My complaint list | Arthritis Information
L Remicade does not last as long as it should. Wears off within 2-3 weeks.
L I still flare with weather change, even when Remicade has not wore off.
L Upper back/neck/shoulder gets really tense, stiff and painful after sitting. I can hear fluid swish around when trying to work out the stiffness.
L There is something tight in my upper right thigh, that goes all the way to my hip.
L Hip still bothers me but only if I jerk or jolt my leg. When I sit it feels like there is something under my right hip.
L Right fingers get very very cold and the coldness goes up to middle of my forearm. My feet get really cold and cold radiates up my leg. Hands did not get cold until I started new meds.
L Ball & socket to my shoulders get inflammation and limit ROM. Painful. Collar bones hurt.
L I get pain in my ribs. It feels like something crushing them or my ribs are rubbing together.
L When I bend over to pick things off the floor and do it repeatedly, my legs will start to shake and feel flimsy. And will continue to feel that way for while after I have sat down.
L My left ankle & foot are bothersome. I cannot walk or stand for more than 15 mins before they act up. Ankle will get stiff upon rest after it has started hurting.
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J Remicade works well. Better than Humira did.
J When Remicade is working I have much less pain & stiffness. Pain & stiffness is bearable.
J Imuran helps decrease swelling. Does not help swelling during flares.
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s Does RA effect the spine & neck?
s When to take pain meds? When I start feeling the Remicade wear off?
s What is it when squishy swelling turns to hard swell?
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joonie
i am sorry you are struggling so much. take your list to your doctor and let him see it. my top of my neck hurts and my lower back hurts my back pain is relatively new in the last 2 or so years. i love those therma care pads. i stick them on and wear them all night for my neck and lower back too. i take my pain meds when my pain is all i am thinking about or if i have to go anywhere where i have to be nice. teehee i hate it when my remicade wears off and i still have a week or two to wait. my life does stop until i get treatment. maybe they can drain your joints? is it your knees? and inject steriods.? tell your doctor maybe they can increase the remicade and shorten the time between treatments. i am truly sorry. it is so hard for you right now. i look at my disease as a circle. when i am on top of the circle i am great as i begin to see things falling apart and pain i am going down to the bottom. i usually have to reach the very bottom before they will play with my meds or switch me from anything but then i will notice little things things that are starting to improve slowly and i am climbing back up again. sometimes i slide down before i make it to the top again. but anyhow for me my disease comes and goes around like a circle. trust me i hate it when it starts messing up. i will say a prayer for a peaceful and pain free nights sleep. hope you are doing better real soon. susan
Thanks, Susan. That is my list I'am going to print out and take with me Monday.
Hope you are doing as good as you can be without Remicade.
Joonie,
Have you explored Physical Therapy? That might help you with your hip? It might be worth looking into.
Phatsdear joonie
i got my remicade on friday. yippee!!! the doctors still have to replace my plaquenil. i have been on it about 17 years. it is causing some blindness now. so i need something that will replace it and work. i do believe getting in a hot tub or warm pool would really help. where you could move around almost pain free. i call warm pools "my little bit of heaven on earth." it is about the only time i dont hurt. my doctor wont give me pt but it never hurts to ask. i also joined curves which surprizingly most of us can do part of the exercises and it really makes you feel better. i have been really impressed and the ladies are so friendly! i also get a treatment called the bowen technique. you can look it up online. it is not a massage. you leave your clothes on just wear thin clothing and she pops muscle bands in your body that release red blood cells. feels almost like she is doing nothing but it helps. (by the way my doctor would poo poo this) all three help and i would jump at the chance for pt. let me know how you are feeling and again i am sorry it is such a struggle. susan
Phats- I am waiting to hear what my nuclear bone scan said was wrong with it. Last time I was at RD's they did not have the report back from the hospital. And it was taken back in December.
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