After all these tests I finally tried prednisone treatment
Back in 2014, Dr. Soland had promised me, that the skin biopsy was going to be the last test, before we try prednisone treatment. I had pushed for prednisone treatment since my first visit with him, because I had found this case report of patients with exactly the same symptoms, who were successfully treated with prednisone.
I had gone through a large neuropathy workup, after my sudden onset of weird neuropathy symptoms back in 2014. I had, an ENG and an EMG, a ton of blood work and an MRI, a spinal tap, I saw a hematologist who did more blood tests and an ultra sound of my inner organs to rule out I had blood cancer, and finally I had a skin biopsy and autonomic function testing. We did not have the results of the skin biopsy yet, but the doc who did the autonomic function testing agreed that it was likely that I had small-fiber neuropathy.
I was so sick of my neuropahty symptoms
I remember that I felt so relieved when I finally held this prescription for prednisone in my hands.💊💊💊💊 FINALLY, I was going to try something to treat this disease. I was so sick of my symptoms, which prevented me from doing almost anything I loved doing.
I know that many patients with small-fiber neuropathy have to go for much longer before getting any treatment, so I don't want to complain. 3.5 months is comparably short. It just felt really long to me, especially because I had trouble walking, so I was home a lot and had time to research and think about my symptoms.🤨
My feet turned painful and red when I got warm or did any kind of mild exercise. Increasingly often, it felt like something really sharp was cutting into the bottom of my feet when I was walking. I also had these weird electro shock-type feelings in my fingers and whenever I was slightly warm my fingers were really painful and it felt as though a numb kind of electric, felty layer was over the skin of my fingers. Some days it was hard to even type on my keyboard.
Additionally, the tip of my nose felt tingly, and I had this weird itch high up in my nose that felt as though I had to sneeze all the time.
What is prednisone?
Prednisone is a synthetic version of cortisone. Cortisone is a stress hormone, which our body produces as well. Our body produces an average of 16mg of cortisone per day, which equals about 7.5 mg of prednisone. I started on a dose of 60mg prednisone per day, so about 8 times of what my body would normally produce.
Why do we use prednisone to treat autoimmune diseases?
In the 1950s, researchers accidentally observed that high doses of cortisone made patients with bad rheumatism walk again. Later they found out, that cortisone was able to suppress the immune system and to reduce inflammation at high doses.
Ever since, synthetic and more potent versions of cortisone, most often prednisone, have been used to treat autoimmune conditions to suppress the immune system.... It is often the drug you try first, because it's very cheap and often times it works quickly and effectively.
But prednisone comes with a big range of possible side effects, especially if you use if for a long time. These include bone damage, diabetes, glaucoma, cataracts, and many more... So prednisone should never be a long-term treatment if anything else works as well. But usually a short course of prednisone over a few weeks / months does not cause much damage.
The anxious wait for an effect
So the morning after my skin biopsy, I took 60mg of prednisone. I was very excited to finally try treatment, but at the same time I was scared it wasn't going to work, because there was no plan B at this point.
Within about 30 minutes after taking the first tablets, I could feel increased tingling in my feet. I also felt weirdly energized and motivated, which was strange because for the past 3.5 months I felt the opposite.
The plan was to take prednisone for 2 weeks and then to check in with Dr. Soland to discuss how to proceed. So every day, I scrutinized all my symptoms to figure out whether they were better than the day before.
It's really difficult to actually say if neuropathy gets better or worse, because symptoms depend on so many different factors, like activities, temperature etc. To objectify them a bit, I set up a journal (I'm still journaling today), in which I wrote down my symptoms and my overall pain score. I also walked home from work every day the exact same way, and I wrote down how far I could walk before I had to get on my bike due to major pain and swelling in my feet.
For the first few days, I noticed a bit of increased tingling in my feet but I couldn't really tell a difference in terms of pain. I noticed that my hands were a bit less painful, but the symptoms in my hands had fluctuated before as well.
Big set back after about a week of prednisone
About a week into my prednisone treatment, I noticed that my right foot started to get more painful than usual while I was walking. It kind of felt like walking on broken glass....I hadn't brought my bike so I had to keep walking. It was only about a 10 minute walk, but by the time I got home and I took my shoes off, my right foot was bright red all the way up to my ankle.
I felt so disheartened, because that was the reddest and most painful it had ever been. Before that it was usually mainly the forefoot and the toes that were red and painful. I came home and had a 'minor' breakdown...😣
Another thing with small-fiber neuropthy is, that once you were in bad pain, this pain lingers for a few days afterwards. So for the 3 days after, I had really bad pain in my right forefoot and had to walk on the side of my foot, even if I only wanted to walk a few steps. I was feeling pretty depressed, because I thought prednisone wasn't working.
But then it started to get a bit better
But, because I had no plan B anyway, I kept taking it. Somehow, after the few days of increased symptoms, it started to get a bit better. And I felt like I could walk further without major pain.
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| This is a snippet of my neuropathy journal, in which I wrote down my daily symptoms and pain level....sorry it's a bit blurry🙃 |
Two weeks into my treatment, I met with Dr. Soland and told him that I think it may be getting a little bit better, but that I wasn't exactly sure.....
We agreed to keep going for another two weeks and then to go down to 50mg/day for anotheer 2 weeks, which is still a pretty high, immunosuppressive, dose anyway.
One day in May, it became clear to me that it was getting better
When I look at my journal today, it was pretty obvious that my symptoms were getting better over time, but I didn't let my self believe it for a long time.
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