On Tuesday the 17th I saw my rheumatologist. The appointment was long and it was the usual. I wanted a steroid infusion to get on top of the inflammation and pain. She refused, because she believes that my inflammatory arthritis is not severe enough for a steroid infusion. We debated, but ultimately she just refused.
Her idea was to switch me to my final biological. Fail Xeljanz, on the basis that my liver enzymes are rising again, and I had been in the ER the previous Friday with severe upper GI pain.
I asked her if this would definitely be my last biological. In Australia you only get five biologicals in your lifetime. After that, you’re out of treatment options. There are ways around that, in some special cases, but she confirmed that she would not be going to pull any strings for me. She threw around the fibromyalgia word and ‘pain sensitisation syndrome’ and I just smiled and nodded.
So. Given that this is my last shot at a biological I asked her for Rituxan. If I’m on my last shot, then I want the biggest guns there are.
She said no, she doesn’t use Rituxan often, and she would choose Actemra.
Another debate. Rituxan treats vasculitis and neurological conditions as well as rheumatoid arthritis. She agreed, but she said she was now thinking that there is much more going on with me than rheumatoid arthritis or mixed connective tissue disease. That my combination of neurological symptoms, eosinophilic disease and rheumatological symptoms did not make sense to her and she didn’t believe another biological would help anyway.
I said why bother then?
She then told me that she would consult with my Immunologist/Allergist and they would discuss my case and decide together what to do next.
It is ten days later. As of 1pm I had heard nothing. I left three messages. Pain levels are out of control at night, I’m not getting enough sleep, desperation is starting to build again. I left one more message this morning.
I started writing this post and was about to say I’ve had enough, I’m bumping my steroids to 25mg and I’m just going to live as long as I can, as well as I can, and just hang in for September and my new rheumatologist.
And then she called back.
And to cut a very long conversation short, she and my Immunologist had a long conversation of their own about me. The both reviewed all my records together. They noted my lacklustre response to most treatments, but very good response to prednisone. My immunologist stated again that she has NEVER seen a case of Eosinophilic Esophagitis in someone on 15mg of prednisone. Never. She said she would have considered that impossible, but here I am with conclusive biopsies, so the diagnosis is unequivocal.
They ran through my neurological scans, and my Lumbar puncture results. They both believe that the most likely diagnosis is not Rheumatoid Arthritis (or not only rheumatoid arthritis), but some form of vasculitis. Clearly inflammatory arthritis is a big part of the picture, but there are other things going on that are being masked by all the steroids.
The only way to prove this?
Taper down the prednisone. Because prednisone masks everything. It is the miracle drug that takes down all forms of inflammation and ‘fixes’ everything. And makes it then undiagnosable, because the symptoms are gone.
Is this sounding familiar to anyone? Yes, we’ve had this exact conversation before, at least twice. Must go search for that blog post. This blog has been so incredibly useful for me, in remembering what was said and done previously. But she didn’t follow through last time. When I called her and told her I felt like I was dying, she did not call me in or order tests, she told me to bump my steroids. I was so sick and so desperate, that I did exactly that. It sounds stupid now, but I get to the point where I can’t think, can’t reason, can’t remember.
I have called my ex husband and told him I need his help this time. I need him to back me. We ARE friends, and getting along very well right now. Last Sunday we discussed Tinder dates (his) and chats (mine) and we helped eachother with our profiles. To find positive traits to write about ourselves.
If we can do that, he can be my friend, and help me through what will be rather a rough patch. I just need him to remind me what the point of all this is. And to remind me to go to hospital if it gets bad. Don’t take matters into my own hands and do a prednisone burst. Got to hospital if no one is listening. And he will have to take care of the kids.
But back to my rheumatologist.
I told her we’d done this. That we’ve done this several times, and each time I have fallen apart physically. The joint pain becomes constantly severe, but worst than that, I get a lot of neurological problems, extreme fatigue (as in can’t raise my head from the pillow) and mental confusion. I have balance problems, arm and leg numbness, vision problems, I reminded her that last time she sent me off for neurological tests fearing Multiple Sclerosis, which the symptoms fit.
My Lumbar puncture showed no oligoclonal bands, so my neurologist had no interest in looking further. There was a high protein level, which points to CNS inflammation. Hence, my original neurologist’s thoughts of CNS vasculitis looked possible.
But then I had an MRI and MRA that was clear, and so the neurologist stopped looking. I did a steroid burst and then all those symptoms went away. As they would with vasculitis.
My rheumatologist said she remembered and asked me to do it again. Taper 2.5mg per week until I get to 7.5mg. And then 1mg per week until I get to 5mg. And at that point, she will reassess.
I told her of course I will do this, but that’s a much faster taper than I have done previously. Previously it has been 2.5mg per month, not per week. And below 12mg, it has been 1mg per month.
She said try to go per week, because we need to get to the bottom of this. She wants to get me down to five and then start the diagnostic process from the top. She promised she will look further this time, she will do biopsies and not rely on scans (which are not conclusive), which she realises she should have ordered before.
So I agreed. It’s not like I have a better option.
She reassured me that after talking with my Immunologist she no longer beleives I have Fibromyalgia. And that I have objective test results showing inflammation, eosinophilia, and granulomas in my lungs. There’s also the gastritis, and liver enzymes. And the small wierdnesses in my bloodwork, that never quite add up right…high platelets, high white cell count, high eosinophils, high neutrophils, but they all come and go, never there long enough to paint a picture. She asked me to send her copies of my lumbar puncture results, because the neurologist never sent them all to her. I said I would – this is why It pays to keep copies of your own results. The real problem with complex patients is the abysmal communication among specialists and consultants.
She reassured me again that she does believe that there is an underlying disease process but they haven’t figured it out yet. She wasn’t trying to brush me off, and she apologised for leaving me hanging. She said she’s ready to start from the top with a clean slate…as soon as I get to 5mg of prednisone.
I’m not looking forward to how sick I am about to get, but OK. This is the only way forward. She convinced me that she is on my side again. I believe very strongly that’s due to my Immunologist’s input. But right now, I have them both interested, intrigued even, and fired up. She also said she would get in touch with my original neurologist and re-examine his findings.
So prednisone taper it is.
I also have a second opinion lined up with another rheumatologist. I may be able to get an appointment with a new rheumy within the next three months. So I’m keeping that in my back pocket as well.
But on the whole, I guess this is a good thing. She’s paying attention. She is promising that this time she will follow through. We will not just do a prednisone burst to get me back on my feet. She will admit me to hospital if needed.
Fine. I can’t help but be cynical because I’ve heard this before, but what choice do I have really? I just have to keep this blog post close…so I remember what she promised. And I can remind her, and remind myself.
And in the meantime, I’ll get as much sorted as i can before the wheels really fall off.
I’ll drop to 12.5mg on Sunday. I might get through that week OK. Then the following Sunday I’ll drop to 10mg. And from there, it’s anyone’s guess.
Writing it down, it sounds way too fast. But everything I’ve read says you can taper to 10mg fairly quickly, below that you need to slow down. So I’m sure it’s safe, but it’s not likely going to be pleasant. Worst case I can drop by fortnights if need be. It will just take a little longer to get there.
And sometimes it has to get worse before it gets better. And this time, it will get better. I feel like she will run the appropriate investigations, maybe I really will find out for once and for all what’s going on with my body. And maybe find a treatment that works. Ridiculous optimist maybe, but I really feel like this will actually happen. I feel really quite positive.
May as well be an optimist. It will help me get through the weeks ahead.