It’s now been almost a year since my joint pain started.
I have to admit, I feel rather naïve on this journey. Perhaps I fell under the assumption that arthritis is a well known disease, something that impacts millions of people, so therefore it must have treatment and be relatively easy to manage.
Maybe this is just a trap fed to us by brand name drugs as commercials fly across our screens and we see folks living normal lives, free from the disease burden. If I knew the migraine commercials were bullshit examples of life with migraine, I guess I should’ve put two and two together when it came to arthritis.
If you missed my “hey I’ve been diagnosed” post, you can read it here.
I mentioned in the beginning of my current Behind The Scenes: Drug Trial and Error series how I’ve discontinued my arthritis medication, but I think it’s important to get the whole story out there and really discuss what life has been like since diagnosis and where to go from here.
We started me on an immunosuppressive drug called Leflunomide in late August. After a month and no adverse reactions to the low dose we increased to the standard dose.
I was under the impression that the primary goal was to reduce inflammation. My disease state is not severe, not even close. Arthritis functions in a way that causes your immune system to slowly eat away at your joints. From the results of my xray’s there’s some clear areas in my hands, knees, shoulder, back, and hips where the cartilage is beginning to show signs of thinning. There is no cartilage loss and there is no bone damage. This is a very good thing. Bone damage is not reversible.
Therefore, the treatment plan is to work with my immune system to reduce inflammation which is the main cause of the thinning.
Another area that I personally call into question is the extend of cartilage loss and how it relates to my reduced bone density. This summer we also discontinued my long term birth control due to the presence of decreased bone density. In all instances of a loss of bone density due to the depo-provera shot, bones recover to their full density usually within a few years and I’m on supplements to aid in that process. I don’t really have a doctor I can inquire about the relationship with, so this is merely speculation. Is the bone density related to arthritis? There is a link between osteoarthritis and depo, but nothing concrete regarding psoriatic arthritis.
My personal questioning involves what doctor’s were interpreting when looking at my x-rays and the density factor, if there was one. I don’t recall mentioning to the Rheumatologist the birth control related issues.
But alas, we are working to reduce inflammation.
Because of my migraines, the first class of medications: NSAIDs, are off the table due to the implication for medication overuse headache. My migraines are much worse and I will not sacrifice that disease to reduce joint damage. This forced us to take the route of immunosuppressive medications, a step down from full blown biologics.
What this immunosuppressive has done to my body however is messy and I don’t know how it can be advocated for for anyone who is my age as a lifelong treatment.
In the beginning, I was dealing with GI problems. This first happened with the increase in dose and lasted for about two weeks. By the end of October, it seemed as if everything was upsetting my stomach. By the end of November, it was becoming nonstop and severe.
I had no idea what I could eat, none of the regular foods I enjoyed were comfortable. I tried to cut out foods that would make me bloated, but accidentally planned out a few weeks of incredibly high fiber meals. This made the pain and discomfort worse. I requested to see my primary care doctor not knowing this was related to the Leflunomide. I’ve had a history of what I had guessed was IBS, and this felt like a flare so it would be a good time to investigate it. I received diagnosis and treatment that seemed to help.
But the fight was far from over. At the same time, I began experiencing sharp pain in my feet. The arthritis was spreading and causing pain in new areas.
My Rheumatologist wanted me on additional medication, but I wanted to wait to discuss at an appointment. I felt rather unsupported, in reaching out for help I didn’t receive a message, I simply got notified that a new prescription had been submitted. I’m not one to just take a medication because someone says so, I want to fully discuss it and understand what the drug does, what the goal is for my care, and what I should be aware of regarding side effects. By the time I could have an appointment, my Rheumatologist left the practice.
I reacted to the IBS medication and ended up in urgent care rather than seeing a fill in doctor to discuss medications.
The soonest I could be seen would be early January.
In December I started noticing my hairbrush filling up quicker. When I’d shower, more hair was coming out of my head than normal. The light would hit the floor at the right angle and I could see hair everywhere. It was happening again. I was losing hair.
It takes roughly 2-3 months after starting a medication for hair loss to occur. It’s relatively common with immunosuppressants. The drugs work to target cells in our body and prevent them from doing something, and whatever that something is often impacts our hair cells too. And my hair was falling out.
Soon it would be coming out in clumps.
