Ocrelizumab: The Mighty Immunosuppressor

picture borrowed from https://www.gene.com/media/product-information/ocrevus - not entirely sure what it means but it looks cool

You may remember, way back before the dawn of history, when I had my initial two half-doses of Ocrevus. That would have been November 2021. 

Ocrevus (ocrelizumab) is thought to be one of the most effective DMTs. And it's quite appealing because, rather than being a daily / thrice-weekly injection, or a twice-a-day pill, or a monthly infusion, it's delivered through an infusion every six months. 

Well, as I write this, in September 2022, I'm potentially on the cusp of maybe having my first full dose. Ten months later. 

Here's the science bit. 

Ocrevus is an immunosuppressant. The good science behind this is MS is a disease where the immune system gets a bit confused and starts to attack itself, primarily the protective sheath (myelin) that covers the nerves in the body, as well as breaching the blood-brain barrier (which leads to scarring on the brain).

So it makes total sense to basically get the immune system to sit down, take a stress pill, and calm the fcuk down. 

Well, it turns out that Ocrevus is really good at its job. So good in fact that I've basically not had a fully-functioning immune system all year. Here's a quote from a recent letter from my MS Nurse.

Ocrelizumab reduces the number of particular cells of the immune system responsible for producing antibodies. Individuals receiving ocrelizumab do not seem to produce enough antibodies in response to COVID-19 vaccination which increases their risk of infection.

Because COVID hasn't gone away (despite what some people say), my medical team and I wanted to make sure I get my fourth dose (plus my flu jab) before I let loose the Mighty Immunosuppressor. 

After three blood tests at the hospital, my immune cell count has gone from 0.4 to 4.12. So I'm now able to get my next dose of COVID vaccine, followed by my winter flu jab, and then potentially my first full infusion. 

Maybe. 

Why any doubt? Well before I have my COVID vaccine, I need to do an antibody test. Then on the day of my infusion, I'll do another at the hospital. And I guess that my infusion will only go ahead if my numbers are correct. 

I am very glad that I have a medical team that is looking out for me.

But it's times like these that I really bloody miss my regular Tysabri infusions.

an offer to the healthy but intolerant

I've had so many ideas about blogs to write over the last few months. Some frustrations, some positive experiences, some actual thoughts. 

But whenever I start to think about writing them down, the whole world turns to shit.

War in Ukraine, Boris bloody Johnson, loss of female bodily autonomy, the inexorable rise of the right on a global scale - the list of historically significant events just seems like it will never stop.

And now - in the week when  I genuinely intended to get some writing done - the world is actually on fire. I mean, I know that the theory of the heat death of the universe is a thing. I just never thought I'd be living through it.

And yet again, when the news sources talk about the potential loss of life, who's the last to get on the metaphorical lifeboats? Who's the redshirt?

Yes, it's the aged and those with underlying health conditions.

I mean, it's not as though COVID has ever gone away - over 200,000 dead in the UK, the last I checked. But also, clinging on like a stubborn piece of crap that refuses to shift from the toilet bowl, are the Deniers and the Right-To-Normal-Lifers.

You know, the ones who pop up all over the place to say that, if COVID is as bad as you think (200,000), us people with underlying health conditions should just stay indoors, cowering, while the people of real significance are allowed to go about their lives. They have a life to live, dammit!!

It's the same with the heat. Some wag has already made a crack that it's obviously the snowflakes who will melt in the summer sun. It's just summer! Go back to bed!

Well. You would have to be brain dead to not be worried by the current global fronts. Yes, the weather happens. But this is insane.

It reminds me of the oppressive heat when we were last on holiday in Venice - as an aside, I can't imagine getting into a flying test tube of germs anytime soon. But that weather was too much, even for Italy.

Now there are fires all over Europe so I think we're beyond the realm of regular summer, right?

Anyway, I have an offer for the NORMAL people out there in the UK.

Basically, we'll treat the country as a timeshare. One month on, one month off. Both groups will need to share Christmas, obviously, but I'd even let them have an extra winter month if that might appeal.

In their months they can roam around, maskless and vaccine-free, snogging and shaking hands with gay abandon, coughing in the face of understanding and decent citizenship. We'll leave you to it, as long as all the theatres and cinemas and sporting events are available to stream (because ACCESSIBILITY).

