It was great to see my rheumy and actually give her good news. Naturally the messages I left with the receptionist bore no resemblance to the message she received. She had been told that I was 100% better and didn’t need any more medication.
Being smarter than her receptionist, my rheumatologist took a while to get around to making an appointment for me, but she DID make an appointment to see me.
She wasn’t surprised that I was not ‘100% better’ as the message stated. She asked me what I meant by I didn’t want any more medication.
I told her the message was all wrong and how about we start at the beginning. Which is:
Injectable methotrexate has given me 40-50% improvement. I have 3 or 4 days a week where I have 5 or 6 hours of the day where I am functional, pain managed, fatigue present, but manageable.
I have about 3 knock down days still, where either severe pain in all my joints or brick wall fatigue keep me home and one the couch.
I take between 40mg and 100mg of oxycodone every day.
But I just tapered down to 11mg of prednisone. And though I can already feel the drop (more fatigue, more pain), usually I am close to comatose on this little prednisone. This is the lowest dose I have been on prednisone, and not been hospitalised, in at least 3 years.
So this does represent something of a miracle for me.
And I told her I was so incredibly glad to be able to give her some GOOD news for a change. And I could see she was truly happy to hear it. I’ve always felt she gets emotionally involved with her patients. With every drug failure, she seemed to take it so personally. She is possibly too empathic for a doctor. I’m sure she carries a lot of people’s pain. And maybe sometimes she has to pull back from that, as she did with me for the last few weeks.
She was thrilled the methotrexate was working having such a pronounced effect. She asked me if I thought 7.5mg of prednisone was realistic to try and taper too. I said I am committed to trying.
My neurologist has given me the all clear to go back on biologicals, so she suggested that we give Orencia one more chance.
For many reasons. Firstly, I am on the equivalent of 20mg of methotrexate now. It has given me 40-50% improvement. Orencia gave me 20-30% improvement. What if both together they gave me 60-80% improvement? My life would be very different! Secondly Orencia has been shown to work much better in combination with methotrexate. And thirdly the only serious side effect I had from Orencia was high blood pressure. The high cholesterol and high blood sugar was blamed on prednisone. They have normalised since I have been off Orencia, but I will have monthly bloody tests to monitor all of these. She also noticed my thyroid is out of whack. Which is likely contributing to my massive weight gain, and extra fatigue.
She had also consulted with my shoulder surgeon. After my last appointment with my rheumatologist, she was losing hope completely. She was even doubting my diagnosis. If it was even inflammatory arthritis we were dealing with. She consulted with my surgeon, and she showed me her response. My shoulder AC joint, the synovium was severely inflamed. There was some osteoarthritis damage, a huge bone spur, but it was clearly an ‘RA shoulder’.
So my rheumatologist was reassured that I do indeed have severe Rheumatoid Arthritis. And that biologicals are my best chance at a better quality of life. I agree wholeheartedly that we should give Orencia another shot, so I’m feeling pretty positive about things. Even though I spent today confined to the couch. (I needed a recovery day from the actual fun I had on the weekend.)
The only real downside is my spine. My cervical spine has moderate degeneration, but my lumbar spine is severely degraded. Although it’s now considered osteoarthritis, it is likely the result of ten years of uncontrolled inflammation of my spine (spondylitis). And there is not much that can be done about it now. My rheumy is hoping that she can improve the lumbar spine pain with medication (methotrexate and Orencia) by lowering inflammation levels. She said surgery isn’t considered unless there are serious neurological deficits. I have mild deficits. And a fear of spinal surgery, so I’m not rushing for that option. She also mentioned an electrical implant, which my pain management doc has also mentioned, but she said in her experience the infection risk was not worth the level of pain relief achieved.
The worst pain that I experience these days is in my spine. It is preventing me from exercising. I need to exercise, for my inflammatory arthritis. But my lumbar spine pain definately gets worse when I do. Catch 22.
There really isn’t much to do there. Maybe I’ll go see my pain management doc. Maybe I won’t. I’m not sure. I want to be able to exercise again, cardio exercise, raise my heart rate. Get fit. The state of my spine is going to make that really tough.
I don’t know what to do. So I just won’t think about that for a while. Tonight is methotrexate night and on Wednesday I’ll start Orencia again. And then once again, we wait and see.