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...
Hello all, this is my very first post on this site. I've been a lurker since 2012 and have valued the first-hand information, compassion and understanding I've gained from all of you about living with this disease. THANK YOU!
My rheumy is on staff at a very large, distinguished teaching hospital in my city, but her approach is conservative. When I go in for my visits (every 3 or 4 months), she tells me my blood work always looks "great" and that she thinks I am doing really well. She had me on MTX (12 mg/week) and Plaquenil. At my last visit in January, however, I pointed out that while the medication seems to control the terrible fatigue and joint pain I had at the onset, the MCP joints on my hands are becoming very enlarged and I have "lumps" forming between my knuckles and a slight ulnar deviation to my fingers. She agreed to up my MTX to 20 mg/week. I'm tolerating the increase just fine, but I am definitely starting to feel more stiffness and joint pain in my hands and wrists.
Are these changes to my hands a sign that the MTX is no longer working? Should I advocate for another DMARD or a biologic? I don't know what's considered "normal" disease activity, and I'm afraid to upset the apple cart since I can do most things I want to do and I'm not in a considerable amount of pain. I am also reluctant to jump to a biologic because of the side effects---and the expense. I always told myself that I would go to a biologic only if I felt awful and couldn't move freely. I'm almost 50 years old and have many years to live with this disease. My doc told me my RA is "mild"---should I just deal with the deformities until I'm in pain? Any advice you can give is greatly appreciated! My next appointment is in April.
My rheumy is on staff at a very large, distinguished teaching hospital in my city, but her approach is conservative. When I go in for my visits (every 3 or 4 months), she tells me my blood work always looks "great" and that she thinks I am doing really well. She had me on MTX (12 mg/week) and Plaquenil. At my last visit in January, however, I pointed out that while the medication seems to control the terrible fatigue and joint pain I had at the onset, the MCP joints on my hands are becoming very enlarged and I have "lumps" forming between my knuckles and a slight ulnar deviation to my fingers. She agreed to up my MTX to 20 mg/week. I'm tolerating the increase just fine, but I am definitely starting to feel more stiffness and joint pain in my hands and wrists.
Are these changes to my hands a sign that the MTX is no longer working? Should I advocate for another DMARD or a biologic? I don't know what's considered "normal" disease activity, and I'm afraid to upset the apple cart since I can do most things I want to do and I'm not in a considerable amount of pain. I am also reluctant to jump to a biologic because of the side effects---and the expense. I always told myself that I would go to a biologic only if I felt awful and couldn't move freely. I'm almost 50 years old and have many years to live with this disease. My doc told me my RA is "mild"---should I just deal with the deformities until I'm in pain? Any advice you can give is greatly appreciated! My next appointment is in April.
Lynne
Hopefully, once again, you'll be good as gold.
I think you should do what you feel comfortable with.
Welcome-glad you stepped in out of the shadows. To me, deformities put you in a category other than "mild". Depending on what you like to do with your hands, deformities can really ruin your day. Have you had any problems with large joints? It might be worth getting a second opinion.
Plenty of people take biologics with few or no side effects, although everyone, of course, is different. As far as the cost goes, I'm currently paying $5 a month for mine, after insurance and the manufacturer's co-pay program. Biologics can be scary, but untreated disease is also pretty frightening.
Trish, so glad to hear you are in remission! I was kind of on the same track---the MTX seemed to be working and I could handle a flare here and there. But then this whole hand thing came on pretty quickly. One of the two meds is still working, though, because I don't feel nearly as rotten as I did when I was first diagnosed.
Bcatz and 2leftfeet, thanks for the support! I am nervous about going to a biologic, but I don't want to end up wheel-chair bound like my grandmother. I hate sounding like a whiner, though, because I know so many people are in terrible pain and confined to their bed, chair or home---even with medication.