When my neuropathy came back...

My second neuropathy flare after almost 4 years in remission 

Hi everyone, good to see you back here! 🌺 

In this post I'll write some more of my story with autoimmune small fiber neuropathy. I wrote in one of my last posts, that prednisone had gotten my small fiber neuropathy into remission back in 2014. For months after this, I was worried that my symptoms would come back any second. Particularly, whenever I had a cold, because this is what triggered my neuropathy in the first place. 

But time passed and nothing happened. And as the years went by I became more and more confident that maybe this was just a one time reaction to a virus. After all, there were quite a few reports out there of patients with a so called 'monophasic' flare of post-viral small fiber neuropathy, which disappeared after some sort of immunotherapy. 

So I went about my life normally again, and I applied for a scholarship to do a postdoctoral fellowship in Boston. I've always wanted to live and work abroad for a while, and after experiencing how quickly things can become physically impossible, I figured I better not wait too long. 

Turns out I got the scholarship. 🌺 The only downside to this was that Steve and I had originally planned to go to Boston together, but then he got a new job which he liked in Switzerland in early 2016, so we decided that it was better if he stays in Switzerland and we'd both go a bit forth and back. Steve managed to get some prolonged unpaid holidays and I was quite flexible to spend time in Switzerland as well, as I was paid by my own scholarship anyway.  

Flare two started out of the blue while I was in Boston

So in April 2016, I moved to Boston for a 2-year postdoc at a research group at the Harvard Medical School, which is affiliated with some large hospitals in the area. I spent 2016 and 2017 there and I really loved the city. Steve spent both summers there with me and we traveled up to Maine, New Hampshire and Vermont and discovered the area. 

In fall 2017, my time there came to an end and I planned to move back to Switzerland in early December 2017. In mid October, I caught a cold and was feeling a bit under for a few days, but it wasn't anything major and I didn't think much of it. About 4 days into my cold I went and got the flu shot, since I was feeling fine enough and figured I better get that done. 

About a week after my cold, a tingle in my foot started

But then about a week after my cold and about 2 or 3 days after my flu shot, I noticed this subtle tingle and odd feeling in my left forefoot. It was really nothing much at that time but somehow I instantly had a bad gut feeling and it kind of stressed me out. 

I'd had several moments when I had gotten stressed out about some odd sensations over the past years, but usually the symptoms dissolved and I was able to relax again. So I  told myself that surely this is just me stressing and over-focusing, and that this would just pass. 

But somehow I couldn't get over it. This tingle and odd feeling lasted for about 4 days. It was a nice long fall weekend in New England and about 4 days into these symptoms I went on a trip to New Hampshire for a hike to see the nice foliage during Indian summer with friends. 

This is us sitting on top of the hill we climbed looking over the beautiful scenery. We walked up and downhill on hiking trails for about 3 hours, and although I could feel this odd tingle in my foot I wasn't actually in pain or anything. It just kind of felt like something wasn't right.

Symptoms were a bit stronger after the hike

When I arrived back at my apartment and took off my shoes, I felt that the tingle in my foot had started to get stronger and I started to really freak out. I hadn't mentioned my worries to anyone because I tried to tell myself that it was absolutely nothing. But as I sat in my apartment by myself, I realized that something probably wasn't right and I called Steve, who was back in Switzerland at that time. I told him that I was freaking out because I was worried that my neuropathy was about to come back.

Obviously that then freaked Steve out, because we both did not expect this and obviously 2014 was also kind of traumatizing for him. Given that he was back home, there was really not that much he could do at this point, so he recommended I just take a sleeping pill (luckily I had some of those to deal with an occasional jet lag) and go to bed. I think we just both hoped I would wake up and it was just a bad scare. So that's what I did: I went and passed out. 

