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Prednisone got me into remission in 2014
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
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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🙃 |
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.
One day in May, I had something to do in town. I took the tram to get there and then decided to walk home to see how far I could walk. It was an approximately 20 minute walk, which I would never have managed when my symptoms were bad. I walked all the way home, with only minor pain.🚶♀️
I remember how it just finally sank it, as I was walking, that prednisone did really seem to work. It felt really overwhelmed at this point, so I just started crying, as i was walking home. Luckily, it was a hot day anyway and I was wearing my sunglasses😎
Finally, I had an explanation for what was going on in my body. My small-fiber neuropathy was caused by some sort of auto-immune / inflammatory process. Obviously, that wasn't an exact understanding of what's going on, but it was so much better than tapping in complete dark.
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| This is a comparison of my feet about 1-2 weeks into prednisone treatment (left) and about 1 month later (right) |
How did I tolerate prednisone?
Overall, I tolerated prednisone pretty well. It made me more energized and actually more productive at work too💊💊🙈🙈 Don't take this as an advice to use prednisone as a lifestyle drug though....😂 I did get quite some unpleasant side effects too.
The side effect, that I felt most prominently was that fact that prednisone is a stress hormone...👀👀👀I really had trouble winding down, which on top of all the stress with the neuropathy really didn't help.
Most annoyingly, I could not fall asleep anymore. Even though I felt really exhausted, my mind wouldn't turn off when i was laying in bed and my eyes just wouldn't close. Dr. Soland prescribed me sleeping pills, and with those I was able to fall asleep, but I still woke up really early every day and didn't feel well rested.
I also noticed, that my patience with other people wasn't great. I'm sure it was a mix between stress from my neuropathy and the prednisone on top of it. But I didn't tolerate a whole lot of stress. Events with many people and a lot of noise kind of upset me and triggered an urge to leave the place.
I also noted that my skin bruised really easily, and that I grew more hair in my face. Not badly, but just a little more fluff on the side of my face. I also had a pretty bad heartburn after about two weeks into treatment, so Dr. Soland prescribed some antacids (proton pump inhibitors), which I took throughout treatment.
Overall, I just felt like I was a little bit beside myself. But as I noticed that prednisone was helping with the neuropathy, I was more than happy to take this.💪🏻💪🏻
I slowly decreased prednisone
After 4 weeks at 60mg, I decreased my prednisone dose by 10mg every 2 weeks. Once I was down to 10mg, I had to decrease even more slowly, because my body likely stopped producing it's own cortisone by now. So I had to reduce the dose very slowly, to let my own production kick in again, and I didn't run into an adrenal crisis due to lack of cortisone.
So overall I took prednisone for 4 months, but as I reduced the dose, the side effects got a lot better. Once my dose was below 10mg, I didn't notice any side effects anymore.
Then I stopped prednisone altogether and I was in remission
And then, one day in late August 2014, I stopped prednisone all together and my neuropathy symptoms were gone completely.🌺🌺 It felt unreal, and I felt soooooo relieved. At the same time I was really scared, that symptoms would return any moment. But nothing happened for the rest of the year. Nothing happened the year after.....
Dr. Soland was really happy as well. He presented my case to his colleagues at one of his local neurology meetings. He also assumed that my neuropathy was gone for good now, based on prior reports. But he also said to me, that if it did come back, we had a road map of what we needed to do now anyway.
Spoiler alert, symptoms did come back....but not for 3.5 years of complete remission.... But that is a matter for another post. Thanks for reading all the way to the end. I know this was a pretty long post again, but I just had a lot to say🤓😂
I hope you all enjoy your Sunday!💕
12 comments:
Wow, I didn't realise this worked for a while. And 3.5 years in the end! Did you try it again at some point and it no longer worked for you?
Wow, it is so great it worked and you were able to get your life back for 3.5 years.Like Kristy I am curious if you tried it again. If you did and it didn't work, why?
Wishing you a nice Sunday 🤗
Thank you for your comments!! In fact I did take it again when my neuropathy came back. It worked again, but I had trouble stopping it and had to take it for a long time. Its not a drug you want to take for ages, as you can end up with many long-term health problems. So when my neuropathy came back the third time I had to find another solution..... still a lot to write about:) Thank you so much for your interestt in my story!💕🌺
Great story so far! Crossing my fingers for you 🤞
Hello! Greetings from Slovenia...I suffer from the same disease and doctors know nothing about this disease. What tests have you done to confirm autoimmune cause of SFN ? Thank you and all the best
Hi Nenad,
Sorry to hear you suffer from the same issue😫 I didnt do any soecific tests to confirm autoimmune cause. My first flare was in 2014, before these antibodies were known, so after ruling out most other causes we just did a trial of prednisone to see if it would respond. And after symptoms got better on pred we pretty much knew it must be autoimmune of some sort. You can get the slecific antibodies tested (fgfr3, plexin d1, anti-tshds) but my neuro thinks there is jo point for me to do this now as we know its autoimmune and there is likely more causative antibodies than just these. But if you need a proof you may want to look into celltrend in germany or so to test for these antibodies.
