Belimumab 1-month update

I started Benlysta /belimumab a month ago 

Hi everyone, good to see you back here! 🌺 

I figured it's time for an update, although there's actually not much to report. I guess that's a good thing. The first month with Benlysta (which is the brand name, and belimumab is the active drug compound) has been event-free...

I had my first injection in early October...

I use the subcutaneous Benlysta autoinjectors, which I inject myself with at home once a week. It's suggested that you do the first injection under medical supervision, in case you have an allergic reaction. 

So, for the first injection, I had a nurse, who works for my pharmacy, come to my place to show me how the injections are done and to stay with me for an hour after just in case anything happened. 

It's not like you need much instruction to do these injections. They are super easy. You get these pre-filled pens, which you keep in the fridge. 

Half an hour before the injection you take them out of the fridge. And when you are ready to do the injection, you desinfect the skin and push the pen down at the injection site. Then you hold it down for a few seconds until you hear a clicking sound. 

I was a bit worried that the injections would hurt...

...because I read some online reviews, which said the injections were so painful, that they don't even manage to inject the entire liquid before they have to withdraw the pen. Some people even switched to intravenous infusions for this reason. 

Most people who made this complaint seemed to inject into the upper leg, so I decided to stay away from my legs and aimed for my side flank, where I never had problems doing the subcutaneous immunoglobulin infusions. Basically you can inject into any site of your body, where you have a bit of fat...so that you don't hit a muscle🙃

Thankfully it really didn't hurt much

I can feel a bit of a stingy/burning feeling during the few seconds I do the injection, but it's barely worth mentioning. So in case you ever need Benlysta, don't worry too much and just try it out.

But now to the more important questions:

Has it improved my neuropathy (yet)?

I wrote in my last post, that Benlysta is a slowly acting drug, and that the main purpose of starting it, was to stabilize my neuropathy symptoms at a mild level for now. Benlysta is licensed to treat patients with lupus (another autoimmune disease), and the general notion is that it takes on average 6-9 months until lupus patients see a notable improvement of their symptoms with Benlysta. 

I didn't expect to notice anything right away, but of course, once I start a new treatment, I'm focused on my symptoms to spot any changes, because after all you never know. 

So far, I can report that symptoms have been stable on a rather mild level. My hands are doing mostly fine and I can walk fine in padded shoes and can wear most clothes without discomfort. 

However, I still have trouble walking longer distances in non-padded shoes and my feet get warm and red/sore in very heated rooms or when I excert myself. Mind you, I'm far away from running marathons - so by exertion I mean 15 minutes on my home trainer on a casual setting..... 

Thats my feet after a walk the other day in my Ugg boots. They get a bit red and sore when they get warm, and I have these weird red spots. But after taking off my shoes they cool back down to normal and stop being painful.

About a week after starting Benlysta I started to be more itchy 

I noticed that my hands, feet, lower legs, and my arms would get pretty itchy once in a while, and espcecially after physical activity. This hasn't stopped yet. I still find myself scratching my skin more often than I used to. For me, itch has been a symptom whenever my neuropathy has been improving/healing in the past. I assume this must have something to do with nerve fibers gaining back function or regrowing. 

However, the problem with itchiness is that it can totally also be psychosomatic, so I really don't want to read anything into this. For me, I always get super itchy in my face exactly when I'm carrying a tray full of glasses or something and I know I can't scratch right now. Or I get itchy everytime someone tells me about being itchy....so yeah. 

And on top of that winter has just settled in, and rooms are being heated again, which always makes my skin a bit dry and itchy....So I'll wait and see...I'll keep tracking my symptoms and I won't draw any conclusions before a few months into treatment. 

The plan is to observe what happens for the next two months, and if I still have substantial symptoms in early January, I will get one or two additional shots of Daratumumab, while I maintain my Benlysta therapy. 

Do I have side effects from Benlysta? 

Thankfully, so far I haven't noticed any...🙏🏻

Starting a new drug therapy always comes with quite some anxiety for me. You never know what to expect. And being a pharmacist, of course I get informed before starting a drug. I must say, sometimes it would be easier not to know much about those drugs, but of course I can't help myself anyway...

I'm also quite traumatised from my IVIG infusions (intravenous immunoglobulins), which I had around 2 years ago, and which gave me meningitis (worst headache and nausea for days and weeks on end) after every single infusion. This was super debilitating, and I was not warned about this beforehand. But I will write about that in another post. 

The potential side effects that are reported for Benlysta/belimumab are: 

• a potentially increased risk for infections, as is the case for all immunosuppressants. However, studies have actually found that severe infections happen very rarely. So that's a trade off I'm happy to make if it helps my small-fiber neuropathy. 

