I attended my 2nd visit with my Rheum this week, armed with noted and a list of questions. It was a confusing and somewhat disturbing appointment for me. We discussed my history and pred doses thus far (May 1 - 20mg, May 15 - 15mg, June 6 - 12.5mg, June 14 flair and CRP up and back up to 15mg where I stayed and am now).
She said I had been at 15mg for too long now and set a very specific taper schedule for me (12.5mg for one month, 10mg for a month, and then she would consider reducing by 1mg). I challenged her about why I had a flare in the first place (was the taper too fast, to much of a drop from 15 down to 12.5, what about my weight being a factor, what about ongoing pre-existing chronic knee conditions that have yet to be treated). She outright refused to let me drop by 1mg from 15 down to 14, saying that I may not even have PMR. When I asked her what I did have then she mentioned seronegative arthritis?? I reminded her that my blood tests for RA were both negative and she replied that some people with RA don't have the antibody in their blood. I mentioned I have never had finger, hand, wrist feet or ankle problems or pain, and reminded her that I had classic PMR stiffness and pain (bilateral) in shoulders, neck, glutes, quads, hamstrings etc, and ongoing pain in my knees (MRI has shown chronic past injury and meniscal tears of all types, ACL tear, etc). She said PMR does NOT effect your knees! She examined me and asked about my hands, feet and ankles and I told her once more they are not painful or a concern. I am more concerned with having my diagnosis changed now that I am already on pred, and with having to wrap my head around a new possible condition. She smiled and said well having RA isn't as bad as PMR, because PMR lingers and Methotrexate could help me taper the pred faster.
When examining my knees she mentioned the extra fluid in my right knee and mentioned she would like to extract some with a needle and send it away to be examined, and if there were certain cells present it would determine if the knee issues where mechanical or rheumatic. When I asked her if she read the MRI's sent to her, she said no, so I refused mentioning that I am meeting with an ortho surgeon in August and I will ask him about it. She made me right down what she wanted me to ask him to test for if he extracted fluid. She also told me that my surgeon will want me to be on 5mgs of pred or lower when I have procedures/surgery done to reduce chance of infection and casually mentioned that I will be at that level by the time if have any procedures done (not sure how she knows how to predict my taper AND the surgeons schedule/availability).
She did agree to send me for a bone density scan to get a baseline, and advised me to see my optometrist as usual to keep an eye out for cataracts which is a side effect of the pred. She also acknowledged some of the side effects I am experiencing (mood swings) and how this can affect relationships and the resulting stress. She was ok with my not starting my next taper down to 12.5 until after July 28 (our wedding reception and housewarming).
My gut is telling me that I am being set up for failure with my tapering given her schedule. I already flared going from 15 down to 12.5 so I'm nervous about that. I briefly spoke to my gp before my appt with the rheumy he referred me to, and feel his initial diagnosis of my PMR is correct (my gp has a colleague in his practice that has PMR). My gp is also very easy to talk to and very supportive. I am considering asking to see a different rheumy and being under his care until then.
Has anyone heard about diagnosing a rheumatic condition from taking fluid from an inflamed part of the body (such as the knee)?
Sorry for the length, and thanks for reading. I find this forum so helpful! I trust your insight and wisdom and look forward to your response.