Hope you get some treatment soon?
Hi Nenad,
Insaw that you posted another post, which I accidetnally deleted.
You can contact me via the email address pusted in my profile or via instagram (@my_neuropathy).
Thank you for sharing your journey with us - I'm so sorry for what you've had to go through, but can relate to it somewhat unfortunately, as I'm sure other blog readers here can.
I developed erythromelalgia of my feet, hands and face (this is considered a form of neuropathy, maybe with vascular dysfunction involvement too), after a viral infection (well multiple viral infections - HSV1, EBV and Covid) It's symptoms are burning painful feet, that turn red and get very hot to touch. Usually triggered by heat, or even mild exercise like walking/prolonged standing. It is so limiting in terms of basic every day living and movement we all take for granted. I also question if there is an autonomic dysfunction/autonomic neuropathy component to erythromelalgia, but that is an aside.
It sounds to me like your neuropathy had an erythromelalgia component to it? I read a paper by Dr Anne Louise Oaklander (a newfound hero of mine) recently which mentioned that erythromelalgia seems to have an inflammatory component to it, particularly in females. I'd love to ask her how she determined this, because my inflammatory markers (ESR and CRP) are always normal. I appreciate these are only 2 markers, but seem to be the only ones my doctors will consider.
Can I ask if your inflammatory markers were ever elevated when tested please? And if yes, was this part of the reason you were given prednisone?
My doctors are reluctant to try steroids because my ESR and CRP are always normal, even when I have other visible signs of inflammation, which is super frustrating.
Can I also ask if you had the side effect of facial flushing/redness while on the high dose steroids?
Thanks again for sharing and I hope you see continued and sustained improvements
Thanks again for sharing your experience. Can I ask if your neurologist considered or discussed intravenous steroids (like a high pulsed dose) with you rather than taking the oral prednisone? Was it something you considered?
Hi Debbie,
thanks so much for sharing your experience as well. I'm sorry you have to go through something very similar. There are just so many more of us than the medical world thinks.
I got erythromelalgia too - not so much in my face, but sometimes I do flush easily. My erythromelalgia is mainly in my feet and around my knees. The feet are so limiting because its hard to wear shoes or walk when erythromelalgia is bad. I have actually talked to Prof. Oaklander back when I was in Boston. She explained to me that they think erythromelalgie ist just due to small fiber neuropathy in many cases, because small nerve fibers control the vascular tone of blood vessels and if small nerve fibers misfire then you get strange hyperactive vascular reactions and stuff like that. Makes sense to me. I understand you have small-fiber neuropathy as well?
I have read papers from her where they took nerve biopsies from patients and looked at them under fluorescent microscopes or so and they saw inflammatory processes going on. They suspect mainly complement processes possibly triggered by autoantibodies. I think in these papers they write about this.
https://link.springer.com/article/10.1007/s13311-015-0395-1
https://publications.aap.org/pediatrics/article/131/4/e1091/31870/Evidence-of-Small-Fiber-Polyneuropathy-in?autologincheck=redirected
Personally, I'm convinced that there is so much more we could measure to detect inflammation if we knew what to look for. ESR and CRP are veeeeery crude markers for systemic inflammation.
My inflammation markers were always normal. They tested for the standard ESR, CRP, and C3/C4, but also for ANA, ANCA and other autoimmune markers and everything came back negative. Thankfully my neuro agrees taht maybe we just dont understand it all yet. We tried prednisone because I really wanted to and after it worked it was kind of clear that something autoimmune / inflammatory is going on. Have you tried getting a second opinion?
I did get some facial flushing and increased sweating during prednisone therapy but it was not very strong. It was mainly triggered by spicy food or alcohol for instance.
To your second question: yes my neuro does high dose pulse therapy quite a bit. He does it oral rather than iv, because he says it is basically the same and you can do it at home without a needle. You take 500mg-1g per day for 5 days and then you pause for a month or until symptoms get worse again. I have done one course once when I was in a very bad flare, but it didn't do much, so we moved on to more severe immunosuppression then. But I think it is definitely a good option, as the short courses of high dose steroids seem to cause less long-term damage than long-term steroids.
I hope you really get some treatment soon.....any chance you can get a second opinion? From my experience it is key to have a doc who is open minded and willing to try stuff.
Take care, Julia
Hi Julia,
Thanks for your detailed response-it’s very kind, extremely helpful. Thanks for sharing those papers-my cheeks look just like the woman in Fig 1 of 1st paper!
