Pregnancy and small-fiber neuropathy

Pregnant with autoimmune small-fiber neuropathy 

Hi everyone, good to see you back here after a long time! 🌺

I've been absent for a veeeery long time. You might already guess why...  

we had a baby last October... 

In this post I'll let you know how my small-fiber neuropathy behaved during and after pregnancy. I hope this will be of help to many of you. I always wished I had more information on what to expect, before I was pregnant, but I couldn't find any information. Thankfully, I knew some women from social media who had been pregnant with small-fiber neuropathy.  

I had daratumumab in early January 2022

In my last post in January 2022, I reported how I restarted daratumumab. After two daratumumab infusions, I could quickly feel my neuropathy improving and I was almost symptom-free by the end of January. 

In early February, I found out I was pregnant

Having a baby had been on our minds for a while, so obviously I checked beforehand, whether any of the drugs I was taking could be problematic if an unborn baby was exposed during early pregnancy. My OB reassured me, that any type of immunoglobulins (including monoclonal antibodies like belimumab or daratumumab) do not cross over to the baby until week 13-15 of pregnancy at the earliest. 

I had also discussed with my OB, which treatment for my small-fiber neuropathy is possible during pregnancy. Drug treatments are always tricky during pregnancy. Generally, pregnant women are excluded from clinical trials, which is understandable from an ethical point of view, but it results in a complete lack of safety information for most drugs. 

We agreed that I would continue belimumab until week 12 and then stop any treatment because continued treatment could cause immunosuppression in baby later during pregnancy. This is not to say you absolutely can't have belimumab during pregnancy; belimumab is not super toxic to baby or anything and there are many reports where women took it throughout pregnancy. But it's better not to take it if you don't have to. Although not much is known, Prof. Wexler as well as Prof. Maryanne Walker from Boston reassured me, that the few SFN patients they had seen were doing fine during pregnancy with minimal to no treatment. 

Most autoimmune diseases are less active during pregnancy

During pregnancy, the immune system changes. It typically calms down in order not to reject the genetically 'half-foreign' baby. Thus, many autoimmune diseases like MS or rheumatoid arthritis often improve or even go into remission during pregnancy. This is also why you are more susceptible to infections during pregnancy. However, in the end you never know. Some auto-immune diseases, such as lupus, are also notorious for flaring up during pregnancy and might require intense treatment. 

Around week 5 of pregnancy I had an acute neuropathy flare 

One week after I found out I was pregnant, I was in pain all over from one day to the next; my feet and hands were very sore, my legs were burning, my face and neck were itchy..... and I was frustrated! I was just doing really well after the daratumumab infusions and was happy about our news. I was also worried, that if my immune system went crazy now, it might abort my pregnancy. But thankfully it didn't.... 

Symptoms gradually improved again... 

From about week 6 on I was so nauseous, which effectively distracted me from my neuropathy anyway.🙈 A few weeks later, after I had found a drug that controlled my nausea, my neuropathy symptoms had already improved quite a bit. I was still on belimumab at that point, so I'm not sure whether I improved thanks to belimumab or due to pregnancy hormones. However, by week 15 my neuropathy symptoms were pretty much gone, despite me stopping belimumab at week 12. So the hormones were definitely helping.

I know it was week 15, because we went for a 10 day vacation in Mallorca then and I was able to wear my hiking boots and go for hikes along the coast. Occasionally I could feel my feet getting a bit warm, but I had no other neuropathy symptoms. I was more starting to deal with pregnancy-related swollen feet, shortness of breath, and exhaustion, which prevented me from doing bigger hikes. 

Of course I also did my usual PubMed search...

...and I found an old study in which they measured overall IgG concentrations in pregnant women over time. IgG are the most common antibodies we have in our body (not sure on that one actually....), and Prof. Wexler suspects, that my neuropathy is driven by some unidentified aberrant type of IgG, which my body produced in response to a viral infection and which attacks my own nerve fibers. This study nicely showed an increase in IgG in early pregnancy, which then decreased over time until delivery. This might explain my symptom flare, but who knows in the end....surely it's more complex than that too.

