I follow this forum daily and have learned from all of you. I seldom post, so I will briefly tell you my story. I am 44. I was diagnosed with RA 10 years ago and never went back to rheumatologist because didnt want on meds with side effects. My feet was and still is my main area of 'mild' pain. I functioned fine for 8 years taking only advil for pain and continued with my life. I broke my foot 2 years ago only by walking barefoot on hardwood floor. Upon x-raying my foot, dr. was very alarmed at the condition of my foot and later my feet. I had very apparent erosions and deterioation of my toes. Keep in mind, I am still experiencing very mild pain with only occasional 'flare ups' that made walking somewhat uncomfortable. But, for the most part, I felt and feel basically fine. I have been under a rheumatologist care since that time. He started me out on five 2.5mg. methotrexate and has gradually increased me to eight 2.5mg. My sed rates and inflamation levels in my blood(can't remember exact numbers) are not where he would like them. He claims if the medicine was working like it should these levels should be down. He has been talking with my for 6 months about starting Enbrel. When he x-rayed my feet last year they showed continual deterioation in 1 year and that is when he gradually started increasing the methotrexate.
Today was my visit the dr. and since it had been a year, he x-rayed my feet again. Good news- 9 toes showed no further erosions and did not look any worse than they did last year. Bad news- 1 toe shows considerable more damage. This toe stays a little swollen but still the pain is not significant. He is strongly urging me to start with the Enbrel. He finds it unbelievable that I am not experiencing more pain that I express. I know I have a high tolerance, but I seriously am not in a great deal of pain. That is why I find it hard to justify taking such a strong medicine. I do know the liver side effects of methotrexate and that scares me also. I do know the major side effects of Enbrel are rare like the life threatening situations.
Ideally, I guess I feel like I can just keep on going on the same track I am own. Stay on the methotrexate, keep my dr. apts. and keep my blood checked. I suffer from extreme anxiety and have finally been better that I have been in years. I am a chronic worrier mainly about health issues and I am petrified of Enbrel. I know I would feel totally different about taking Enbrel, if I felt bad. I would do anything that would give me good days to enjoy my job and family...but I am not there yet. I hope this makes sense. I was just wondering if anyone could relate to my situation? Have you been diagnosed with RA but yet feel good, but x-rays and blood work dont look as good as you feel? Sorry this was so long. Thanks in advance for any help you may give me. Sandy
Sandy, I am new to RA as well so I don't know how much help I'll be but I am on Enbrel and have absolutely zero side effects. My mom is on only methotrexate, nothing else. I guess if just the metho is working for you then that's fine but if you are showing some deterioration even witht he metho, then maybe you should add something else to the mix because while it's a toe now with irreversible deterioration, as time goes by it may escalate to something else and then somethng else and so on. The damage is irreversible, you won't find out that it's there until it's too late. Just my two cents. Hopeo you're ok.Sandy-I am sorry your detrioration is progressing. It is not so much pain level that I would base a decision on whether or not to go on Enbrel, but a deterioration level. That is what needs to be slowed down as much as possible. I think it is great that you are not in a lot of pain and I hope that continues for you. It is awesome that you still are active and can enjoy a basically normal life. I really worry about your progressive and somewhat aggressive deterioration tho.
My youngest daughter is 12 and has JRA (juvenile rheumatoid arthritis) and Enbrel and mtx is the choice of meds the docs use for the kids. There are great results with it for kids as well as adults.
I can understand why you feel about Enbrel the way you do. Why am I going to take this when I feel pretty good? Maybe look at it as wanting to continue to feel as good as you do and that means slowing down that deterioration as much as possible. It is not normal to break any bones simply by walking across a hardwood floor. That is some serious stuff there.
Plaquenil is also another route to go, but it is so mild, that I worry it won't slow down the progressive deterioration. You can try it, but I feel it would be a waste of your time and money.
We all worry about long term side effects of these meds. Some people take natural supplements to help with that. If you decide to do that, please check with your doc first to make sure what you are taking you can take with your other meds safely.
Hope I was able to help you out some and let us know what you decide to do.
Too many people think that pain is the problem with RA..its not its the joint damage.
You can function right now but what happens in 5 years when your feet have deterioated to the point that you can't walk. You have already expereinced 1 fracture from a normal every day activity. Your feet already got to this point by you ignoring the disease.
The MTX has slowed the disease you need to stop it. None of us want to take medications but will do what we must so that our bodies can function for its entire lifetime
Dear Sandy, Oh my that is a tough situation. Most of us tend to want to do the least we can with the meds. I rejected treatment for 5 years and have almost no use of my little toes. I think, if you can get over the fear of Enbrel you might 'try it'. It will take a while for it to work and show improvement, and all that, but if you trust your doctor, you can go with what he says (and the insurance will pay? All this is terribly expensive). You can ask him for another choice. I take remicade (same stuff like Enbrel), but I need to go into the office and have an IV, and have it drip into my body (every 8 weeks). You sit for 3 hours, but it isn't painful and of course, no injection. I take MTX by mouth 6x 2.5. I've never take Plaquinel with MTX?
stopping the damage is real important, so your doctor is on the right track, but you need to make up your mind. It is your body!
Good luck, Sarah
Sandy; I'm sorry to hear about your problems; and I'm glad to hear you aren't in too much pain from it all.
The pain that can eventually be associated with the deteriation can't be reversed and they'll be little they can do about it later. If your x-rays didn't show the evidence they are showing I'd say stick with what you're doing.....but considering the firm evidence; and that fracture you've already suffered from doing nothing unusual; I'd suggest you rethink things.
I know these medications are scary; but you are still very young. Do all you can to prevent problems that you can't reverse later.
Hope to hear more from you in the future. Glad you're here.
Good Luck.
Sorry to be so blunt but with continued deterioration you need more help. You need to understand you are chosing between risking enbrel and not being able to walk enough to handle daily life in 10 years (notice I didn't say wheelchair - just talking about hobbling to the kitchen).
I am there today at age 53 - 10 years ago I could dance.