Daratumumab 3-months update

I'm still improving!  

Hi everyone, good to see you back here! 🌺 

First of all, apologies for being quiet for quite some time. It's been a while since my 7-week daratumumab update. Somehow, I just couldn't get in the writing-flow over the past weeks. I guess it's because I'm doing a lot better and I'm finally able to do so many things again, which I haven't been able to do in the past year. So, sitting at my computer during my time off didn't sound too tempting. On top of that it's been really nice to have a bit of a break from constantly thinking about my small fiber neuropathy. 

But even though I've been a pretty bad blogger over the past weeks, I'm definitely planning on continuing my blog, so bare with me! ☺️  

After I wrote about my treatment success with daratumumab in my last post, I've been contacted by quite a few people with small fiber neuropathy or similar illnesses, who had questions, were interested in trying daratumumab, or just wanted to hear more about it. 

I'm very happy to see, that writing about my experience may be helping some others as well. It's also great to see that that there is a community out there where you can exchange experiences and help each other with tips, tricks, and knowledge. When it comes to rare diseases, patients often know at least as much, if not more about their illness than their treating doctors. But getting to this level of knowledge is really hard work, so exchanging experience with others is so important. 

This was one reason why I decided to start writing this blog (besides obviously keeping my family and friends updated), so I'm happy to see that people actually find it and read it. Even though there is still a lot of room to improve my appreance on Google.....but oh well 🙃

That's me writing my last blog post while we were staying at the country side.

And because this photo is already about a month old, I figured... 

It’s time for an update on my symptoms and therapy! 

...and given that it's a rainy day today, and Steve is away for a bike tour through Germany, today is a good day to sit down and write.🤓

So, how am I doing?

In  short, I’m sooo much better and I'm still slowly improving. So I’m veeeery happy with my daratumumab therapy. 

On Friday, I had my 10th (3 months) daratumumab injection, which went pretty event-free. I also finally managed to take a pic, so that you can all see how it looks when I get my injections (below). They inject the liquid into the subcutanous tissue of my stomach over a time period of about 10 minutes or so. The injection leaves a bit of a bruise for a day or two, but other than that it doesn't hurt. 

I told you before, that I'm getting my injections at the hospital in Lucerne, which is about an hour away from home in Basel. That's just because the only neuro in the German speaking part of Switzerland, who is specialized in small fiber neuropathy, is in Lucerne. 

I've learned over the years that it's easier to just stay within one institution as opposed to organizing getting my inejctions in Basel. Coordinating treatments between institutions (I've done this before for IVIG treamtents) has potential for all sort of confusion and complicated logistics, and it can easily turn into more effort than just sticking with the original institution, where they know me and they have all my labs etc. 

After all, you can't just go for injections somewhere, but you need to involve new physicians at the new institution, who look after you there and who might have different opinions on your treatment plan and who knows what. So given that I'm quite happy with the hospital in Lucerne, I decided to just travel to Lucerne. 

And because Steve is away on a little holiday, I went to Lucerne by myself by train for the first time since I started therapy. I must admit it's a lot more convenient (for me, not for Steve obviously 😂) to be driven directly to the hospital and back and to have company by Steve, but I was also very happy to know that I'm finally able to be more independent again and to manage trips like this without being in discomfort and stress.🙏🏻 

How have my symptoms changed since my last update?

In my 7-week update, I wrote that I had hypersensitivity symptoms, mainly in my upper body. They started during dartumumab therapy and they're pretty uncomfortable. Thankfully, they have slowly been getting better over the past weeks. I still have some residual hypersensitivity on my lower right arm. I mainly feel it whenever I wear short sleeves and I'm typing on my computer. When my bare arm is lying on my desk or when it touches the edge of my notebook, it just kind of feels as if the skin in this area was bruised. But, thankfully the hypersensitivity to clothes on my entire upper body has disappeared.🙏🏻

Sometimes, when I wear shorts, my legs feel scratchy when they touch each other. It's a lot better than it used to be; I used to not be able to wear any pants that were not made of super soft fabric, because it literally felt like I was wearing sanding paper. Now, it just kind of feels as though my legs were a little hairy, even though I do my best to keep them smooth.😂🙈 So overall, just a bit of occasional discomfort, but compared to before it's really nothing, and it seems to still be getting better slowly. 