Between week 14 and 30, my neuropathy was in complete remission without any treatment

It was such a nice break from the constant UPs and DOWNs with my SFN over the past years. Finally, we had something exciting and beautiful to focus on and the hunt for new medications and the constant negotiations with health insurance were on hold. 

I expected my small-fiber neuropathy to be quiet until delivery....

...but around week 30 I could suddenly feel the trigger spot on my left foot. Within a matter of 2 days I was in full neuropathy pain again without any obvious trigger. And I guess you can imagine what mood that left me in....

Steve had Covid the week after my symptoms came on

I'm still wondering whether I might have had asymptomatic Covid-19 before my symptoms started and passed it on to Steve. This could explain the onset of my neuropathy symptoms. However, I did test myself regularly from the moment Steve was ill, and I never had a positive (we did gear up with masks even in the house and all, given I was pregnant...). 

But I don't think I had Covid....

...even though it would make sense. I was immunocompromised AND pregnant, so out of everyone, you wouldn't expect an asymptomatic infection in my case. Plus I was super careful not to contract COVID all the time, and had basically not been in any risky situation in the time before. It's much more likely that Steve caught it at work and I was just lucky not to catch it from him. But after all you never know.

Most likely my small-fiber neuroapthy just came back randomly

I had read about other autoimmune diseases being most quiet in trimester 2. Maybe my body was just getting used to being pregnant and deciced to act up a bit?....Or maybe daratumumab had still been helping before and was starting to wear off? 

So now I was in pain, but could not take the drugs I usually take 

My options were: 

1) do nothing and just sit it out...

...I wasn't keen on that, since I didn't want to go into delivery on my last leg and then having to care for a newborn whilst having a big struggle with neuropathy. Additionally, nobody knows if the antibodies, which cause my symptoms cross the placenta and would cause the same symptoms in the baby. 

2) high-dose steroids... 

...steroids are usually fine during pregnancy, but given that my neuropathy had previously become resistant to steroids I was not keen on trying around with that. Plus steroids drastically increase your risk to develop gesetational diabetes, which comes with its own set of problems. 

3) intravenous or subcutaneous immunoglobulins (IVIG/SCIG)...  

...IVIG/SCIG are human immunoglobulins, so they are fine to take during pregnancy, but like for steroids, my neuropathy had previously become resistant to IVIG/SCIG. Plus I can only tolerate SCIG anyway because I get terrible headaches from IVIG. 

4) plasmapheresis to wash out the bad antibodies... 

Luckily, Prof. Wexler and I had a chat at the beginning of pregnancy about what our backup plan was, in case my neuropathy came back during pregnancy. We agreed, that plasmapheresis will be the treatment of choice for above reasons and because all other immunosuppressants would either not work fast enough or would come with risks for the baby. Back then we were both optimistic, that we wont have to use this backup plan, but I was happy we had a plan when I needed it. 

So we got started and applied for cost approval with health insurance, which we luckily received quickly. We also got in contact with the treatment center in Bern, which has most experience conducting plasmapheresis in pregnant women. 

Together with the experts from Bern we decided to go for plasmapheresis and not immunoadsorption. Both are similar procedures, but immunoadsorption specifically filters out IgG from the blood, whereas plasmapheresis exchanges the entire blood plasma including all antibodies and inflammatory proteins which float in plasma. Thus, you have a higher chance to catch the culprit with plasmapheresis if you don't know what's exactly causing your disease. So while immunoadsorption is a bit less heavy on the body, plasmapheresis provided the higher chance to work because we are not sure what exactly causes my neuropathy in the end. 

I had several rounds of plasmapheresis

I could write an entire post about this treatment, but this post is already getting long. Long story short, plasmapheresis is not a walk in the park, but it's doable. It's definitely not a desirable long-term treatment if you have other options. You are hooked up to a machine and you have to lie there while your blood is running through a machine, and if you get unlucky your blood pressure acts up during the process...you can imagine how pleasant that is.

Feel free to let me know in the comments if you'd like an extra post on my plasmapheresis treatments, but I'll leave it at that for now. 

