Hi there, I’m just looking for input on how your first infusion with Briumvi went. I’m 32f and was just diagnosed last month after losing vision in my left eye. And terrified
Hi there Aireyell and welcome to the Forum. This Forum is not as busy as it used to be but fellow MSers (there’s no such word but we get used to it ), others with MS pop in here to ask or answer many questions. There is no daft question about MS so any concerns you have, just type them onto the Forum and someone will help.
I was diagnosed with Primary Progressive Multiple Sclerosis (PPMS) in 2011. So I never have any remission or a relapse, just continual damage and lots of varied symptoms. There are no dmd’s yet so I use symptom management with help from my MS Nurse. I wear pain killing Morphine Patches each day for a week then change to a fresh patch, plus daily meds to control more symptoms.
So I know very little about Briumy or other DMD’s for RRMS and unfortunately I can’t advise about the actual medication.
I do understand how it feels to be diagnosed with M.S. and how terrifying it can be. Hearing this, that and the other is confusing and we tend to put any negative opinions to the top of our “Terrified” title.
It’s scary for you, so young and suddenly discovering the consequences of RRMS. Regrettably there are still no meds to cure or stop any type of MS and it’s natural to worry. Your MS nurse should be able to reassure you about this drug. I’ve read it was created solely to modify RRMS. That fact alone is reassurance because it’s specifically for your own M.S.
I wish you well and hope another Forum user has Briumvi and able to help you.
Meanwhile, good luck hon.
Chrissie
Seems to be fairly new kid on the block but similar to other infusions. This may explain why there has been no response.
I have only been on DMTs in tablet form. I have been lucky with minimal problems.
We are warned about possible side effects and then tend to look for them. Difficult to remain positive and hope for the best (but prepare for the worst). Good thing about infusions in some centres is you get to meet other people with MS and know you are not alone.
I’m also patiently waiting to start Briumvi. I’m going to be the first person in my health board (Aneurin Bevan).
I was given my official diagnosis back in March after having optic neuritis in my right eye last year. I had to wait for another MRI which meant I only signed the consent forms mid June. I spoke to my MS nurse last week who said the medication is finally in stock, they’re just waiting for the drugs chart to be written up and hopefully I’ll be starting it in August.
I’m a bit apprehensive about how it’ll affect me but trying to think positively about how effective it is in treating MS
you got this!!