Now I had something even bigger to discuss, because hair loss is where I draw the line for any medication, and now I’ve lost roughly 1/3 of my hair’s density. I had to discontinue.
I begged to be able to correspond with a doctor via email to get answers to my questions. The fill in doctor didn’t seem to care about any of my concerns and was not actually going to serve as my acting physician. She abruptly told me to stop the medication if I didn’t like it and wouldn’t talk to me about any other medications or my concerns.
Over the course of being on Leflunomide, I also developed an even more concerning side effect: hypertension. My blood pressure is consistently in the 148/89 range. We introduced a separate beta-blocker because the IBS treatment raised my heartrate to uncontrollable amounts and that has been steady for a month now. But it hasn’t touched the high blood pressure.
Experiencing side effects is one thing, but to have consistently high in office blood pressure readings that have been all but ignored bothers me tremendously. If I wasn’t self monitoring at home, I wouldn’t know anything was still wrong.
The hair loss and the hypertension are the main reasons we discontinued, but there’s no doubt the Leflunomide caused the IBS flare which has now completely settled, in addition to increased fatigue, nausea, and a constant sore throat.
I stopped Leflunomide a month ago, the IBS treatment a week later. My hair is still falling out even with the use of folic acid to encourage new growth. My blood pressure has not gone down. My fatigue hasn’t dissipated. The IBS has. The sore throat is gone.
The fill in Rheumatologist did not want to flush my system, despite being told this was an option. She could not inform me if the flushing process would interfere with my other medications. I wish I’d gone through the process because my body is not okay. She did approve a new medication to manage inflammation but insisted I get it prescribed elsewhere.
I had to see a pain management specialist for a script of LDN, a broadly used treatment for chronic pain and inflammation with a very small, almost non-existent side effect profile. The Rheumatologist was even nice enough to let the pain doctor know that she didn’t think this drug would help me and didn’t know why I was asking for it. Thankfully, pain doctor guy was really great and even had handouts explaining why this would in fact be a great option for me.
I’ve just increased my LDN dose to 3mg, and it’ll likely take a while to notice any therapeutic benefits but it leaves me at a horrible crossroads for what’s next.
I see my primary care doctor next week to follow up on my heart rate. We’ll discuss the blood pressure as I’m sure he’ll want to increase my dose of the beta blocker or switch to a different beta blocker. I have no idea if my blood pressure will ever return to normal on its own or if one single attempt to treat my arthritis is forcing me onto another life long medication. I hope my doctor will have some answers on that.
But from there, where do I go?
I no longer have a Rheumatologist and the pain doctor made it clear I’d want to seek out a specialist with the other local hospital network in order to have consistent care. Apparently their network is full of constant turnover.
Do I seek out a new Rheumatologist knowing damn well I’m not interested in ever taking another immunosuppressant in my life? That taking drugs that have such large side effect profiles, that cause so much damage that I need regular bloodwork to make sure the drugs aren’t killing my organs instead, isn’t something I want to sign up for? That I would rather let my bones deteriorate than kill the rest of my body. How do you tell that to another doctor that you’re hoping to manage your care? Why seek out care if I’m already actively choosing to not treat beyond the experimental LDN? Can’t my primary care doctor manage the monitoring if this is the case?
The other side of the coin is that the psoriasis rash that has taken up residence in my ears is simply not responding to creams at all. I need more options and I don’t really want to just order a bunch of stuff online labeled as psoriasis cream and hope it helps. But do I need a Rheumatologist for that or can I seek out a Dermatologist? The rash is probably more annoying than the joint pain. Can I make that choice to simply not have a Rheumatologist?
If the goal at this point is reducing inflammation, could I seek out a dietician to help guide me through the auto-immune protocol? Or learn about anti-inflammatory diets that I can follow strictly to keep inflammation down through diet?
Would resuming the massage therapy that benefits my migraines also benefit my arthritis? The whole point is that blood flow helps reduce inflammation?
From my perspective, it feels like there’s a whole lot of options that exist that should be advertised for folks my age dealing with an auto-immune disorder long before trying drugs that will eventually destroy your body. I mean, I took just one drug. It did not improve much of anything, and it caused so many problems that may be lifelong. And I should just try another one? I don’t think so.
As a note, none of this is meant to be taken as medical advice or sound answers regarding what psoriatic arthritis or how it can best be treated. This is merely my experience and questions that I have and should not be a substitute for medical advice under any circumstances.