Hi
I was on Tysabri for about 6 years, then Ocrecus for about 5 years. I had my last Ocrevus dose last week.
Now I will be monitored with an annual brain MRI. The consultant says any benefits of the Ocrevus are outweighed by health risks of being on it and associated immune response. They talked about immunosenescence - the ageing of the immune response - demonstrated in blood test results.
So going forward, once the effect of this latest Ocrevus dose has worn off, I will have no effective treatment in my system to modify disease progression.
Do other people have a similar experience?
Should I ask for a second opinion?
Are they trying to save money?
I am 61 years old.
Thank you
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I am a litter older and really feel for you. I can well believe that one’s immune system gets a bit dozy with age, but (like you I guess) I doubt whether my active but currently well-controlled MS has mellowed with age.
If your doctor has not succeeded in convincing you that this is the best option for you, I would seek a further consultation at least, particularly if you feel you didn’t get across all you want, on reflection, to say about your assessment of risks/benefits as the person in the hot seat.
Hi, I haven’t heard of immunosenescence, had to google it! I’m in my 50s, and my neurologist mentioned taking a DMT for 5 years. I don’t know why 5 years, perhaps it’s for the same reason?
I am sure that if it was me I would ask for a lot more information about the risks and also ask for discussion about changing to a different DMT.
I am a 71year old male and have been on Avonex for some 18-19 years. Coincidentally I had a chat with my MS nurse about ‘ continuing’ with a DMT when I saw her for routine session about 2 months ago. The general advice from her was ‘ keep taking the Avonex - you can get relapses/ lesions well into older age and the older you get the harder it gets to get over relapses’!
So, yes ask for a discussion and about switching DMTs ( and if that isn’t forthcoming then ask for a written letter from your neurologist to confirm that stopping use of any DMT is definitely your best option - ask for it in writing!
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Hi Alison,
Thank you for your response. I will do this.
All best,
Judy
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Hi
I was on Tysabri for around 5 years, then Ocrevus for about 4. Would likw to consider other options rather than no DMDs
Thank you, Hank. I do have it in writing, but want to challenge them on it.
How well did Tysabri work for you are why did you switch to ocrevus, did you become JCV positive, maybe get a second neurologist opinion , but l agree you should stay on some DMT rather then none
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Hi
Thank you for your response.
Both Tysabri and Ocrevus seemed to work fine for me.
The neurologist advised me to switch from T to O because of PML risk, yes, I was JCV positive.
I am going to ask for a second opinion from another hospital.
I am reluctant to be booted off all DMDs - it feels a bit like I am being written off after all these years…
Neurologists’ risk appetite will be affected by the medical literature, relevant guidelines, their own clinical experience, advice from trusted senior colleagues, miracle/horror stories they’ve heard at the bar at conferences in exotic places, the state of their marriage and how their bowels are functioning. In other words, they’re human and they bring to work who they are, whether they mean to or not.
What they don’t know, unless and until we explain it’s very clearly. is what our personal risk appetite is, how good our understanding is of the risks and benefits built into the treatment choices we face. I do think that a very important part of our job as patients is to communicate this clearly. This thing is supposed to be about shared decision-making, and in theory at least, the hospital specialist should want to listen very carefully to what we have to say.
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Particularly about bowel function.
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