Hi,
Just interested to hear people’s experiences of tecfidera and ocrevus, specially which they were offered/decided to take and why?
My initial thoughts after doing my research were ocrevus as I’ve read so many positive things about it. But my neurologist has said no way at the moment, although he did say about himself that he’s one of the more conservative neuros around. He seemed to think I wouldn’t get offered it by anyone at this point though. It seems a bit strange to me as from what I read I can’t really see why it’s considered more risky than tecfidera.
Part of me thinks maybe I should seek a second opinion, but I am so exhausted of this whole process another part of me really can’t face doing that and thinks I should just follow his advice and get going on something. For what it’s worth I do really like him as a doc overall and he was very convincing when he made his case for tecfidera. It’s just that what he said doesn’t seem to match up with what I’ve read about the drugs myself.
Would love to hear others experiences. Thanks in advance xx
Hi, I’ve been taking Tecfidera twice a day with food for past 22 months. I’ve had no side effects at all. Bloods and MRI’s all good. My decision was made on my lifestyle, risk v reward, convenience and of course my neuro’s input.
Thanks so much that’s really helpful to know. Were you offered ocrevus at all as an option? Out of interest why was it your neuro chose tec for you?
We discussed a few different meds, I can’t honestly remember if Ocrevus was one of them as at the time I felt as if my world had just fallen apart. My Neuro didn’t choose them for me but of course I valued his opinion and knowledge. Tecfidera suited me in terms of the reasons mentioned above, it also can cut relapses by up to 50%. For most people the side effects will be no more than flushes or an upset stomach which usually settle. Bloods are taken every 3 months to monitor your lympho count. It’s all pretty straight forward. On my experience thus far I can see why your Neuro would recommend it.
Ok good to know the side effects aren’t always severe. I think I’m just expecting the worst but should probably be more positive about it. Thanks again for your responses xxx
You’re welcome. Good luck. X
Hi Charl84,
Have you looked at the Barts MS Research Blog? there is A LOT of information on there. It becomes slightly addictive so do approach with caution but its the best resource that i have found. They very much advocate hitting MS hard and early with the most effective DMT that is available to us. Ocrevus falls in to this category for a first line treatment. Prof G (who leads the team) talks of some super responders to Techfidera as well. It is hard to give advice as everyone will respond differently but i suppose it is just a case of playing the percentages and weighing up the risks / rewards. I am on ocrevus. The only real side effect that i have experienced is a flare up of symptoms after my first 2 infusions. Apparently this is normal. Otherwise, i havent seen any improvement but have not declined either. I suppose this is as much as we can hope for as neither are a silver bullet. Good luck with whatever one you go with
Thank you - I will definitely check it out. That’s good to know you’ve had a positive experience of ocrevus. At the moment my neuro says I don’t meet the criteria for it but I’m not convinced as my nurse thought I should. I’ll definitely be considering switching to it as/when I can xx
My experience so far with the neurology team is that you have to fight for everything…i had to go private for my first set of scans in order to get a seat at the table. However, the offer to be placed on ocrevus came as a bit of a surprise. I think that it was driven by the fact that i had a spinal lesion, which tend to cause more problems down the line. I’m not an expert but it is considered a first line treatment so it may be that you can build a case with a bit of research. Don’t be afraid to make a nuasance of yourself either. Best of luck
My experience has been similar - a battle every step of the way and I also had to go private in the end. Outrageous really when you think of all the people who don’t have that option. It’s mentally very daunting and draining gearing myself up for yet another round by asking for a second opinion, but it’s what I think I’m going to do as I can’t afford for them to get it wrong if you know what I mean. Thanks again for your comments they’ve been really helpful x