My rheumatologist has changed much since I first started seeing him. He’s interested now. He accepts my arthritis is real, he still wonders whether its more rheumatoid, psoriatic or ankylosing spondylitis. All all three. Or two out of three. I have elements of all those diseases. My first diagnosis was mixed connective tissue disease, and that’s a combination of rheumatoid arthritis, lupus, myositis and scleroderma.
He finds me interesting. My collection of rare diseases and symptoms don’t stress him, because he’s very clear on he’s treating my arthritis only. The “other stuff” is out of his wheelhouse. So he’s comfortable with a complex, medically rare patient.
Today there was a medical student in the consult. I like having medical students, because these are people at the very start of their medical career. What they learn in these consults when they are observing will shape what kind of doctor they are. I always address them as well, and don’t pretend they’re not in the room. My rheumatologist asked her for her opinions, and included her in the treatment plan, and explained my backstory very succinctly. It was nice to hear myself be described as an intriguing patient with many rare diseases in a positive light.
He asked how things have been and I told him not good. I explained that my fatigue levels are terrible, I can’t get lower then 4mg of prednisolone (and 32mg of hydrocortisone). I described my brain fog as being debilitating, can’t think straight, can’t make simple decisions and spending most of my day lying down. I am using my walker again, because my balance is terrible, and I need the support of the two handles. My foot pain is terrible, peripheral neuropathy in my feet is making walking extremely painful and because I can’t feel my feet properly, I lose balance. My hands are similar, I am clumsy and have lost a lot of grip strength and fine motor. I have a lot of muschle aches that have been steadily increasing over the last year. I wake up with my muscles hurting, my thighs feeling like they are clenched and I can’t unclench them. My calves have nerve pain that is similar to what I experienced with the degeneration in my spine…but different. And the spinal nerve compression was much more severe on the left side. This is symmetrical and climbing ever higher. Prednisone seems to help, when I was on 15mg of prednisone it pretty much went away. I told him I realise most of this is not arthritis, but what was great about the olumiant is that it helped a LOT with the brain fog and fatigue. I had much more energy on olumiant and rinvoq hasn’t done that for me.
He said first things first, we need to get to the bottom of the neuropathy and referred me back to my neurologist. I have had nerve conduction studies, that were “inconclusive”. I don’t know what that means, but it didn’t lead to any kind of diagnosis or treatment. I told him that, and my rheum said “Lets do them again.” He mentioned that the muscle pain could be some kind of myositis, or inflammatory muscle disease, but he felt it sounded more neuromuscular and would ike the neuro testing first, before investigating other possibilities.
Cool. I can do that. I’ve been arguing with myself as to whether I should go back to my neurologist. So now decision made. I will.
Next. My arthritis treatment. JAK inhibitors have been the only class of medication that help my arthritis a LOT. Methotrexate helps some, so we’re increasing the dose to 15mg. See if that helps.
I have take xeljanz and Olumiant previously, both were fantastic. Both caused my liver enzymes to go crazy. Olumiant was much worse, in the 400s. Xeljanz was only in the 200s. My hepatologist put me through a battery of tests at the beginning of the year, and told me never to take JAK inhibitors again. But there are no other options left.
My rheumatologist asked how long it took xeljanz to take effect. I said to the best of my recollection I could feel the difference in two weeks. He said “I have to do something creative here…something unique. How about we try xeljanz for two weeks, and then rinvoq for two weeks. The xeljanz will boost the effect, but hopefully because we’re alternating with rinvoq your liver will be protected.”
Cool, I say. I loved xeljanz. Happy to try again, just have to be very diligent with my liver blood tests.
He explains that he’s never done this before, and there are no studies, but he’s thinking outside the box, because JAK inhibitors are our only option and rinvoq clearly isn’t cutting it. He said he was going to discuss it with his colleagues, but if I’m happy to try, he’d give me some samples of xeljanz, two weeks worth, to see what happens.
I agreed. I feel so rotten I’ll try anything and xeljanz was very good to me in the past. If the consensus from his colleagues is that it’s a terrible idea, he’ll call me. But I have some samples now and I plan to start taking them tonight. Wish me luck!
Last thing, foot skin condition. I have had this thickened, scaly skin condition on my right foot for years. Lately it has gotten much worse. Deep fissures form on the soles and sides of my feet, and its very painful and an infection risk. Calciprol clears it up (as does steroids) but as soon as I stop applying it, it comes straight back.
Both my rheum and the medical student had a good, close look. My rheum said he didn’t know if it was psoriasis or something else. Maybe autoimmune, maybe not. I was hoping it would look like something he’s seen before, but no. He couldn’t diagnose on the basis of seeing something similar before. He asked me to take lots of close up photos and email them in to him. He took a few himself. And he will discuss this with his colleagues as well.
I like doctors who are happy to say “Not sure what that is, or what’s causing it. Going to talk to my colleagues.” I wish more doctors would do that. Most will not communicate with eatchother at all. Its one of the hardest things about living with multiple chronic illnesses – having multiple doctors all with different specialties that never talk to eachother.
And that was pretty much it. I have to make an appointment with my neurologist and start the xeljanz tonight. Risky treatment plan, have to watch my liver very carefully, but the only other option is to increase my prednisolone. No doctor will approve that.
In days gone by low dose prednisolone was considered an option, not a good option, but still an option. These days prednisone is seen as so dangerous (in terms of long-term side effects) that doctors won’t prescribe it long term. People like me who have already been on it long term have no choice to continue, because most of us have developed adrenal insufficiency and our adrenals no longer function. I’ve been working with my endocrinologist for years to try and get my hydrocortisone to the proper cortisone replacement dose, but I can’t manage that. I was off presnisone completely for over a year, but at the beginning of the year I had to start taking it again. That was probably a big mistake, but at the time I couldn’t function, and my arthritis was megaflaring daily. So I took the prednisone.
A this stage of the game, there aren’t any good options left, I just have to go with the least worst option. And the one that will get me on my feet, even if only for a little while.