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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Categories: belimumab, treatment