Just wondering how many years you guys have RA? and how are you doing now with what treatment.
I am just diagnosed and on Minocycline.
Hi,
I was diagnosed in Sept 05 but I think I had it for years but was mis diagnosed. There are some people here that are on minocycline and are doing good maybe they will speak up.
I have good and bad days. Bad weather and high humidity really affect me badly. I was on humira but went off it in Jan. to have a cyst removed. People are so different and the treatments vary.
Take care
Cindee
I was diagnosed about 2 months ago. I take sulfasalazine. Dx 13 years ago. Currently on 5mg of pred, 20mg injected mtx weekly, 2mg of folic acid, and humira every other week. I was dx'ed 13 years ago and I'm currently on 25mg of MTX a week and I'm doing very well.My RA is about 4 or 5 years old. I have taken Mtx, plaquanil (?) and Humera. I am currently on a quick pred pack due to a VERY swollen ankle. I try not to take drugs either. I do take Vicodin now and again for any pain but for the most part, I dont have any. About 2 years ago I started going to a gym and I SWEAR by it. I know it doesnt help everyone but for me, that is what made me be able to stop the Humera. I have not taken any RA meds since. I am allergic to all NSAIDS so that makes for some interesting pain management.So without any medication. how's your X rays coming out? I mean is there any bone damage happened?
I just wonder if there is anybody having this disease for long time and still don't have any damage to bones!I am 28 and will have this for the rest of my life (unless there is a cure) so I am hoping after 40 years of this, I can still move around.I am 27 was DXed when I was 18 months old... so I guess I have had it 26 years? I am going to be 28 in June. I remember my mommy telling me what my JRA was when I was old enough to "understand" and I remember her telling me that the doctors told her that by the time I was a teenager my bones would be that of a 60 year old.
I am on Humira and pred currently. Need to see if I get something added for inflammation.
I was dx'd probably 19 years ago, was on MTX for most of that time until a year ago, added Remicade and Folic Acid. I should have been more proactive, but because I didn't have the devastating flares people talk about on here until last Jan., I just let my treatment ride and took OTC pain relievers when I felt bad. All my middle knuckles barely bend and I can not make a fist. My dr. had suggested changing my treatment, but I was too fightened by the "may cause" disclaimers. This is not a disease where you should wait and see.hi, good question for information we can all use on the board.
I've had mine 15 years, but only been treated for 10. I didn't believe the doctors! Not me I said. I have damage in my toes, especially (my little toes are limp), also my Right pointing finger, the knuckle is big, and it won't work jsut right. As an artist I've reduced my flexability. Also, my hands are strange for golf, be that's okay I do that for fun.....jsut enjoy being out there to play (if I can stay in the cart and not get out before I put on the brake, it would be nice). Kinda funny my whole family was so supportive when I had my heart valve repair, but they hardly react about my RA. Oh well.....
sarah
I am 31,just diagnosed. and I can't see myself in wheelchair even after 30 years..I see people in their 60s so active, working and living productive life. I want to be like that.
Ninilchicken,
Even I don't have many symptoms. just little swelling in couple of my finger joints. But after being on MTX, didn't you check X'rays regularly? I thought MTX controls bone damage. and I thought if you don't have symptoms, means disease is not affecting your bones. isn't that a case?
Just dx'd in January, but I believe it started last year around this time.
I'm taking Enbrel (50 mg/ml once a week) and oral mtx (4x2.5 mg), along with folic acid. I was already on Relafen, Skelaxin, Lyrica and others for my fibro, etc. I've had to increase the Vicodin ES since the RA started (hoping to get rid of that someday).
I was diagnosed 23 years ago and probaby had it for almost 30 years. I'm 44 now. I'm taking rituxan, arava and celebrex.
Justgotit- MTX can stop the damage but like any of the medications it must be monitored by x'ray and regular examinations to check its effectiveness. Many people think that the absence of big flares means the disease is under control but I'm living proof that smoldering long term inflamation can do as much damage as a big flare can. Careful monitoring and adjusting things as necessary is important
I am 53. I say I have had RA about 30 years.
However when I was kid multiple drs told my parents at various time that I had arthritis. I don’t know what kinds of arthritis kids get except RA – so maybe the answer is always like Joonie. I certainly have memories of swollen joints, aching legs, caused by accidents I didn’t remember or activities that were too much for just me. My mom gave me aspirin and rubbed my legs at night – kindergarden was a bad year for leg aches (walking to school?)
I was a junior in college when I came down with a chronic case of inflammation. It continued to get worse before I sought real treatment from a rheumatologist. I was given nsaids and dx with sero-negative RA. That was treatment for 13 years.
During a really terrible flare, my dr got me to try gold injections weekly. The 1st 16 week course went so well, we stopped this toxic drug. Six months later I was in a full blown flare, and we tried it again. This time disaster struck about 12 weeks into the 16 week series, I ended up with a CNS problem that is really rare. It took nearly a year before the twitches and tremors died down and about 3 years before I was back to normal. Treatment was back to nsaids and nothing else.