Did plasmapheresis help my small-fiber neuroapthy?  

Yes it helped; my symptoms improved after every procedure. After procedure 3, I was even in complete remission for a few days. However, the problem was that my symptoms returned only a few days after every treatment session. So after about 7 treatments we decided to stop, as it was not feasible, and I was not willing to continue plasmapheresis several times a week right up to delivery. 

My initial hope was that plasmapheresis could induce remission that would last well past delivery, but obviously that was not the case. However, my symptoms were somewhat milder than before. 

There is a study going around (Olsen et al.), which reports a series of 17 or so patients with presumably autoimmune small-fiber neuropathy in the US. All reportedly profited from plasmapheresis. Patients initially got 5 or so rounds of plasmapheresis in 2 weeks and then one monthly procedure. This report was one of the main reasons why we went for plasmapheresis, and why I hoped it would result in a lasting effect for months. 

When I read this paper again, after I had my plasmapheresis, I realised how vaguely they defined their outcome. All they said was that all patients self-reported improved symptoms or slowed disease progression. No numeric or qualitativ details on this.... This can basically mean anything. They might still have gotten worse by the day but just a little bit slower... So I guess I can also report 'improved symptoms' but this small improvement was probably outweighed by the invasive an unpleasant procedure. So personally, I cannot recomment plasmapheresis....but then again, everybody is different.

After plasmapheresis, I had to substitute the good antibodies they washed out

I had a very nice hematologist who supervised my plasmapheresis. He explained that I should replace my lost IgG after finishing plasmapheresis to boost my own immune sytem as well as baby's immunity. He also encouraged me to keep SCIG going for a bit to see if it would help my symptoms after all. He managed to get my health insurance to approve expensive ongoing SCIG treatment in record time somehow. He said sometimes treatments work again, even if they stopped working before, and he may have had a point. 

So that's what I did for the remainder of pregnancy. I tried to apply individual SCIG doses as high as I could tolerate and luckily I didn't develop any bad headaches. 

Neuropathy did not resolve prior to delivery....

...but it did improve over time. By the time delivery came around it was quite mild. I could feel it a bit when walking but apart from my feet being a bit sore I didn't have many symptoms. Ironically, I did develop pretty bad carpal tunnel syndrome in my hands from edema in the last two weeks of pregnancy, which was definitely also very painful, but felt very different to SFN.

Again, was it SCIG or the pregnancy hormones that helped? 

Who knows.....but I'll take the win!

So we had our baby who was doing very well and we got to enjoy family time without worrying about neuropathy too much....which was lovely. I was worried I would have a BIG BAD flare shortly after delivery, when hormones start changing back. But thankfully this didn't happen. The first month I continued SCIG therapy, but after I started to have a few bad headache days I decided to stop it. 

Finally, 2 months after delivery, a neuropathy flare started...

This was not unexpected. I had discussed with our pediatrician before, which drugs I could take while breastfeeding. After consulting with the pharmacolgoy team at the children's hospital we agreed that it was ok to re-start belimumab while breastfeeding. So that's what I did and am currently still doing. 

How am I doing 5 months post-partum? 

I'm doing better than I feared. I expected a bad flare to come on soon, which would make me miserable and require daratumumab, which in turn would force me to stop breastfeeding. Thankfully, this didn't happen (yet🪵🤛🏻). The flare I had 2 months post-partum improved quite quickly after I started belimumab. 

 

I did have two symptom-flares following viral infections in January. After new year's I caught an annoying stomach flu, which gave me a fever and GI symptoms for about a week. And of course, 5 days into this process SFN symptoms popped up all over. Same thing again, but a bit milder 2 weeks later. But thankfully both flares calmed down again over about 2 weeks. 

Neuropathy is not gone, but it's currently pretty mild

My only limitation I have right now is that my feet get sore if I wear the 'wrong' shoes. But as long as I stick to soft padded shoes I am doing well, and I'm veeery thankful for that. This way I get to enjoy this beautiful time without the whole neuropathy hassle. 

