Daratumumab restart

Daratumumab here we go again 

Hi everyone, good to see you back here! 🌺

It's been a while since I told you that I'd had a flare of small fiber neuropathy after a viral infection in early December. 

In the first half of January, I got 2 doses of daratumumab to get this flare back under control. In this post, I'll talk about how this has been working so far. 

So lets start where we left off!

My neuropathy flare had calmed down a bit by the end of December... 

but I still had trouble with my feet as well as some other symptoms. In my diary I wrote (it's impossible to remember symptoms otherwise), that the bottom of my hands and my lower arms were sore when typing and that I had to wear sweat bands on my wrist to avoid discomfort. Also my nose was itchy and the tip of my tongue felt as tough I had burned it. 

The burning tongue symptom can occur with small fiber neuropathy. I don't think it's really known how often this occurs. I have recently talked to a friend who has the same thing and who has SFN as well. Apparently she knows quite a few others who have it too. It took me a long time to realise that this symptom correlated with the severity of my neuropathy and, thus, must be related to it. It's not terrible in my case. It just kind of feels as though I had drank a tea the day before without waiting for it to cool down first. 

Over New Year's Steve and I spent 5 days in the mountains 

which was lovely and relaxing. We did go for some walks, and I was surprised that it went better than I had feared. I did some 10'000-step walks in the snow in my Ugg boots. I did notice that my feet would get warm after a while, and whenever I took of my shoes they were a bit red, swollen, and sore, but they would calm down again. However, I could still not wear normal shoes without my feet getting pretty sore. Before my flare up, I had just started wearing other shoes than Ugg boots and had started exercising on my crosstrainer (bare-foot). 

The continued symptom improvement was likely due to belimumab (Benlysta) 

which I've been taking once a week since October. Whenever I had a flare of symptoms before, it would never calm down much on it's own. Doctors would always tell me it might just pass, but over the years I've learned, that this doesn't happen for me. Without some sort of drug treatment, symptoms would always get worse or at least stay the same. So far, belimumab has not been able to prevent the flare due to my viral infection, but at least I could see a steady slight improvement over time. This is a lot actually, because even a slight improvement in symptoms is worth a lot!

Plus, who knows how bad this flare could have been without it?? 

However, belimumab is not a drug that has an immediate strong effect, so its best to combine it with something else and/or to use it as a stabiliser once the neuropathy is more or less under control. Thankfully, I tolerate belimumab well, so it's planned that I keep taking it for the unforeseable future. 

To speed things up, I got 2 doses of daratumumab January 7 and 14

In an earlier post, I wrote about my literature search and that Prof. Wexler and I had decided to go for a maintenance therapy with belimumab and to only use daratumumab in intervals. This is pretty experimental, but given that I had a relapse while on maintenance therapy with daratumumab last summer, this was the best plan we could come up with. 

We decided to do the first infusion as an intravenous (iv) infusion. So I had to sit at the hospital for a whole day with a drip in my arm. Last summer, I got all my daratumumab doses as subcutaneous injections, which is a lot easier to handle. 

Why did we opt for an iv infusion instead of a subcutaneous injection this time?  

Basically, our hypothesis is that most of the reaction to daratumumab (i.e. killing of plasma cells, which produce antibodies) happens very soon after the drug gets into the blood stream. Plasma cells express the highest level of CD38 proteins on their surface before they are exposed to dara, and they start to downregulate them once they get in contact with the drug (this is very simplified). 

Daratumumab binds to CD38 expressed on the surface of plasma cells. So in order to get the most interaction between dara and my plasma cells, we figured we want to make sure that there is a high concentration of daratumumab in the blood stream right at the beginning (i.e. we wanted a high peak concentration). 

With subcutenous injections the compound is injected into the fatty tissue (usually of the belly) and then slowly diffuses into the blood stream over 1-3 days. With an iv infusion, the drug is right there as soon as you let it in. 

