I decided things were good when I was in no pain, with no active flares. Then I got moving again, lost weight, and got my foot reconstructed. My standards are to accept no pain - current anyway.

Is this what you were asking? I am on Sulfasalazine and Kineret, a biologic, after mthx nearly destroyed my liver. I was initially told my RA wasn't aggressive, but 75 joints later, I put that thought out of its misery. It was the Rheumatoid nurses who assess me for my medical plan. My doc was never forthright about how seriously ill I was.

Simple answer: don't ever decide this is as good as it gets. It can get better.

I don't mean to trivialize anything, especially the situation you find yourself in, but try to believe there is always something better, and look for a way or ways to make that happen.

I wish you the very best in finding relief and in making that difficult decision.

doug

Hi Rosemo,
It's tough to understand what's going on with your RA & what's the next step when the Rheumy's are offering different opinions. I'm sorry I don't have the answers but understand some of your frustration.

I got a 2nd opinion this week too. Prof said I've got aggressive RA & not to try any more biologics for a while because of recent adverse reaction to one. So, I'm left functioning mainly due to Prednisone. For me, I often ask is this as good as it gets & I don't expect to get my life back. Somehow I think the Rheumy has promised me that the drugs will work but I'm running out of drugs to try. My original Rheumy said that if one drug didn't work then we'd try the next (been on about 9 RA drugs) & now Prof says don't go near biologics.

I guess I'll follow his advice until I lose the ability to function at a level that is acceptable for me & my family. I would be wanting more from a biologic than what you're getting & I would also want an explanation for the constant pain in your right hand. It sounds like to me that your RA is not under control.

Take care, Anna

Rosemo, Things are good because I wake up everyday and am able to independently get out of bed to start my day.

I don't look at life through rose colored glasses, but find that a positive mental attitude is the catalyst that effects the outcome of my day.

Things are good because I am loved, but more importantly because I love!

RA is just a pothole (a pretty big one) in the road of life. Just makes navigation a bit tricky at times, until you find smooth pavement ahead.

I know this all sounds very hokey, but for me that is how I get to " as good as it gets"
along with some heavy duty drugs! lol

Rosemo,
I wish I had an answer for you. Everyone here gave pretty good answers I think! I especially love Doug's who's approach is to never accept that this is as good as it gets!

My story is very different from everyone. It started out the same as some. RA for me was almost overnight, and so was the erosion, inflammation, etc. etc. ESR was at 72

Medications for RA (methotrexate, sulfasalazine and prednisone), at best, still had me in constant pain. I felt like I was going to completely lose my mind from the pain, it was so bad!! One year of constant pain, and I was still getting bone erosion, along with terrible side effects...stomach pain, hair loss, extreme extreme tiredness, I finally decided to heck with it, I'm going on my own journey.

And my own journey has been lonely, I must say, and I will also say I've had to defend my own decisions for my own body....strange as it sounds, but that's what happens when you stray from the pack.

Over three years later with RA, I no longer suffer from pain. I don't take any pain killers. I take lots of supplements, exercise and do a variety of alternative type treatments. My hair doesn't fall out, my skin no longer feels like scales, my eyes are no longer blood shot, my chest no longer hurts. I am near 100%. Even fatigue is for the most part gone.

And you know what? I'm still not accepting that this is as good as it gets. Until I can do a hand stand, I won't accept!! I have nodules and I want those gone. I still can't make a completely tight fist, ok, not even all that close.... I still have inflammation in my feet, ankles, wrists and fingers. I am happy with where I am at, but not accepting of it. I truly think, it will get better.

I don't know if that helped!
hugs,
Sarah

I never really accepted that is this it?
I went through a myriad of drugs over the years, i am not going to list them all, I just kept hanging on just hoping that ok this is drug is going to be the one. like you said you get the question from the doctor has the medicine helped, any flares? blah blah blah.
It seemed I was always flared. They said mine was aggressive, a stubborn case of RA, my tests always came back negative. I didn't see improvements in between the visits, for the follow up appointments.
Prednisone did help with the pain somewhat, but my joints were still swollen and hot. You gotta do your research on these drugs.

I think Remicade somewhat helped but then I moved and never resumed the treatment. The rheumys goal is to try and control the disease. slow it down and stop the progression.
the rheumys were not satisfied with my response to the drugs, they were looking for something better for me all the time. Just a long hard journey.