I woke up in pain and full body discomfort

But the moment I woke up the next morning I knew I had a problem. My feet were tingly and sore and my hands felt like they had this electric layer all over them. On top of that my nose was really itchy and basically my whole body felt itchy. Within a day, all my symptoms I'd had in 2014 were back full blown. 😩😩😩😩😩😩

• My feet were sore and tingly and putting on shoes was painful
• The bottoms of my feet felt like I was walking on gravel
• My fingers were sore and felt like they had an electric layer on them
• My nose was itchy and felt as though I had to sneeze
• My arms and legs just felt itchy all over and scratching didn't help at all
• My feet would turn red (erythromelalgia) whenever I walked or was a bit warm, like you see in the picture below. This is literally after walking for a couple of minutes and its really sore.

I had never been to a doctor in the US

It's one thing to have neuropathy coming back, but it's a whole other story to have this happening while living abroad by yourself with travel health insurance only. I had kept my main health insurance in Switzerland and planned to just go to the doctor whenever I was there. So obviously I had never been to a doc in the US. Had I been back home in Switzerland, I would have called Dr. Soland and could probably have seen him the next day to figure out how to go about this. 

For a second, I literally contemplated to book a flight and to just fly back the same day before it got worse. But then I figured that this would just get super complicated, as I was going to move back home in 6 weeks anyway and would have to clear my apartment etc.

After all, I sort of knew what to do; I had to start prednisone treatment as soon as possible and hopefully symptoms would resolve soon. Being a pharmacist, I actually carried a load of prednisone with me wherever I went anyway since my first flare in 2014.  

Plus, I was in THE medicine city. Boston is probably the city with the highest density of medical specialists in the world, and I was working at one of the best hospitals in the world. So if anywhere, this was the place where I could get really good care by specialists. I just had to make an extra effort to find my way around the system in a moment when I already felt super beat down. 

I knew one of the neuropathy experts worked at my hospital

During my first flare in 2014, I had to do a lot of literature research to find out what I had. During this literature search, I came across some publications by Prof. Maryanne Walker (not her real name), who is one of the few neurologists who is specialized in autoimmune small fiber neuropathy. 

Coincidence had it, that I actually worked at the same hospital as Prof. Walker, so I thought surely it must be possible for me to see her. BUT.....I underestimated American bureaucracy.....🤯🤯 If you think Switzerland is a bureaucratic country, let me tell you, the Americans have taken bureaucracy to the next level.😂 

Naively, I just called Prof. Walker's office and asked if it was possible to see her. There was a lady on the phone who told me that generally Prof. Walker was not accepting new patients and that if I was an emergency, I'd have to get referred by my primary care physician.

I had to find a primary care physician

Fair enough, it's standard in Switzerland as well that you have to get referred to a specialist by your primary care physician, but the problem was that I had no primary care physician and turns out it's almost impossible to find one. 

I asked some of my work friends and called their primary care clinics to see if I could come in, but all of them told me that they didn't accept new patients, or that I could get an appointment in 3 months or something.  

After a day of research, I found a walk in primary care clinic, which is run by one of the large hospitals. This clinic was downtown and it was a lot more fancy than any primary care clinic I had ever seen in Switzerland. I was brought into my own shiny room where I even had my own huge TV to entertain me while I waited.

After a while a nurse practitioner came in and asked me why I was there. So I told her about my symptoms and my history of post-viral small fiber neuropathy. She did some very basic neuro exams, and like always could find nothing wrong. She had obviously never heard of my illness, so I asked her to prescribe prednisone and to refer me to Prof. Walker, which she did. 

I never actually saw a physician during this visit but later got a bill of about 400 USD for a 10 minute consultation and a prescription....oh well🙃

I was told that my referral should be through within 2-3 days and that I will get a call by the hospital. I was explicitly told I did not have to call and that I will be contacted at the latest within a week. But experience taught me that these things tend to not work as promised, so I was ready to stalk the c..... out of this hospital until they give me an appointment....and let me tell you.....it was A HASSLE but I managed.👻 

Alright, this post hast gotten kind of long already, so I will continue next time. Spoiler alert: I did actually manage to see Prof. Walker and in hindsight I'm very thankful for the fact that I did stay and fight through the bureaucracy jungle. 

And meanwhile I wish you all a good start into the week. Thank you all for reading my blog. 🌺 

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Daratumumab - 3 week update

3 weeks into daratumumab therapy 

Hi everyone, good to see you back here! 🌺 

It's been 3 weeks since I've started daratumumab (Darzalex) as an off-label treatment trial for my autoimmune small fiber neuropathy, so I thought I'd give you an update. 

