It’s 4am, and as usual, I’m awake. Pain is a little less than usual because I took an extra targin before bed. But still, not enough to get me through the night. Not enough for me to sleep more than five hours.
I have a lot on my mind. What to do. My appointment with my GP did not go well. Infact it was the most adversarial appointment I’ve had with her in years. I used to find her too blunt and difficult to communicate with, but she has encyclopaedic medical knowledge and she is very efficient. She also (almost) never runs late, and is easy to get an appointment with, quickly. Most people prefer more of a bedside manner. I liked how ‘to the point’ she was, I trusted her.
But yesterday, I landed on the wrong side of her medical information. From her opening statement “So you’re here for us to discuss your opioid use” I felt pressured.
I told her that 10mg of targin was not going well. That I am spending much more time on the couch, I am less active, I’ve stopped walking around the pond (around 30mins of easy walking), I’ve stopped my VR boxing classes, and I’m waking every night between 2am and 4am with pain that prevents me from sleeping any more.
I’m exhausted from lack of sleep and from pain itself. Dealing with strong pain every waking moment IS exhausting.
“Uh-hmmmm” she says. Her face says it all. She takes a deep breath and says “So the spinal surgery hasn’t reduced your back pain?”
No, I state, the spinal fusion was a resounding success. Its my rheumatoid arthritis pain that is the problem, my rheumatoid arthritis is now the most painful thing, and my spinal pain is mild/moderate for the most part, flaring if I do too much. Manageable.
Right! She says. What are you doing about your arthritis, what treatment are you on?
Baricitinib, methotrexate, plaquenil and steroids, hydrocortisone currently. Baricitinib has only been four weeks, so too early to call it a failure, but it isn’t working as well as it did the first time. Last time it gave me a lot of energy and I was able to drop two milligrams of prednisone while on it. This time I have had to increase my hydrocortisone because I couldn’t take the fatigue anymore. I told her I did a ‘sick day’ dose, increasing to 40mg hydrocortisone (equivalent to 10mg of prednisone) and that has gotten me back on my feet fatigue wise, and reduced the pain some.
She glared at me so I kept talking.
I told her I would taper back down to 32mg of hydrocortisone, but every time I get to 30mg of hydro, life gets unliveable, and I am reduced to life on the couch.
She cut me off with “well, you’re seeing your rheumatologist next week, he needs to treat the root cause of the pain. We can’t keep band-aiding it with pain killers. Because that’s what opioid are, just a band-aid. They don’t fix anything.”
I said they do fix pain.
And then she said “there’s no evidence that opioids are effective for chronic pain…” And she repeated the standard media junk about opioids being appropriate for acute pain, but not for chronic pain. And sometimes appropriate for cancer pain and for those who are dying. NOT for people who are not dying, as they cause more problems than they fix.
I told her that they DO work very well for me. That I am the evidence, that I have been taking them for many years, and they allow me to live a functional life. Not a normal life, but a much-improved life.
And then she said “but opioids cause tolerance. We can’t keep just raising the dose forever.”
I said “but I’m reducing my dose.”
THAT pissed her off. The patient in front of her didn’t fit her internal monologue and it made her angry. She lost her thread in her opioid narrative, so I jumped back in.
I asked her point blank if there was going to be pressure from the government, with the changes coming in June 1st, to taper all patients off opioids.
She said “there already is pressure! Why do you think I have been pushing you so hard to reduce your doses? We ARE going to get you off these drugs. Staying on them is not an option.”
And there is was, point blank. Blunt as ever, in my face.
I still appreciate her blunt honesty. At least I know where I stand. I have many doctors who never share what they are thinking, either diagnostically or prognostically. I know some of them think I’m a cry-baby drug addict. I’d prefer they just came out and said it, rather then Hmmmmmn-ing at me disapprovingly.
