I am a 28yr old, newly diagnosed mother of two babies. I’ve already terrified myself enough reading things online about this horrible disease. But I’m curious as to how long some people here have had it? And if you have had it for a long period of time do you certainly suffer other ailments that go along with it/caused by it? I.e. heart, lung, organ issues? Other auto immune disease? Thank you for your time, and responses.
Sorry to hear about the diagnosis Romomof2, but glad you have come to a place you can get information and support. Your fear is completely understandable, but know that you can be treated and live a full, happy life. One of our contributors wrote a ten part series of things she would tell her newly diagnosed self. I highly recommend the entire series. The first article is on receiving and dealing with the diagnosis: https://rheumatoidarthritis.net/living/no-1-its-just-a-diagnosis/.
You ask about how long people have had the disease. My wife, Kelly Mack (a contributor here), was diagnosed at two years old and has had it for forty years now. She has seen many treatments over the years and how dramatically they have improved. In this article she writes about the evolution of RA treatments: https://rheumatoidarthritis.net/living/the-evolution-of-ra-treatments/.
Hopefully others can chime in with their experiences. Know that you are always welcome here. Wishing you the best. Richard (RheumatoidArthritis.net Team)
Thank you Richard, for the response. Your kind words and links to those articles are so much appreciated! Definitely feels nice to be able to read through these forums and see that other people are struggling as well. Currently I’m only on Plaquenil now and prednisone. Fearful to lose the prednisone. 🙁 thanks again! Means a lot!
Hello I have had RA since I was 12 years old , I am now 46 so I have had it for many many years , luckily I don’t have the involvement of my organs , the RA is in every joint in my body . Overall I feel now that I am in my 40’s I am hurting more than when I was younger , I am s busy Mom of 3 children and don’t get to have a lot of rest , I think resting and listening to your body is important, this disease I can be very frustrating, but we make it through some bad days and good days , pace yourself , eat healthy, try to keep your weight down , more weight on our joints worse it is for us , start chiropractic care , natural supplements, take your prescription and you can totally live s great life 🙂
Hi Romomof2, I was diagnosed with RA in 2012. My problems started with my feet, no help from Orthopedist & Physical therapist, so Ortho referred me to an Rheumatologist. My Rheum. is fairly aggressive in treatment. The blood work at first had me as RA negative, but all signs were there, so he started me (after much blood work and immunizations) on Methotrexate. Within 6 months, I was RA positive. The Methotrexate was zero help, so he added Humira, then Enbrel, then Cimzia, Orencia, Actemra. There was some improvement, but not much with any of those, so now I am on Rituxan infusions. This, plus methotrexate, work really well for me. I was ‘fortunate’ the I did not develop RA until I was 60.
Blood work is done often because of the Rituxin, minimally 7 times a year. I see an oncologist/hemotologist once a year, because my platelet count is always high. He ran a ton of blood work, determined to find why, including a bone marrow test. He finally decided that it was inflammation, RA.
The one problem I am having now is my teeth/gums. The inflammation is now affecting that. I now have to see a periodontist. Hot, cold, sweet – it all hurts my teeth.
When I was diagnosed, my feet felt like I was walking on glass/hot coals for several hours first thing in the morning, and if I sat for very long, my feet would hurt until I had moved around. Now, with the right medication/treatment, my feet hurt for maybe 5 minutes in the morning. My hands do not grip things like I would like, dropping things in fairly common. But, the pain level for my hands is very low.
My Rheumatologist has offered prednisone, but I have osteopenia, and sometimes prednisone can cause bones to thin, so for me, this would be a bad choice. I do take Celebrex, an anti-inflammatory.
I do have mild Rosacea. On the plus side, it puts color on my extremely pale face. On the down side, sometimes it does not put color remotely equally – so I look like I don’t know how to put makeup on.
Hopefully, you can find a drug that works for you.