In short, I can tell you that I still don't know a whole lot more. Some symptoms have definitely changed but my neuropathy is far from gone. I'm still having trouble figuring out what's going on and making sense of my symptoms / change of symptoms. But I'll try and summarize what's happened so far. Maybe that'll help me making some sense of it all myself as well. 

The main problem is that nobody can tell me what to expect, so anything that happens throws my mind off onto a wonder..... First, I don't know what exactly is going on in my body, so I don't know if daratumumab is going to work at all.  Second, nobody has been able to tell me how long it would take until I could feel a change and how it feels when small fiber neuropathy heals. My small fiber neuropathy has been poorly controlled for about a year now, so there would be quite some damage in my small nerve fibers by now. The good thing about small nerve fibers is that they grow throughout our lives, but I have no idea how long it would take for them to regrow, how severe the damage is, and how it would feel when they repair themselves. 

The longest I've ever gone without proper treatment was for 3 months before I started my prednisone treatment in 2014. Back then my symptoms were restricted to my feet and hands. Back then it took two to three months until symptoms were gone, so I definitely don't expected an immediate resolution of symptoms. But because my neuropathy has spread since then I also don't expect it to be the same as back then.

So let me try and summarize what I've noticed so far.

Positive changes: 

• The skin on my hands and feet seems less dry and more smooth. For the first three days into therapy my hands felt a lot more dry than usually and then about a week into therapy I noticed that it got better. Below is a pic of my hands on a day last fall when they were really dry. They're not always that peely, but since my neuropathy got out of control they have felt a lot more dry and scratchy than they usually do, and once in a while they would get peely like this. I will spare you a pic of my feet, but I can tell you that they get very dry too.🤨People with small fiber neuropathy may have increased or decreased sweating, because the neuropathy causes sweat glands to malfunction and they may die off too. In my case I think that I have reduced sweating, which causes the dry skin. During my autonomic function testing back in 2014, the doc did notice reduced sweat response in my most sore foot. 

• My fingers feel less sore. When I'm typing on my computer, I always wear a tennis sweat band around my wrists, because the edge of my notebook irritates the bottom of my hands and wrists. It's a weird hypersensitive electric kind of feeling. About one and a half weeks ago, I noticed that I can work quite a bit without waearing the sweat bands. 

• The strength in my pinky is back. This also happened about a week into therapy. My pinky gets weak and clumsy from my small fiber neuropathy. My neurologist has previously told me that he also noticed reduced strength in my toes, but I don't really notice this myself. I usually notice that my pinky is weak for instance when I rub face cream onto my face and I notice that my pinky kind of drags behind. About a week into therapy I put on face cream in the morning and noticed that my pinky was functioning properly when I put on face cream, just from one day to the next. During the first week it felt a bit more weak and then suddenly it was gone.  

• I reduced the dose of pregabalin/Lyrica by 50mg without worsening of burning pain on my legs. I started pregabalin / Lyrica about 2 months ago, because I developed more severe burning pain in my legs and feet. Overall I don't have much of the burning pain in my legs at the moment. I'm currently on 175mg / day. 

• Reduced redness on my legs after showering: my legs get these weird red spots in the area around my knees after showering. I think this is a form of erythromelalgia, which I get in my hands and feet when I get hot. About a week ago I noticed that I have these spots a lot less, even after a hot shower. Below is a pic of the erythromelalgia I get around my knees after showering. It's not always that bad, sometimes it's also just a few red spots, but I thought I'd pick a good photo for your🙃
  
  
  

Negative changes: 

