I am sorta new to RA, just diagnosed, but have known it was coming for sometime. I am only on NSAIDS and Chinese herbs prescribed by a Doctor of Oriental Medicine. I wonder if anyone else just plain gets worried about their future and what coping mechanisms they use. I wake in the night so afraid for what MAY happen to me.
I would love to hear from you veterans on this subject.
Thanks........
It is scary; but the main thing you need to consentrate on at this early stage is slowing the progression; which can be very fast if left untreated.
Have you spoken to a rhumatologist about your options? There are many medication on the market that can dramatically delay or prevent joint damage that often happens in the first two years.
I'm not knocking herbal theropies; just suggesting you learn all the facts and arm yourself with all the information possible.
Good Luck to you.
Thanks for the welcome, although I really don't want to be in this club, ha ha.
Yes, I have been followed by a rheumy since 2000. I am just now growing into my disease as he says....I have had MRI'S yearly and xrays and lots of bloodwork, bone density, etc. I just found someone who had great success with the chinese meds and I wanted to do all I could to see if I could find the reason for RA in my body, rather than "band-aiding" it, so to speak. The drugs scare me to death, I mean the side-effects can be horrendous.
I have been an extremely active girl all my life.....scuba diving, riding motorcycles, hiking, ....you get the drift, then this bad deal entered my life and has slowed me somewhat. I can't run to exercise anymore and I just hate giving in. I think I have such denial about it all.
My RA factor is 80 and nothing else is positive, even the CCP test is normal, so the doc just hasn't pinned the tag on me as an RA patient, until next week. My last MRI showed slight erosion in my wrist on one metacarpal........HOWEVER, I looked up slight in the dictionary and it says,..........INSIGNIFICANT......ha ha ..So I am focusing on that....
I may have RA but it isn't going to have me!!!!!!!!!! Big talker I am, ha ha
Thanks again for writing back.
Texas girl
Sounds like you've got it under control with your doctor. Provided you've got a doctor following your progress he'll know when what you're doing isn't good enough.
Hope to see more of you around here.
Until you 'have it or don't have it' you can't seriously treat it. No body on this forum page likes taking these drugs, but I know i'm out of the denial stage. I must take the drugs, they aren't nice, yes they have bad things about them, but as those of us who've been doing this for years know.....we have to take them! When you get there you will know it.Bad stuff can happen to any body with RA or not.
I think the worst might just be living to a healthy 100. You get to bury all your elders, almost all contemporaries, and most likely some of your children.
You have been lucky so far - insignificant damage that was a long time coming. You may stay lucky. If more damage shows up or you have a big increase in pain, try to hear your Rhuemy when he says you need more treatment than an nsaid and chinese herbs.
I went with just an nsaid for more than a decade. I did ok no really bad damage - but the course of RA is unpredictable - it picked up in intensity. By the time biologics were available both elbows and both knees were badly damaged.
Try to listen...I was very afraid of the drugs too. I had a bad experience with gold inj early on. I didn't listen for several years after being told I needed more treatment.
I read the juvenile arthritis page and was impressed with young folks who were diagnosed at 18 months! I've had it 15 years, play golf and tennis, run on the beach and do my home 'chores', etc. So, it is weird to have a disease that attacks your joints (i inherited mine) but hey, you just accept it. Find the chemical 'soup' that works for you.We certainly don't want to sound like a bunch of closed minded drug pushing know it alls here; cause Lord knows we've been accused of that....BUT; even some of the weaker DMARDS can buy you a lot of years with this disease.
I spent years taking was are considered weaker DMARDS to control what was termed "Mild to Moderate RA" and after 13 years the results have really been good. My doctors believe that it's gone a long way toward warding off the Damage that so often can happen.
I really don't feel like some of these DMARDS are Band-Aids. They really do slow the progression of the disease; and if used in time can likely save what might now be considered Mild/Moderatre from becoming severe in the next few years.
If your doctor is seeing even "slight" changes on your films; I can't believe he wouldn't encourage some sort of DMARD.
I've been taking them for all these years and nothing "horrendous" has occured yet.
thank you sincerely for your honesty and concern. My appt. is in 2 weeks to discuss my MRI change. I will be smart and brave!!!!
texas
That's the spirit!
Hope to see more of you here.
I am also a Texan...so I had to stop over and say hello!
I also was veery active, hiking and playing, swimming, all those things.. i am happy and continue to do what I can, many days I am crawling around on the floor with kids and kitties all over me.. other days...well lets just say I'm not.
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