I was diagnosed with rheumatoid arthritis two years ago this month. Nothing about my experience has been easy or common.
When it comes to medicine and pharmacology, I consider myself more savvy than most patients thanks to a quarter of a century of caring for a loved one with multiple ailments and a myriad of allergies, intolerances, and brain chemistry mysteries that, over time, have turned out to be a shared genetic trait.
With my background as a technical writer and editor, whenever confronted with a medical conundrum, new drug, a vitamin deficiency, my start page has always been PubMed. I have to admit that, often times, this both makes me a pain in the ass patient for asking many more questions as well as being the disobedient gatekeeper at disaster’s gate.
After two years of being under watch for rheumatoid arthritis by my family doctor, I was finally referred to a rheumatologist. Getting my first appointment took about six months between the approval process and the long waitlist. After my second appointment and a battery of tests, I was diagnosed with rheumatoid arthritis and put on methotrexate, at 5 2.5mg pills per week. I was told that it would take some weeks for the drug to take effect. I started taking it in March 2021. By July of that year I was still in a lot of pain, with stiff joints and muscles. My dosage was increased to 8 2.5mg pills per week. By September I was doing no better, so my dosage was raised again, to 10 2.5mg pills, or the maximum dosage for my diagnosis.
At my December follow up appointment, the rheumatologist informed me that my lab testing showed that the drug wasn’t effective enough and that I either needed to start taking a second drug or switch to a different one. I opted to switch, rather than add. So, the doctor prescribed Leflunomide. I was so sick a few hours after taking the first dose that I couldn’t get out of bed. I contacted the rheumatologist the next day and he agreed it wasn’t for me. I was ordered to resume methotrexate and make an appointment to discuss the next set of options.
When I next saw my rheumatologist, a couple of weeks later, he offered to start me on the injectable drug, Humira. I agreed. While explaining how often to take the drug and what to expect, the doctor gave me the strong impression that I was to discontinue taking methotrexate as soon as Humira was approved and I obtained my first doses. Humira is an injection that is self-administered once every two weeks. Since my plan approved this expensive new prescription the same day it was prescribed, I picked it up at the pharmacy and self-administered my first dose the following day. That day happened to coincide with my next weekly dose of methotrexate, which I stopped taking.
Fast forward a very difficult month, one in which I had to slow down my physical activity quite a bit due to increased generalized pain and the onset of new arthritic hot spots, I got in touch with the rheumatologist and gave him a status report. He was surprised at my deterioration but restated the fact that Humira takes a long time to start working. Then, he asked if I’d be willing to increase my methotrexate dosage temporarily. Increase? Bbbbbut, Doctor, you told me to stop it… We then had a discussion about misunderstandings and I was ordered back on methotrexate in tandem with Humira.
A month later, when I was no better back on methotrexate and Humira than Humira alone, my dosage was increased back to 10 2.5mg pills, and I was told to be patient and wait for the higher dosage to take effect. I waited another month. No dice.
I was in a lot of pain, especially in those areas where I’d previously had surgery. For example, I had surgery on my shoulder in March 2020. That surgery was miraculous in that the terrible pain I’d previously experienced from a torn ligament had completely resolved. Now, a different kind of soreness and pain were present. The same was true of the problems I had with my neck that were repaired with fusion surgery in September 2021. Now, my neck was stiff and very painful again. Walking was very difficult again.
After another consultation, the rheumatologist asked again to be patient. I waited another month. The pain levels were constant in some parts while, in others, inflammation would pop up and disappear at random in others. When things got really bad, I called again and was seen by the nurse practitioner. She put me on a course of steroids. I felt a lot better for the first time in months.
Of course, I only felt better during the time I was on the steroids. Once done with the course I was prescribed, my situation went back to what it was before.
About a month later, in November 2022, something strange began to appear on my hands and feet: rashes, very strange looking ones. Some white spots appeared in my throat near but not on the tonsils. After a visit to the Ear, Nose and Throat doctor, an infection was ruled out. Not making the connection to arthritis, I went to see my primary care physician, who ruled out hand, foot and mouth disease. He suggested I contact my rheumatologist and wrote a referral to a dermatologist.
While I waited for my appointment dates, I took to PubMed to do some research… As it turns out, methotrexate, Humira, and most newer arthritis drugs all come with side-effects that include rashes. Armed with that information, I went to my first appointment with my new dermatologist. While he agreed that there is documentation of drug-related rashes, it was his opinion that my palmo-plantar pustulosis is the onset of psoriasis. I pointed out to him that, in addition to the rashes on the skin, I also had white spots and soreness in the throat.