There are several benefits of subcutaneous injections, which is why they are generally more popular. Most importantly, they cause less allergic reactions, because the body doesn't have to handle all of the drug at once. But given that I'd never had any adverse reaction to dara so far, we figure this is a risk we can take. Subcutanous injections are also easier to apply because you can inject them within 10 minutes. So they're less work for the hospital staff and less time intense for the patient. However, after the first subcutaneous dose of daratumumab after a treatment free interval you have to sit at the hospital for several hours after the injection anyway to make sure you don't have an allergic reaction. So it didn't make a huge difference in terms of logistics in my case. 

For multiple myeloma, daratumumab is pretty much always given subcutaneously these days. However, there are probably some other/additional mechanisms at play when giving daratumumab to treat multiple myeloma vs autoimmune diseases. I discussed this question with my hematology friend as well, and she confirmed that they give dara iv to patients with autoimmune diseases for this reason as well. So, Prof. Wexler and I decided we might as well do it properly and go for iv. 

So, I spent a day at the hospital and got the infusion over 9 hours 

This sounds worse than it was. I actually had a bed for the day and was able to binge Netflix all day. An hour before the infusion started, I got pre-medicated with steroids and an antihistamine, which made me super tired. So, I was kind of dosy all day watching silly reality TV shows. 

Thankfully, it all went smoothly. I didn't have any adverse reactions and felt fine as I left the hospital. I was also a bit worried to spend the whole day at the hospital, because COVID numbers are very high in Switzerland at the moment. So if you spend a day in a room with some other people, chances that one of them has it are currently pretty high. 

Catching COVID on the day I get immunosuppressants loaded into your blood stream was not exactly what I wanted. But I managed not to catch it (I did have my FFP2 mask on at all times and only took it off to sip on my drink or to have a bite to eat). 🪵🤛🏻

The only thing I noticed is that I must have developed some sort of allergy to bandaids over the past months. After they freed my from the iv drip, my arm looked like this and stayed like this for about 3-4 days. I didn't use to get this last year, but it wasn't itchy or anything, so that's no drama.🙃 

One week later I went in to get my second and currently last dose of daratumumab, which I did get as a subcutaneous injection this time. I had to sit there for 2 hours after the injection to make sure I didn't have an allergic reaction, but then I was good to leave and done with dara for now. 

Did daratumumab work again??

I was quite anxious about this actually, because after all, I did have a neuroapthy relapse while on dara therapy last summer. After reading all the literature, Prof. Wexler, N (my hematology friend), and I agreed that it's likely that dara will work again. But who knows, right? This is all experimental, and things often play out differently in clinical practice than one expects. So you just have to wait and see and hope for the best.

After my first infusion, I was quite nervous about what would happen...

But I noticed quickly, that it was definitely doing something again!

Within a day I could feel that my symptoms increased in intensity. Strangely, the same thing happened when I first started daratumumab in May 2021. Symptoms got worse for about 2 weeks before they started to get better. 

My hypothesis is, that when dara kills plasma cells, it sets free an extra load of autoantibodies, which were trapped in the plasma cells before. I picture this like a little 'plasma-cell-explosion'.💥 This is probably not what's really happening, but it helps me to make some sense of what's going on. 

It's also known that neuropathy symptoms can be perceived as worse when nerves start to heal, because you have more feeling in your nerves again. However, I doubt that nerves would start healing within a matter of a day, because antibodies usually take about 1-2 weeks to clear from the blood stream.

So who knows what's going on....🤯 

But this is the change in symptoms I noticed: 

The day after the infusion, I noticed that I felt as though I had a strange band over my nose. This wan't painful, but it just felt as though someone had put tape over the back of my nose. Over the following 1-2 weeks I also noticed that I developed erythromelalgia (red, hot, sore skin) a lot faster. I said to Steve, it just felt as though my skin was a lot more nervous than usually. 

This is a photo of my legs 3 days after the first infusion after having a moderately warm and not very long shower. The same thing happened to my feet and hands. They kind of felt warmer and more hypersensitive than before the infusion and were a lot quicker to play up and develop erythromelalgia whenever I did any sort of activity. I spare you a photo of my feet, because I really need a pedicure (which I don't dare getting atm due to extremely high COVID numbers) and you've seen plenty of photos of them anyway.😂

About a week in, I also noticed that I was more itchy all over and I had more of these weird muscle twitches (fasciculations) mainly on my legs but also all over my body. Overall, it was pretty similar to what I had experienced during my first round of dara. 