I've been wondering what role breastfeeding hormones play in this....I guess we find out when I stop....🙈

And of course I'm always worried something will trigger neuropathy to come back full force, which could basically happen any day. With all Covid mitigation measures gone, it is hard to protect yourself from catching it. So far I've still managed to dodge the bullet. Who know's maybe it wouldn't be too bad, but given how I react to most infections, I'm not so keen to find out how I'd do with COVID....but I guess we'll find out one day.  

Anyway, I'll take it step by step, and we'll see how it goes. 🪵🤛🏻 Right now, I'm doing well, and thats GREAT🙃

And on this note, I thank you all for sticking around while I was absent for so long. I hope it won't take a full year until I manage to update you all again, and until then I hope you all stay healthy. 

I hope this was helpful to many of you. If you have any experience with small-fiber neuropathy or similar during pregnancy, please share in the comments! 

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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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My neuropathy workup in Boston

I finally met a specialist in 2017 

Hi everyone, good to see you back here! 🌺 

In this post I take you back to 2017, when my second small-fiber neuropathy flare started, while I was living in Boston doing a postdoc at a large hospital. 

This is just a bit of Boston spam. A photo that Steve took while he was over visiting. 

I recommend to first read part 1 of this post, in which I wrote about how my neuropathy symptoms came back in 2017. Like in 2014, it happened about 2 weeks after a 'harmless' viral cold, this time after almost 4 years in remission. 

I left off writing about how I had gone to a fancy walk-in primary care clinic in downtown Boston, where I got a prescription for prednisone from a nurse practitioner. She had obviously never heard of autoimmune small-fiber neuropathy, and just did a few basic neurological exams to make sure I'm not having a stroke or anything immediately dangerous. 

I asked her to refer me to Prof. Maryanne Walker (not her real name) who is one of the leading international specialists on autoimmune small-fiber neuropathy. Coincidence had it, that Prof. Walker practices at the same hospital in Boston, where I was doing my postdoc. 

The clinic reassured me that they had sent out a referral, and that I would be contacted within a week.  

So I went home and started my prednisone treatment...

I was pretty freaked out, because first of all, I had never expected symptoms to come back at all, and secondly, I was living abroad by myself, not knowing my way around the local health care system. I was kind of in denial, and all I wanted at this time was for symptoms to disappear, so that I could pretend all this never happened. 

I was prescribed 1mg of prednisone / kg body weight, and in my weird state of mind, I just added another 20mg daily. Of course that was absolutely unnecessary, because 1mg/kg is a high dose, but I just wanted to make sure it worked and people do weird things I guess.....OH WELL.... 🙈

Prednisone did its job once again...

Luckily, prednisone did work very well again, and after about a week of treatment, I was able to walk home from work (about 30 minutes) in regular shoes without any major foot pain. During my first flare back in 2014, it took more than 3 months to do all the diagnostic workup, so after I finally started prednisone, it took about 3 weeks until I could feel a slight improvement and over 2 months until I could walk pain-free. It makes sense to me, that the longer you let nerve damage happen, the longer it takes for it to heal. 

This is a photo of my feet after a shower a few days into prednisone treatment. You can see that they were a bit red after being exposed to heat, but not as bad as they had been during my flare in 2014. I also bought my first pair of Ugg boots, which facilitated walking a lot, because the soft padding reduces pressure being applied to the bottom of the feet. 

But I did feel a bit beside myself during this time

Prednisone is a synthetic stress hormone, and it basically puts your body in a constant state of stress. At high doses it can even induce psychological side effects like mood swings and sometimes even psychosis. 

I generally tolerate prednisone quite well...

...but in hindsight I have to admit, that I was in a bit of a weird head space during this time. It's a weird feeling somewhere in between being super energetic, very moody, and totally exhausted at the same time. The tiniest things upset me a lot more than they usually would. On top of that, I could constantly feel my heart beating quite fast, and I was up every day at around 3 am without a chance of going back to sleep. 

Thankfully, I had told the nurse practitioner that I had trouble sleeping with prednisone the first time and she prescribed some anti-histamine sleeping pills. So at least I was able to fall asleep and get a few hours every day. 

