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.🤞🏼🌺

If you want to be notified of future posts, click below to never miss a post❤

Categories: symptoms, treatment