I saw my rheumatologist today. I haven’t seen her for a while. She has been in the holding pattern, waiting to see what my allergy results would show.
We cut to the chase quickly and agreed that neither one of us knows what to do next.
She says she wonders if any drug will work…but she has another patient like me. The only other patient like me. Who has crossover disease, Mixed Connective Tissue Disease (MCTD), elements of rheumatoid arthritis, lupus and myositis. And constant pain, out of proportion to the inflammation she can see, or detect when she palpates my joints.
She admits freely that my ultrasounds, nuclear bone scans and shoulder surgery show her the inflammation is there. But it’s subclinical. She can’t detect it with her senses. Other modalities CAN detect it, however, so she knows it’s there. She does believe it’s there. So important to me as a patient. To be believed.
She pulled out old ultrasounds of my hips, my spine, my shoulders. She compared it to the shoulder MRI, taken within weeks of one another. The MRI showed no inflammation nor bone edema. The ultrasound showed plenty of inflammation. My surgery, a few weeks later again, proved beyond any doubt, which scan was correct. My surgeon told me, and specifically wrote to my rheumatologist to tell her what she’d seen with her own eyes. A text book rheumatoid joint. Severely inflamed.
So scans are limited in what they can show, also. Which is why sometimes you need more than one type of scan to figure out what’s going on. But that gets expensive. And frustrating.
My rheumatologist is as frustrated and at a loss as I am. She is actually a very compassionate, caring lady. I feel she takes all of this very personally. She wants to help.
This ‘only other patient like me’ hasn’t responded to any biologicals either. That patient has long standing disease also. But she started that patient on the Xeljanz trial, before it was approved for the PBS. That patient is now in remission.
So this is why she wants me to try Xeljanz. Previously the plan was Actemra, and I had to ask her why the change. She said herself ‘Everyone is different’. But she really feels Xeljanz is our best shot. She considered putting me on the Xeljanz trial back then. To give me a free bite at the cherry so to speak, but she chose not to. Of course now she wishes she did.
You knew there was a ‘but’ didn’t you?
I have a few neurological symptoms, and the dang things won’t go away. Biologicals, most often TNF blockers like Enbrel and Humira, have been implicated in causing MS, and other neurological diseases. Orencia has been as well, but to a lesser degree. In fact all biologicals carry some neurological risk, whether it be disease, such as MS, or higher incidence of stroke.
For me, each biological that I took raised my blood pressure into the stratosphere. I regularly measured around 160/100, sometimes 190/120. Which was just ignored and put down to me being stressed, depressed and under pressure.
Except for the two lacunar infarcts on my MRI.
Hindsight being 20-20, my cholesterol was raised, my platelets were raised, and my blood pressure was through the roof. I now know that’s just asking for a stroke. I’m lucky they were small strokes. I have deficits, but no one would know. But my risk of having a major stroke is high.
So I’ve been on blood thinners for the last year. My last dose of Orencia was six months ago, and my blood pressure now averages 110/70 or so. My cholesterol is 4.7. Nicely in the middle of the range.
Staying off biologicals reduces my chances of having a major stroke. So neither I, nor my rheumatologist are at all sure whether we should continue with any biological therapies.
Living in pain is far better than being dead or brain dead.
I’m having another MRI and MRA. She also wants a lumbar puncture. And an all clear from my neurologist.
She won’t prescribe another biological until/unless those tests come back all clear, with my neuro’s blessing.
I have to taper down on prednisone. I have been on an average of 15mg for about five years now. She told me straight, the prednisone is masking the problems. That’s all. And its wreaking its own damage on my body. She says that every time. She warned me again.
She told me it’s time to choose if I want to live with the damage from prednisone or adjust my lifestyle. By ‘adjust my lifestyle’ she means accept greater disability. Greater pain. Less mobility. She told me it is far preferable to take more oxycodone, if that’s what it takes.
Easy for her to say, my GP is not keen to keep prescribing. Infact HE told me just the day before that I needed to lower my dose. And we would be reviewing my doses next month. Those two really need to talk…
And my pain management doctor is a dumbass. That’s as polite as I can be about him.
I asked for naprosyn. She said take it only when essential. I thought to myself ‘that will be every day’ but didn’t say so. My last endoscopy was clear – no ulcer, no gastritis. I can take naprosyn again for a while. I’ll need to.
My rheumy doesn’t understand that I’m in a race. And have been for the last five years. Stay upright long enough to raise my kids to independence. That’s really all that matters to me.
She won’t sanction that anymore. Her rules: Taper prednisone. Get to 7.5mg. Get the MRI and MRA and the all clear from my neurologist, get a lumbar puncture. Then she’ll give me Xeljanz.
And then we hope.
I’m in that place where I can’t have biologics because my immune system is so knocked-out by all the previous drugs that I’m at risk of a fatal infection. Even Dmards have left me with chronic infection so I’ve been off everything for five months – my pain has been so bad in the past few weeks (hand joints) despite Fentanyl, that I have reluctantly started on a Dmard again but having to stay at a half dose because of nausea, diarrhoea etc. If the infections start up again I will have to stop.
So I’m left with disability, pain and opioids as companions. I also have a lovely female rheumy who genuinely cares and worries about not being able to do more. That helps – to be seen and respected as a person.
That’s a terrible place to be Cece. The treatments can do more harm than good sometimes, or potential harm. With risks that are just too great. I hope in time the DMARD will be tolerable, and start to help. But I know, its a long road. And in the meantime…pain :(. I’m glad your rheumy is compassionate. It makes the world of difference, as you said. Take care xxx