I actually did what SarahK did, about 5 yrs ago, I eventually chose another path, a bit late in the day but I believe it may have contributed to why I am in remission from RA. I still have joint damage, because of the RA, and I have osteoarthritis because of it, the drugs didn't slow anything down, but changing diet, lifestyles, supplements has helped a lot.

I also do juice fasting and I think the juice fast I originally did 5 yrs ago is what kicked RA in the rear.

I still need to improve, I don't think I am as diligent as Sarah K. And I still need to keep on taking care of myself.
But it is still a personal choice.

Us seronegative are notoriously difficult to treat! We often do not see as significgant results with drug combos as others. Personally nothing really seemed to touch my disease in the first 2.5 years (dia Jan 2007). But at somepoint it started to melow a bit all on its own and the drugs seemily got more effective overnight? No change in anything else I was doing.

I didn't get on the biologics until about 7 months ago either and have not achieved remission with the Enbrel alone. I was on ARAVA for 1.5 years before the Enbrel and 6 weeks together... it showed real promise.

I got and infection and my liver tests spiked so off the ARAVA for now. But hope to try again. I think that for people like us it will require two drugs... a DMARD and a biologic. If your RA is keeping you up at night I wouldn't consider it under control! I only experience minor sleep disturbance at this point so I put myself at about 75% shooting for 100%. I might choose to try Humira before Remicade. The self injection is just so much more convenient and an IV Clinic.

This is an interesting topic, every once in a while it is good to take stock and ask these questions.

I'm in the 'Doug camp' on this one, I work towards improving my RA situation continuously. At the same time it is a question only you can answer, it's a personal choice. I don't think there is a right or wrong answer with this one, you do what you most feel comfortable with.

Side note: Your pre-RA life was only a year ago, I found it a lot harder to be confronted with these questions at that stage, than now. "Good new" was received better by my wife as well, but all I felt was pain and stiffness.

All the best to you
Ferhaan

I am still early in as well, so I still feel victimized but I wanted to chime in. One year in, I feel like a veteran, but I am only just beginning to really get a handle on how to handle day to day life with RA. I only know that it has to get better from here. I am normally the most positive person in the room but I have become much less so.
Back to the topic, if my meds keep me functioning or bring me to remission then that's as good as it gets for me. Realistically though, I would love to be consistently back to 85-90% and able to exercise like I need to.
Back in the fall I thought I was back to 90%, but that was the pred talking.
Silly me.

I have been with RA for a littler over a year, I am on Enbrel now, was on MTX and Pred( been off pred for only a week now). I won't accept pain, it makes you feel less of a person. I do the things i do with pain, but I won't accept pain. My Dr. says there is no reason why I should live with pain when I don't have to. So I take the pred when I need to and I take my Enbrel Shots. I exercise, take supplements, eat healthy.
I take pain pills when I need to also. I feel my Body knows what it needs and it tells me. If the Biologics are helping then go for it. If they don't go with something else, do what the doc tells you, and do not let him tell you that pain is normal. I also would have an MRI done b/c Xrays don't show the the erosions that RA does as in a MRI. My xrays showed swelling too, but my MRI showed aggressive RA. Swelling causes pain that's where you might need some Prednisone to help with the Enbrel. As little as 5 mg might help a great deal. Talk with your Rheymy again and ask her if you could have a MRI.
bigi

Although I will always be researching and working with my doctor to find remission, I carry the adage of " grant us strength to deal with what we cannot change." Ra is mine forever, a sad fact but true!

With that said it surprizes me some of the responses to this interesting post. Maybe I just interrruped it diferently than most.

I believe I have RA and nothing I do wishing or otherwise can change that! Therefore I have accepted it. Now maybe the as good as it gets part is more tricky?

Since I have always been up on the latest research and findings for RA, I consider that I am informed enough to accept that for now it is as good as it is going to get. Not saying that tomorrow something will come along to make it better.

I believe that denying that it is as good as it gets can actually affect your progress of the disease now. To clarify that I mean that by accepting yourself as how you are allows you to get on with living life.

I have been crippled where I couldn't even dress myself, been in remission and everywhere in between since being diagnosed with RA in 1997.

Although I have had my struggles with RA, time has taught me live for today because noone promises us tomorrow.

I think this disease is so hard to grasp and understand because it effects everyone so different.

I have only been diagnosed with RA since December 2009, my rheumy said that I too have an agressive form of RA. This was due to my Rhuematoid factor being 67% and my ccp being 135. I was in alot of pain during the spring and summer months and my rheumy says it is palindromic rheumatism.