So my neuropathy was doing better, but what now??? 

Obviously, I needed to be checked out by a neurologist. Prednisone was helping, but it's not a drug that you want to take long-term, especially not without any medical supervision. So I needed a plan of how to go forward with my treatment. 

Days past and nobody contacted me...

The clinic had promised that the hospital would call within a week, and that I did NOT need to contact them. However, after more than a week had past, I decided to give them a call to check on the status of my referral. Let me tell you, bureaucracy can drive you absolutely crazy anywhere, but they sure know how to in the US. 🤯🤯🤯

Turns out, they never received my referral...

I got through to some receptionist of the patient coordination center of the hospital, who told me that I needed to get my primary care provider (PCP) to resend my referral. 

So I called the walk-in clinic again, and they promised to resend it. But even though I paid about 400 USD for a 10 min appointment, they didn't manage to send it through, even at the second try. They insisted they had sent it, and the hospital insisted they had never received it. 

I asked the clinic to send the referral to me, so that I could send it or bring it in, but of course, they were not allowed to do so for legal reasons...🤯😡😡

I started to get really frustrated and was giving the hospital daily calls. But all I ever heard was that they can't help me without the referral, and that the referral was not there. 

Let me tell you....the combination of high dose predisone and the growing frustration was not a great combination. I remember one time, after I hung up the phone, I literally slammed my phone on the floor and then had to go pick it up in pieces....luckily it still worked.🙈   

Long story short...it was impossible to get a specialist appointment

They also informed me, that Prof. Walker was generally very booked out, so even if they did get my referral, they cannot guarantee a timely appointment with her.

This is actually a worldwide problem

I have now heard from so many more people with rare diseases all over the world, that they have to wait several months and sometimes even YEARS 🤯 to see a specialist. Specialists are few and far in between and all of them have really long waitlists. 

So I decided to give it one more try, and if that didn't work I would just go home to Switzerland and see Dr. Soland. Nowadays, I would probably just ask Dr. Soland for a Zoom call, but prior to the pandemic this was not something I thought of.... 

What a coincidence, that I worked at the same hospital as Prof. Walker...

I started to look into whether I could get an appointment via some internal processes for employees to receive accelerated treatment. 

Surely these hospitals wouldn't turn down their own employees in need??

Two days later I was notified that I could go see Prof. Walker the next day. 

I first went to see a nurse practitioner, who took another skin biopsy 

She took a skin punch biopsy sample from my upper thigh as well as a sample from my lower thigh from 10 cm above my ankle. When I had my skin biopsy done in Bern in 2014, they only took a sample from my lower thigh. 

I didn't receive the results from my skin biopsy until I was back in Switzerland, as the lab analyses these samples in batches once every few months. I later got the result below, showing that I most likely had small-fiber neuropathy. Density of my small nerve fibers was on the 10th percentile, and morphologically it looked like I had polyneuropathy. I find this quite impressive considering that I had only had symptoms for about 2 weeks by that time.

After the nurse practitioner had taken the biopsy, I went to see Prof. Walker in her office.

For the first time, I met a doctor who actually knew what I had...

...and it started to dawn on me, that it was probably a lucky coincidence that my second flare started while I was in Boston. This way, I actually had the chance to meet one of the few experts in autoimmune SFN worldwide. What are the odds that I would be working under the same roof as her...

And in hindsight, I'm so thankful that I didn't pack up and leave 

Prof. Walker had seen and published about patients with autoimmune SFN from all over the world, who had flown to Boston because they could not find medical treatment at home. And here I was, randomly working at the same place, sitting in her office...sometimes life really has its own ways. 

She was very kind and understanding. She also told me that her mother immigrated from Switzerland and that she is half-Swiss and that she collaborates on different scientific projects on autoimmune SFN with neurologists in Switzerland. 

She knew Prof. Wexler (not his real name), who I'm seeing today in Switzerland from conferences and research and pointed me in his direction in case I ever needed a specialist in Switzerland. I may not have found him without Prof. Walker, and I'm very thankful for that, because Prof. Wexler is great. 