Another thing I still notice are occasional fasciculations, mainly after I do physical exercise. Fasciculations are unvoluntary muscle twitches, which I can  feel and sometimes I can also see them (I've tried to take a video before but i always missed them). We all get them occasionally, but with small fiber neuropathy you tend to get them a lot more. These days, I mainly get them in my legs, but sometimes also in my stomach, my back or my neck. They dont hurt, so if they were to stay I can totally live with them. I think it must be something to do with the signal transmission between nerve and muscle, and whenever there is lots of signals  (i.e. after exercise) the transmission gets a bit overexcited or something.

Over the past few weeks, I've also gotten an occasional weird feeling of restless legs in the evening when I was sitting on the couch watching TV. This has been happening mainly on days when I'd been physically active. It's a weird kind of electric overexcited feeling that is very hard to describe, but it forces me to move my legs because keeping them still is very uncomfortable. It wasn't super strong, and whenever I went to bed it calmed down and was gone in the morning. I know some people with restless legs syndrome have it a lot worse and it keeps them up at night. I've only had this once or twice before starting daratumumab, so I've been telling myself that it must also be a sign of my nerves healing (more signals being transmitted??🤷🏼‍♀️), but who knows really. On the bright side, I exercised 20 minutes on my crosstrainer yesterday and didn't get restless legs in the evening.🪵🤛🏻

One other residual symptom I have is that I can still feel the bottom of my left forefoot getting pretty tender when I exercise. Considering that I wasn't able to wear regular shoes, let alone do any kind of exercise 2-3 months ago, this is massive progress. I can just tell that it's not entirely gone yet, because I can feel a difference between my left and my right foot, and my left foot has always been affected by neuropathy more strongly. Don't get me wong, my feet are doing quite well. I have been for a few hikes and was doing very well, it's just that I can still feel something there occasionally. My interpretation is, that this is probably residual nerve damage, which takes a while to get better. We'll see if it ever disappears entirely. 

So in summary, 

I'm doing a lot better and symptoms still seem to improve, although at a much slower pace now. So I guess you could say my small fiber neuropathy is in 'partial remission'?

Prof. Wexler and I discussed how to proceed with my treatment. And as always....

it's all trial and error....

The initial phase of my daratumumab treatment was an 8-week trial of weekly injections, which were sponsored by Janssen, because health insurances didn't want pay. 

These 8 injections were completed about 4 weeks ago, and Prof. Wexler and I decided to just apply for treatment continuation with health insurance, to be on the safe side. But we hadn't really decided on how to exactly continue my treatment yet. 

The great news are, that my health insurance has agreed to cover my daratumumab therapy for at least the next 12 months (🎉🎉), so now we are free to plan my treatment without worrying about who pays for it. 

There were a few options on how to proceed with my treatment, and it's kind of impossible to know which one is the right one. There are a few case reports in the literature, where they used daratumumab to treat different  autoimmune diseases, but every report applied a different treatment regimen.

1. One option was to just stop traetment after the first 8 injections and wait and see what happens. This is what they did in some of the papers where they used daratumumab for hematological autoimmune diseases with mixed results. Some people remained stable and kept improving whereas others had relapses...... 

However, I'm just not ready to stop treatment, now that I've finally found something that works with very minor side effects. I'm absolutely mentally not ready to deal with the uncertainty of whether or not symptoms would come back any day. I'm soooo unspeakably relieved to finally have a break from it, and I'm more than happy to keep going with a therapy that's finally doing a great job. 

