Expectations with RA

Hello and thank you for the question. I do not think anyone knows and for some obvious reasons. First remission is not completely defined. Here is a good discussion of remission from the arthritis foundation.


https://www.arthritis.org/health-wellness/treatment/treatment-plan/disease-management/your-ra-is-in-remission!-now-what



There are others and definitions have changed over time. But far more important than definitions, I have found it is really defined on an individual basis. In my 20 + year journey, I have felt I have made it to remission at times, only to be pushed back many times when my medication has failed.


Other times I have felt that remission will never happen. This usually happens when my joints swell for no apparent reason.


Finally, I do not know of any one place that keeps close tabs on this, largely because of the reasons stated. It is mostly a personal definition.


My own definition is I am in remission when I can sit on the floor and play with the grandchildren. Because of prior damage, I do not regard being pain-free as an option. But like I said many people would disagree with my definition.

Hi . The desire for information on remission is certainly understandable and the quest for it even more so. Unfortunately, much of what I could say is in line with what Rick () said, there is no consistent definition or statistics. The good news is that this is o.k. because anything you would find would be out of date by the time it is published and actually understate the numbers. Treatments are improving all of the time and any compiled, reviewed, and finally published stats can't take this into consideration. Because of the problems with defining remission you will often notice the term "controlled" used instead - as in "the goal is to keep the RA well controlled." Concerning what I said about treatment improvements, a big step forward is that treatments are becoming more personalized. For example: my wife, Kelly Mack (a contributor here) was diagnosed with juvenile RA (JRA) at age two, over 40 years ago. Recent research has found that interleuken-6 and interleuken-1 inflammatory molecules are a primary driver for JRA. Kelly started an IL-6 modulator a few years ago which has brought her inflammation numbers into the normal range for the first time. Another contributor here with JRA, Daniel, started an IL-1 inhibitor and also had good results. I know that Rick has also done some research into the personalized treatments and the burgeoning testing for what treatments may work best for an individual. These cases are anecdotal, but serve to illustrate the potential. There is real hope that those diagnosed today will not have the same level of damage as those before them. Wishing you the best and please know that this community is here for you. Richard (RheumatoidArthritis.net Team)

Thank you both for your response. I realize everyone is different and there’s no real answer to my question.


It’s so difficult to know when I’ve achieved the best possible response to my medication. My numbers look great, I look normal but my fatigue, brain fog and what I call “ping pong” pain is still there. Not as bad as before but it’s there and it limits what I can do.


I am grateful to not have a lot of joint damage but I wonder does anyone ever feel like their old self?

Great question, something that I probably asked many years ago when there was no internet and only had doctors to rely on answering this for me. How it was put to me was, "how would you define remission?" Yes the question came right back at me. Then I remember having statements in similar terms something like " First how is RA defined? Once you get that answer then check out each medication you are prescribed for this and what do they say they do for RA? Now check the dictionary on how they define the word Remission. I sat with my thoughts and responded with something like this; " RA is .......... none curable.. Each medication reads in part as to state they Could Possibly Slow the Progression of RA" Then it hit me. My opinion of remission. There is no remission as far as stopping RA progression at all, I can only hope for it to slow so I may be able to function the best I can, each day is a new adventure."


Further in the thread you asked "does anyone feel like their old self". Honestly, no, never did. Yes I went through the grieving process as it was explained to me, the "lose of myself", it took time and anti-depressants, which I still take. But today 20+ years later I am so happy I did not go back to that 30yr old mom of 2, wife of 1 and animals, working crazy hours and running around with my head chopped off. There is many negative things about RA but there is some positives too. I have 2 beautiful adults, 2 in-law adults, 2 grandchildren, 1 hubby, 5 fur-grands. I get quality time with them. Have learned not to be stressed over little things and have learned how to manage the "big things" a lot better. Be more patient with myself and others, enjoy the little things life offers, from cloud shapes to achieving a new recipe and more! , they are really truly amazing things that my 30 yr old self never noticed.


I so wish you the best in seeking the answers you desire and the best hugs to help you on your journey.