Thursday 26 January 2023

another reason to love ocrevus

One thing I forgot to mention from when I spoke to the MS Nurse recently. She effectively said that Ocrevus was the reason why I'd got all of these infections

I've written in the past about how effective it is as an immunosuppressant, stamping down on my immune response for up to six months following each infusion. Previously this has caused me to delay having Covid vaccines and my annual flu jab, simply because Ocrevus is so good at its job. There's no point in having a vaccine when your body is unable to provide an immune response. 

But does this also mean that in the future I'm going to be leaving myself open to every single virus that's going around? At a time when years of social distancing means that nobody has built up any immunity? 

I can't help feeling - yet again - that I wish I'd not had to move to Ocrevus. It's almost like the drug exists to keep me weak and isolated. Previously when I was on Tysabri I was actually pretty healthy. I never really caught anything that was doing the rounds. Plus it was easier to fit vaccines around my infusions. 

Now every time I have an infusion I need to socially distance for a month, according to a note I was given in October (at the end of my first full infusion!).

But really, what are my options? I can't go back to Tysabri because of my rising JC Virus count. And as far as I can tell, Ocrevus is my last option as far as medication is concerned. 

I've heard that changing to a medication with lower efficacy has been shown to increase disability. So is Ocrevus really the last horse in town?

Tuesday 24 January 2023

an overdue update

First things first. Today, just over a week after I finished my course of Tamiflu, I actually walked upstairs for the first time since the last week of December.

Perhaps even more importantly, I also made it downstairs safely.

When I think about where I was a week ago, it's actually mind-blowing.

Tamiflu is an incredibly powerful drug. And the ten day course really knocked me about.

But the most upsetting side effect of the flu and Tamiflu  was the fact that I effectively lost control of my bladder.

Obviously I was keeping my fluids up and was self-catheterising as well as I could. But even with that I still had about a week where I was waking up two to three times a night having soakedthe bed. And this was even with the use of some pretty heavy-duty incontinence pants/pads - sometimes more than one item at the same time. 

A friend of the family - who is a community nurse - said that my body was solely focused on fighting the flu. So all of my usual MS symptoms were basically allowed to run unchecked, and in my case that included bladder weakness. 

Now I know that people with MS deal with this and more all the time. But as a person who has spent many years working to gain control over his bladder it was a real kick in the teeth. That old MS issue of your body letting you down again. 

For the last few nights, I've been able to get out of bed (by myself, using a rollator) to get to the toilet in time. And for a couple of nights, I've even slept through! Imagine.

What's the point of all this oversharing? 

When I spoke to the MS nurse she said that there are a lot of people with MS who are catching the flu. So if you are dealing with this and your body is concentrating on fighting the flu, you may - like me - go through a period when your MS symptoms start going crazy. As such, the chances are that these symptoms will start to calm down as soon as the flu - and Tamiflu - are out of your system.

I am by no means out of the woods. But I'm walking more, with the aid of a rollator, and I'm doing more for myself.

Having "conquered" the stairs (HA!), we're looking at things that will make it easier for me to move around our home. So like we did after my last relapse, we're getting an Occupational Therapist in to suggest adaptations to make things easier.

So things are going in the right direction.

But still. Baby steps.

Tuesday 10 January 2023

worse than a relapse

Ok. It'd probably be wise to start getting some of this down while it's still relatively fresh.

Christmas Day / Boxing Day were lovely. But immediately afterwards I started getting those old familiar feelings, this time with an irritating hacking cough.

To give Mrs.D and Little Ms.D a break it was decided that I'd move back in with my parents - primarily because their shower and bathroom are more accessible.

SPOILER ALERT: 12-ish days later I still haven't used the shower, although I have washed.

Kindness of strangers

As my mobility worsened, a seemingly endless stream of people - family members, my folks' neighbours and their relatives, old friends, district nurses - busied around the house. Moving furniture, bringing in new equipment, and eventually moving me from an upstairs room to my parent's dining room. Literally picking me up on a chair, and carrying me slowly downstairs.

I can't thank these people enough for the help they provided.

Eventually, I spoke to an MS Nurse who said that what I was going through was likely to be caused by a chest infection - that cough hadn't gone anywhere, either.
A course of antibiotics was prescribed and that was that.
Over the next week there were many challenges - getting to the toilet, moving around anywhere, the fact that any type of food both tasted like shit AND felt completely bizarre in my mouth. There were small signs of improvement, but overall I worsened.

So. At the end of that week, I called the MS Nurse team again.

The one I got this time has already appeared on this blog. She is lovely, a bit bats, but passionate about helping people.

When I told her my story she was fuming. Why did they give me such a weak antibiotic? That's not 
going to do anything. Get back onto your GP and get some proper antibiotics. (As an aside, I have temporarily transferred my medical care to my parent's surgery. This helped speed up a lot of things.)

In order to get more medication I would need to be examined - note that this is the first time I've been seen to get a diagnosis of what's actually happening.

A new diagnosis

I got a home visit on Friday evening and relayed my conversation. The visiting doctor said that the antibiotics I'd been prescribed were some of the strongest available. Also, that if I'd been given any more I'd have been taken straight into hospital and if I'd been given steroids (to combat a relapse, for example) I'd have needed to be placed on isolation.

After observing a temperature of 39.8 C (which for our American friends is something like 103.6 F), he diagnosed me with a particularly nasty strain of influenza - I was the third person he'd diagnosed that evening, but the first one he hadn't ordered into hospital.

So I'm currently in the grips of a very strong strain of flu. I feel incredibly lucky that I have not been placed into a hospital. Sleep is very hard to come by.

Today is day four of my course of Tamiflu (remember that? So retro!). It is very powerful but feels to be working. There are very small but noticeable improvements appearing every day. I'm so disoriented.

According to the doctor I saw, over the 10 days of Tamiflu I should expect to see a lot of improvements, followed by a long slow recovery of around 4-6 months. This is all very much worst-case scenario.

So at least it's not a relapse, right?

Unfortunately things are never that simple. Get diagnosed with a relapse? Ride the insomnia / metallic taste charabang back to an easy recovery.

With this flu I'm still living all the greatest hits of an MS exacerbation with added psychosis, hallucinations, weakness. And all without the possibility of steroids to move it on.