I was very happy to see a clear reaction to dara, so I was more than willing to put up with some increased symptoms for a few weeks. It's weird how you can be happy about symptom aggravation. After all, it's always about hope and future outlook. 

About 10 days after the first infusion I started to notice improvement

The first thing I noticed (like last time), was that my pinkies did not feel weak or clumsy anymore. Losing some strength in my pinkies is always one of the first signs I notice whenever my neuropathy takes a turn for the worse. It's not like they are paralysed or anything, but I just notice that they have less strength than the other fingers. About 10 days into treatment, I put on face cream in the morning and noticed that my pinkies cooperated with me perfectly. 

I was also slowly able to do longer walks in my Ugg boots again without my feet playing up. One day I did a very short walk (5 minutes) in 'normal' (non-padded) shoes, just to see how this goes. I managed without feeling discomfort. After about 5 minutes I did feel some pressure on my left forefoot, but before dara I would feel uncomfortable right away from the first step on. 

I was able to type for a while without dyscomfort on my hands/lower arm. I started doing small rounds of exercise on my cross trainer (15 minutes at the time on a low setting of resistance), which I managed without major hiccups. My toes would still get a bit red, but they would calm down quickly. Before that, a round of exercise would result in a payback of sore feet all evening.

About 3 weeks after the first infusion I put on jeans for the first time in a long time, and it was fine. I have to say, they were soft stretchy jeans, but this was a major achievement for me. I used to always be a jeans and t-shirt kind of person. But ever since my neuropathy got worse in summer 2020, I haven't been able to wear jeans, because the fabric just felt like sand paper rubbing against my skin. But I'll wait a bit longer until I try some proper jeans on. I remember, even last summer, when I was in 'remission' they felt very scratchy when I tried some on.

 

So how am I doing now? 

Once again, it's all about being patient. I'm definitely much better than before daratumumab, and very much better than just after my viral infection in December. But I'm still not symptom-free. Last spring it took about 2 months until symptoms were more or less gone. The weird thing is, that nerve healing comes with a lot of symptoms on its own, and it's so hard to tell apart, which symptoms are symptoms of healing and which are classical neuropathy symptoms. Unfortunately, it's not possible to take a drug and symptoms disappear all at once, because nerves need to heal first and that takes time. 

So far, I have not developed any bad hypersensitivity like last time. My theory is that this may be because my neuropathy was not as bad before the dara infusion this time around, so the nerve damage was not as extensive. Moreover, I was also on pregabalin before starting dara in spring 2021, and then reduced pregabalin gradually, once I started to see improvement. Maybe this could also had something to do with hypersensitivty, so once again, who knows. 🤷🏼‍♀️

Either way, I'll leave it at that and will keep you posted. For now I can say that I'm very happy that our hypothesis has played out and that daratumumab seems to be doing something again. I was worried that I had built up a permanent resistance to dara last summer, and at least this doesn't seem to be the case. I hope that we are one step closer to figuring out a long-term treatment plan for my small fiber neuropathy.🪵🤛🏻

Thank you all for your interest in my journey and all your thoughtful comments and inputs. If you want to be notified of future posts, click below to never miss a post❤

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Neuropathy flare caused by a virus...🦠

I caught a viral infection... 

Hi everyone, good to see you back here! 🌺 

I hope you all had a happy and restful holiday break. I'm checking in with an update on my small-fiber neuropathy. 

I've been dealing with a neuropathy flare since November

In one of my last updates, I told you that my neuropathy was only mildly active and overall didn't limit me too much. I had started belimumab in October to further improve and stabilize it, and things were stable. But as always, things change unexpectedly...  

So what exactly happened?

In late November I caught a bad cold (or whatever it was)

I was watching TV on a Sunday evening, and I could feel a scratch in my throat, which quickly developed into a very sore throat. The next morning, I woke up feeling under the weather with a headache, a very sore throat, and a whole-body muscle ache. I didn't have a fever, so I was hoping that it wouldn't get too bad and would pass within a few days. 