Then a miracle happened – I went into a remission that lasted 4 years. Followed be 2 years of episodes of flares that gradually became chronic inflammation and pretty serious RA again. I finally got up the courage (desperation) to try more dmards again. Started with plaquinal, moved to mtx, tried an experimental dmard that really worked for me, when the experiment ended I lost my mystery drug. (It was a monthly injection intra muscle of a very thick serum. I still don’t think it is on the market. Pity because it worked for every body in my study group and none of us quit for side effects for 2 years!!!) I have been through enbrel, remicade, and am now trying humira, with arava, clinoiril, effexor xl, and prontonix and tramadol for pain.
My elbows and knees are ruined. But I’m holding off on replacement surgery for now. My feet, wrists, hands, and neck show damage on x-ray. They all hurt.
I still work. I take pain pills every day. I have some pain at all times. Even though my activities are limited, most days I consider myself to be ok because I can manage without a wheelchair. I can be on my feet about an hour and a half before I can’t stand it any more – I am done for the day and usually ‘pay’ some, for a day or 2. The last 2 years have been really hard – more mobility issues than I want to admit.
I do long for those days of remission. I really loved learning to dance. I met my DH on a dance floor. My life blossomed between age 36 and 40.
I was dx'd in December 06, but I think I've had it since the summer. My feet were hurting when I got out of bed in the morning, but I was blaming my shoes for that. Then a couple of months later my hands started hurting across the middle joints & were a little stiff in the morning. My regular doc said "that's classic rheumatoid arthritis!" & did some blood work & x-rays of my hands & feet. He called me back to tell me that my RA factor was positive, but that he felt that I probably didn't have RA because the x-rays looked OK!
But he did send me to a rheumy right away. Saw him in November--he did more x-rays of my hands & feet and a lot of blood work. (I tried to get a lot done because I had met my deductible on my high deductible insurance for the year!) He said there was some damage already showing up on the x-rays, not a lot thank goodness. And this time the RA factor was negative.
He started me on 5-10 mg Prednisone (I started on 5 and increased to 10), 2.5 mg x 6 Methotrexate and 1 mg folic acid. I went back in March and he added 50 mg Embrel. He thought I would have shown more improvement in the 3 months I was taking the Pred and MTX. I'm not feeling all that bad but I do have more swelling & redness in a couple of my knuckles.
I haven't had any side effects from the meds except for a little slight nausea (that has gone away) night sweats (don't know if it is from meds or the RA) and the strange bursts of energy from the Pred.
I was diagnosed in Dec 05 but have had it for nearly 5 years. I have
I thought only the biologics reduced joint damage not MTX.
That's the only reason I inject that crap into my body every week.
Methotrexate does reduce the joint damage but is not as effective as the biologics.
I was dx'd the summer of '86. Currently taking remicade, MTX, imuran, prednisone, fosomax, folic acid and occasionally OTC pain meds.
I feel pretty good these days. Some soreness here and there but no really sharp pain.
I was diagnosed 37 years ago and I am now 38. I will be having a knee replacement next week. When I was a kid the only options were PT/water therapy and baby aspirin. As I hit my teens the JRA spread from my knee to my elbow and I was put on every NSAID at one point or another. After I got married my arthritis spread every where and that is when they told me I also had Osteo and Fibro.
I would get to where the NSAIDS would quit working and have to try the next and newest one out. I quit doing this when I had a bad reaction to Vioxx. I just went back to 800 mg of motrin 3 times a day until I got pregnant and went into remission.
I can't take Plaquenil due to side effects of muscle weakness. Doctors have tried three different times to put me on it and everytime I have the same reaction. (The doctors didn't believe me when I told them about the reaction and said it wasn't possible!) I have also been on pred. packs for bad flare ups.
So what could I have done differently to avoid having to have a knee replacement? I don't know, I wish I did know. I do believe that some of you just being diagnosed within the last few years have a much better chance than I had. So much damage was done to my knee as a child when there were very few options as far as medication.
I was Dx'd back in 2001. But had symptoms off and on since I was about 8.
Stories are so heart breaking..especially the ones who had it since childhood. I wish I had that courage!DX may 2007. Had to stop running (6-10 miles QOD) and can't really exercise as repetitive motions cause much pain. Has certainly changed my life.
I was diagnosed in Feb 07.
Well, in Dec. the rheum. said I had it, but just being diagnosed with Graves- I didn't really believe him. He said we could wait a few months and see if the meds for the Graves helped at all. ( as joint pain is evident w/ Graves also) It didn't get better....blood work and x-rays confirmed the diagnosis. (RA factor Neg at this point)
So I'm now on 5mg pred. and Plaquenil. No relief yet...
I was dx in January of '02. Had symptoms since '01, and maybe even before that.
As far as I know, I don't have any damage. I haven't had any x-rays in awhile, but have had them more than once, with no signs of damage yet!
Take care!