• The most prominent negative change is that I've developed a patch of pretty severe neuropathic pain on my lower right arm. This developed about 4 days ago and is super weird: my lower right arm has been affected by small fiberneuropathy for about a year now, much more than my left arm actually. However, it always felt more like a dull ache and mild weird sensations for instance when it touched the desk while I was typing. It never actually hurt when clothes touched it or anything. For the past four days my arm really hurts from any kind of touch, even if I just slide my finger across the skin. I also have to pay attention that clothes don't rub against it because that is very irritating. It's a clearly defined area, which is most severe around the bone of my wrist and runs down the top part of my lower arm. I drew it onto my arm in the pic below, so that I can remember where it is. It's not the end of the world, but it's just so odd, because I've never had this before and of course this sends my brain 🧠 on a wonder what this means. Does it mean that nerves are growing back and they are over-reacting?? (🪵🪵🤛🏻🤛🏻) or is my neuropathy getting worse??? Does this happen because I over-focus on my pain?? Or is it just coincidence???🤯🤯

• Over the past three days the skin in other areas of my body has been hypersensitive. Most prominently the skin on my back and torso feels sore. It's not too bad, it feels like a dull ache when I lean against my back on the sofa or when I touch it otherwise. It also feels hypersensitive when I put on clothes for instance.....

• I developed an itch in my upper nose about 10 days ago, which feels as if I had to sneeze. I've had this itch during previous neuropathy flares and it's really annoying, but it had actually been gone for the past half year. 

• Generally I've been more itchy in my hands and feet and less intensely in various spots all over my body. 

So, what do all these symptoms mean? WHO KNOWS!!?? 

How long will they last? WHO KNOWS!!??

I know that a few others with small fiber neuropathy read this blog. So if any of you has made a similar experience or has any other advise please do reach out!  

Bottom line is, I need to be patient, and I'm really not good at that anymore. I'll try to take it day by day and not overthink things, but that is kind of a brutal mind game at the moment 🤯🤯 because it's impossible not to overthink for me at the moment. Either way, I'll find out and I'll keep you all posted as always. Thank you all for keeping your fingers crossed for me.🤞🏼🌺

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SARM1 inhibitors: a cure on its way?

SARM1 inhibitors - a future cure for small-fiber neuropathy? 

Hi everyone, good to see you back here! 🌺 

Today's post is for my fellow pharma-nerds, treatment optimists, and for everyone who is interested in drug development. 

I'll write about a drug class called SARM1 inhibitors, which are in early drug development, and which could potentially treat autoimmune small-fiber neuropathy and many other neurodegenerative diseases in the future. 

I like reading about such drugs in development, because it makes me optimistic that in the future there will be much better treatment options for many patients with rare nerve diseases. It's amazing how much we can fix, as long as there are enough money and intelligent minds going into it. 🌺  

Disarm Therapeutics

The company, which is working on these drugs is called Disarm Therapeutics, a spin-off from the Washington University in St. Louis, Missouri, USA. The founders of the company are researchers, who have worked in academia for decades, during which time they discovered the molecule called SARM1 and its functions. 

I think they are really onto something!✨ 

SARM1 inhibitors are a completely novel therapeutic approach, which may potentially treat a huge range of devastating neurological diseases. 

What does SARM1 do?

The molecule SARM1 is present in all our nerves and functions like a switch, which controls whether or not a very important part of our nerve fibers (called the axon) degenerates/dies off. Axonal degeneration is the main driver of many neurological diseases. But let's take a step back...

What is an axon, and what is axonal degeneration?

I'm not a neuroscientist, so if you find that I write something incorrectly, please let me know and I'll fix it. Basically, we all have nerves running through our bodies, which originate in our brain (called the central nervous system, CNS), and run through the spinal cord, and then out into the periphery (peripheral nervous system, PNS) all the way into our toes and fingers. 

The peripheral nerves are roughly divided into large peripheral nerve fibers, which control motor functions, and into the small nerve fibers, which control pain, vascular function and other autonomic (unvoluntary) functions in our bodies. 

• Nerve fibers are long strands of nerve cells, also called neurons. 
• Neurons transport electric stimuli through our bodies. 
• If you touch something with your finger, this triggers an electric stimuli in a neuron, which then travels up to your brain so you can feel it.
• Axons are part of every neuron. They have the job to transmit information from one neuron to another, or from a neuron to muscles or glands. 
• Axons can be up to meters long. 
• Axonal degeneration means that axons die off.
• When axons die, neurons can't function.
• Depending on which type of neuron is affected (CNS, PNS, large fibers, small fibers etc), patients have different diseases.
• In small fiber neuropathy, axons of the small peripheral nerve fibers are affected. 