So I told Prof. Wexler that if possible in anyway, I want to continue getting injections, and he totally understood. We also consulted with my clever friend N, who is our hematology daratumumab expert, and she also agreed that maintenance therapy of some sort probably makes sense.  

2. So we had to come up with a maintenance treatment plan. Problem is, there is not much evidence outthere on how to apply daratumumab over a longer period of time in autoimmune diseases, and it probably doesn't make sense to apply the cancer (multiple myeloma) treatment scheme 1:1 either...

We came across one case series, in which they used daratumumab in patients with a specific antibody-mediated type of autoimmune kidney disease. They also did the 8 week induction period of weekly infusions (they did an intravenous regimen), and then continued for another 4 months with less frequent infusions. After that they stopped treatment and observed patients closely. 3 out of 10 patients had symptoms return within 6 months after stopping treatment, and two of them were then put on a maintenance treatment of one infusion every two months on which they were doing well. 

By and large, this is the study we are sticking with, except that my treatment is subcutaneous and not intravenous. But Prof. Wexler and I also agreed that it's probably pointless to plan too far ahead, so we will take it about 2 months at the time. For now, I'm getting an injection every two weeks for 1 more month and then we will go down to one injection per month. 

We also decided to just put our feelers out, and to contact some of the international daratumumab experts who have published prior case reports, in which they treated patients with different autoimmune diseases. We'll ask them for their experience and their opinion and then go from there. Fingers crossed we get some insightful replys.🤞🏼

I also had a chat with my hematologist yesterday...

and she agreed with this plan. She said that my blood values (hemoglobin, thrombocytes, white blood cells etc) look very stable, so she sees no problem in continuing injections. She also agreed that it may make sense to stabilize my neuropathy for at least 6 months.

One thing I really wanted to discuss with her was my ongoing drug treatment to prevent infections. When I started daratumumab therapy, they put me on a prophylactic drug regimen of an antibiotic 3 times per week (sulfomethoxazol/trimethoprim) to prevent a rare but dangerous bacterial pneumonia (pneumocystis carinii) as well as a daily pill of an antiviral drug (valacyclovir) to prevent me from getting Herpes Zoster. 

Patients with immunosuppression are more susceptible to these kind of infections and she told me that, especially during the early phase of my treatment, when I got a lot of steroids on top of the daratumumab to prevent infusion reactions, I needed to take it. 

However, taking long-term antibiotics is just not something I feel very comfortable with, as it messes with my digestion, and I've read so much about how important it is to keep your microbiome healthy. So I asked her yesterday if I could possibly stop these two drugs and 🎉🎉🎉🎉 she agreed. She said, now that I reduced the frequency of injections plus we also reduced the dose of steroids per injection (from 20 mg dexamethasone down to 8mg dexamethasone) because I never had any side effects, it should be fine to stop them. 

And I'm very happy with that 🎉 

So the only drawback for me at the moment is, that I'm immunocompromised and we are still in the middle of a pandemic with rising numbers of COVID infections in Switzerland. Apparently, up to 40% of people my age in Switzerland (thankfully not my friends and family💕) do not believe in vaccines - but let's not get into this topic - it's mind boggling.🤯🤯

I'm very glad I was able to get the COVID vaccine before starting daratumumab, but I probably don't have the same protection from it at the moment, as someone who is not immunocompromised. So I have to remain careful and just try to live as though I hadn't been vaccinated. However, compared to living in daily pain,  this is a very small price that I'm very happy to pay. 

For now I'm just avoiding crowded places, I don't eat indoors in restaurants, and I only get close to people of whom I know they had the vaccine, which thankfully is pretty much everyone I usually interact with anyway. The rest is out of my control, I guess.🤷🏼‍♀️

And on this note, I wish you all a happy Sunday!

Thank you all for reading my blog and for caring. 🌺 If you want to be notified of future posts, click below to never miss a post❤

Categories: daratumumab, treatment