Disclaimer* this is purely my experience with the drug and everyone reacts differently. It is important you seek the best advice from your neurologist and medical team.
It has taken me a good 9 or so months to properly document my experience with Ocrevus. One because I have been so exhausted and the biggest reason being was I really wanted to get the full effect of it before I gave my opinion.
I feel I now have a clear opinion of Ocrevus and can give an informed account of my experience. For those who don’t know, Ocrevus is an in-hospital infusion which depletes your B cells in hope that when they grow back they will stop attacking your nervous system. Your first round of Ocrevus needs to be taken in 2 separate half doses, two weeks apart to ease your body into it. Also, before you have the infusion you are given an antihistamine and a small dose of methylprednisolone (steroids) to counter attack the side effects so they won’t be as bad.
My first dose was February 2018 – during my first infusion my heart rate kept dropping so they had to keep slowing down/stopping the infusion until my heart rate picked back up. Because of this I was in oncology for about 10 hours. I went home and remember sleeping a lot but apart from this my first half dose I did well. I had the infusion on the Monday and I was working again on the Wednesday from home and back in the office the following week. I then had my second half dose two weeks later. This time my heart played nice in the infusion but when I got home the side effects kicked in, guns blazing! I was in pain, I was bloated, I was nauseous and blisters started forming on my hands and scalp. I took Phenergan, slept for 3 days straight and only woke up to have a little to eat.
This reaction could have happened for many reasons but bottom line was that it can happen and it was quite a normal reaction for such a strong dose of medication. I didn’t work or do much for a week but I did go back to work the week later and just took everything really slow. I was also super careful around sick people and catching public transport to avoid catching anything. During this time I had a great deal of help from my parents and my husband. They cooked and cleaned for me which was a huge help especially the few days after the infusion.
Weeks after infusion…
A few weeks after I began to lose a lot of weight and feel really unwell. My heart rate was playing up again and I was a little worried something was seriously wrong because I felt like death warmed up so I took myself to hospital. They monitored my heart and did a few blood tests. It turned out I’d picked up a virus and that’s why my heart rate felt like it was fluctuating and also why I felt so so horrific. I was sent off to bed rest which I kinda, sorta did but didn’t. After I felt better I went back to normal life but continued to lose a fair bit of weight. My bloods showed my thyroid had shifted a little but they said they would continue to monitor my weight loss and then I did my second dose and ended up going back to normal weight so they decided it was just the initial shock to the body of a new treatment.
Second full dose…
I was pretty apprehensive about this round because I had to push it out as I’d caught a bug while overseas and needed antibiotics to get rid of it. This also caused more weight loss, by this stage I’d dropped to 53 kilos and I’m usually 60 so I was really worried my body wouldn’t take it too well. However, in true MS Warrior style I totes kicked Ocrevus’ ass. During this infusion I was extremely cold and did start to feel really nauseous but it was no worse than anything else we’ve been through. I’ll take nausea and being cold any day over my heart playing up. Deffos need that working properly! I did the treatment Monday and for the next couple of days I just took it easy and started working from home on the Wednesday. I eased my way back into the office the following week and then the week after I was back at yoga totally killing it. I felt so strong it was epic. I don’t know if it was the come down from the steroids they give you pre Ocrevus but it was great. I feel a lot stronger which is fantastic and my cognition has come leaps and bounds.
While on Gilenya my cognition was so bad and was a horrible symptom but it feels so good to be clear most of the time. I still have times where I struggle with speaking or word finding but at least now it’s only when I’m extremely tired in comparison to everyday on Gilenya. I have been quite fatigued but I guess that’s just MS and when you mix this time of year, starting a new job and getting through treatment anyone is bound to be a little worse for wear.
Ocrevus has answered so many of my prayers and I’m so grateful all roads led to Ocrevus. I’m so grateful for my squad that helped me make this decision when I was so bloody scared to switch medications! I’m so grateful to my team of doctors who are just too bloody good! And lastly, I am eternally grateful for my husband who has willingly taken charge and changed his diet/way of living to mine so we can support each other on my road to healing through food as well as medicine.
I hope and pray that everyone needing to choose medication for their MS can make a decision and be happy with it. I know it’s hard and I know there are a lot of factors to consider so my best advice with choosing is that your gut speaks a 1000 words. Trust it, believe it and always go with what feels right for YOU, your situation and your lifestyle. What people don’t understand is this is something we must live with every single day. We go to bed with it and wake up with it and even with treatment it doesn’t go away it simply masks the symptoms that still have opportunity to rear their ugly heads. I get so many questions asking how to choose medication and all I can say is do your research, know the facts and then go with whatever feels right for you because at the end of the day it’s not a cure it aids your ability to cope and the side effects are so serious it needs to sit comfortably with you so if anything does happen you know you did all you could! Sending so much love and positive energy to anyone in this position right now – it’s not easy and I’m always here to help ❤
miss anonyMS xo