Thursday, 20 May 2021

my life on (MS) drugs

Image shows a colourful "Pick n Mix" sweet display, with plastic draws full of unhealthy looking sweets

Looks like I'll be changing medication again. Ho hum. 

This will be my fourth change. Weirdly, I had a reminder of my first MS DMT recently. I stopped taking Rebif when the post injection flu-like symptoms just got too much. With injecting three times a week it was like I felt normal for one day a week. 

And if I forgot to take a painkiller beforehand, then I'd be shivering, sweating and "shaking like a shitting dog". Obviously the side effects from my first COVID vaccine brought all those wonderful, flu-like feelings back. 

So then I went to Tecfidera. Which was fine. Two capsules a day was ok and it led me to getting a taste for peanut butter (chunky) at least. 

But this coincided with me trying the OMS lifestyle and diet. Now, either of these things - or both, or neither - might have led to me having the worst couple of relapses I've ever had. As mentioned previously, Your Mileage May Vary

So since 2017 I've been having Tysabri infusions. And it has been great.

I never forget to take my meds (something which was true for both Rebif and Tecfidera) because I have to go to the hospital. 

And that has always been the main positive - going to the hospital every 4 or 6 weeks means I get some regular time to chat with an MS Nurse.

Plus the infusions have always been a time where I just need to sit and do nothing but listen to music or make notes or read.

I've always been low positive for the JC virus so my neuro has been watchful. I've had regular MRI scans and so far, there hasn't been anything of concern on them. 

But as I'm low positive and have been on it for over three years, he doesn't want me to push it unnecessarily. Fair enough. 

So he gave me a (horribly small) list of options. An injection, a tablet and an infusion. 

The sainted Ms. Jackie Z (two mentions in two blogs!) shared an article with me called "Switch From Tysabri to Moderate-efficacy DMTs Linked to Worse Disability", which says.... well, it does exactly what it says on the tin. The injection and the tablet are lower efficacy than Tysabri, the infusion is the same. 

So it isn't going to take much consideration, is it?!

Having said that, my most recent MRI showed no new activity and no signs of PML. So according to that there's no big rush on to change meds. I will need to change eventually but it's not as dramatic as it could be.

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