Last reply 4 months ago
Ocrelizumab – no historicsl data

Hi guys,

I’m due to start Ocrelizumab early Feb. I’ve been thinking the last week or so that there’s hardly any data on it as it’s so new. Just 1 years worth from America. I did exactlty what my consultant told me not to do and googled it. Is anyone else reluctant about taling something that’s got kuch historical data?

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stumbler
4 months ago

@hels , you may be interested in @dominics ‘ rationale for ocrevus :-

https://shift.ms/forums/topic/ocrevus-friday-if-all-goes-to-plan


hels
4 months ago

@stumbler thanks for that, just read it through.

I’ve read links to breast cancer. I didn’t want to write that in the header incase I scared anyone. Really don’t know what to do. My gut is satung wait a year or 2.


hels
4 months ago

@stumble please excuse me spelling mistakes! My fingers seem to be fat today 😂


hels
4 months ago

@stumbler please excuse my spelling mistakes! My fingers seem to be fat today 😂


stumbler
4 months ago

@hels, don’t worry about the occasional typo – occupational hazard.

It is difficult weighing up the risks. We seem to be damned if we do and damned if we don’t.

But, MS is totally unpredictable, whereas risk of breast cancer can be monitored. If I can give you a hand with that, let me know. 😎😉


dominics
4 months ago

@hels When you say 1y of data you are referring to post launch. In order to get a license there has been extensive clinical testing over 10y starting from the molecule isolation in the lab. Then the first testing is for safety, even before they get to efficacy.

Google the Ocrelizumab trials, how many patients, in what centres, any adverse events etc.

Yesterday I was talking to the chief neurologist in the MoD, we came onto Ocrelizumab (I am taking the second half of my first infusion this coming Monday) and he remarked on how well tolerated it is. His main clinical interest is MS drug research. I am pretty sure he knows what he is on about 😉

It is probably the most efficacious medication out there (barring HCST). Personally, I feel incredibly fortunate to get it. If it has been arranged for you I’d leap at it in my humble non-medical view.

Best

Dominic


mlgilber1
4 months ago

I was a little nervous to start it, but that’s with any DMT. Now I’m thankful I did. I’m doing so much better ever since my two half infusions in October.


hels
4 months ago

@dominics

I came across this when I googled trials. This is what’s started me thinking. Scroll down to the Neoplasms section.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5952271/

I am very impressed with what I read about the drug. I truly understand how marvellous this is for the MS world. However I was told by my MS department not to google it, just use the MS society website and the MS trust website, which makes me feel slightly cautious about it now. Why be told not to look anywhere else?


dominics
4 months ago

@hels – I suspect they made the suggestion they did because the use of language is so particular it needs certain experience to interpret it. You’re not stupid and they are not trying to deceive you.

When it says
>>
Although incidence rates of malignancies and breast cancer observed in patients with MS who were treated with ocrelizumab remain within the range of epidemiological background data, this imbalance of breast cancer cases in the ocrelizumab group will be better characterized with longer follow-up monitoring.<

It sounds much worse than it is. There is no mention of the rate of development of neoplasms (growths, not cancerous) in relation to the ordinary rate in the population. No mention is made of patient history. Were they smokers previously, are they overweight, a family predisposition to breast cancer (genetic)? All that is being said there is that, in the trial, this was observed. The final remark about future monitoring is them saying that they don’t know if this is a thing to do with the drug or not.

If 2 people got hit by red bises that would make it in with exactly the same caveat about red buses.

Statistically you almost 7ndoibtedly engage in activities that carry a higher risk of death or horrible injury. The main one for most is car travel. Go look at the stats for death and injury for vehicle type, 4oad type, miles travelled, front or rear seat passenger, driver qualification, time of day, weather etc. You’ll be freaked out and only be chauffeured in the rear seat of a Range Rover driven by Police Class 1 trained drivers.

Natural to be worried about this. Context is everything.

I’m off to bed.

Best,

Dominic


mlgilber1
4 months ago

My neuro told me there isn’t evidence that directly links breast cancer and Ocrevus. If you look it up and my neuro said the same thing, the risk isn’t greater than it would be for the general population.


mamawals
4 months ago

I’m a bit paranoid and I agree so it’s a newer drug and for that reason not as much is known about effectiveness and side effects. When they’re doing studies before launch they have a lot of control over who they let in the studies. Once it’s launched for several years I think that’s when you really see what’s going on.


hels
4 months ago

@dominics thanks for taking the time to read my link and reply, greatly appreciated! It’s helped put it in to perspective

@mlgilber1 thanks for passing that info. It’s always useful to hear what other neuros have said


Anonymous
4 months ago

I have primary progressive MS and know absolutely nobody else who has it. So, I have to take my doctor’s word for most everything. In February I am due for my next infusion. I have already had my first dual-dose as well as one other. So I have been doing this for a year now. Since there is nothing else available for PPMS, my only other choice is no treatment at all. My neurologist says that my labs are showing that Ocrevus is stalling my progression. I don’t know what it looks like to progress, so again – I’m taking his word for it. I know that I can still walk and do most everything that I have always done. I do get fatigued and have to rest more often but that’s the only real complaint that I have. The people I know who have RRMS have told me that they think that I’m doing well. Ocrevus is new, but I want to postpone the wheelchair as long as I can. So, I’m trying it. If nobody tries it, there will never be any historical data available. I guess that I’m OK with being a guinea pig at this point.


dominics
4 months ago

Dear @mamawals, what you say about the post trial usage criteria is incorrect. Both in the US and the UK.

The neurologist (and team) make an individual assessment of each patient, their disease, history, progression etc. If anything it is safer to take now. When you read about the enhancements to the administration protocols post-trial that alone ought to be a useful indicator.

Drugs like these simply cannot be prescribed willy-nilly.

The incidence where what you describe happens can be when the drug is available over the counter without restriction. Aspirin, paracetamol, ibuprofen, ranitidine, sildefinil etc. These are only available without prescription after years of safe clinical use.

There is no safety benefit whatsoever to waiting for it.


donavan
4 months ago

Good eveneing. Reading ocrevus discussions. To all who is in 1st world countries. Having access to ocrevus is a blessing. During my treatment discussion my first request was for ocrevus since i read a loy on it, and to my dissapointment its not present in south africa for the next 3 years. Our options in 3rd world countries are limited and we dont have the NHS here. There is around 500 000 MSers in South Affica, mostly misdiagnosed. To put it in perspective, highly effective treatment to your disposal is a luxury others might not have. When i mentioned ocrevus to my neuro, his face lit up i thought he hit the jackpot, because he was so impressed by the drug. So if you get ocrevus presented to you, TAKE IT. Please keep the ocrevus treatment posted to see how it goes.


dominics
4 months ago

@donavan Very well said.


hels
4 months ago

@donavan Thank you for perspective. We truly are blessed to be under the NHS here in Britain, I thank my lucky stars I’m in the UK.

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