She returned to my rheumatologist, saying he could probably increase my plaquenil dose (plaquenil? Are you kidding me?). I said that my rheumatologist has given up on me. His plan is to up my prednisone and he told me take opioids for pain and do the best I can.
She said I could up my prednisone temporarily. I reminded her that I had already. She asked me which worked better, steroids or opioids. I said both work well, in different ways. She asked which one I wanted more. I said I’d been led to believe steroids were more dangerous long term than opioids. She said they were both as bad as eachother. She used the term ‘pandora’s box’ and said it was a lose/lose and I really needed to be off both, but opioids were worse.
Bullshit. Opioids are far safer than corticosteroids I thought, but I didn’t say it out loud.
She said that we’d stay at 10mg for another month, so that I could have more time to acclimatise to the dose.
I panicked and blurted that life at 10mg is miserable. That my rheumatologist wouldn’t do much, he will only say that its too soon to give up on the baricitinib (which I totally agree with) and he could maybe increase my methotrexate. But that would be it. And then I launched into the story that all my doctors hate – I am in the same place I was five years ago, probably more.
I have multiple doctors, currently a rheumatologist, and immunologist and an endocrinologist (I no longer see my cardiologist, neurologist or gastroenterologist), all tasked with the same problem – why can’t I get lower on my corticosteroids? I taper down to the same dose, and become sick and couchbound. The line is the same, the equivalent of 7.5mg of prednisone is as low as I can go before extreme fatigue, low mood and general aches send me to the couch.
“oh yes,” she sighed “you get adrenal problems”.
I reminded her that originally my endocrinologist told me that 7.5mg of prednisone was a safe dose, the physiological replacement dose. Once I got to 7.5mg, she moved the goal posts, and told me that actually I had to get to 5mg of prednisone. So I keep trying, I have been doing this taper down, get sicker, collapse, either go to the ER or do a steroid burst at home, stay on the higher dose for a week or two and start the taper all over again. I have been doing this for at least FIVE years. It always ends the same way. And NO doctor will listen. They just tell me to go away and come back when I’m off the prednisone.
But I can’t get off the prednisone. I have gone into adrenal crisis twice, and spent the day in hospital getting rehydrated.
My symptoms are real. In the beginning I figured I must be a sissy, and so I kept trying. And trying. But I am NOT a sissy. I have always been tough physically. Even when my spinal pain was at its worst, I was in the gym doing Pump classes. I gritted my teeth and dealt with the pain because physical strength and fitness is important to me. Sissys don’t do that.
None of my doctors have any idea why, or even any desire to investigate further, they just refer me back to one of the other doctors. Immunologist says see what your endo says who says see what your rheum says, and my rheum says “I don’t care.”
All my doctors have even questioned whether it even IS rheumatoid arthritis, and that’s fine. I’m not attached to any particular diagnosis, the only reason I need an accurate diagnosis is to get a treatment that works.
She cut my off, bluntly telling me she knows all that, and all I can do is see my rheumatologist next week. If he had nothing to offer, she would refer me to a different rheumatologist.
“That would be number 6” I said, a little too sarcastically.
She reiterated that we need to treat the root cause of my problems, and we wouldn’t be continuing with opioids. She must have read the panic on my face, because she changed tacks and said “How about we try 15mg for a month.”
I said, yes please, that sounds like a good compromise. I hadn’t realised there was a 15mg dose. She said maybe 15mg was enough for me to start exercising again, and it would give my rheumatologist a month to “figure something out”.
I asked for the names of the new rheumatologists in town, so that I could google them and find out more about them. Because starting over with a new rheumatologist is not only hard work in terms of going back to square one, its expensive. The consult fees, the tests that they invariably will order, scans, labs. The whole process will take 6-9 months and at the end of that, he or she will be just as much at a loss as my current rheumatologist. I know the treatment options, my rheumatologist has done all the right things. Trying a different one is just kicking the can down the road and spending my money.
That didn’t impress her either, she just said “one month.” And wrote the script.
