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I'm doing a lot better 🪵🤛🏻
It's been a while since my 3-week daratumumab update, and back then I wasn't really sure if therapy was helping. Four weeks later, I´m very happy to report:
Daratumumab is doing a great job so far!
About one week into therapy, I noticed the first changes
when my hands started to do a lot better. Suddenly, I was able to type on my computer without my hands getting sore from touching the keyboard. I was super excited and couldn't believe what an easy ride this was.....
But then about two weeks into therapy new symptoms started
and I started to get these hypersensitivity symptoms in my lower arm and my back. Then my nose started to get itchy and tingly again. I was pretty thrown off about what was going on. It seemed like daratumumab was definitely doing something, but I wasn't sure if my neuropathy was getting better or worse. At that point, my feet hadn't improved yet but had actually gotten a bit worse as well.
About three to four weeks into therapy, I had a few days where my whole upper body was in pain simply from a t-shirt touching the skin, which is something I'd never had before. My skin always kind of felt scratchy and slightly burning at time, but never hypersensitive like this.
The first month of therapy was a brutal mind-game
Overall the first four weeks of daratumumab therapy were kind of brutal on my mind. I was over-analyzing every symptom 24/7, and with these daily changing symptoms and new ones popping up, I had a couple of weeks when I was struggling at keeping it together.
After all, I'm well aware that daratumumumab is one of the last therapy options I haven't tried yet. If it wasn't going to work there was really no obvious next drug to try and I might be stuck with neuropathy for good... And on top of that it is totally experimental, so nobody could tell me what to expect. So to put it lightly, there was a tiny bit of anxiety in the back of my mind, which I tried to ignore...🤯🤯🤯
I realized that daratumumab was actually doing something, because I didn't have this hypersensitivity before, but what if it made it worse??!!
I was telling myself that it's possible that healing nerves can cause my body to be hypersensitive. But after all I'm not a neurologist, and even neurologists only make educted guesses when it comes to autoimmune small fiber neuropathy. So what if the hypersensitivity was caused by the drug and was here to stay???
But about four weeks into therapy my feet started to get better
But then, about four to five weeks into therapy, I noticed that I was doing better. The itch in my nose disappeared again and I was able to wear regular ballet flats and go for small walks without my feet getting sore and despite pretty warm weather.
Walking in 'normal' shoes is something I haven't been able to do in a year. As soon as I put on shoes with hard soles, it sort of felt like I was walking on gravel and pain would get worse if I kept walking. I was able to walk in padded shoes more or less for most of winter (probably thanks to rituximab). But for the last 2 months my feet even got sore and hot in soft padded shoes from walking a few minutes.
But yesterday I went for a hike 🙏🏻
Steve and I are currently on the countryside in a house of my family for two weeks. Yesterday we went for a hike. I had been for little walks in the area over the past week, and I felt like it was time to try and walk a bit further. I couldn't believe it myself, but we walked for a bit over 2 hours in full heat and in hiking boots (about 15'000 steps). After about an hour, my left forefoot felt a bit irritated and a bit like it was swollen, but it didn't get worse and was absolutely tolerable. It kind of feels surreal, because a few weeks ago, even just putting on socks or hiking boots was painful.
I stopped Lyrica / pregabalin
Another great progress is that I've been able to stop pregabalin /Lyrica, which I started in March.
Thankfully, my experience with pregabalin / Lyrica wasn't bad. It made me a little bit tired, but it wasn't bad once I was on a steady dose. And it did help with the pain in my legs. So I'm glad I tried it and took it for a while.
But it feels so nice to be off this drug again. After all, it just masked the pain and didn't solve the root cause of my neuropathy anyway. Plus it didn't control my symptoms sufficiently anyway.
Hypersensitivity is getting better but is still there
I still get these weird hypersensitive areas on my upper body. The full-upper-body hypersensitivity lasted for about 2 to 3 days. Since then I've kind of had meandering symptoms, which move around on my upper body. Sometimes my shoulder blades are hypersensitive, sometimes my right arm, sometimes my back, and sometimes my hips - and sometimes all at the same time.😂 But overall it´s been getting less intense and it's not too bad anymore.
I talked to Prof. Wexler 10 days ago and he said that hypersensitivity can always mean two things: either nerve damage is getting better or worse.🤯 Apparently, it's something they often see when nerves heal after a physical injury.
He agreed that in the context of all other progress, these symptoms are likely from my nerves healing, and that he would interpret this as something positive. I was really glad to hear him say this, because obviously he's the expert, but it's what I've been telling myself and really hoped it was the case.
