Newly Diagnosed w/ a Question

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rock528
Regular Member


Date Joined Sep 2005
Total Posts : 32
   Posted 6/30/2006 1:32 PM (GMT -7)   
Hi All!
 
Well, it's official.  I have RA.  I have such mixed feelings about the appointment and diagnosis.  I have been in pain for 10 years (told me I was anxious and stressed at 22) and now I am finally diagnosed.  Then again, I probably will never be a runner like I once was. But if I could just walk down stairs or get down on the floor with my 1 1/2 year old, that would be pretty great!
 
My doc is going to start me on Plaquenil and see how it "goes."  He says my current status or flare up is mild. But if Plaquenil doesn't help I'll be going on Methotrexate.  He said he didn't want to start me down the prednisone path right now. 
 
So does this course of treatment seem about right to you all? What's the goal here, realistically?  Am I going to be pain free on these meds?  Am I shooting to go into some kind of remission and if I do, will I stay in it if I am not taking the drugs (i.e: will I be on these forever)?   
 
Thanks for listening,
Rocky

elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 6/30/2006 3:56 PM (GMT -7)   

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


Current dx: Rheumatoid Arthritis
Suspected dx: Early Lupus/MCTD
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


RandomDave
Regular Member


Date Joined May 2006
Total Posts : 164
   Posted 6/30/2006 5:07 PM (GMT -7)   
Hey Rocky, Welcome to the club that no one wants to be in! Hopefully you'll get good results with Plaquenil, and a long remission is always possible! One thing I wanted to mention to you, is that you may want to mention sulfasalazine to your rheumy as a possibility. Usually it's prescribed for Colitis, or Crohn's or one of those "C" things that I always mix up, but my rheumy tried it for my RA/PA and I could just bend down and kiss her feet. Literally! It takes awhile to start working, probably 3 months or so, but if it works for you, it may be a little safer than methotextrate. You still have to do monthly bloodwork when you're on it, but generally it only causes liver or kidney problems. I say "only" because the good thing is that they notice right away if there's any problems and get you off it, and you don't have any further problems. Just thought I'd mention it as it isn't a typical RA med, so it may not have been seriously considered by your rheumy. Only bad thing is that you can't drink while you take it, and sometimes nothing takes the pain away like a giant bottle of Smirnoff's. Anywho, best of luck and keep letting us know how you're making out!
-SLE, RA & PA....it's all about the acronyms!

-Current meds: Plaquenil, Sulfasalazine, and a little NSAID du jour for flavouring. Mmmmm NSAIDs.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 6/30/2006 6:21 PM (GMT -7)   

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* tongue tongue


Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


rock528
Regular Member


Date Joined Sep 2005
Total Posts : 32
   Posted 6/30/2006 8:03 PM (GMT -7)   

Thanks for the great responses you guys.  I can tell already what a nice board this is.  I posted almost a year ago when this started and I saw an orthopedic guy that wanted to drain my knee.  I thought even then it might have been arthitis and posted here and it was so helpful.  Incidentally, I waited and let the Rhuemy drain it on Thursday.  He used anasthesia and it went fantastically!  Barely felt a thing.

Thanks for the heads up on taking the Plaquenil with food.  I'm just the type to try and take it with my coffee, donut, and multivitamin breakfast. I am also excited to ask about the sulfasalazine.  My Doc did mention the injections as step three in our "wait and see" process, but my insurance is total crap and the thought of footing the bill for those . . . Wow.  I mean if that's what I need I'll find a way, but if I had to stay on them indefinitely . . .  I better cancel this high speed connection and go back to dial up! :-)

You mentioned disability Erin - have you become permanently disabled? What about you Dave or Elcamino?  I feel so young and healthy  it's really hard to imagine.  But I guess youth is not on my side.  I mean, I just have more years for this to progress into something, huh?

How did you all know Smirnoff is my drink of choice!?! Double Black Cherry Smirnoff with Diet Coke in a tall glass. Mmmmm.

Rocky


Rocky
 
Actually happy to be sick and not just crazy . . .