In his opinion, what was happening was predisposition and age coinciding. He didn’t rule out that either of the medications I was taking could be the culprits but felt it was more likely psoriasis. He offered two topical steroids to help with the rashes, along with the injectable drug, Skirizi. Skirizi is advertised rather aggressively on TV these days. “Nothing is everything…” is sung in a rather jolly fashion as a woman dances in the street. When I refused it, the dermatologist said he could put me on a non-injectable drug, Acitretin, to treat the rashes but that it wouldn’t do anything for the underlying illness. I asked about the side effects. He said upset stomach was the most common and that I would have to take it on a full stomach. I went to the pharmacy on my way home and immediately sat in front of the computer when I got back.
The side effects of Acitretin include:
Cardiovascular
Acute myocardial infarction, thromboembolism (see WARNINGS), stroke.
Immune System Disorders
Hypersensitivity, including angioedema and urticaria (see CONTRAINDICATIONS).
Nervous System
Myopathy with peripheral neuropathy has been reported during therapy with SORIATANE. Both conditions improved with discontinuation of the drug.
Psychiatric
Aggressive feelings and/or suicidal thoughts have been reported. These events, including self-injurious behavior, have been reported in patients taking other systemically administered retinoids, as well as in patients taking SORIATANE. Since other factors may have contributed to these events, it is not known if they are related to SORIATANE
Before seeing a rheumatologist and while being watched for arthritis, I was under the care of a pain management doctor. After three years of managing my pain with Neurontin, I finally made the connection between a new inability to judge distance and a clumsiness I’d never exhibited before. I also became unable to listen to a conversation while doing something with my hands. My hand-eye coordination was impaired and I was having a lot of accidents while doing things I’d never had trouble doing before. In 2019, Neurontin was replaced with Lyrica. I took one dose of Lyrica and experienced its most frightening symptom.
I reached out to the dermatologist and let him know that, had he told me about the other side-effects, I would have refused Acitretin because other drugs had caused the same dire side-effects and I was unwilling to take a risk. What I didn’t tell him is that I also saw that the drug he prescribed to help treat rashes can also cause them. I have a demonstrable track record of getting the more esoteric side-effects. Why risk it?
When I saw my rheumatologist the next day, he was surprised at the psoriasis diagnosis from the dermatologist and exclaimed that he didn’t think my diagnosis is psoriatic arthritis. When I asked him whether it was possible that this is a side-effect of Humira, he said it looked like it and ordered me to stop it. He prescribed Orencia instead. Because Orencia is even more expensive than Humira, he warned me it may take a couple of weeks for my insurance to approve it. My insurance approved it that day.
- Orencia costs $6,700 for four self-injector pens.
- Humira costs $3,600 for two.
Orencia is administered once weekly. Humira is a bi-weekly drug.
As I am wont to do, and as my rashes were worsening, I went back to PubMed to do more research. Armed with the diagnosis from the dermatologist, I searched for palmoplantar pustulosis and all three arthritis drugs pretty much come with the same warnings and side-effects. Orencia’s list is the more alarming of the three. I decided to hold off on trying it until I get more clarity with the rashes.
It’s been two months now. I discontinued methotrexate three weeks ago when, after some deeper research, I discovered that it, too, can cause palmo-plantar pustulosis in some rare cases.
The rashes on my hands, feet, and some other places are better, but still pretty bad, to use my dermatologist’s description when he saw me this week. We had another discussion about the medications causing the rashes. He still doesn’t think any of the medications caused my new problems but, at the same time, couldn’t categorically pronounce the medications as innocent, in my case. He felt that, in another month, it will be three months since my last dose of Humira and two months since my last dose of methotrexate. At that point, he feels, if I still have new rashes, neither drug would still be in my system and, therefore, could not be the culprits. At my request, a biopsy was taken at my latest visit this week. To quote from the dermatologist’s report:
“We will do biopsy today to confirm psoriasis diagnosis. Although it may not change management, discussed that a cycle confirmation biopsy may be helpful if it can start shows numerous eosinophils suggestive for pustular drug eruption.”
This brings me to the decision-making ahead on both the dermatology and rheumatology fronts. I am at the stage where, regardless of which diagnosis sticks, the drugs I am offered will all be of the type whose TV ads come with scary warnings and they will all come with the same side-effects I’ve listed in the narrative above.
Will I find myself choosing between cures that may well end up being worse than the disease? Cause diseases that are no worse but no better than what I am already enduring?
I don’t know what I will ultimately decide. I have to admit that I am leaning toward not accepting new biologic drug treatments. I know I won’t go back to methotrexate even if it turns out that it didn’t cause my outbreak of palmoplantar pustulosis. My labs from a year ago demonstrated that it, alone, doesn’t work well enough. My labs six months into my treatment with Humira and methotrexate demonstrated that the two drugs, together, don’t work well enough. The risks associated with the other available drugs don’t seem worth it, especially with COVID still among us and the end of the pandemic declaration.
To be continued…
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