I had a lower leg punch biopsy done by neurologist in London. He said my nerve fiber count was low-normal but there was other abnormalities consistent with small fibre ganglionitis/neuronitis. This Prof only does research now though no treatment so I was referred to a rheumatologist (lucky I have +ANA). My rheumatologist is wonderful but I suspect does not fully grasp the neuro symptoms I try to explain (waking in the night with shooting waves of pain). Along with erythromelalgia I have symptoms like cystitis, hives when showering/in water (began after VZV/HSV-1 infection). I don’t think he fully understands the implications of mast cell activation for IVIg. We attempted 20g infusion but no pre-meds just IV saline. I spent 12 hours trying to get the infusion but kept getting reactions, flushing, acute fever, severe nerve pain in neck spine & down legs. So we abandoned it. The saline really helped my orthostatic intolerance for a few days-some silver lining.
After that we tried oral immune-suppressants. 1st azathioprine, which helped a small bit-only with skin lesions/lumps, & a small improvement in fatigue, but didn’t have any notable effect on erythromelalgia (or POTs) or other nerve symptoms (heavy weak concrete lower legs). Unfortunately while on this I got 2nd Covid infection which seemed to reduce the efficacy of azathioprine & generally trigger worse inflammation (especially bladder & erythromelalgia). I now wake every morning with red hot burning cheeks (I have bad sleep-burning feet at night). Because azathioprine seemed to stop working we added ciclosporin. I was a little nervous because have read of cases of it causing neuropathy. However I am still on it & have seen no change.
In April we swapped azathioprine for mycophenolate, I tapered up to full dose over spring/summer. Still waiting to see if it takes effect but no major changes so far. Interestingly I went on the Progesterone-only pill at the same time as mycophenolate-the burning red hot cheeks, nearly all facial flushing reduced dramatically. Unfortunately the POP caused other issues so I came off it a few weeks ago, since then the facial flushing has come back, along with shooting nerve pain. Oestrogen/progesterone seem to have a huge effect on my immune & nervous systems. So we’ve been trying lots of medications but apart from the POP, amitriptyline & prednisolone (I was given high oral dose in 2021 for acute hearing loss in 1 ear-it helped that plus lots of other symptoms, but not erythromelalgia, although I was tapered down quickly-only 8 weeks total), nothing has notably helped. Despite this good response of some symptoms to steroids my rheum is not keen to use them. He says we could try 20mg with a 4 week taper, but I know from my previous high dose that 20 & lower will do very little, especially over short time (skin lumps & burning pain started coming back below 25mg).
I feel my case could do with input of an open-minded neuro familiar with SFN & autoimmunity. A good 2nd opinion as you suggest, maybe someone that will work with my rheumatologist. Unfortunately the neuros in Ireland & UK are not interested in SFN. So I’m going to try find a neurologist in Europe. I’ve been doing research & narrowed down to 2 options: Dr Grimm at the University of Tubingen, Germany or Prof Wilder-Smith in Lucerne, Switzerland. Have you come across either of these? It looks like they both have interest in SFN but I don’t know if they will see patients from abroad (I have my fingers crossed yes as I don’t want to lose hope).
Sorry this has become a crazy long response. Thank you again for your wonderful blog & sharing your own experience, it really continues to be a lifeline/beacon of hope for me & no doubt for the other readers!
All the best from Ireland,
Debbie
Hi Debbie,
sounds like you also already had quite a journey with different drugs. It's not fun, but it's lucky you have a doctor who is willing to try stuff. I think this is the most important thing in the end, because many try to shrug it off and not do anything. I hope you find a treatment soon that works better for you.
I did not tolerate IVIG either due to bad meningitis headaches. I did tolerate SCIG (subcotaneous IGs) better though. Maybe this could be an option for you as well. You can do it at home and it makes a lot less side effects because it arrives in the body a lot slower. The brand name of the drug I had was Hizentra.
Sorry to hear you caught COVID....such a bummer. Did you take Paxlovid or any treatment for it? I still haven't caught it, but it's probably just a matter of time, and I'm scared of what it will do....
I had cyclosporin for a while and it cause bad erythromelalgia in my legs and burning paind. It's odd that everyone reacts so differently to different drugs, but I'm glad you tolerate it well.
Hormones are a huge trigger for me as well. Any changes in hormones. During pregnancy I was doing much better overall, but right at the start I had a pretty big flare. So it was a pretty unpredictable journey overall....it's such a shame we understand the interaction between hormones and the immune system so poorly. I think hormones just have a huge effect on inflammation....
With me I always had to take prednisone for at least 2 weeks before I saw an effect on erythromelalgia, and I usually had very high doses of like 60mg/kg per day. So not sure if 20 mg for a couple of weeks will do much....did you see what Prof. Oaklander suggests in her paper? She suggests 1mg/kg/d for 4 weeks followed by taper.
I'm so glad my blog is helpful to you, and I'm glad I met you this way. It's also helpful for me to connect with others and hear your experiences. I'm sure you'll find a more effective treatment soon....it's good to just keep trying stuff until you find what works.
All the best from Switzerland,
Julia
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