I have suffered from RA for almost 30 years. Im 47 years old and have had RA since I was 19. I am in a wheelchair from this disease and I truly believe if I had the right treatment to begin with I would not be in this position. Back in 1980 the doctor told me to take 16 aspirin a day! So of course I became ill from that. Then I started gold treatments which only helped for a little while. Ive also been on Enbrel for 8 years and now on humira for 1 year. I dont feel anything is helping me. I am now going to Boston for aan orthopedic consult because my right hip is so bad I m going crazy! Its probably to late for my kneesbecause they have contractured. The doctor I had never got me into physical therapy so I finally got a new rheumatologist and she said it may be to late and I may never walk again! Id like to know if there is anyone out there in a wheelchair from RA and what they are doing about it?
There are lots of people like you! I use a wheelchair too but I can still walk around pretty well. I mostly deal with a lot of pain that makes walking so hard.
Anyways, treatment is just getting better in the last 10 years really....
Your doctor MIGHT be right but it depends.. some contractures are not as rigid asthey seem so you might have hope of becoming ambulatory again.
Whatever the case, do get in touch with arthritisintrospective.com Also a awesome book is Get a grip by Amye Leoung... she has very severe adult onset RA from a young age and was in a wheelchair unable to feed herself from the viciousness of her disease however after many treatments, surgeries... despite the odds.. she has had many joint replacements,... we call her bionic woman! .... she is mobile and you would never know that she was so severely disabled before. Her book is a nice read as well.. very encouraging and it's rare to find books about other younger people with this disease as well.
I know a number of people with this disease who use wheelchairs full time and many who went from being completely unable to walk to walking... there is hope... I know someone now goign through multiple joint/body reconstructions... his chin, jaws, neck, and so on.... Anyways, Arth. Intro. has many like you and will connect you to others.. get in touch with them :)
Thankyou so much for your reply. I am so relieved to find out that there are people in the same situation as I am. I was worried that nothing could be done for me. I will look into the website you gave me and also the book. thanks again!