Newly diagnosed
Hi everyone.. im 37 and had issues for last 12 years mostly tingling feet back etc.. got told years ago was m.e ... way down line last july whole right hand side went numb.. had stabbing pains in neck weaknesses all sorts my doctor didn't believe me but ended up sending me for mri end Oct . then another mri with contrast mid Nov then lumber puncture mid Dec.. 30th Dec last year was diagnosed. I feel OK about it I'm glad I wasn't going insane.. I was offered 2 choices I have highly active rrms the main lesion is on my cervical spine thats causing issues I have chosen ocrevus waiting for blood test to come back make sure all good to go. What I have read about it sounds good I'm happy but.. I do have a heart that races alot..and palpitations for years. I have read it can cause fast heart rate whilst having infusion this has worried me little. Anyone else experienced it ? Would it last long ? How do you all find ocrevus in general? Thank you
Hi Emmac1984, Welcome. I’ve had 4 rounds of Ocrevus so far and I am one of the ‘lucky’ ones who has an infusion reaction to it, including palpitations. However this is over come by keeping my infusion rate at a maximum of 90ml/hr (s l o w!) while simultaneously being given ALL the antihistamines. Before, during, after and for a few days after. I still get the odd pitty pat even with all the Piriton but it’s manageable. Try to keep an open mind as you may breeze through your infusion (most pretty much do from others accounts I’ve read here) and not have any cardiac symptoms at all. One thing is for sure, if you get super anxious worrying that you will, you’ll be more likely to do to get sheer adrenaline flying around your system! Easier said than done not to worry, I know. I would just say be aware if you start getting itchy during your infusion as they increase the rate (which will be done slowly with careful obs being taken) and your first infusion will be broken into 2 parts anyway to see how you go. Getting super itchy and hot is my first sign that I am reacting. Then I get an impressively dramatic rash come up, heart rate goes nuts followed by blood pressure… We don’t allow this to happen now because after 2 attempts at increasing my rate both ending the same way (see above) we now know my rate is 90 and we stick to that. It’s just means I am there aaaalll day 🙄 I really must add though that I think I am far more the exception than the rule in my response to Ocrevus. Most do just fine and even I do now that we know how to prevent all the bells and whistles going off! Wishing you the best. PPS xx