Monday, November 17, 2008 lee13 asks

Q: Just asking................ What's the game plan for RA? New to it

Just asking.....What's the game plan for RA? Seems there should be one but I can't find it or figure it out yet.

Been on Plaquenil about a month now and I thought things were istarting to improve but everyday /every hour there is a pain in a different joint. Sometimes a low level of pain and I think its working then, bam everything is back. Some things getting worse. Sometimes both knees hurt ,sometimes one. Feet feel less stiff than bad pain. You get the idea. Is this what happens? When and how do you know when you have any improvement or is this the way it is for life? See RA doc in Jan , 2009 which would mean I 'd be on meds for three months by then. Guess I have to smarten up and accept this but I'm fighting all the way . Foolishly thought meds would be a slam dunk and I'd be ok. Thanks for any advise and help. Lee

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Answers (8)

Sara Nash, Health Guide

11/18/08 9:42pm

Hi Lee,

I was diagnosed about a year ago and was started on plaquenil after my initial visit with my rheumatologist. I, too, found that it didn't really kick in and begin working so quickly-it can take several months-as many as 4-6, to feel the full effects, meanwhile, you are still in pain and the disease is still progressing. I would recommend contacting your doctor to see her/him earlier-particularly if you are not getting any real relief from the plaquenil (trust me, you will know when it is really working!).

I saw my rheumatologist every 6 weeks for the entire first year, so three months seems like way too long to me. At my second visit, my rheumatologist prescribed enbrel along with the plaquenil and that made a world of difference. Many people with RA often have to try several or a combination of different drugs before they find what works for them. One good rule of thumb in dealing with RA is that you really need to be your best advocate- if something isn't working for you, speak up and demand that your doctor help you find another alternative. You are the one that is in charge of your health and how you are treated-your doctor is there to work for you.

In terms of an overall game plan or road map for RA, unfortunately, there isn't one, or only one since RA affects people differently, and different treatments work for different people. The best thing you can do is educate yourself on your options, find good support and make sure your doctor is working for you. This site is a great resource for information about the disease and treatments, but also for finding a community who can offer their own insights and experiences in dealing with RA.

Good luck and keep us posted.

Sara

Feels like the TinMan

11/17/08 11:48am

hi Lee,

plaquenil takes about 2-4 months to 'kick in' (that's what i was told). wow, i'm amazed you've been sent out to float for 3 months before being seen again? i, too, was just diagnosed and i've been in every 4 wks to see my rheumy. i'm already on my 2nd drug combo. First was relefen and plaquenil and i had the same symptoms as you, although i RARELY have the same pains on the same sides. in other words, if my knee hurts, only one does. if my foot hurts, only one does. a month ago was i switched to prednisone instead of relefen, and it's been 3 months now that i've been on plaquenil. i feel human again. Matter of fact, i very seldom think about my RA anymore, that's how good i feel. i haven't had any flares since the prednisone, and i don't have much pain at all! of course, yesterday was one of those days where i 'forgot' i had RA and did alot of work around the house....well, i am reminded today that i have RA. i'm not in any excruciating pain, i'm just very stiff and have a little soreness in my muscles....but that's how the RA train goes i guess.

good luck. i hope plaquenil works for you.

desiree

Nancy S.

11/20/08 10:27am

I thought when I started on Plaquenil it would be a "quick" fix also. It takes time (and patience, which I don't always have). I tried Naproxin 500 mg. twice a day in place of the Plaquenil and am now on Diclofenac and Methotrexate. I was hoping for no pain but don't know if that is a pipe dream. Next move will be to probably Humira but am trying to wait (not a big fan of needles).

Keep a good outlook and give the Plaquenil a few months before suggesting trying another drug.

Nancy S.

Phillip

11/20/08 11:44am

Pay attion to what you eat and What hurts and stay away from it. I can not eat red meat or orange juice. If I do have red meat my hands and knees will swell up and be painfull within an hour. Orange juice just hurts these joints no swelling

Tiffany

11/20/08 7:32pm

When I was first diagnosed with RA, I was put on Plaquenil & Methotrexate, it takes at least 3 months for them to get in your system & start working. He wanted to put me on Humira, but I didn't have insurance & couldn't afford it. After I got insurance he put me on Humira, that didn't help so he switched me to Enbrel & that didn't help. I decided I needed a new Rheumatologist so I switched. She decided to try Remicade IV. That has helped SO much. Just remember, you know your body & your doctor works for YOU!! If you need to see him sooner, call & tell them!! Don't wait too long or you could get joint damage like I did.

Good Luck!!

Tiffany

kaylac

11/24/08 2:22pm

Hey Lee,

My name is Kayla, Im 21 and I've battled RA all my life. Give the plaquenil some time but to be very honest with you no RA meds are going to cure the disease or take away all the pain. I don't remember the last moment of my life that I was not in pain, my RA is pretty aggresive though MY joint in my right wrist is almost completely gone. Its a struggle but you'll find the stregt to get through it I now it. I have flare ups alot and RA is a constant in my life but I stay positive and I keep a great support group around me! I hope everything works out and just remember to stay positive!

Pat

11/24/08 11:19pm

I, too have RA and Lupus. Plaquenil is my best friend. NOTHING is going to take away all the pain. I also take Glucosaminne Chonroitin and am a firm believer it works. There are days I don't hurt as badly as others and other days I prefer to stay in bed. Don't. Keep moving, keep doing. I don't coddle myself. I am most likely much older than you but have had RA for nearly 20 yearas. True there are thing I can't do as well as I used to. I . . get on the floor only once. Anything left there will stay until I have to get down there again.Tub baths are out of the question for me. I can't get out. Stay positive, don't whine. Find things to laugh about even if it is yourself. You gotta admit your effors are comical sometimes. Don't be afraid to ask for help yet stay self-sufficient as you can . good luch.

Sonja Marcano

1/21/09 11:15pm

Hi Lee,

I have good news. There is a game plan. I have had RA for 40 years. I will not bore you with all the medicines I have tried over the years. Prednisone is a wonder drug, but with many side effects. I got cataracts in both eyes from it and I have lens implants in both eyes as a result. So, I stopped taking prescribed medicines. Here is the game plan:

a/Clean out your system by going on a liquid fast for 30 days - this means lots of water and soups. No meat, dairy, fish or chicken.

b/Eliminate all white flour, white sugar, all dairy, white rice.

c/Drink water with a slice of fresh lemon.

d/Lots of salads and green smoothies.(Boutenko)

e/Massages and exercises to keep the joints moving.(tai chi)

f/Vitamins from Yogabody Naturals

g/Use honey, stevia or panela sugar as sweeteners.

h/No sodas, readymade fruit juices, processed foods

i/Steamed or raw organic foods only.

Q: Just asking................ What's the game plan for RA? New to it

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