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...
Last Wed I had my other Rituxan treatment. It went fine. I then had my follow up appt with the rheum this past Mon. This is where I got aggravated.
I told him I thought I was doing pretty good on the Rituxan but still had a few problems and even a couple of new ones. My neck has started to pop kind of hard when I move a certain way and also I told him my Achilles' tendons hurt when I walk. He just shook his head and told me that the Achilles doesn't get involved with RA. He told me to do stretches of my ankles and looked at it to see it wasn't swollen. Then repeated several times it has nothing to do with RA.
Then somehow we got on the subject of the whole disease itself and he told me that he diagnosed me with RA just to get insurance to approve my treatment. But otherwise he said that because I first presented a long time ago with dermatomyositis, it was not surprising to have another inflammatory type dz pop up and my 1st blood tests at the beg were neg, so he just calls it inflammatory polyarthritis. He said if I had just presented the way I did without first having dermatomyositis, it would look more like RA. Well, I asked don't most people test neg right off and he said yes. Then he said didn't I test you again? Of course he had not! It turns out that Rituxan is the only one that can change the outcome after treatment so if he does test me, it will most likely be neg again since I've been on treatment for a yr. These were his words. Before he walked out he said next time when you have your treatment you'll be due for labs again so we'll run another test. He just said it would be negative from the Rituxan!
I had pretty much every joint involved symmetrically. My shoulder surgery pathology showed chronic synovitis and fibrocartilage with degenerative changes. I'm stiff every morn and my hands, wrists and feet were like balloons from the swelling. My crp was sky high but they explained the other tests were probably too early. None except crp have been run since.
I had the MRI today of my knees. I will know something probably tomorrow. But after it was over, the tech asked me if I had had surgery in my right knee. I have not but I wonder what they were seeing to make her ask that??
I know I'm getting the important meds I need for my disease but I think that a proper and precise diagnosis is important for things such as disability. I think I should've had the proper blood tests redone after a time period. Also, he never ordered even 1 X-ray for me. I feel like I have a lot of damage everywhere not just my knees and shoulder. This will certainly be a lifetime of back n forth to fix things. In a way I feel failed on some levels but also very lucky for my Rituxan treatment.
I told him I thought I was doing pretty good on the Rituxan but still had a few problems and even a couple of new ones. My neck has started to pop kind of hard when I move a certain way and also I told him my Achilles' tendons hurt when I walk. He just shook his head and told me that the Achilles doesn't get involved with RA. He told me to do stretches of my ankles and looked at it to see it wasn't swollen. Then repeated several times it has nothing to do with RA.
Then somehow we got on the subject of the whole disease itself and he told me that he diagnosed me with RA just to get insurance to approve my treatment. But otherwise he said that because I first presented a long time ago with dermatomyositis, it was not surprising to have another inflammatory type dz pop up and my 1st blood tests at the beg were neg, so he just calls it inflammatory polyarthritis. He said if I had just presented the way I did without first having dermatomyositis, it would look more like RA. Well, I asked don't most people test neg right off and he said yes. Then he said didn't I test you again? Of course he had not! It turns out that Rituxan is the only one that can change the outcome after treatment so if he does test me, it will most likely be neg again since I've been on treatment for a yr. These were his words. Before he walked out he said next time when you have your treatment you'll be due for labs again so we'll run another test. He just said it would be negative from the Rituxan!
I had pretty much every joint involved symmetrically. My shoulder surgery pathology showed chronic synovitis and fibrocartilage with degenerative changes. I'm stiff every morn and my hands, wrists and feet were like balloons from the swelling. My crp was sky high but they explained the other tests were probably too early. None except crp have been run since.
I had the MRI today of my knees. I will know something probably tomorrow. But after it was over, the tech asked me if I had had surgery in my right knee. I have not but I wonder what they were seeing to make her ask that??
I know I'm getting the important meds I need for my disease but I think that a proper and precise diagnosis is important for things such as disability. I think I should've had the proper blood tests redone after a time period. Also, he never ordered even 1 X-ray for me. I feel like I have a lot of damage everywhere not just my knees and shoulder. This will certainly be a lifetime of back n forth to fix things. In a way I feel failed on some levels but also very lucky for my Rituxan treatment.
Although it is comfortable to have a nice, tidy diagnosis, he may be doing you a favor by keeping it vague. For example, Achilles tendon involvement is very common in psoriatic arthritis. (I don't know if he is correct about RA not affecting it. Maybe it doesn't in the textbooks.) By keeping you in a grey area, the door is open to try a biologic which is approved for RA but not PsA, as well as on that is only approved for RA. There are a lot of autoimmune diseases out there.
Linda