Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I have had RA for more than 7 years now.... it has changed my world completely... BUT just for those of you who are new and even those who are not.... never give up. It CAN get better.
Now, after many years of thinking life was completely over...(I was housebound for a year in the beginning)... I am now walk/ jogging, lifting weights, and work (if I want to). I have done one 5K since the diagnosis and hoping to do more this fall (when it cools off)....
I am not the fastest, the best, or as strong as others my age... but I have not quit. I am 54.
Having a good rheumy has made a lot of difference. Being open to biologics and other forms of treatments and listening to my body, feeding it well, and getting rest when i need it.... All of those things work for me.
We don't have to give up life.... It may be different, but it is still good. There are probably more flares and down times in my future... but I know it's going to be okay. I always get back up. I know you can, too. Keep up the good work, my RA friends and family. xo Sun
What is working for YOU???
But over the years and increased MTX doses lost their efficacy.
The reason I couldn't go on biologics was because I'm "latent TB." This means that I have TB in my body but it's not active....it can activate at any time. Because of my age, TB treatment is contraindicated for me UNLESS the TB becomes active.
And so, for years, I plodded along, feeling doomed.
Then, at my wits' end, I had a come-to-Jesus talk with my rheumatologist. I swore up and down that if he let me take a biologic I would, at the first TB symptom, call him and go off the biologic.
He had me do a secondary TB blood test. [The first was the skin pricking some 60 years ago. The second test came back negative. That made him feel more comfortable about prescribing the Humira.
That was five years ago. No TB. The Humira changed my life.
There is ALWAYS hope.
Then, the drugs started failing, one way or another. Till last Jan., when Simponi failed completely. I am on Orencia/Arava and it works about 85%. Just enough that I can't feel sorry for myself, but bad enough that my hands are still constantly flares and deforming. And my shoulders keep flaring. And I am exhausted all the time.
I hope for nothing but the best for all those reading this OP. I hope you find the right biologic and get most of your life back.
But after 18 years with this disease, I'm a bit more resigned to the ebbs and flows of drugs working and side effects. And that I may never be able to ride up the mountain on my bike to get back home (like I used to all the time!), because my knees and feet got so much more damaged last year when the meds weren't working at all. Sigh!
PW39.... wow!!!! good for you lifting weights. My doctor advised this as well bc is it so good for the bone and muscle. I noticed help immediately with humira. I take the weight lifting and all of my workouts very slow... but I don't worry about that bc I am at least seeing progress and I am doing something. You GO!!! I'm very proud of you finding your new normal. It does get better and we find even in the down times that it's going to be okay and we always get back up again.
Keep up the good work RA warriors and fighters. We are strong!!!
I'm happy to be in the company of people who are not quitters.