Hi everyone, this is my first post. I was diagnosed in June last year. I had a horrible flare that subsided by October. Things were good until January when I started a bad flare again. I am still experiencing the flare even with changes in medication. Is it common for flares to last this long? Do you ever reach a point where you don't have pain? Thanks for any info you have.
Welcome to the group!
It is really variable from person to person. Some people have one horrible flare, and then never return to anywhere near that level. Some people have multiple flares a year.
There are also terminology questions. For example, is it a flare, or an increase in disease activity, implying that the disease has progressed, and it is a new level.
For example, every year in the spring, I have a flare. It lasts 2-3 months, and then it takes me another few months to build back up to where I was. Just in time for . . . . Guess what? Another flare! I don't seem to be particularly affected by stress, illness, etc, although I always worry. Instead, I seem to be primarily affected by allergy season. Every year. Doesn't matter if I keep my allergies under control or not.
There are people who will experience remission. For some, they will have to stay on medication in order to continue, others will be able to come off meds. I actually just asked my rheumy about this, and she said about 5-10% of people will experience remission. She also said that if it hasn't happened yet, it's not likely to. I was diagnosed almost 6 years ago. I'm under decent control much of the time, but the disease definitely continues to march on for me.
There really is no way to tell exactly how you will progress. You treat the disease, and you hope for the best. For some people, it can take time to find the meds that work best, and it will likely change over time.
My first flare lasted about 30 years. Its been a cakewalk the last 10 or so with aggressive treatment and therapy..... Half the time we miss the good because we are focused on "pain" as opposed to "function" Once you learn to focus on function (the actual disease) instead of "pain" which is always relative, things get much better over all.
Welcome to the group! There are some really good folks with great insight here. It has been a wonderful relief to have found this site, so I am glad you found us, but so sorry that you need us.
That is an excellent question. I really don’t know the answer. I feel like my life for the last seven months has been just one long flare. I have a lot of pain and weird things happen with my joints even with all of the drugs. However, I am living with all of it much better than in the beginning. I was able to go back to work three weeks ago. I don’t really think that I am doing a whole lot better, but I have really figured out how to adapt. Regardless of whether or not one ever experiences remission, we all have to adapt in order to live the best that we can. It is so important to get up and get moving. You have to learn how to continue to live your life on the bad days and to really treasure to good days. But this is just based on my experience.
Many more people experience really good medication management and have occasional flares. I think the biggest part is getting over the first hurdle of this disease. There is a lot of confusion and chaos during the first big flare. You are trying to find a good doc, deciding on a therapy, getting pricey drugs approved, then trying to get the dosing just right, the emotional upheaval, and then trying to manage the day to day stuff. The point I am trying to make is once you get past the initial whirlwind, you can figure out how to get a grip on things, whether you achieve great relief from drug therapy or not. It does take time, but it does get better.