I'm having a neuropathy relapse

What a setback..... 

Hi everyone, good to see you back here! 🌺 

This is a post I really hoped I didn't have to write... 

Some of my neuropathy symptoms have come back! 

We've just gotten back from a 2-week vacation in Italy. I was so looking forward to this trip, as I was finally pretty much symptom-free after a year of massive discomfort. I really needed some time away from work and our house, in which I've spent so much time over the past year, to just air my brain and to relax. 

We started out really well. We drove our car from Switzerland to the area around Bergamo, where we stayed in a little agriturismo (B'n'B) on the country side. We've stayed there before and we love this relaxing remote place. The next day we went for a hike and my symptoms were very well controlled. I was hiking without any problems, except for being pretty out of shape after 2 years without exercise. 

I was so happy that my feet literally caused no problems at all, and I kept going on about how great they were going. Back in June, when we went hiking in Switzerland for the first time, I could still feel some pressure in my left forefoot when walking. 

Then we drove down to the Ligurian Riviera...

We had an appartment in a little old village by the sea, called Tellaro. On our first day we did a little hike/walk from Tellaro to Lerici, which is the closest larger village in the area. Lerici isn't far away, but we first ended up on a hilly hiking trail, which obviously wasn't maintained anymore, so we eventually had to turn around and had a longer more strenous walk than we planned on. 

This is Steve trying to make his way through the trail until we gave up. 😂 Anyway, I'm telling you this, because on that day my feet were still perfectly fine and I had no trouble doing this walk at all.  

The next day we visited a little village (Zanego) on top of the hill above Tellaro. We walked uphill for about an hour, which I managed although under quite some complaining, because my fitness is not the greatest.🙈 However, my feet were fine. We got up there and randomly found the nicest little restaurant where we had some great pasta and a glass of wine. 

As we started our walk downhill, I could suddenly feel my neuropathy 'pressure spot' on my left forefoot. 🤯 

I call it my 'pressure spot' because it's a sensitive spot on the bottom of my left forefoot between my big toe and the second biggest toe. It sort of feels as though there was a splinter stuck deep inside my foot and the area around it is kind of numb. This is always the first symptom I can feel when neuropathy is coming on.

This is where we were walking when I felt the 'pressure spot' come on.

The 'pressure spot' on its own wouldn't be too painful, if it wasn't exactly in the spot where my whole body weight is on when walking. But maybe this is also the reason why I always feel it first....🤷🏼‍♀️ 

Obviously, this freaked me out a little, but I told myself that I'm probably just feeling some residual symptoms. After all, it was a pretty hot day and I was still recovering from neuropathy. So I just kept walking and was happy it didn't get worse. 

Once we got back, I had a rest and Steve went for a swim. After that we went to get our daily aperitivo by the beach and then had dinner. I was wearing my Birkenstocks (those are usually very uncomfortable/painful when I have bad neuropathy), and my feet felt ok, so I was somewhat relieved. 

But when I got into bed, I could feel that my left forefoot felt different...

It was a very familiar feeling, which is hard to describe if you have never felt it. It feels a bit as though the affected skin was very sunburnt and thin, and as though it was about to crack. Just a bit like my skin was made of painful, dry, hot paper. At the same time I get a feeling as though there was a band around my forefoot putting pressure on it, even though I'm barefoot. 

I kept telling myself that this is probably nothing...

...and that I had just overdone it with all the hikes. But my gut feeling knew that something wasn't right. Unfortunately, my gut almost always knows immediately when something is wrong - at least when it comes to small-fiber neuropathy.

The next morning we got up and walked down to the beach to go for a dip in the ocean before we drove back inland towards Modena. The walk down in flipflops was fine and my feet weren't sore. But soon after I could feel this strange feeling coming back, and it started to sink in, that something just wasn't right. I was pretty sure that my neuropathy symptoms were coming back. 

The next day symptoms were still there and they were slowly getting a bit more pronounced. I could also feel a slight tingle and hypersensitivity in my fingers. We went to see Modena, which seems like a pretty nice city, although for obvious reasons I wasn't really able to enjoy accordingly. 