However, three days into this infection I started feeling sick to my stomach and spent a night throwing up...(sorry for the TMI🙃). 

The next day, I woke up with a 39°C fever and felt terrrible. We did take Covid tests, which were negative (yes, Steve was pretty sick as well....). I also tested my COVID antibodies two weeks ago and didn't have any, so we definitely didn't have COVID. 

I spent the whole day in bed, and the fever gradually improved, but it kept lingering between 37 and 38 degrees for several days. This is when I started to get worried... 

Viral infections make me nervous... 

because my neuropathy was orinigally triggered by a cold. And pretty much every neuropathy exacerbation since then was preceded by some sort of respiratory infection. Don't get me wrong, not every cold causes my neuropathy to flare up. I've had many colds, that passed without any drama.  

However, it does feel like playing Russian roulette every time...🦠🦠🦠

One week into this viral infection, I was still running a high temperature and I was up doing something on my computer. Suddenly, my lower right arm felt really uncomfortable while I was typing and it touched the surface of my desk.

It's a really weird type of pain, that I've dealth with all of last winter; it's a strong hypersensitivity to any objects touching my skin. It feels kind of electric, scratchy, and achy at the same time, but strangely it's not sore to touch when someome touches the skin with their hand. 

I knew this wasn't good news....

I tried to talk it down and hoped it was just a brief flare up due to my fever. But the next morning I woke up, and I knew this stupid virus had triggered a pretty big neuropathy flare. My whole body was in pain and pretty much all of the fun symptoms I dealt with last winter were back.😡 

I was so bummed out... just when I was improved enough to exercise a little, this happened. 

The day before my sore throat started, I had done 30 minutes on my crosstrainer for the first time in several months, without my neuropathy playing up. I was telling Steve how excited I was about this, and that I wanted do this a few times a week to get fit(ter) again....but this obviously hasn't happened now.

Here are a few impressions of my neuropathy flare

The morning after my arm got sore, I woke up to something that looked and felt exactly like a bad sunburn on my neck and chest. My skin was really hot, burned, and itched. I kept scratching, which only made it worse, so I really had to concentrate on not touching it and to wear clothes that didn't touch the red area of skin. 

This was a new level of annoying!

I'd had irritated skin around my neck and chest before, but never like this. Last winter, the skin around my neck and chest always felt a bit scratchy and I couldn't wear woolen cardigans for instance. However, it was never visible and certainly never that itchy.

I applied cortisone cream several times a day, but that didn't really calm it down. Two days after it started, I swallowed a pretty high dose of dexamethasone (20mg) that I still had at home from my daratumumab injections. This did actually calm it down, but only to come back two days later.

Thankfully, this 'sunburn' started to calm down 10 days later. By now, I have some remaining red spots, which feel warm to touch, but they are not itchy or sore anymore.🙏🏻

I wonder if this rash around my neck had something to do with the fact that my throat was pretty badly infected. I've never had the focus of my symptoms on my neck before.🤷🏼‍♀️ But that's just one more untested hypothesis...

Of course, whenever neuropathy flares, my feet get really sore. Before this infection, I was able to go for pretty long walks in soft shoes, such as Ugg boots, and I could also wear 'normal' shoes as long as I didn't walk too far.

The day before I develeped my gastro symptoms, I had actually gone for a 1 hour walk in the cold, which probably wasn't the smartest idea in hindsight. I thought that getting some steps in might help me to get fit again, but I was probably sicker than I admitted. Walking in the cold certainly didn't help my body fighting down this virus...

At the same time as my 'sunburn' started, my feet got really sore 

They felt really hot and got sore pretty much as soon as I tried walking in any sort of shoes. They were also really sensitive to heat, and I had erythromelalgia from the smallest physical exertion or warm temperatures. They also felt crampy as though I had a tight band around my feet even when I was bare foot, especially at night or during rest.

Also my hands got sore again... 

although they had pretty much been symptom free prior to the infection. These are my hands about a week after the flare started. Looks great right?! They were not always that red, and thankfully my hands have calmed down a fair bit by now again, but I still get hypersensitivity during some activities.