Many diseases are caused by axonal degeneration 

Axonal degeneration in the CNS:

• Amyelotrophic lateral scrlerosis (ALS)
• Altzheimer's disease
• Multiple sclerosis (MS) 
• Parkinson's disease

Axonal degeneration in the periphery:

• Diabetic neuropathy
• Chemotherapy induced neuropathy
• Small-fiber neuropathy
• Traumatic nerve injuries 
• Glaucoma 
• Genetic forms of neuropathy
• and many more.......

All these diseases have different causes, like in my case an autoimmune reaction. For some of them we have no idea what the actual cause is. But they all have the following in common - that something induces the axons in specific neurons to die off, which causes detrimental symptoms. This is why these diseases are called neurodegenerative diseases. 

SARM1 controls whether or not an axon dies or lives

Researchers have observed, that in many neurodegenerative diseases, axons die off much earlier than the rest of the neuron. They suspected that there must be a specific mechanism, which triggers this. However, researchers have tried and failed to identify what causes this axonal degeneration for decades.

During their academic careers, the founders of Disarm Therapeutics have identified SARM1, a molecule, which seems to trigger axonal degeneration once it gets activated. Here is a link to an scientific review on SARM1 inhibitors.

We all have SARM1 in our neurons, and it is usually kept inactive by our bodies. However, SARM1 gets activated by different pathological stimuli, and from what I read it's not entirely understood how. However, it was observed, that once it's activated it causes a cascade of reactions, starting with calcium influx into the cells, which eventually leads axons to die off. This process is called Wallerian degeneration (don't worry I've never heard about that before either 🧠🧠).

So those researchers figured that if you could inhibit SARM1 from activation, you may prevent this Wallerian degeneration and thus you could prevent axons from dying off. They developed a method to produce many different molecules, which may inhibit SARM1 from activation. 

Where do SARM1 inhibitors stand in the development?

It is still very early days in the drug development process for SARM1 inhibitors. They have developed a bunch of molecules, which do inhibit SARM1 in lab tests. First pre-clinical (so not in humans) studies on cell lines and mice are looking promising. They were able to show that their drug candidates do prevent axons from degenerating when exposed to chemotherapy.

Of course it is still a very long way; only 1 in 10 drugs that are ever tested in humans eventually make it onto the market. But these ones just sound so fascinating, and I think given that they are developing a whole range of molecules they want to test, they have a valid chance. Big pharma has recognized their potential, and Eli Lilly bought them in fall 2020 for 135 million US Dollars. 

We need a biomarker to measure axonal degeneration

Until today, there is no easy routine lab test that you can do, to test for axonal degeneration. However, it's impossible to develop a drug to fix axonal degeneration, without a means to measure if it works. So these researchers are about to fix this problem as well. 

They found that whenever axons die off, they release a molecule called neurofilament light chain (NFL) into the blood stream. Neurofilaments are parts of the neuronal cytoskeleton, and are especially abundant in axons. The problem was though, that concentrations of this molecule are so low in blood that it was really hard to pick it up in a blood test.  

However, they have now developed a test (a SIMOA assay), which can pick up tiny concentrations of NFL in the blood. And they were able to show that measured concentrations correlate with disease severity and prognosis in case of multiple sclerosis.

I'd love to be able to take this test

Unfortunately this test is not available routinely yet, because I'd really like to do it. It's suspected that in small fiber neuropathy, the axons of the small nerve fibers die off. But in reality nobody really knows what is going on. 

At the moment I'm undergoing this new daratumumab therapy. The only way to see whether it works or not, is for me paying attention to my symptoms. And like I told you before - that can be very stressful for by dear friend BRAIN. 🧠🧠🧠🧠

With this test, I'd be able to see whether there is more/less NFL in the blood before / after treatment, which would show if the treatment is successful much before I'd notice a change in symptoms. I'm sure some time in the future this test will be a lot cheaper and available as a routine test, because it just makes so much sense to me. I think its a genius invention.