I got a thorough small-fiber neuropathy workup

She did a detailed physical examination and asked me about all my symptoms. Given that I had been on prednisone for almost two weeks at this point, most of my symptoms had already subsided, but I showed photos of my feet from when it started and explained my symptoms.  

I also told her everything about my first flare back in 2014, and how we treated it successfully with prednisone, thanks to her publications. 

She agreed that all this definitely sounded like typical sensory small-fiber neuropathy. She also agreed that it must be autoimmune given that it responded so well to prednisone and that it happened after a respiratory tract infection both times.

Then she said, that I was an interesting patient, because she had never seen a patient with a relapse of symptoms after so many years.🤯 

On one hand it was great to hear that I was an interesting case to her, but at the same time, here I was with one of the few experts in the field and I had to hear that my case was unlike anyone elses.....🤯🤯🤯

After that I went and had a whole bunch of tubes full of blood drawn. By the way, all tests came back clear once again, but Prof. Walker said that this was expected as SFN is often a rule-out diagnosis. 

The day after, I went in to do autonomic function testing 

Small-fiber neuropathy can affect the small autonomic nerve fibers, which control things like blood pressure, heart rate, sweating, digestion, and bladder function. I never noticed any symptoms of autonomic dysfunction. Back in 2014 I had some autonomic function testing in Switzerland, and all they found was some mildly reduced sweating in my right foot. 

Of course, Prof. Walker's specialized clinic had all the fancy equipment, and I had my first tilt-table test, to measure if my heart rate and blood pressure can keep up with changes in position. I was strapped onto a stretcher and they patched electrodes and all sort of devices on me. Then I had to lie still for a while and they recorded my blood pressure, my heart rate, oxygen saturation, and other things. 

After about 15 minutes, the strecher started moving into an upright position, while my body functions were being monitored. Finally, after another 15 minutes, it slowly went back down to a horizontal position. Thankfully, they did not find any abnormalities in my heart rate and blood pressure.🙏🏻 

I know that people with autonomic dysfunction often feel terribly ill for days after a tilt table test, but given that my autonomic system seemed to be ok, I didn't really notice any side effects. 

Then they measured my sweat response in a QSART sweat test

Once again I was treated with electro shocks....🙈

I remember that they would induce electric stimuli (as they called it - I call it electro shocks😂) to my arms and legs while I had my hands and feet on some surface that would measure my sweat response. But also in this test, they could not find any abnomalities, which may also be due to the fact that I was already on treatment. 

I remember they tested a few more things, which I can't remember exactly, because it's been a while ago now, and I don't think I ever asked for the medical notes of the autonomic testing. However, if you want to know more about autonomic function testing, this youtube video by a neurology professor at the Mayo clinic gives a nice overview on what to expect. 

After all the testing was done we discussed treatment...

I told Prof. Walker, that I was currently on 80mg prednisone per day, and she looked at me with a slightly concerned face.🙈 She wanted to drop the dose down to 40mg per day immediately, but then I got worried that symptoms would come back... so we bargained a little and agreed on 50mg/day.

The plan was to complete a total of one month on 50mg/day (including the 2 weeks I had already been on 80mg/day) and then to drop by 10mg every week. If symptoms came back when I dropped the dose I could go back up for a little while. However, she said, if I can't drop down to zero within reasonable time she recommends switching to intravenous immunoglobulins (IVIG) for a while once I'm back in Switzerland. 

And now this post has already gotten very long, so I'll leave it at this with a few nice impressions of my otherwise great time in Boston. 

And on this note, I wish you all a good rest of the weekend. As always, thanks for your interest in my journey.💕

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This is me sailing in Boston harbor with a great native Boston friend. I blanked out my face, just because I have no idea where these photos end up, once you add them to a public blog....

I loved the foliage during fall in New England. These photos are from New Hampshire. 

A beatiful photo, my husband took during one of our lovely trips through Maine in summer. 

This is Jamaica Pond close to where I used to live. I loved walking or running there (when I didn't have neuropathy obviously). 

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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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