So how am I doing now?

Thankfully, symptoms have calmed down a bit over the past 2 weeks. I've been on belimumab since October. I'm not sure if my improvement is due to belimumab, or due to the fact that the infection has calmed down by now. It's probably a mix of both.

However, even though my neuropathy has stabilized, it's still worse than it was prior to the infection. It's mainly my feet that bother me a lot. They get sore and hot when I walk, so it's not easy to get around. And when I try to exercise on my hometrainer they get warm and red, which makes them sore as well.

What's the plan to get this back under control? 

I spoke to Prof. Wexler on the phone last week. We decided to go ahead with two daratumumab infusions in January. This should theoretically get this flare under control, and then we aim so stabilize it further with belimumab, which I'm already on.

But we'll have to wait and see how it plays out in practice

The thing with belimumab is that it works very slowly, so we added the two daratumumab infusions to speed things up.

Before I hung up the phone, I wished him a good start into 2022. Then he said to me, that he really hopes that next year will be less trouble for me. He said '2021 must have been a lot for you'...And I couldn't agree more! 

It was reassuring to hear, that even he thought that 2021 had been a lot. This thought had definitely crossed my mind several times, but I've had nothing to compare my situation too. 

Prof. Wexler sees many patients with small-fiber neuropathy, and apparently I must have stuck out with particularly many ups and downs in a short period of time. But on the bright side, at least it was not only downs, but we have found ways to beat my neuropathy back under control when it was really bad...  

So let's not jinx 2022 - I'll take it as it comes and don't expect smooth sailing...🤞🏼

I know that many patients with small-fiber neuroapthy experience many continuous downs, and are unseccessfully fighting for drug treatment or proper diagnosis. When I hear this, I know that I can consider myself lucky with regard to the fact that I've so far gotten all possible expensive treatments. 

If you are one of those patients, I want you to know that I've got my fingers crossed tightly for things to start moving in the right direction in 2022 and that you find some answers that start moving the path upwards. 

I hope that my blog can at least show that it is possible to treat this very frustrating disease, even after some treatments failed. Even if I'm also still trying to figure out the perfect long-term treatment. 

And on this note I wish you all a good start into 2022 

My new year's resolution for 2022 is to try and live more in the moment. If chronic illness can teach you one thing, then it's that things can change quickly and that you shouldn't postpone things that you could enjoy today. 

I have to admit, I definitely haven't mastered that discipline yet, and I'm still very much the same old control freak I've always been. But I promise I'll work on it.🙃

As a first step, Steve and I have booked a lovely holiday appartment in the mountains for 4 days over new years eve, which I'm looking forward to a lot. And after that it's almost time for my daratumumab infusion. 

Thank you for following my journey.💕 I'll keep you all posted...

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Starting belimumab....

We have a new plan! 

Hi everyone, good to see you back here! 🌺  

I've been absent for some time. Meanwhile, Prof. Wexler has gotten back from his vacation and we've been in touch to discuss how to go forward with the treatment of my autoimmune small fiber neuropathy. I'm happy to report, that we've figured out a new treatment plan, so I guess it's time for an update.

First, how are my symptoms?

Since my break-through neuropathy symptoms returned in mid-August, I haven't been undergoing any drug treatment. I cancelled the planned daratumumab injections. I'll explain why I did that later in this post.

I was quite worried that my symptoms would get really bad without treatment. During my last big symptom exacerbation in summer 2020, symptoms spread and got much worse at a scarily fast pace over a matter of 1-2 weeks. 

Thankfully it didn't happen this time. 🙏🏻 My symptoms have stayed more or less stable over the past 2 months. Maybe they have gotten a tiny bit stronger over time, but much less than I feared. 

My guess is that daratumumab has killed quite a few of my faulty white blood cells, so that my body is currently not able to produce too many auto-antibodies at once. 

I'm not saying I'm doing great. I'm still quite limited in what I can do. But at least symptoms have stayed manageable and I can control my pain levels by avoiding triggers without any additional medication.

So, we need a new plan.....

This is a current picuture of my feet when I have erythromelalgia - this painful red swelling I get in warm temperatures or from walking in shoes. So, neuropahty still prevents me from walking longer distances and obviously from exercising.

