I was diagnosed with Remitting Relapsing MS in 2006 at the age of 19. I decided against treatment, until recently, but have received regular check ups and MRI scans throughout the years. New lesions were found in my brain and my spine while others disappeared. I have had concerning issues with sight, memory, heat sensitivity, tight oesophagus, and a twitching right leg.
I have been prescribed Ocrevus and I am soon to start treatment for it. I am feeling very anxious about the whole process since this is the first time I seriously address the MS. Previous neurologists, while living abroad, have also suggested Tecfidera and Tysabri, which I decided against.
Itās been tough facing the MS, but I realise now more than ever that I need to begin treatment and chose Ocrevus because there is a lower risk of PML. It would be wonderful to get any insight from anyone that has tried or is using Ocrevus to treat their MS.
I have a few additional questions:
How did you feel directly afterwards?
What is the recovery like after a treatment session?
How long did it take you to notice any positive effects, if any?
Iām on Ocrevus, and it appears to be working well (anecdotal evidence from Mr Fracastorius rather than any MRI results, but the infusion was only on Thursday so it may be a bit early to tell anything without MRI results etc).A right pain on the day, and blood tests and wee tests ad infinitum before that, but an infusion once every six months and āhouse arrestā for a week after, beats 3 injections a week and sleepless nights on Rebif (Beta Interferon) any day! I came home absolutely knackered, and with a sore hand where the cannula had been (rubbish veins and the only one they could use was in the back of my hand!) but a good nightās sleep sorted that. And now we wait and see what happens.
I apologize in advance if some of my terms arenāt familiar to you. Iām from the US. I consider myself to be the disaster-poster child for Ocrevus. I had a reaction to the first injection involving rash and itching on my face and arms, the sensation that my throat was closing over (like a bad cold, not like I couldnāt breathe), and an instant UTI. They all went away within seconds of getting a super-dose of antihistamine. The second injection went well, but theyād also pumped me full of antihistamines and steroids beforehand. There were no recovery issues with either one. Since then I have had non-stop colds, complete with stuffy head, sore throat, clogged ears. I use a CPAP at night and frequently rip the mask off because Iām choking due to my head draining. I also cough all night long. Iāve had recurrent sinus infections as well as tooth infections (requiring antibiotics) and continuous tooth pain. Iām 55 and was just diagnosed recently, in spite of having these problems for 40 years. My neuro wasnāt going to attempt any drugs, because of my age, but he believes that without Ocrevus Iāll be in a wheelchair within 5 years. Quite honestly, Iām probably going to take my chances without it.
Hi Frankie, I had my two half doses in September and so far itās been great. Prior to this I was on Tecfedira for 4 years. On Tec I had constant minor side effects but not now. In the UK they give you steroids and antihistamines prior to the Ocrevus. The steroids make me zing a bit for the next day or two, which I quite enjoy. Apart from that no problems, Iāve seen people who become drowsy but I didnāt feel that. The idea of O is to slow progression so its success is measured medium to long term. There are people on social media who feel they have noticed improvements but I havenāt. My MS is somewhat variable anyway. I suggest joining the Ocrevus Facebook group where these questions are regularly asked. Good luck on your journey. Health and happiness Adam
Thank you for you response and insight Mr Fracastorius, itās much appreciated. I hope the recovery from the infusion has improved. When you say your under āhouse arrestā for a week, is that because of exhaustion or generally just feeling a bit crappy after the infusion? Thank you again. Happy healing.
Hey NorasMom, thank you very much for you response. Youāve had such an intense experience of Ocrevus. Despite all the terrible side effects did you notice any positive change towards the MS? Sending you a big hug.
Thank you for sharing your Ocrevus experience with me. Itās good to hear not everyone has suffered greatly on it. Iāll endeavour to check out the Facebook group. Thank you for the suggestion. Best of luck on your journey as well. Happy healing X
Hi ,I was diagnosed with ms nearly 2 yrs ago and started ocrevus march 2019 and now 3rd dose scheduled for 11th march .I was really anxious about starting it but for me and the 2 others that were starting the treatment at the same time were Ok .Im not saying that there havenāt been any unwanted side effects but non that have stopped all 3 of us from carrying on.We keep in touch infact imeet up with one at each infusion so we were lucky to be able to confide in each other.
I did certainly feel well after the last infusion with ms symptoms far less noticable but currently they have increased so hoping that next infusion will give me some respite.
Its perfectly normal to feel anxious and have mixed feeling but remember the infusion nurses are experts who monitor you whilst you have your infusion and can holt infusion drip and give antihistamines if you notice side effects.
All the very best it wont be as bad as you anticipate.
feel free to ask any questions if I can anwer them I will
Hi. FrankieW, I had my first infusion this week and feel mixed. The infusion went OK . Iād heard about people flying high after it and that certainly hasnāt been the case for me. If anything my usual symptoms felt a bit worse and Iām exhausted. The test will come when I next have an MRI I guess. I feel uncomfortable with the disclaimer I had to sign! and the strength of drug generally and how youāre opening yourself up to other infections. But I guess all we can do is trust our doctors. In the meantime Iām paranoid about germs and am carrying some antibacterial hand wash in my pocket permanently. Iām a teacher and staying away from ill people is basically impossible. Good luck everyone! Z
Just because as I understand it, the way the drug works is to knock out your entire immune system and then your body re-builds it again, without the bad bits. Thatās why the āhouse arrestā for week - in order not to catch anything nasty while your immune system is weakened. Especially with this chinese malarkey going on! They sound like theyāre having all sorts of problemsā¦ luckily I have a useful Other Half (Mister Fracastorius) who doesnāt mind going shopping and nipping into the doctorsā surgery to pick up sick notes etc.
Hi, you are making me wonder about somethingā¦you are 55, only just diagnosed, but how long have you been having MS like symptoms? Ive had PPMS like symptoms for 22 years, but not fully diagnosed till last month. Ive been reading about Ocrevus and the info says its recently been given to people with PPMS. Prior to this there was nothing for PPMSers. But if youve had MS for over 15 years, it is not going to help with slowing progression. It wouldnāt be offered to me either. Do you think that you could be amongst those not suited to Ocrevus as you have had MS too long? Maybe this is why you had such a bad reaction to it. Or am I barking up the wrong tree with these thoughts. Best wishes Bouds xx
I was also flying high the next day after my first half dose. No side affects at all. Second half dose next Mon. Am also terrified of catching things from everyone (receptionist). I too have anti bac wipes for my phone and hand gel. Particularly worried about this Coronavirus atm. Didnāt realise the immune system rebuilds between treatments tho which gives me some comfort to read.