I was put on Methotrexate 12.5mg weekly and Arthrotec 50mg 2x daily. It was really hard and still is to accept this because I havent been in pain (except mild shoulder pain) for months even before I started taking methotrexate so for me I have no idea how I am suppose to know if it is working??

I read these post and feel so bad for everyone who is going through so much pain with this disease and all I keep wondering is when is it going to hit me like that?
I also totally understand what you mean about taking such harsh drugs. For me taking them seems to be doing more harm than good because without the symptoms it seems like your poisoning your body for nothing.

In the end these test that they do seem so pointless to me. People with all the terrible symptoms of RA with negitive results. Then people like me with positive results and no symptoms. Doesnt seem to make any sense to me, and how do they come to the conclusion if it is aggressive or not?

So many questions, and so little answers. I really hope that everyone finds some relief from this disease, you are such a supportive group and that means alot.

Marcia, I agree that accepting ourselves and the lot we're dealt with is crucial, but I don't think that's where we should stop. I know several people who just keep getting worse, but their spirit is strong and they don't give up. My own mantra used to be "this will get better," and I used to share that with people. However, reality has taught me to refine that to "it can get better."

Those people who know me understand that I give primary credit for my good fortune to a very effective drug. But, I also believe that I've affected my outcome in ways that people may not understand. I don't just research ways to make my life better, I put them in practice. There is a truckload of things people can do to improve their lot, but it has to start with believing that these things can work. This is not to make light of the fact that what I do may not work for everybody, and that there are people who are people for whom acceptance is a mighty goal, but I, personally, have never been willing to accept the hand I was dealt.

I, too, went through a period where I couldn't dress myself, get out of bed, pull my bed covers off, walk, hold a glass, lift a fork or spoon to my mouth. I understand that there are times when most of us have not been able to do a damned thing about this disease. But I also tried to be ready for a day when things would get better, and I keep on doing that. I do today what brings me a better tomorrow. If I don't get that, so be it, but I firmly believe that it helps to believe I will, and it sure is satisfying to know that I've given everything I've got.

I'm very fortunate to have wonderful support, a good drug and the time, without extraordinary stress, to heal, and I wish everyone could have the same. My hope for everybody is to be reflective of what they want from life and look for all the little ways that you actually can have a hand on the tiller. It's really heady stuff.

One last thing... I realized a long time ago that I was going to get any farther along unless I tried. I've been working at getting in shape ever since I've had RA, overcoming some other pretty significant hurdles thrown my way. But, I realized long ago that it wasn't going to happen overnight. I can do things today that I never dreamed of 5 years ago, but it happened in small increments. If you always do what you do today, you will never make it any farther down the road.

Do whatever you can.

doug

Doug, I think you misunderstood my post. I accept the fact that I have RA, which one must do in order to overcome the negatives it brings to our lives.

I have learned over time that I need to be able to cut myself some slack when projecting my objectives. Some days I hit the high notes, while some days come up sour.

I think you know I am a strong willed person. By allowing my pysche to accept "this may be as good as it gets" allows me to challenge and push myself beyond the boundaries RA has set for me.

I do not just research RA extensively, I put into action the things ( drugs, excercise, diet, etc) that I believe will make me the best I can be.

Maybe I am just lucky to be in a place that I am willing to accept "this is as good as it gets." By taking this stance, I am able to focus on becoming the best I can be despite pre determined limitations of society.

This process has morphed me into becoming a better wife, mother, grandmother and person!

I don't expect nor blame the world that doesn't understand what we who have RA suffer with mentally or physically. Instead I quietly push onward.

I remain positive and encourage those that are scared and new to the disease that it does get better in time by finding what works best for you.

If I didn't live this way, I indeed would have remained in the road with a flat tire and no jack to change it.

I think ultimately, we both have the same approach to RA, which is a proactive one, we just describe it a bit differently.

It takes desire,stubborness, good doctors with drugs, a good support system, spirituality and most importantly the desire to make life the best it can be!

So if I accept "this is as good as it gets" today then maybe it is!

I've had RA along time now, over 17 years. I didn't get very bad until I became hypER with the Graves' Disease. I had a hard time tolerating some meds and do what I can do. Even when I was on MTX and Enbrel, my Rheumy said my erosions were getting worst instead of slowing down.

So I've been reading the inflammation diet books and using that diet plus supplements and whatever else i need to do to lower down the inflammation as much as I can. These things do not happen over night for me.

{{{hugs}}}