Before I started daratumumab, I had to take pregabalin to reduce the burning pain in my feet and legs and I had trouble typing because my lower arms and the bottoms of my hands were painful and hypersensitive to touch. On top of that my nose and my chin were itchy and most clothes felt so scratchy that I couldn't wear them - it kind of felt like sand paper was rubbing against my skin. 

Right now, my feet are sore when I walk, but it's mainly the bottom of my feet that kind of feels like I'm walking on sharp hot gravel. This is annoying enough by itself, however, I can still wear soft flip flops or padded shoes to do small walks without pain. Before daratumumab, wearing any kind of flip flops was really painful, because it felt as though the strap of the flip flops was cutting into the flesh of the back of my feet. 

So far, I'm also still able to type and use my hands quite normally, although I do feel some discomfort occasionally. My nose hasn't gotten itchy (yet) and my legs feel quite scratchy when wearing some clothes (e.g. cannot wear jeans) but most softer clothes are fine and the burning pain has not come back (yet). 

So overall, my symptoms are annoying enough to bother me a fair bit, but they are not nearly as bad as before daratumumab. 

And I have to say, I'd like to keep it this way! 

But enough of my symptoms...

...I actually wanted to update you on my new treatment plan.

Prof. Wexler has gotten back from his 3-week vacation a while ago, and I've discussed my situation with him. In my last post I told you that I'd sent him an audio power-point presentation to summarize all my research on what may have caused my break-through symptoms. When it first happened, we both had no idea how this could happen despite me still undergoing daratumumab treatment. 

I wasn't sure if he was actually going to take the time to watch the 20 minute video. After all, I know that he's extremely busy, and I'm definitely not his only patient and probably also not the sickest one. 

To my surprise he told me that he had actually watched my video twice, and that he thought my hypothesis made sense. 🌺 I didn't expect that, as I was prepared to explain my research to him on the phone. This made me realise again how lucky I am in finding such a good, kind, and open-minded neurologist. Many old-school doctors would probably feel offended and not spend the time listening to their patients' medical hypotheses. At least that's what I hear from many fellow neuropathy suffererers on social media.... 

So why did I get neuropathy symptoms despite daratumumab treatment? 

First of all, I need to state the obvious. Everything I'm writing here is my own hypothesis and has not been scientifically proven. So please, do not take any of this information as proper medical advice.  

I used the month Prof. Wexler was away to do some more literature research, and I also wrote to some experts, who have published cases where they used daratumumab to treat autoimmune diseases before. 

How does daratumumab work? 

Don't worry, I won't go into every detail. And if you don't care about drug mechanisms you can also just skip this bit. 

Daratumumab is a monoclonal antibody, which binds to a glycoprotein called CD38. CD38 is expressed on different cells in our body, but it is most highly expressed on plasma cells. Plasma cells are part of our immune system (part of the B cells, which are lymphocytes/white blood cells) and plasma cells are in charge of producing antibodies. 

Once daratumumab binds to CD38, it causes the plasma cells to go into apoptosis, which means the plasma cells die off. Unfortunately, this is not a specific reaction to plasma cells, which produce faulty autoantibodies. It targets the majority of plasma cells. Therefore, my immune reaction to other infections may also not be as strong as it used to be. But that's the trade off I'm willing to make if it makes my neuropathy go away.

Officially, daratumumab is licensed to treat multiple myeloma, which is nothing else than plasma cell-cancer. In patients with multiple myeloma, cancerous/mutated plasma cells start multiplying too much and obstruct blood flow to other organs. Obviously, that is very simplified and I'm no expert on multiple myeloma at all, but it shows why it makes sense to use dratumumab to treat cancer as well as autoimmune diseases.  

So far so good...

...daratumumab worked really well and within 2 months I was pretty much free from all my neuropathy symptoms.

So the question I wanted to answer with my frantic literature search was:   

Why did I get break-through neuropathy symptoms while using dara? 

I found an interesting study (amongst many others), which looked at plasma cells and myeloma cells of patients with multiple myeloma while they were undergoing daratumumab treatment. 

