
said to the docter HELL NO not me and walked out. well now its even
getting hard to walk. I dont have anyone to talk to about this ((me
wife just cant handle this. and I cant talk to her. its got to where I
dont leave the house, I dont want people to see me cuz I full alot. my
wife thinks Im still the strong men that I was. but I see my life
slipping away. I just dont know what to do anymore...
I am 25 years old, and always been extremely healthy, until now. My
primary care physican has diagnosed me with possibly having rheumatoid
arthritis. I am scared to be so young and feeling so bad all the time &
all of a sudden after leading a completely healthy & pain free life up
to this point.
Hi Elizabeth....
Oops...should have posted as an OT.....
I like the idea of more daylight also. In Ohio, we need all the daylight we can get. But, I think Spring is really going to be here this week.
Paula
Sorry for all the men out there, but have any women with RA who take
Humira experienced really bad thrush after injections? I have got it
immediately after the injection for the last 5 injections! That is
far too often! This time it is so incredibly painful.
Help!!
Suzie
How many of you have lupus and how did you discover you had it? Did it take awhile?
Thanks,
Abby
Hi Kelly,
I love the site too. I've sent it to everyone I know. Some, like my parents, don't appreciate it. However, others, like my friend Andrea, totally grasps the concept and frequently refers to my "spoons." We had a great relationship before my now it has deepened b/c of her new understanding of living with arthritis.
Take care,
Steph in VA
illnesses who really get it and go through the same problems with family
and friends:
Wow, I would recommend "The spoon theory" on this site. Maybe I should
send it to everyone I know. On the other hand, it might just reinforce
their perception that I'm a hypochondric and looking for sympathy :)
Kelly
illnesses who really get it and go through the same problems with family
and friends:
Wow, I would recommend "The spoon theory" on this site. Maybe I should
send it to everyone I know. On the other hand, it might just reinforce
their perception that I'm a hypochondric and looking for sympathy :)
Kelly
Hello,
I went to see my rhematologist and he said my fibromyalgia is
flaring up and my joints are not any worse. He has had me on
Prednisone 40 mg daily and is going to reduce it down to 20 mg daily.
I have also been on Prozac and he is going to change it to Cymbalta a
new medication. He does not seem to think anything else is flaring
up. RA and fibromyalgia is enough, but with have an autoimmune
disorder it makes me feel like something else is hiding. The firmness
and swollen feeling of course I have the achyness to. Thank you for
listening.
That's just what my husband told my daughter last night! "Your mom is
sicker than she looks."
Can't wait to check out that site, what a great name :)
Kelly
Hello,
I have both RA and fibromyalgia. Lately I have been feeling like I am
swollen. When I touch my arms I feel like the tissue is hard. My
upper back feels the same way when I lean back in a chair. Is this
the way it feels?
I have RA and fibromyalgia. I was finally diagnosed about 8 months
ago. I have been on Enbrel shots for about 6 weeks now. Along with
20 mg prednisone a day. I don't know if the symptoms I have been
experiencing lately is from RA or fibromyalgia. Anyone up tonight?
Is folic acid supposed to help with hair loss?
Paula
Thanks Deborah.....
I will look into that. My rheumy was talking about putting me on Orencia since the side effects are supposed to be minimal. I go back at the end of April. He just did some bloodwork to check on my liver enzymes and inflammation.
I'm on Mediciad and not sure what hoops are needed to jump thru for Orencia approval.
Paula
[INLINE]
Hi Vickie....
I had to stop Humira because I had a bad reaction to it. I had injected the first time and it got red and burnt and started hurting again 4 days later. That didn't go away for about 2 weeks. It burnt the whole time and felt like a continuous burn.. I thought maybe I had hit a vein or something and the next time, it did the same thing....but this time...the injected area was huge and big and hard..purple red and I couldn't even lay in my bed with a sheet on my leg. I had to keep my leg out of the covers and had a ceiling fan blow on it....it was burning so bad. I couldn't even put pants on. I called my dr and he said to take benadryl before my next injection. She assured me that is will help and that this happens alot. I told her, it was bad..I don't think so. Assured me the benadyl would help and it would be okay with my next injection. So, on my 3rd injection, I took the benadryl...it helped a little because it didn't burn for 2 whole weeks and didn't get as big
hard or red as the last one did but still it was a bad reaction. I was still dealing with my 2nd injection site....it was still red and burnt and by then had formed a huge scab...the scab came off about 1 month later and I had developed a decubitus (pressure) ulcer that I had to go to the wound care center for 2 months to get it to heal. It was amess. My rheumy took me off the humira and now I am on Arava. I reported this all to my rheumy, to Abbot Lab (I think that is who makes the Humira) and to the FDA. I don't know if it was a bad batch or the premix that I couldn't take. I had used Humira a few years ago with no side effects at all so this was kind of a shock to me. I'm sure this is a rare occurence.
This injection always burns and there's no way of getting around it. I had used Enbrel in the past (that oen I mixed myself) and had no burn problems.
Hope your next injection is better. maybe call your dr and see if he/she susggests benadryl before injection.
Hugs..Paula
Hi Stacey....
I'm glad your dr tok you off the Mtx. I was taken off due to my liver enzymes rising. I am now on Arava and presnisone and it seems to be helping but am having some hair loss.
Paula
Hi,
I take Humira and the last two times I injected I was left with a bruise and a red spot that was larger then the injection site. The redness was warm at first but now is fading. Can someone tell me if this is normal or what I am doing wrong.
Thanks,
Vicki
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Hi Lito,
Yes, I have to have my husband cut my toenails for me also. He is very good about it.
If he can't do it or a time comes when he isn't here, I plan on going to either the Drs. office
as they said they will do it or even to a salon where they do pedicures.
Also, the visiting nurses association can come and do that for you.
Linda Lathrop
Date: Tue, 21 Mar 2006 08:15:21 -0800 (PST)
From: Marcia Stoyle <marciastoyle@...
Subject: Re: Looking 4 Advice: Cutting Toenails
hi, Lito! I have had both hips replaced, and cannot reach my feet anymore...mechanically impossible...I go to the hair salon, and have a pedicure. gentle hugs! Marcia
Evaristo Lito Sandoval <elsandoval@...
I had a question in regards to grooming.