OCRELIZUMAB or OCREVUS for short is a Disease Modifying Drug (DMD) which basically means that it is used to try and reduce the amount of relapses a person might have.
This therapy is given when a person has 'active' relapsing MS, this means when someone is shown to be having relapses or that there are new lesions on their MRI scans. In my case my yearly MRI scans had shown new lesions on both my brain and my spine in 2022 & 2023 and I had experienced relapses twice over a thirteen month period, which was incredibly frustrating!
Ocrevus is given every six months as an infusion, although the first amount is given as two doses to allow your body to tolerate it. You are also given a Corticosteroid and Antihistamine, which are given as a combined infusion, one before Ocrevus and the other after it. This is done to help combat any side effects you may experience as a result of the Ocrevus infusion. I am monitored very closely throughout the whole process and where I have mine done, a special unit has been set up. They use it for various different treatments and it means there are fully qualified nurses who are experienced with a variety of treatments. I have found this valuable as I am not the easiest patient! Fortunately, as my veins are not easy to find, I had a portacath (sometimes called a TIVAD) put in my chest a few years ago, when I started having Lidocaine infusions to help with my pain. The nurses always had difficulty finding a vein but then, when they did, I would find it excruciating when they put a needle in. It feels as though a red hot poker is being stabbed in my arm because of the neuropathic pain I have all over my skin. This was why the portacath was suggested & subsequently put in my chest as it helps both me and the nurses!
I have tried a lot of the different DMD's, that are available, over the years and there are many more available now than when I was first diagnosed! The list of treatments that I have tried over the years are as follows, some were more successful than others!
I started on Rebif, then went on to Avonex, both of these were subcutaneous injections which I was taught to give myself. After those I went on to Tysabri, which was a 4 weekly infusion. This was when I was given my first portacath which made life a lot easier! I was on Tysabri for quite a while but it didn't feel like it was actually doing anything for me so, after talking to my consultant, I stopped it and the portacath was removed.
I wasn't on anything for a while after Tysabri but when it was suggested that I try another DMD the next one suggested was Tecfidera. This was a good one because it was a daily capsule taken at home and they were sent directly to me, so I didn't have to go anywhere for my treatment!
I stopped Tecfidera in March 2020 and I wasn't on anything until I started Ocrevus in October 2022!
It is an incredibly difficult decision when deciding whether to start or stop a treatment, it comes down to your decision, which is good but I never make that decision without the input of my consultant and Martin. I'm lucky with the support of both these people, my consultant, a professor, is very experienced and with Martin, he is the one who lives with the consequences of any of our decisions. I say 'our' decisions because any of my decisions are made with the full input and support of Martin. I couldn't do any of it without that support.
Back to Ocrevus! I am about to have my next infusion, it will be my third dose. I have to have a blood test a week or so beforehand so that they can check that I haven't got any infections.
I block out the whole day for my treatment as it is three infusions with breaks needed to check for reactions etc. We make sure we have food and drink with us and I always take things to read or my phone to play games but I usually end up just talking to the nurses or other patients!
The day starts off with a urine sample and then as long as everything is good I have the first corticosteroid & antihistamine infusion. This can make me feel a bit flushed but it is better than the possible side effects of the Ocrevus! After a 30 minute break I'll then start the Ocrevus infusion which takes about two and a half hours, depending whether they have to slow it down for any reason. After another 30 minute break I'll then have the next corticosteroid and antihistamine infusion. Once this is done and provided I'm not feeling any side effects, we can go home!
This is given every six months which is a big improvement on an infusion every four weeks or a daily capsule! It's all still pretty new to me and my body so I can't say for sure whether it is successful for me yet. Time will tell and I'm ever hopeful so we're just keeping our fingers crossed for now!
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