In our months, you can stay indoors. We'll have the choice to go out wearing our masks with pride, maintaining social distance, safe in the knowledge that we won't be called weak or pathetic and that those around us at least understand why we're being careful. 

What do you think?

i was looking for a jab and then i found a jab...

... and heaven knows I feel CRAP today.

So yesterday I finally got my third COVID vaccine. It has been a LONG ASS time coming.

As a reminder, I had my second dose in May 2011. Then a few months later I caught COVID, just about the time my Neurologist recommended that I change from Tysabri to Ocrevus. After having my first two half-doses in November, I then had to sit tight before I could get another vaccine.

Until yesterday - oh, happy day.

The vaccine centre was a lot quieter than the last time I went. Because it's all over now, right? Or at the very least, we're in a place where we're all okay with over 100 people dying unnecessarily every single day, just because some people found that wearing a mask made their face a bit hurty.

The thing that remaned was the pride that the people who were working and volunteering there still clearly felt. Plus how pissed off they are that the UK government has basically washed its hands of them.

It took a while for us all to unpick what my MS Nurse was recommending for me - the letter I had was pretty confusing about whether it was a third dose or a booster. But eventually we went for a third full dose.

It was all good but today I feel like I've been run over. Bleeurgh.

Beats the hell out of getting COVID, obviously.

Please donate to the Disasters Emergency Committee.

between a rock and a shit place

And speaking of crap gaps… This has been so long coming that I've actually had my first two half doses of Ocrevus by now. NEWS FLASH: I'm not dead.

In fact, each time I've had an infusion, I've tried to write a post. But for one reason or another, they've remained unpublished. So what scintillating titbits have ended up on the cutting room floor?

1. The support acts for the headliner Ocrevus (also known as the pre-meds) are a regular case of the old push-me-pull-you. Intravenous antihistamines knock you out, and then a dose of Steroids picks you up. And obviously, mean that sleep is hard to find that evening. Doesn't really explain how I managed to forget the main side-effect of steroids up until the night of my second half-dose, however…
2. People can be really annoying. Yes, even people with MS. We aren't all saints, y'know.
3. Related to this, noise-cancelling headphones are the greatest invention ever.
4. MS nurses are still great. At the end of the second infusion, one of them came up to me and asked me how I was feeling. Then she inquired about how I was going to be getting home. Then she said, "Before you go, I have one more serious question for you…" She nodded towards the remnants of the food I'd been snacking on.
   "I love those Nature Valley granola bars but I've never had one of the Peanut Butter ones. What are they like?"
   I answered with the seriousness this question required. "Game-changer. Total game-changer."
   

I'm not being paid for including this endorsement - but I'm open to offers

However…

You might remember that when I was diagnosed with COVID in October, I was getting ready to have my booster jab. And actually catching the damn thing put an end to that.

All throughout the period of my two Ocrevus doses, based on conversations I'd had with my Neuro and the MS Nurses, I'd been led to believe that I would have to wait until at least the end of December before I had my booster jab. 

I asked for clarification after my second dose and the nurse said that she would speak to my neuro and get back to me.

But I was totally unprepared when she called and told me that the earliest I could have my next vaccine shot was the end of March.

This is due to the way that Ocrevus works - it's one of yer classic Immuno-suppressors. And it's so good at it that, if I had a Covid vaccine, I wouldn't have much of an immune response to fight the infection and build up antibodies. 

Unsurprisingly, when the MS Nurse told me this, I said I wished that I'd stayed on Tysabri (an Immuno-modulator, if you remember). 

And all of this drama was before the Omnicron variant and BoJo's rapid vaccination roll-out. I've so far had three emails and at least two text messages from the NHS Covid response team inviting me to book my booster jab. It's pretty wearying, especially because we're trying to prepare for a normal Christmas, which - let's face it - it doesn't look like any of us are going to get.

So after basically shielding for all of 2020, and actually getting Covid, I'm in the same boat until the end of March 2022 at the earliest. 

And if by some miracle, Christmas 2021 isn't a total write-off, I'll need to be the ghost at the feast and - to the best of my ability - avoid seeing most of my family.

