I was diagnosed with mild to moderate RA by the Rheumy. Does this
mean that that is what it is now? Or is this the kind it is and it will always
be this way. Or can you progress from mild to severe at anytime? What is
the usual course of this disease? Any input?At this point in time you have "mild to moderate" and that can change accordingly. You could flare and damage can occur that could put you in the "moderate to severe" range. Let's hope that it stays in this range for you and doesn't progress. You can never tell what this disease will do.
We never know what this disease is going to do. I started out mild to moderate and went to moderate to severe. I feel there is no usual course for this disease. It varies by the individual. I had it for years before I progressed. Some of us are immediately moderate to severe.
What meds did the doctor put you on to help slow the progression?
I started at severe. Oh, I'd love to be labeled "moderate to severe." But I am sure that is devasting for you.
Yes, there seem to be no rhyme or reason and the label is something more for the convenience of doctors and medical journals. To me, it doesn't seem to have much relationship to what we are actually going through.
RA varies over time. But since yours is considered moderate, maybe it will never get really bad especially with good treatment. I think that is hopeful.
I have read RA runs it's course in approx 20 years. I have been DX for 30 years. Guess my RA did not read the same book.
Most people stay in their assigned ranges but this is changing with modern treatment.
One Dr told me she would not label anyone severe unless RA attacked lungs, heart, or other vital organs. (I think she did not want to discourage patients with a severe label unless their RA was life threatening, right NOW. This was my 1st RA doc in the 70's).
Try not to worry about the whole course of your illness today. We all know that we are mortal. We grow old and die no matter what we do. For the vast majority of us with RA who are treated, it is a slow march to the end with a few long flares. Day to day variability is to be expected but is really hard to tolerate!
Let your doctor know if you are getting worse over time. This means tracking your abilities and noticing loss of range of motion, loss of strength. Also keep track of morning stiffness, increased swelling, and new joints that are being affected. Do not assume that your doc can see these details. Ask your doc if treatment needs to be stepped up or changed if things are worse than the last visit, or the visit 6 month previous.
I have been very stoic, over all these years of living with RA. If I could change the past, I would ask for additional treatment for flares – not the little 2 day flare for a weather change but for any problem that lasts more than a month. My theory is that treatment of flares lessens damage. Damage can also be controlled but resting and exercise of joints at the proper time at the proper level. Get expert help with that by working with your doctor.
I started out mild to moderate. Then I turned 4, and it went haywire. Then when I was about 7-8 it kinda went away. Then at 12 it was back to mild-moderate. At 15 it went away. At 19-20 *I* think it was more moderate, not quite severe, but my doctor was a loon. Then it went away, and in the past few months it's been back and forth week to week. SOOOO yeah. It DEF. can change. A lot. I keep asking Liz if this is really RA. She always goes "DUH" Hahah so even those of us who have had it all our lives can get crazy in denial. *sigh* Sorry I didn't have better news for you! But hang out here and we can all be crazy together!My RA hit me like a mack truck. I was told that was typical for severe ra. So you may be one of the lucky ones. I have been on Plaquinil since mid September. 200 mg twice a day. As of
Plaquenil can take up to 6 months to show any signs that it is working. What usually happens is that your insurance will require you to try things like pred, plaquenil, mtx, etc. before paying for something like humira, enbrel, remicade, etc. If you could not get a cap unscrewed then you should probably call your rheumy and let him/her know that the plaquenil is not helping and that you need to come in and discuss other options. You should be seeing an ompthamologist while you are plaquenil.
Did you get a pnuemonia shot? My rheumy insisted on one. I still got pneumonia, but the vaccine does lower your chances of getting it by 60%. Also, have you had a flu shot? Make sure it is dead vaccine and not the nasal spray kind.
it just sounds like you are progressing and should get back in so you can continue to be a nurse. We need you!
Lorster,
I know it's scary not to be able to plan your future. Being a nurse can be physically and emotionally demanding (I am one , too.). You know how to be an advocate, just make sure you are an advocate for yourself. Ride those RD's if you have to. Just make sure they give you the best treatment you can get. It scares me to think that I might have to leave this profession one day, but I'll tell you what...I've always been a fighter and have always had to work hard for what I've gotten. I don't plan to go down without a fight to this RA. Get your boxing gloves on, OK? If there's anything I can do...
Trish
I was able to go straight from MTX to Humira, but I'm sure the insurance companies resist the very expensive biologics. I think it helped that my RD decided that x-rays showing some bone erosion indicated that the MTX was no longer sufficient. I'm sure it helps if the doctor makes a strong statement of need and isn't wishy washy about it.
I am a nurse too and I have had to stop working because of the RA....it was just too much on me, and my performance was suffering too...at least I think so. YOu know how it is..you just really have to be on your game when you are at work. The fatigue was really making things difficult and having a fuzzy head is no way to go into a unit and put other peoples lives in your hands. It has been really hard. I worked so hard to get through school. I had a lot of personal tragedy while I was going through the nursing program and then when I graduated I fought so hard to get into the specialty that I was in. I worked so hard and had a great job with fantastic pay and great friends. I loved everything about it....but I just couldnt do it. So here I am waiting to get...better? I dont know...I am just living my life now. I am trying to live my life under some other title...besides "ER Nurse" and it is hard. That defined me. It still does. And so I am having to reinvent myself.
I was on MTX for 4 months...and Plaquenil for the last month of the 4 when I got put on Enbrel (still with MTX). So you dont have to go through all of the dmards....maybe just one or two.
Crunchy, I want you to know that I floated from med surg to the ER the