Newly Diagnosed w/ a Question

Hi Rocky.  Welcome to Healing Well.  sorry you're here for RA, though.  Your case sounds a lot like mine was in the beginning.  Described as mild RA, and rheumy considered plaquenil in the beginning as well.  Eventually the RA dx was thrown out (although it's still on my insurance forms), and I've been playing around with the tnf-inhibitors.  Because my arthritis symptoms are very lupousy (if that's a word), my rheumy recently (3 months ago) added plaquenil.  So far so good.  I can't tell that plaquenil has done anything, but I don't think it's done any harm either.  I understand it can take a long time (6 months to a year) to kick in, but if it works for you, then it's worth the wait.  One suggestion--take it on a full stomach after a meal (not a small snack).  For me, plaquenil can cause viscous lower GI cramping if I take it on an empty stomach.  And it will stick with me all day!  I've started eating a full meal before taking the plaquenil now and it seems to keep that side effect at bay, althoug my abdomen still stays a bit tender.  Other than that, though, I've had no issues with plaquenil at all.  It is considered one of the safest DMARDs available.  I'd rather stay on it, than on some of the other drugs they use for RA.  I wish you the best of luck!  And check back with us and let us know how you're doing.  Another tip--plaquenil questions are best handled in the Lupus forum because just everyone on that forum takes it.  There's only a few of us here that do.

Elcamino

Hey Rocky,

Good thing is that the rheumatologist started you on something.

It's tricky these antirheumatic medications, they are all in a way similar but where you fail with one, another one will work!

Realistically?  If just starting Plaquenil, do not expect anything quick.  Be hopeful & optimistic, but noticeable and marked improvements start in the 3 to 6 month area.  No this does NOT mean sit, wait and suffer.  Prednisone orally or by injection is not all bad when in an RA flare.  I even suggest it if the pain is bad, swelling and mobility are problematic.  Remember, the doc can't "see" your flare or the pain. So sometimes ya really have to "VOICE" how bad it is and that's when you'll grab the docs attention. A dose of prednisone can provide a significant and QUICK response/relief to help a flare.

Long term CONSTANT steroids are what we want to avoid.

Start to think about Enbrel, Humira and the TNF injectable family of medication.  The cream of the crop and truthfully...using these medications prevents A LOT of future crap from this darn disease.  You want to find a pathway along with your  rheummy & PCP that suits your lifestyle, goals and future.  Preventing disability is numero uno.

Combination therapy seems to work best:

Plaquenil plus sulfasalazine like Dave mentioned plus a TNF like Humira is a combo.  I take 6MP (sulfasalazine), Humira, Imuran (a disease modifying antirheumatic, aka DMARD) and on & off steroids.  Adding the Imuran to the Humira was the best move I made in 4 years. Enbrel seems to work best with Methotrexate.  So you have several options and choices.

So your doc is kinda right...seeing how it "goes".  Sad, but real!  Like trial and error almost.

With RA, normally to get in a remission and mantain one, you'll need medication still.

I'de cut off a toe for each day of the week if it meant geting into remission, so the medications?...you'll adjust, it takes patience and a sense of humor (and yeah...some Smirnoff doesn't hurt! lol)

Write back soon Rocky.

*The opinions expressed at HealingWell by all means DO NOT applaud the use of alcoholic adult beverages, Beer-a-Ritas, mass amounts of Tequila, Stoli, Dewars, Kamakazis....but then again we must keep our sanity somehow must we not? LOL*

Smirnoff's is everyone's drink of choice isn't it? If not it should be. I have to question the diet coke thing though. For me it's all about vodka and cranberry. (and yeah I don't applaud...what Erin said...etc. etc.) It's too hard to applaud with a drink in your hand. Actually I don't drink at all, but if you asked my ex-girlfriend, she'd tell you I don't do a lot of things I say I do.

Hmmm disability, for me that's a grey area, which is a good thing really. I mean I can't be a construction worker or a dockworker, but there are lots of things I can do. I think a lot of the people here started young. I'm 32 now and was originally diagnosed with PA when I was 22, RA when I was 24 and SLE when I was 25. For me, my twenties were hard, you feel soooo ripped off. Can't play hockey anymore, can't play a guitar like you used to, can't camp as much because sleeping in a tent means three days of no walking...can't do lots of things. But, it also opens a whole new world of finding new interests that you can do and love. Maybe coaching hockey, learning the piano instead and saving up for a cottage.

It definitely changes your perspective and can be a hard thing to wrap your mind around sometimes. The hardest thing for me, was when I was first diagnosed, celebrex and Vioxx and all the NSAIDS were the hottest thing since sliced bread, and my rheumy at the time just kept switching me between different NSAIDS, different dosages etc. That went on for about 3 years, with zero results then I gave up on doctors altogether for a couple or three more years out of frustration, mostly just praying for death. Probably the dumbest thing I have ever done, except for the time I mooned the other team's bus after we destroyed them in a rugby game. Then I totally couldn't stand to be in my skin anymore and went back to a different rheumy who was willing to get outside the box a little bit, although still not enough for my liking. Can't have everything I guess.

For you, now is actually an excellent time to be diagnosed, as sick and twisted as that may sound. There's tons of new stuff coming on the market, all the biologics that actually do help people etc. Research into autoimmune disorders and RA specifically is at an all time high. The big companies see a ton of cash in the aging population, and that means a lot of advances and a lot of hope for those of us who are younger. With a disease like RA your head can become a really dark place, but it's important to always be aware that there is something out there that will get you back to normal, it's just a matter of finding it as fast as possible.

Welcome Rocky!

 

    Glad you joined our family!  This support group is great!  I hope to chat with you one day.

 

    I too was recently dx with RA, I also have fibro.  I have been on Plaquenil for about 5mos, methotrexate about 3mos.  I began Humira last week.  I do see a difference with the methotrexate.  Only been a week on Humira and seeing a difference with my swelling of my hands and fingers.  Like the others said it takes time to see what combination will work.  I was on steroids on and off the last year.  They help with the pain but I packed on 50lbs which doesn't help the joints either!

 

     Best wishes to you and visit us often and keep us updated.

 

Take care of you,

 

Tee

Thanks again everyone! You're all really helpful and are keeping me optimistic. I will hold out hope for running cbrossman. What not? I'll sit in my backyard with my Smirnoff cocktail and Plaquenil and think about how I'm not out of breath, sweating, or having burning legs. :) See, that almost makes having RA sound MORE fun than uber-mobility! Hah! Happy fourth of July!

 moanin' all,

boy am i P.O.'d...this so-called "flare" i think hasn't been a flare but a progression.   going on 5 weeks with worsening joint pain & NOW both ankles and feet are shot. the ankle joint pain is WORSE than my knee joint pain!

this really stinks.

thought things were going in the right direction in April and May you know.

shall see what the rheummy says this month.

extremely disapointed,

erin