So let's keep our fingers crossed (🤞🏼🤞🏼) that some SARM1 inhibitors will roll through the drug development process smoothly. And that they will become available as powerful weapons in the fight against disabling neurological diseases in the semi-near future. 

Now I wish you all a great weekend and hope this post was not too technical. After all, it's your fault for reading to the end, in case I bored the c* out of you.😂

In the next post I will give you an update on my daratumumab treatment again. 🌺 

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Daratumumab therapy started

My daratumumab therapy started 

Hi everyone, good to see you back here! 🌺 

Last Tuesday, my daratumumab therapy started, so I thought I'd give you a quick update. Actually, there is not much to report yet anyway, but I'll just tell you how the first infusion went.... 

I spent all day at the hospital on Tuesday 

On Tuesday early morning, Steve drove me to the hospital in Lucerne and I went to the hematology ward where I get my treatment. I'm usually treated at the neurology ward, but nobody there knew daratumumab, so we decided to do the therapy at hematology, where they are very familiar with the drug.✨  

The hematology ward is in a brand new part of the building and everything is modern and nice looking. I first had to go for a blood draw and to get this nice little iv access put in place. Daratumumab is actually incjected under the skin, so I didn't need the access for this,💉 but the docs need it in case you have any adverse reaction and they need to give you drugs quickly. 

First I got some drugs to prevent infusion reactions

After that I was sent to my infusion room. I had a nice room to my self almost all day and I was sitting by a big window. An hour before I got the actual daratumumab injection, I got some drugs to reduce the risk of an allergic infusion reaction. 

They gave me 20mg dexamethasone, which is a pretty high dose of a drug similar to cortisone/prednisone. Dexamethasone is also given to people with severe COVID, but that just as a side note. I also got an iv antihistamin called clemastin, an asthma medication called montelukast, as well as some paracetamol. 

Then I had to sit there for an hour to let those drugs do their job. After about half an hour I suddenly felt super tired. I already expecte that, because it's a typical reaction to the iv antihistamines, and I have had them before with the same reaction. 

I made sure I brought my iPad so I could watch some light-weight Netflix shows. I also don't really mind being tired and dosy on a day when you just have to sit in a reclining chair with a drip in your arm anyway. 

Then daratumumab was injected into my belly

Daratumumab is given as a subcutaneous (SC) injection. It can also be given as an infusion into the vein, but it's easier and better tolerated if you get it subcutaneously. In the pitcure below you can see what a SC injection is. Basically, the drug is injected into the fatty tissue under your skin, typically into your belly or an upper leg or so. 

Many drugs are given as SC injections, such as insulin for diabetes.💉 Usually it's  very small amounts of liquid that are injected over a time period of a few seconds. 

In case of daratumumab, it's actually a pretty big syringe of 5 ml. The nurse put the needle into my belly and then sat there for about 5 minutes slowly pushing in the liquid. There was another nurse there too, who was being trained on the ward, so the two of them tried to distract me a bit and asked me all sort of questions about my neuropathy. 

We had a chat about my illness, and obviously they both had never heard of it too, but they were interested. It looked a bit strange having this syringe stuck in my belly for 5 minutes,💉 but the injection itself doesn't actually hurt. So if you ever need daratumumab, I can tell you - the injections are totally managable. I'll try to take a picture of the syringe and/or the injection next time.

After the injection I basically just had to sit there for 6 hours, and every 15 minutes or so a nurse came in to measure my temperature and blood pressure to make sure I didn't have an allergic infusion reaction. Thankfully I didn't.🙏🏻 

This was my companion for the day, following me everywhere. 