As I started to realize that my symptoms were not just from overdoing it, but that they were actually from active neuropathy, I temporarily lost my spirits, because I ZERO expected this!!

I was soooo bummed out!!! This was meant to be OUR HOLIDAY, with me FINALLY being well again after over a year in constant discomfort. On top of that, Steve will start a new job in September and we just wanted to have a nice time and relax a bit before that, as obviously the whole last year was really stressful for both of us.

But life had other plans...not much I can do about it...

For a moment there in Modena, we sat on a park bench and considered packing up and just driving back to Switzerland. At first, I thought that I probably just needed another daratumumab injection as soon as possible, because I did switch from weekly to biweekly infusion a few weeks ago. 

But then we decided that there is not much point in turning around right away, as there was probably nothing I could do about it right this second and symptoms weren't that bad yet anyway. So we decided that I was going to contact Prof. Wexler to figure out what to do. And until this was sorted out, we were just going to enjoy our holiday as much as possible. 

Of course, ultimate relaxation was off the books now, but being away from home and enjoying some good food is still more relaxing than sitting at home after interrupting a vacation thinking about my situation. 

So we continued our trip and spent 2 days in Bologna (definitely want to go back there - I really liked this city). Then we drove up to the north of Lake Garda where we had a nice appartment in Arco and some bikes, which made it a lot easier for me to get around. 

Finally, we spent 3 nights on a vineyard in South Tirol, which was nice, but probably not the most ideal place for me, as the whole area is basically made for hiking. There was a ton of senior pensioners happily swarming out on their daily hikes in their hiking gear, which was kind of frustrating for me, as ONCE AGAIN, I couldn't walk very well.😡 

Anyway, the hotel had a nice pool, so I mainly parked myself there. 

HOW COULD NEUROPATHY COME BACK????

That's exactly what I was wondering too. 🤷🏼‍♀️ 

After all, daratumumab was working great and I was still getting frequent injections....

I was absolutely convinced, that my maintenance therapy with daratumumab would keep my neuropathy stable. So as we got back from Modena, I wrote an email to Prof. Wexler, telling him what had happened. He wrote me back the same day and also sounded quite surprised about my symptoms. He told me to observe my symptoms, as his first intuition was also that I may have overdone it with my hikes and that it might get better again. 

I wrote him back, that I didn't think it was just from overdoing it, and we agreed to observe my symptoms for now and to talk on the phone when I get back from Italy to decide what to do. Obviously, because my treatment is pretty experimental, we both had no idea what the best next step was. 

So, as always I started a pretty frantic literature search...

Over the past years I've learned that if you have a rare and under-studied disease, you have to be your own advocate and you have to do a lot of the work yourself. This is not to say that I have bad doctors. But no doc out there has time (or gets paid) to do days of literature research for each of their patients. That's just not how our system works. 

Prof. Wexler is great and he really wants to do something for patients with autoimmune small-fiber neuropathy. I'm very happy he is open-minded to my ideas and to try new treatments. He does actually read most papers I bring in to discuss, which is a lot already. 

The idea to try daratumumab came from me and N, my hematology-friend. Neurologists are not very familiar with this drug at all, and my hematologist who supervises my injections only has experience giving it to patients with cancer, which obviously is a whole different setting. 

So I knew I had a lot of work ahead trying to understand what was going on. 

Once again, I dug myself into the literature, and read all the big clinical trials on daratumumab and experts opinions on how resistances to the drug may develop etc. 

I know, sounds like a great holiday, right.....?? 🤯 

Thankfully, we had a nice appartment in Arco with good wifi, so I spent a day there putting together and reading everything I had found during my literature searches in the car, while Steve was driving. 

Thinking about it for a while, it seemed pretty unlikely that all I needed was another infusion. Daratumumab stays in my body for about 3 weeks after every injection, and my last injection wasn't even 2 weeks ago yet. So my intuition was that I had some sort of resistance problem or whatever. 

I found quite a lot of interesting information, but the main problem is, that all studies have been done in patients with mulitple myeloma, for which dara is licensed. 