After all, I do have neuropathy symptoms all over my body, which means that small nerve fibers all over my body have gotten destroyed to a certain degree. Obviously, they don't just reappear from one day to the next. And it makes sense that newly growing neurons could cause hypersensitivity.
Now that I finally have a break, I notice how exhausted I am....
I'm definitely doing so much better than a few weeks ago, both mentally and physcially.🙏🏻🙏🏻 Not being in constant discomfort kind of feels surreal and normal at the same time, and I definitely notice how I appreciate little things that I just took for granted before.
Now that I finally have a break, I also realize just how exhausted I am from all this. I guess that is no surprise....🤷🏼♀️ For the past year I've kind of functioned in autopilot, pushing through from one treatment to the next, and from one day in pain to the next, trying not to think about the WHENs and IFs. After all, I didn't really have a choice on whether or not to keep going.
So I guess it's only normal that a year of physical pain, super limited activity, no treatment working, and the uncertainty about whether or not I'll ever be painfree again has paid a toll on my mind. And it's probably a good thing that you can't just turn a switch and go back to the way things were before. I've heard many people say, illness has made them a better person..... I wouldn't claim that about me, but surely there must be something to learn from all this. Anyhow (you can tell I get a bit philosophical about it😂), for now I'll just take it day by day and let it sink in.
I'm super thankful that finally something is working, but I also know in the back of my mind that this is likely not the end of the story. Just because a drug is controlling an illness doesn't mean it's gone, so I'll have to deal with my neuropathy in one or the other way in the future again.....but it's not today's problem and it's certainly good to know that there are drugs that can control it!
It makes me wonder....
It's definitely not a random coincidence that I'm doing better right now. I had to push really hard to get daratumumab treatment. But then again, there are so many factors that are out of my control, and it just kind of amazes me, how coincidental life can be. So to wrap this post up; here are a few deep philosophical thoughts about life from my side...don't worry, I won't go on about it for too long, as I'm definitely better at scientific writing.🙃
It just makes me realize that there are always some things that are in your hands and you need to fight for, and then again other things just happen and somethimes you just get lucky and sometimes you don't. In my case I keep thinking, it's not a given...
- that I´ve been given the chance to try daratumumab. I talked to many people with small fiber neuropathy in other countries who have been fighting for therapy for years and have still not been treated properly. Some of them are still in pain, some of them paid for drugs out of pocket and used up all their savings. I even talked to a girl from the US who is contemplating moving to Switzerland, because her insurance won't pay for immunoglobulins. Her entire body went numb because of small fiber neuropathy and she could actually show in blood work that she has an autoimmune reaction going on. I got very lucky in my case, because so far, I've always gotten access to treatment. I hope that publishing my case will enable some other people to get proper treatment too.
- to have a lovely friend, who is a smart hematologist, have the brilliant idea to try daratumumab for my small fiber neuropathy. What a coincidence is it, that our paths have crossed and that we decided that we need to be friends.💕 Isn't it crazy, that after all the drugs I've tried, the one that was suggested by my friend and has never reportedly been used to treat small fiber neuropathy is the only one that is finally doing a good job???!! Neither Prof. Wexler nor Prof. Oaklander had heard of this daratumumab when I first mentioned it. What do we learn from this?
- you need the right friends in life
- you need to keep pushing and nagging and do your own research
- friends are the best for many reasons
- girls rule the world😂😂
- to have a neurologist (Prof. Wexler) who instantly said that trying daratumumab makes a lot of sense and went along with the approval process for this treatment trial. I've talked to many people with similar diseases who haven't found a nice doc yet who is specialized in their disease, or they have super traditional doctors who would never be willing to try something new. Many patients are gaslighted or not taken seriously, and I can't imagine what additional trouble they are going through.
- most importantly, to have someone like Steve, who has been driving me from and back of every single treatment, vaccination, and doctors appointment in Lucerne every week. Obviously, chronic diseases like these are also very tough to deal with for a partner. I know it worried/still worries Steve a lot, but he has been such a big support for me.💕With every situation that came up and with every attack of despair on my side he just tried to find a practical solution for it, he listened to me, and distracted me by taking me to places where I didn't have to walk much. I honestly don't know how I would have managed the past year without Steve, mentally and physically, so I'm very lucky to have Steve (now I'm getting sentimental).💕
- So let's hope my neuropathy is giving us both a break for a while now.🌺🤞🏼🪵🤛🏻
And on this note, I wish you all a great Sunday. Thank you all for your support and for your interest in my blog! 🌺
