Undecided about treatment - Is Aubagio good?
Hello everybody, just found out about this site and very relieved it exists. So, I will begin by saying that I’m 20 and I was diagnosed with RRMS November last year. My neurologist decided to put me on Tecfidera. Unfortunately, I couldn’t cope with the side effects (burning stomach). However, my MS nurses wanted me to push through it and start it again, but this time with omeprazole. Well… it didn’t work, and now they want me on Aubagio.
To be honest, this has really annoyed me because from the start I have been requesting that I be put on Ocrevus but they keep denying it me, saying it’s “too toxic”, that my MS is “too mild” and that they only give it to older patients or those that are “really bad”. Please guys, help me decide what to do… the reason I wanted Ocrevus is because of the studies saying you should treat MS aggressively from the get go. My neurologist also specialises in Alzheimer’s and once told me that I couldn’t have cognitive problems because only old people with MS have those!! I’m so angry and upset.
Ditch that neurologist right away. He's an *ss.
That doesn't sound like a great experience. I initially had a neurologist who I didn't feel confident with and who offered no treatment (in spite of active disease and multiple brain and spinal lesions) so I asked my GP to refer me to The National Hospital for Neurology in London. I'm now on Ofatumumab which is similar to Ocrevus and have been much more confident in my care. You have a right to a choice where you're treated under the NHS and all the GP usually has to do is fill in a form. It would meet waiting for another appointment though, I suspect. Personally, I'd want a neurologist who was just an MS specialist. I was keen to be treated at a specialist centre too. The NHS England guidance sets out an algorithm here about which treatments are for which type of MS and what the criteria are: https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2019/03/Treatment-Algorithm-for-Multiple-Sclerosis-Disease-Modifying-Therapies-08-03-2019-1.pdf It's a long and complex document but the algorithms from page 8 are useful. It all depends on number of relapses or whether your lesions fulfil the criteria for diagnosis of MS. You're right about recent studies suggesting that treating aggressively from the start may be the better option. Hope that helps. You sound well informed and proactive and it's a shame that you feel fobbed off.