Weirdly, there's a Facebook group for people on Ocrevus. And EVERYONE has been told different things about when they can get their third vaccine / booster dose.

The most immediate repercussion of this is that I'm going to have to miss my grandmother's funeral next week - it's upsetting but I just can't take the risk.

I know that this sort of thing has been going on throughout the pandemic, but it doesn't make it any less of a shit business.

the one where I get covid

POP QUIZ!

What has two thumbs and COVID-19?

 

This guy!

A little bit of backstory. When we last met I was feeling horribly smug about how easy (sort of) I found the lumbar puncture procedure. 

Well. 

Obviously this led to a SIX DAY headache. 

Steve's top tip: drink as much water as possible. Yes, the nurses told me to do this. But how do you know when you've drunk enough water?

(Apart from noticing when your head stops pounding, anyway)

I eventually got it right when the Divine Mrs. D bought me a water bottle that has hour markings on it. It's surprisingly easy when there's a sort of game involved.

Anyway. 

All during this time it became obvious that COVID was burning through Little Ms. D's school. Before Christmas they were encouraging the wearing of masks, keeping year groups apart and staggering times of the start and end of the day. Obviously a pain for parents with more than one kid but at least it cut down on the crowds at the school gates. 

However in January, everything reverted back to how it was before, including no recommendation about mask wearing. We thought it was insanity and it appears we've been proven right. 

We've been getting loads of messages from the school of confirmed cases, across all the year groups. So it was clear that something wasn't going well.

And at the start of last week - just when I was dealing with my post-LP headache - we found out that one of Little Ms. D's best friends had a confirmed case. At the end of the week she was going for a sleepover at my folks' house so we thought we'd give her a quick lateral flow test, which came back positive, same as the PCR test she did the following day. 

Both me and Mrs. D did a Lateral Flow test that weekend - both negative - but when we did the PCR tests, although Mrs. D's was negative, mine was positive. 

It is, to put it mildly, a massive pain in the arse. I was getting ready to get my COVID booster jab and my flu vaccine, prior to changing my MS medication. Ever since this damn thing started, we've been so bloody careful. And I still got caught out. 

I don't want to come across like Donald Trump *shivers*, but I feel like I've got a bad cold. Having said that, the brain fog is strong, and the fatigue is - dare I say it? - relapse-like. But that ain't happening. 

Infuriatingly, people continue to swan around without wearing masks. And you can't even blame them, can you? Not when the UK government keeps telling people that it's all over. 

Plus it appears to be really going for that whole herd immunity thing, and is more concerned with the economy and getting back to a normal which didn't really serve the needs of the majority of people in the country.

bill gates listening party today!

"I can't believe that I spent all this money inventing COVID and the vaccine so I could listen to this CRAP..."

(my working title for this blog was "lend us a pfizer" but even I thought that was too much)

So later today I'll be getting my first dose of the COVID vaccine. It's pretty bonkers that it has come around so quickly.

Only last week, I was talking to my MS Nurse about when I would be getting the vaccine. I'd noticed that some of my virtual MS friends had already had theirs. 

It turned out that this was to do with the different medication we were on - Tysabri is one of the few MS DMTs which modulates the immune system, rather than suppressing it. So it makes me Clinically Vulnerable, rather than Clinically Extremely Vulnerable. 

Good to know!

So I settled myself in for the long wait for Vaccination First Phase Priority Group 6 to roll around - Adults aged 16 to 65 years in an at-risk group.

(Vaccination First Phase Priority Group - great first John Peel session)

Well. Although the UK government is an absolute shit-show, they do seem to have grasped the value in rolling out a vaccine programme at high speed*. So I got a  text yesterday saying that an appointment had been made.

* - the need for speed may be due to a desire to reopen everything ASAP, obviously...

And in a short while I'll be heading to our local Velodrome - I'll let you know how it goes!

SPOILER ALERT: I know loads of people who've already been and it seems to run really well.

ms medications roulette

In which I apparently decide to change my medication AGAIN.

An actual fork in the road - from the first Muppet movie

In the sparsely-populated series of positives from the COVID outbreak, one was my recent annual MS MOT. Ordinarily this involves me getting over to Nottingham to see my neurologist for an at-most 20 minute appointment. Even though it's only short it can wipe me out completely for the reds of the day.