Then I asked her to check my skin cancer, and for a new thyroid script, and to check my liver function bloods, which were all good. Some good news, at least.
She handed me the script and said again “You need to find a way to get by on less targin, because I can’t keep writing these scripts”
Just in case I’d misunderstood her earlier.
And I left.
And came home and cried.
People who don’t live with daily pain don’t understand what it does to your life, and to your mental health. Yes, I am dependent on my opioid pain medications. No, I’m not an addict. My GP makes no distinction between an addict and a pain patient who is dependent. Which is the problem with the narrative that the government, PainAustralia and the RAGCP have been pushing. Anyone who takes opioids daily is an addict and has Opioid Use Disorder in their eyes.
This is bullshit. Addiction rates amongst chronic pain patients is very low. Dependence is an entirely different thing. Opioids ARE effective pain relievers. Yes, tolerance is a thing, but I have been reducing my opioid dose, because I fixed the ‘root cause’ of my spinal pain. So I don’t fit the narrative. But it doesn’t matter.
From around week four after my spinal fusion (L3-S1 – three levels) my pain levels in my spine became lower than my rheumatoid arthritis pain. I was taking 30mg of targin then, and was easily able to drop down to 20mg. My pain was controlled. I was starting to enjoy life again. My life wasn’t ruled by pain. I still had painful knockdown days, but I also had great days, where pain was mild. I started to feel like the nightmare was over, and I even started planning work, a career. I imagined re-joining the ‘real’ world, being a normal person again. I was exercising, enough to work up a sweat and breathing hard. I was getting fitter, cardio-fit and improving my muscles strength. Live was looking up, in a big way.
Then I tapered down to 10mg and pain took over again. I also tapered my steroids too low, and everything fell apart. I realised I am still sick, I am still disabled. My dreams were just that – dreams.
But with 20mg of targin, I can have that life. But I can’t have 20mg of targin. Ultimately I can’t have any targin.
So where does this leave me?
I’m going to make an appointment with my pain management doctor. He will have the power to authorise my opioid scripts. He may or may not agree to do that. I have been seeing him for several years though, he knows me, he will be pleased that I’ve had the spinal surgery. He’s my only shot at keeping my pain medications long term.
I will see my rheumatologist, but I know how that will go. He’ll change nothing and tell me to give the baricitinib longer and tell me to come back in six months. I’ll ask for a script for a higher dose of methotrexate 15 or 20mg, whatever he thinks, so that I can start a higher dose in three months if the baricitinib doesn’t kick in and start suppressing my rheumatoid arthritis. He should agree to that, I hope.
I’m finding a new endocrinologist. Someone needs to take my pituitary tumour and adrenal problems seriously. Just the thought of starting over with a new endo is exhausting.
If my GP persisits in reducing my oxycodone to 10mg next month, I will go back to prednisone.
Everyone says that’s a bad idea. Everyone says that prednisone will bring me nothing but an early grave. But a life of pain on the couch is not a life that I can live either. And it is my body, my life, my choice. Except I need a doctor to prescribe, and they probably will not approve 12mg of prednisone, which used to be the dose that controlled my RA nicely, and gave me enough energy to exercise and life a moderately active life.
Im entirely dependent on doctors who don’t want to deal with difficult cases. They only want to follow the text book, and if the patient won’t (can’t) follow the guideline, they blame the patient.
I have been going around this same circle for years now. I’m tired. I don’t know who or what I believe anymore. I’m basically stuck. In the same place I have been for many years now. Wedged firmly between the “too hard” basket and the “I really don’t give a toss” bin.
On the upside, I have my 15mg of targin, which I will take today. It may be enough. I have a one-month reprieve.
Do your doctors believe you? Have you been taken off opioid pain medications, or are you afraid you will be? The rules are changing on Monday, smaller pack sizes, and the guidelines have changed to exclude chronic pain from the indications for starting opioid therapy.