Can you have RA for 7 years without any joint damage?
Posted , 5 users are following.
Hello everyone. I am new to your site. I have a question. I was diagnosed with RA about 7 years ago. I was put on the standard medications and biologics. About a year ago I moved and now live in Arkansas. I saw a new rheumatologist and he says that all of the pain I am feeling now is related to fibromyalgia, not RA. He doesn't think my RA is active and is in remission. Therefore he won't put me on Enbrel.
My question is, can you have RA for 7 years and not have any damage to your joints? I have had xrays of my feet and hands and it doesn't show any RA. I feel the same as I have felt for years and Enbrel was the only thing that helped me. I am wondering if I should get a second opinion or if my pain really is all from fibromyalgia right now. The pain is awful and almost unbearable even with pain meds. Thanks in advance for your help.
0 likes, 9 replies
EileenH simone03
Posted
I don't have RA, I have PMR (RA without the joint damage to all intents and purposes) but many of our patients meet this attitude from rheumies: I can't see symptoms therefore it must be fibromyalgia. And of course it gets them out of doing much.
I wouldn't be seeking just a second opinion - I'd be actively interviewing for a new rheumy! If Enbrel kept you pain-free and stopping Enbrel has resulted in a return of pain - it seems reasonable that you need Enbrel to remain pain-free. The logical step would be to try it again - but of course having stopped it you have to hope it still works for you.
simone03 EileenH
Posted
Also, I have been having extremely severe lower back pain and if I lay on the right side of my back at night, I wake up with my whole thigh completely numb. I even used a pin to my leg and couldn't feel a thing. I can still walk when it's numb but it scares me. I'm afraid I have a problem with a discor nerves or something and he just shrugged it off and said a lot of people have disc problems. He wouldn't prescribe an MRI. I am definitely going to see my primary care doctor about my back.
EileenH simone03
Posted
And that rheumy should come with a health warning; "This is not a healthCARE provider".
simone03 EileenH
Posted
inger07187 simone03
Posted
Rowbirdie simone03
Posted
simone03 Rowbirdie
Posted
inger07187 Rowbirdie
Posted
EileenH inger07187
Posted
"Osteopenia and osteoporosis are very common in patients with RA.[30] The development of osteopenia in RA patients appears to occur independent of corticosteroid use and is directly linked to elevated levels of the receptor activator of nuclear factor-kappa B (RANK) ligand, which is expressed by T cells and promotes osteoclastic bone resorption.[30-32] Osteopenia in RA is directly associated with markers of inflammation.[32] The periarticular osteopenia that occurs in RA patients is likely related to high local levels of IL-1 and TNF-alpha, which are produced in inflamed RA synovium and which augment RANK ligand production.[33] IL-1 inhibitor anakinra, anti-TNF therapies, and the new RANK ligand inhibitor, denosumab, block IL-1, TNF-alpha, and RANK ligand, respectively, and have been demonstrated to improve RA-associated osteoporosis and joint space erosions"
but both the Cleveland and Johns Hopkins sites also say intraarticular osteopenia is associated with RA.
I have to say, after 6 years of reading about PMR signs and symptoms which has included a LOT about fibro and RA as well as they can often be similar in presentation with a lot of overlaps - I have yet to come across anyone who suggests fibro as a confuser for RA!
Beware though of thinking everything will show up on MRI - it too has limitations. Muscular problems - unless it is damage - don't for a start. And often reading the MRI or CT results depends on what they are looking for. If they start with a fixed idea they can easily miss something else. I was told quite categorically that lower spinal pain was due to wear and tear and i'd have to live with it - which since I was not yet 60 and couldn't walk for more than a few minutes without excruciating back pain was not what I needed to hear. The mistake I made then was to believe the orthopod. When I finally ended up in hospital unable to move it was identified as sacroiliacitis that was being caused by spasmed muscles in my back, which was as a hard as a wooden floor. The physio I saw was flabbergasted and couldn't believe the doctor hadn't recognised a muscle problem. I won't say it is 100% - but I have no pain unless I'm daft and try to carry something too heavy on one shoulder, using a backpack is much better.
I've worked in healthcare for a long time - I've rarely come across doctors who have more fixed ideas than some of the rheumies I've met! These days they also seem to match surgeons for social skills ;-)