When I left the hospital I noticed some side effects

Around 5 pm I was ready to go and Steve was waiting with the car. As I walked through the hospital I noticed that my vision was super blurry and I had a hard time finding my way around.👀👀

The nurse had already warned me that this is a frequent side effect of the antihistamine, but I was actually fine all day. I also don't recall having had this the last time I got these drugs - but as always you have to stay flexible, right? 🙃

After we got home we ordered some food and were watching 'Home and Away' on TV. Home and Away is an Aussie soap opera that we like to watch. I told you before, Steve is Aussie, and a few years ago he found this soap on one of our TV channels and started watching it for some homey feeling and beach views.😃And now he got me totally addicted to it too. 🌺

Luckily this soap is totally predictable, because I sat there and actually couldn't even recognize who was on screen at all. I could see sharp within a radius of about 10cm, but anything in further distance was just one big blur. I was still really tired from the drugs anyway💊, so i just went to bed, ready to wake up with vision in the morning.

But turns out I was basically blind for almost two days 

When I woke up the next morning I could still see absolutely nothing.😩 In the search for some entertainment, I started organising my blog, holding the screen of my notebook about 10cm in front of my face. 

This was probably not the smartest thing to do, because my eyes didn't seem to recover but actually got worse. So in the afternoon I even had trouble reading my phone and I parked myself on the lounge and listened to some podcasts for the rest of the day. FINALLY, towards the end of the day I noticed that objects started to have contours again. And on thursday when I woke up my vision was back👀🙏🏻

How am I doing now?

I didn't have any other side effects from daratumumab so far, except for a slight bruise on my belly and a very mild headache occasionally.🤞🏼🌺 Compared to the IVIG (immunoglobulin) infusions I've had previously, it's been a walk in the park so far. IVIG infusions have actually traumatized me a little, because they've regularly put me to bed for days and weeks with the worst headache ever and pretty severe nausea. I'll write about these infusions another time.  

How is the neuropathy going?

That's a difficult question 🙃The tricky thing is, that daratumumab has neven been used to treat small-fiber neuropathy, or at least not that I know of. So nobody can tell me what to expect at all. My neuro keeps telling me that he finds it very interesting. 👻

I appreciate that he finds it interesting and stays tuned to my treatment, but everytime he says this it just hammers in the fact that there is nobody outthere knowing what will happen. But that's just how it is and I've been dealing with this for a while now.... 

I try to tell my brain not to analyze every single symptom all the time, but obviously BRAIN🧠🧠 has it's own agenda and it likes to over-analyze.🧠🧠🧠 So far, BRAIN has not come to a conclusion yet though. 

For the first two days I didn't notice any difference at all. Then, from Thursday on I felt like my symptoms got a bit more intense. But then again this could just be because BRAIN likes to focus on them. Realistically, I will not see an immediate effect anyway. 

With autoimmune small-fiber neuropathy, some immune cells distroy the neurons of the small nerve fibers. So even if you stop this immune reaction, the nerve fibers would need some time to recover. And the more destroyed they have been the longer it will take for them to recover. The one good thing about small nerve fibers is that they actually regrow throughout your life. This is not the case for large nerve fibers. 

When I had prednisone treatment, it took about 3 weeks until I could definitely notice a difference - so this is kind of my reference for now as well. So I guess I'll just have to wait and hope (🤞🏼🤞🏼) that it will do something. You'd think that these infusions sound unpleasant, but for me the wait after is a lot worse than going to get some infusions....🌺

Either way, I'll keep you posted on how it's going (🤛🏻🪵🪵) and hope you have a good Sunday!

BTW: For those who subscribed to my blog, you probably noticed that the email design has changed. This is actually what I did semi-blind on my computer on Wednesday morning, so I hope you appreciate it.😂 Many of you told me that my old emails looked like spam, and I totally agree. I think the new ones look a lot better - so 🤞🏼they will work as they should.🌺

For those of you who have not subscribed yet and would like to experience my excellent email design as well - feel free to subscribe below! 🌺

I've you've missed my previous posts and want to know what daratumumab is and why I get it: here are the links to read up. 

New treatment option?

https://mysmallfiberneuropathy.blogspot.com/2021/02/new-treatment-option.html

Insurance didn't approve daratumumab 

https://mysmallfiberneuropathy.blogspot.com/2021/03/application-daratumumab.html

I will try daratumumab

https://mysmallfiberneuropathy.blogspot.com/2021/03/daratumumab-for-small-fiber-neuropathy.html

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