An autoimmune disease is something completely different than cancer, and there are pretty much no studies (apart from case reports) out there on the use of dara in autoimmune diseases. On top of that, dara is pretty much never used by itself anymore in patients with multiple myeloma. It's usually used in combination with at least 2 other drugs, so it's hard to know what effects could be expected from dara being used on its own. 

Don't worry, I won't go into detail about what I've read and what I think could be the problem, as I'm still kind of confused about it myself. However, I do have a theory about what might be going on, and that is at least something. 

But I need to talk to Prof. Wexler first before I confuse you all. 🙃 

In short, I think daratumumab may be a drug that is better to be given in intervals for autoiummne diseases, similarly to how rituximab is given. But I think this evidence still needs to be generated so this is just my hypothesis at the moment, and may turn out to be wrong, so please don't take my word for this.....

So what's next?? 

We've arrived back in Basel a few days ago. Being home is always a bit tricky because you are less distracted and back in 'reality'. Overall, symptoms are annoying enough to prevent me from exercising and walking in proper shoes, but they are not as bad as they were before dara (yet). 

The next challenge now is to figure out what to do. Prof. Wexler wanted to call me on Wednesday, but then we were still travelling, so we agreed to talk on Friday. However, he ended up being too busy on Friday so this call didn't happen and now he just started his 3-week vacation. 🙈🙈🙈 

One of the most challenging aspects of my neuropathy is this constant waiting game while being in constant discomfort. I think everybody with chronic illness knows exactly what I'm talking about. It can literally drive you crazy to just sit around waiting for appointments and calls and whatever, while you know that if your doc was available 24/7 you may be able to do something about your situation right now. 

But I guess that's life. If we wanted to have a doc available to ourselves 24/7 we'd pay even a hell of a lot more for health insurance than we already do. 😂

Prof. Wexler did write me an email on Saturday to say sorry that he didn't make it and that he'll call me in mid September when he is back. Fair enough, I know a lot of people wait a lot longer for doc appointments, but I'm currently so frustrated that I missed this call.... I should just have arranged a call on Wednesday while I was away. Surely it could have been arranged, and I don't even pay for calls abroad....but silly me thought I could optimize my schedule, and now here I am....🤯🙈😡

So what did I do, being a good scientist?? I put together a power point presentation summarizing what I've found in the literature and put my audio voice over it explaining what I think is going on (digital lectures are one of the great skills I've learnt during the pandemic). 

I sent it to Prof. Wexler as an MP4: surely he needs some entertainment on his holiday as well. 😂 Pretty obnoxious, I know, but you gotta do what you gotta do when you fight for your health. 

So for the next 3 weeks I have to accept that this is me and lay low and make sure I stay distracted until I can plan the next steps with Prof. Wexler after his vacation. I also plan to write a few emails to some of the experts who have previously published case reports of dara to treat autoimmune diseases. Hopefully we'll get some additional insight from that. 

And meanwhile I have to try and keep a positive outlook

I'm definitely glad that I started dara and that I was doing so well for the last few months. But it's also a lot harder to have symptoms come back when I didn't expect them at all. 

I had just started to get used to feeling normal again...

In one of my behavioural economics classes, we had discussed a scientific study, in which they showed that people were willing to pay a lot more to get a mug back, which had been taken away from them, as compared to what people would pay for the exact same mug, which never belonged to them before. 

Goes to show that losing something that you previously had bothers us a lot more than not having something at all. In the same way I think that getting unwell after feeling better feels like a much bigger setback than to just continuously feel unwell. 

Obsiously I'm not trying to say here that one should not try to get better... it's just the moment when you realize that you no longer feel that great that is tough. Obviously setbacks will always happen, and it's in their nature that they are unpleasant. 

So I'll do my best to accept this situation for now, and to work towards getting back to where I was before. At least, the past few months have shown me that it is abosolutely possible to control my neuropathy. Also, given that it reacted so well to dara, we pretty much know for a fact now that my neuropathy is cause by some antibodies.

So on this note, I wish you all a good start into the week and I hope that in my next update I can share some better news again.🪵🤛🏻 Thanks for all your support as always and for your interest in my journey. I have to admit that my journey is scientifically quite interesting, if only I didn't have to constantly experience it physically. 🙈

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Categories: daratumumab, symptoms, treatment