The authors observed that, as soon as patients received daratumumab, the CD38 glycoprotein pretty much disappeared from the surface of myeloma cells and of non-cancerous plasma cells. They did a lot of research trying to figure out what exactly happens on a molecular basis. I have to admit that some of the molecular details also go beyond my understanding, but what they observed is that after 4-6 months after stopping daratumumab, these CD38 glycoproteins re-expressed on the cell surface. 

The tricky thing is, that in patients with multiple myeloma, this absence of CD38 glycoproteins does not always lead to resistance to daratumumab. It is suspected that daratumumab has some additional anticancer effects which are independent of CD38. A lot of these effects are not really understood yet, as daratumumab has only been on the market for some 6 years. 

Obviously, there are no studies looking at this effect in patients with autoimmune diseases because daratumumab is not an official treatment for autoimmune diseases (yet). However, from my understanding, anticancer effects are not relevant in autoimmune diseases. So in order for dara to work, CD38 needs to be present on plasma cells so that dara can kill them. 🤷🏼‍♀️  

So my best bet as to why I got symptoms while being on dara is that dara had nothing to bind to anymore, because CD38 was not expressed on my plasma cells anymore. The good news is that this CD38 glycoprotein comes back after 4-6 months without dara...so I suggested to Prof. Wexler that we pause dara until winter and he agreed. 

So in summary, I think it might make more sense to....

....apply daratumumab as an interval therapy when targeting autoimmune diseases.

But what do we do until then? 

Wait until my symptoms get worse??? - I'd rather not!

Last year I read a case report of two patients with lupus (another b cell mediated autoimmune disease), who underwent treatment with daratumumab. These patients only received 4 infusions of dara over a period of 4 weeks and then they stopped dara. 

After about 3 months, their auto-antibody titers started rising and symptoms came back. At this point in time they sucessfully started maintenance therapy with belimumab, which stabilised antibody levels and kept symptoms at bay. 

Of course that is only one single case report of patients with a different disease, but to me this made a lot of sense. I suggested to Prof. Wexler that we do the same and start a maintenance therapy with belimumab and see how this goes. If needed, I can then get another 1 or 2 injections of dara some time around January. 

Prof. Wexler agreed, so we have a plan!

What is belimumab??

Belimumab is a monoclonal antibody, which has been licensed for the treatment of lupus for about 10 years in Switzerland. Belimumab binds and inhibits the B-cell activating factor, which is required fo B-cell activation. Thus, belimumab reduces the maturation of B-cells into antibody-producing plasma cells.

If you are interested in the different current and potential future options to treat b-cell mediated autoimmune diseases, this publication may be of interest to you.

We applied for belimumab with my health insurance...

because once again, it's obviously not licensed to treat autoimmune small-fiber neuropathy (like everything else). On top of that it's also not cheap, although it's cheaper than most other drugs I've gotten before (like IVIG, rituximab, or daratumumab). 

Thankfully, they approved our application within less than a week. 🎉 So I'll be starting belimumab therapy soon. You can either get it as an intravenous infusion once a month, for which you have to go into the clinic, or you can do it subcutaneously once a week at home. 

Prof. Wexler discussed my case with the rheumatology department at the hopsital, because belimumab is usually used for patients with lupus, who are treated by rheumatologists. The rheumatologists agreed that our plan was worth a try and they said that doing the subcutaneous injection at home is probably easiest in my case, because I'd have to get my infusions at rheumatology and that would be a whole lot of extra admin. 

Plus I'm happy if I can do my injections at home and don't have to rely on any clinic for that. So I'll do the subcutenous version, and I'll be giving myself an injection with a pre-filled pen once a week. 

Currently, we're in the process of figuring out how, where, and when to do the first injection and whether this needs to happen supervised or not. There is always so much more logistics to everything than I originally anticipate. 🤯

But I'm hoping to start therapy this or next week. Obviously, I'll keep you posted on how things go. I'm always nervous about starting a new drug as you never know how I'm going to react to it. But at least we got things moving!

And on this note, I wish you all a great start into the week. Thanks for following my journey. 💕

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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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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❤

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