RandomDave
Regular Member


Date Joined May 2006
Total Posts : 164
   Posted 6/30/2006 11:52 PM (GMT -7)   
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.
-SLE, RA & PA....it's all about the acronyms!

-Current meds: Plaquenil, Sulfasalazine, and a little NSAID du jour for flavouring. Mmmmm NSAIDs.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/1/2006 12:31 PM (GMT -7)   

"Yo Rocky",  {had to do it once!}

I do indeed remember you.  Ducky & I had the intent on turning you into a sailor with my crooked advice of having a few drinks before you get your knees done. hah!  I had mine done again 4 weeks ago.  Anesthesia you lucky dog!  Mine was ice.

The pharmaceutical companies are aware believe it or not at how outrageous the prices are.  They do have fantastic assistance programs to pay for the drugs.  All different progrmas too.  Some will cover the medications completely, others will pick up what the insurance doesn't cover & some pay a percentage to what you're shelling out.  I mean, if a person is on this for the duration...this is something that has to be made attainable. 

I like to not label myself.  Labels are for cans of tuna (but if I were a can...tuna I would be) I like to call it "Lame" or "Out of Order"  putting myself up at the hierarchy of say a Colt or a vending machine.  But yeah...I'm in the dugout now.  Left work May 2005.  But I do remain strangely optimistic.  25 years old...too much to offer to be left on the sidelines for the rest of my life. (Actually...I'm more ticked off at all the money I spent on college, all fancy degrees & diplomas framed on the wall and NO CAREER to match them).

I haven't lost faith though.  In the past few months 2 brand spankin' new RA injectables came out...so it's gonna happen.

The trick is now...waiting is the worst thing one can do.  If ya get the ball rolling AQAP the better the outcome.  Kinda like syphillis!  lol.  The 1st few stages are great because they're treatable...but wait too long and you're blind n' crazy. eyes Alright, not he best analogy day for me.

 


Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


TeeB
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 7/2/2006 3:22 PM (GMT -7)   
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
Trust in the Lord with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And He shall direct your paths.  Proverbs 3:5-6
 
Dx:  Rheumatoid Arthiris, Fibro, Polyarthritis, Asthma, IBS, Migraines, TMJ, Insomnia, Ischemic Colitis, Mitral Valve Prolapse, Vasovagal Syncope, Low Blood Pressure, Allergies, Bladder etc...
 
 
 


cbrossman
Regular Member


Date Joined Apr 2005
Total Posts : 191
   Posted 7/3/2006 7:15 AM (GMT -7)   
Don't give up on the running thing just yet, others have been as disabled as you and have come back after a treatment is found and starts to kick in.

RA is not the end, but the beginning ... Craig

rock528
Regular Member


Date Joined Sep 2005
Total Posts : 32
   Posted 7/4/2006 8:25 AM (GMT -7)   
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!
Rocky
 
Actually happy to be sick and not just crazy . . .


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 7/4/2006 3:43 PM (GMT -7)   
I'm more of a Beer-A-Rita type of girl... but I will drink some Bloody Mary's with smirnoff in it... hee hee hee.. hope you are all doing well...

Craig, my mountain biking buddy! How are you? I checked out your pics on the Father's Day post... I must say, you are very lucky! One day I will be able to ride those trails... I can do it now... I just fall off my bike too much! HA! Still trying though!

Rocky... welcome back!

Dave.. you fit in rather well here!
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/5/2006 8:48 AM (GMT -7)   

mad  moanin' all,

boy am i P.O.'d...this so-called "flare" i think hasn't been a flare but a progression. mad   going on 5 weeks with worsening joint pain & NOW both ankles and feet are shot. sad 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


Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 7/5/2006 8:49 AM (GMT -7)   
shoot, hah... i posted this in the wrong thread! sorry. jusy make believe this was written in the "Moanin'" thread. ;)
Active, Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Pred 20mg prn; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 30mg; Reglan; Meclizine; LidoDerm; MiraLax & too many others.

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