• A potentially increased risk for cancer, which is also stated for every immunosuppressant, because the immune sytem helps to fight cancer. However, again studies have not found a relevant cancer risk for Benlysta so far. 

• Headache, nausea, or diarrhea. But these are literally listed for every single drug on the market, so that's not to worry about too much.

• Allergic reactions, which obviously can happen to every drug. But once, you managed the first few injections without a reaction your chances of having one are very slim. 

I was quite worried about allergic reactions, because I'm well aware that my therapy options are narrowing down. Any drug I don't tolerate is one less option to treat my neuropathy. 

So for the first two injections, I decided to take an antihistamine and another allergy drug (montelukast) an hour before the injection, just to be safe. I take these drugs before daratumumab injections, on the advice of my heamatologist, so I figured they can't hurt. But after I never had a reaction, I stopped taking them and it's been fine so far. 

• The one side effect I was/am worried about most is a reportedly increased risk of depression and suicidal ideation. 

The patient and doctor information presents a whole section stating that you need to inform your close ones so that they can look out for any changes in your mood or behaviours....which freaked me out quite a bit. Depression is exactly what you need while fighting a rare and under-studied chronic disease and chronic pain. 🤯  

Is this for real? Will I develop depression now on top of everything??

Being a bit of an OCD-researcher, of course I went and got the original studies where they evaluated Benlysta, to see where this warning came from. And what I found was actually quite reassuring, that my chances of developing depression due to this drug don't seem overwhelmingly high. 

What follows now is a bit scientific, so if you're not interested in this, you may as well stop here. But as an epidemiologist who reads these kind of studies for a job, I think it's really interesting....maybe I'm slightly biased.🙃

In one of the first randomized trials to evaluate belimumab in patients with lupus, they reported that 6-7% of patients in the belimumab group developed depression, compared to only 4% in the placebo group. And a later long-term follow-up study (table below) of these patients, showed, that most of those patients developed depression in the first 2 years after starting belimumab. 

Subsequent studies obviously looked very closely at the risk of depression in patients who are treated with belimumab, and most of them could not reproduce this finding. A study that was published in 2020 (in the best medical journal, table below), which evaluated belimumab to treat lupus patients with active nephritis (kidney inflammation) actually found more patients with depression in the placebo group than in the belimumab group. 

A summary analysis (meta-analysis) of all randomized trials evaluating belimumab did also not find an icreased risk for psychiatric adverse events in association with belimumab when compared to placebo. 

So obvioulsy, the book on whether or not belimumab increases the risk for depression and other psychiatric diseases is not closed yet, and most studies actually find no increased risk. But it remains to be clarified why this one study found an increased risk. It could just be a chance finding, or it could have something to do with the way they collected their data, or whatever..... There have also been case reports of people who credibly report developing depression with Benlysta.

However, the whole topic is complicated by the fact, that belimumab has only ever been studied in patients with lupus, and that lupus itself can cause depression and other psychiatric conditions. So treating lupus, may well have an impact on psychiatric symptoms....all pretty complicated. 🤯 

However, once a warning like this made it into the drug leaflet, it is very difficult to remove it from there. But as a patient, who only reads the warnings without the background info, this is scary. 

It took me a whole day of literature search, to be re-assured and confident enough to start belimumab. Nonetheless, during the first 2 weeks, I was obviously over-analysing my mood for any changes. Very relaxing I know.🙈 

But after a month of treatment, I can report that, I think, my mood is unchanged. KNOCK ON WOOD!🪵🤛🏻 

However, should you ever find that I've become more depressing and/or annoying than usual, then please let me know and we'll just blame it all on Benlysta/belimumab. 😂

And on this note, I wish you all a great week. I hope you were not too bored by this update, as stabilized conditions do not make for exciting stories, but I'll take it! I'll keep you posted on my progress and hope to finally also write down some other posts about other treatments I've had in the past. 

Thank you all for your interest in my journey and your support.💕

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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!

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Daratumumab - 7 week update

I'm doing a lot better 🪵🤛🏻 

Hi everyone, good to see you back here! 🌺 

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! 

Obviously, I have a lot to update you about, and I'm not sure where to begin. I guess I'll just chronologically tell you how I slowly got better. I'm actually still kind of scared to write about my progress, because over all the ups and downs over the past years and plenty of treatments not working or causing serious side effects, I've kind of become supersticious.🙃 I feel like I jinx my therapy if I go on about how good it is too early. 🙈 But given that I actually went for a hike yesterday, I think it's time to talk about it.

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? 

1. you need the right friends in life
2. you need to keep pushing and nagging and do your own research
3. friends are the best for many reasons 
4. 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! 🌺

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