Last reply 6 months ago

Been asked to choose a med to start out of the list the neurologist told me about at my last appointment on Friday, I went for ocrevus, however since researching it on the nice website I’m now terrified or the “c” word! Does anyone have experience? Or advice? 🤞🏼

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6 months ago

@bing15 , here’s a recent press report :-

When it comes to risks, forewarned is forearmed. So, monitoring can mitigate the risk.

6 months ago

Hi @bing15, yes I am researching it too! I have the choice of Ocrevus or Lemtrada, and was leaning towards Ocrevus but the consultant was saying about higher risk of breast cancer, I think because I am 48 and probably going through the menopause. It’s difficult! Thanks for saying about the NICE website, I didn’t think of that. Hopefully you can decide.

6 months ago

Advice- speak to professionals.

Experience – been on since Jan 2019 and for me it was a compete non-event. V close monitoring is part of it.

What happens to individuals cannot be extrapolated to mean it will or won’t happen to you. Rather frustratingly, you have to look at the broader data and have a conversation about risk/reward/utility/ambitions etc with your neuro.

We have MS: we no longer have the luxury of viewing risk associated with drugs through the same lens as ibuprofen or paracetamol.

It is all about deciding what risks you are willing to take versus what is known to happen if MS is left to smoulder away untreated and setting that off against where you are with your life, in your terms. Not mine and no one else’s. Yours.

Bon chance.

6 months ago

Bing15, I simply have no trust in the meds listed, I know certain sufferers will go crazy and some will simply disagree but after a bad spell on one that made me worse and looking at all the negatives to the others I simply improved my diet and started strong CBD oil, now am I fine, well I still have down days and the worsening of my limbs continue but in general I feel great is my monthly blog, just think before your pushed, no one person is the same and MS is a life changer, how, well that is up to you, good luck

6 months ago

I went on copaxone 40 mg three times a week a lot less stressful

6 months ago

@bing15 I’ve had the drug about 3 times and going in May 2019 for my 4th infusion. Just make sure you have no infections before you do it. Good luck and hope you have a great outcome.

6 months ago

Thank you all for your advice and personal experiences

6 months ago

@bing15, I start O on 29th. Can’t say I’m not worried about the increased breast cancer risk. I’ve just turned 50 so will get 3 yearly mammograms as UK standard. I was also concerned as I’ve a low lesion load but my neurologist still felt it was better for me to be treated.

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