The other week, I had the same appointment over the phone.  We talked about my recent MRI results, my general physical and mental state, and a number of topics that I would probably not have been comfortable mentioning face-to-face.

Obviously another thing I asked about was whether I would be able to take the COVID vaccines in the future. He said that being on Tysabri I should be fine, because it isn't an immunosuppressant. Tysabri is an immunomodulator, that works (here comes the science bit!) by creating a wall that stops white blood cells from getting past the blood-brain barrier and into the central nervous system.

So that was a bit of a relief.

However...

As I might've  mentioned before, I've always been a low-positive on the JC Virus test - this is the virus which can lead to PML. As I've been on Tysabri for over three years now, the risk of developing PML is increased. 

As such, my Neuro advised me to start looking at a change in medication. If there is an increase of my JC virus titres (basically the concentraion of the virus in my blood), this will change from "advice" to a "recommendation".

There are basically three options for me:

• Gilenya (fingolimod) - a pil which you take once a day. In clinical trials this led to 50% fewer relapses
  
• Mavenclad (cladribine) - a pill which is taken. in two treatment courses, twelve months apart, It also reduces the number of relapses by about 50%
• Ocrevus (ocrelizumab) - an intravenous infusion every six months, it reduces the number of relapses by about 70% - so this is the only option which is as effective as Tysabri
  

So that's something.

But it turns out that all three of these options are immunosuppressants! Therefore they won't work with the COVID vaccine.

Even better was when I received my standard post-appointment letter from my Neuro in which he basically said that I had decided to change meds. As opposed to what I had thought was the conclusion of our chat - that I was just looking at my options.

What larks!

song for a future generation

I am tired, I am afraid
My heart is full of dread
"Soldier" by Richard Dawson 

This was the unnecessarily "on the nose" soundtrack to my last #tysabri infusion which was no fun at all. It was so long ago, I'm almost ready to go back for my next one. 

I started writing a blog post during that infusion but it was so whiny and angsty that I decided to shelve it until the moment passed. 

Obviously I'm still waiting. 

In a sense, life is - for everyone - an endless, perpetual NOW. Things change and they stay the same. Rules change, restrictions are lifted but the results are the same. 

Life seems to have returned to how it was in February / March. My sleep has certainly returned to how it was then - sporadic and unsatisying!

A complete lockdown seems inevitable so we're stealing ourselves. We're trying to stay abreast of the developments but also trying to stay sane. Keeping things light for our daughter but preparing for when everything changes again. 

I can't help feeling that there will be some kind of global outbreak of post-traumatic stress if/when this ever ends. Yes, my flippant response to anyone asking me how it has been for us is, "Well, I don't go out that much so no change there". 

But really, the first lockdown came at a time when I'd got a little braver at taking risks. Longtime visitors will know that my self-confidence has taken a battering over the years, as my mobility has gone south.

(This is not a situation which is unique to me, obviously)

But at the end of 2019 and at the start of this year, I had been getting better. At leaving the house, at taking (small, calculated) chances. And in the last month or so I've been made aware that I've reverted to my past bad behaviours. Staying in whenever possible and having mild panic attacks whenever I do leave the house. And freaking out if things don't go to plan. 

The pandemic is an exhausting situation for everyone but surely it has to be particularly bad for anyone living with some kind of chronic illness. Not least because of the fact we're seen as canon fodder or collateral damage. 

And all this is even without considering the utterly terrifying prospect of Long COVID. 

But at the same time, we've seen that accessibility IS possible. More and more events have been streamed online. Working from home has been normalised. For god's sake, even my mum and dad are doing their grocery shopping online. 

With the emphasis on getting back to normal, going out to work and supporting the economy, are things eventually going to revert to how they were?

Maybe this will be the lasting trauma from COVID for the chronic illness community. The memory that there was a time when events were accessible and remote working was encouraged. A time when the general populace had a little insight into the fears that disabled / chronically ill people have lived with for years.

That your continued good health is not a god given right. That no-one's job is secure. 

After all that, it would be terrible if everything just returned to the way it was before. 

I am tired, I am afraid
My heart is full of hope
"Soldier" by Richard Dawson