Last reply 10 months ago
Sharing opinion on Ocrevus and PPMS…

For various privacy reasons, not just my own, I won’t go into much detail to protect the innocent….. but I strongly felt this was worth sharing….

I met a prominent Haematologist (probably understatement) who is one the leaders in HSCT treatment in the UK, we spoke about HSCT obviously as well as alternative treatments.

The conclusion after the discussion was the following with respect to alternatives to HSCT if you are PPMS…….. Ocrevus has been around for a long time (20 yrs) in the form of Rituxan…. however the patent on Rituxan expires soon… so que Ocrevus…. in terms of efficacy, the view I received was little or no difference….. in essence this was a big pharma monetary spin….

I did google this and found out some interesting differences between the drugs, but in terms of efficacy, jury is out… I have to be honest, this was the first tangible time, I really felt sceptical about the pharma… hearing from this individual; its worth adding the respective conversation and opinions in no way served their own purposes, it was slightly out of context in fact…..

Its worth pointing out, the conversation started out with the respective individual asking in a balanced manner, whether we had we done our R&D on Ocrevus vs HSCT and why we were not considering Ocrevus…. when cornered with the R&D we had conducted…. their view was more honest/transparent….

The message was if you are PPMS your choices are Ocrevus or HSCT … its not even a comparison…. HSCT is really the choice, even when risks are considered…..

Like all DMDs, they may delay the pattern or course of events….. but long term outcomes are always the same, SPMS in 16-18 yrs…. e.g. you might have no relapses for 1-12 yrs but when they come, it might be regular or like freight train, resulting the same long-term outcome…

However HSCT, will halt for 3-8 yrs….. be your own judge, but know the facts and data.

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10 months ago

@seanachai its actually pretty well documented why roche stopped the rituximab trial for MS. Its unfortunate but I dont think its a conspiracy. In their shoes would you be willing to spend the millions it would take to finish the trial knowing you will never make the money back? Ocrevus is similar but the main advantage is that for Rituximab for some portion of people after a few years you are no longer as effective with the drug. Because Ocrevus is not chimeric it doesnt have the same problem. So in the end its a question of are you in the camp that end up getting Rituximab a few years out and not getting any value from it.

While I dont fault pharma for not seeing Rituximab through why arent more independent groups finishing the research? Sweden is a country that uses it widely with very effective results, so I guess the trial probably doesnt need to be done since there is enough real world data.

10 months ago

The main point is that Ocrevus is being held up as a beacon for folks with PPMS, when in fact Rituximab has been around for 20+ years and has almost the same result. IMHO the efficacy for PPMS for both is pretty poor when compared to HSCT. Its not about conspiracy, it is just another example of money making machine that phara is…

Whilst Rituximab is chimeric, in trials comparing the two, it hasn’t shown to be any significant differences in the short-term at least. Like you said, Sweden have been using it for a long time to positive effect.

Like all DMDs, both Ocrevus and Rituximab have side effects.

10 months ago

@seanchai thanks for that, I’ll be a bit more blunt and less eloquent. Cos that’s how I roll these days.

I got told by an equally eminent neurologist in the Walton centre, off the record that ‘all the dmds are dirty and toxic – steer clear of all the dirty drugs”

I’m spms, after 20years of a good life post diagnosis – what’s so bad about letting nature take its course and managing and adapting, instead of compromising the best years of life with toxic drugs, when spms stage is a certainty, until they find a cure?

I am incandescent about how these drugs are repackaged and remarketed, and now even for children; when pharma know they are rubbish and that the key is really more r&d on hsct, remylination and an actual cure.

It also annoys me that people peddle the fallacy that’s the dmds have come a long way, that we must trust the pharmas etc

No, the young ones should be motivated to challenge the medical world, and be pushing for a cure.

Hope u are faring well and wishing everyone the best of health and happiness.

10 months ago

I know that anti-CD-20 drug Ocrevus (ocrelizumab) is only a less immunogenic version of Rituxan/Mabthera (rituximab).

HSCT scares me though :/ Why isn’t there an FDA or EMA-approved guidance on stem cell transplants if it has supposedly proven to be effective in stopping the disease progression? Can we expect an approval sometime soon?

10 months ago

I disagree with your summary of the evidence regarding the use of HSCT in people with PPMS.

The above reference is one of the largest cohorts reported for HSCT in MS. The trial reports that within 5 years ALL people included in the trial with PPMS had further progression. The authors conclude that the effect of HSCT in PPMS is at best modest. I can find no evidence which convincingly suggests HSCT is better than Ocrevus in PPMS.

I also disagree that any haematologist would present an unbiased view. Their knowledge is biased towards their own specialist area (ie. HSCT) and I suspect you were paying for his time.

10 months ago

@littlebopeep, you disagree ? with what exactly ?

“The trial reports that within 5 years ALL people included in the trial with PPMS had further progression.” – can you elaborate and cite how you have reached this conclusion ?

I respectfully suggest you read all HSCT trail data, or better if you can, speak to leading Neuros and Haematologists involved “actively” in HSCT today with PPMS. Its worth noting some of the medical folk in that paper have also backed up the numbers for PPMS subject to the criteria laid down for successful outcome.

I have yet to meet a Neuro/Haematologist involved actively now in HSCT who does not cite 60/70% for PPMS which aligns with data I have seen. Its important to note the specific PPMS criteria involved – less than 5 yrs since MS diag, MS, EDSS less than 6.5, health, age <40 etc etc. As soon as these numbers all increase the chance of success tapers off accordingly..

Also comparing DMD and HSCT is an apples and oranges comparison. Show me a DMD that can HALT MS, no activity? just because a DMD reduces relapses does mean MS is not active. I respectfully suggest you conduct more research on MS and DMDs in general; they don’t halt MS, they do play a part in the journey/ pattern towards SPMS (if RRMS) and the pattern of PPMS in general; however they do not change the long-term outcome, currently i.e. everyone arrives at the MS terminus at more or less the same time, no matter what DMD bus or non DMD bus you took to get there.

With respect to Ocrevus and PPMS specifically, you have a 25% change of success with Ocrevus on PPMS IF and only IF it works for you…these are important points to understand when reading medical statistics…. it doesn’t mean you have have a 25% chance once you take it, it means if it works for you, you have a 25% chance of success. To put that in to context, if the drug works for you and you would ordinarily have been on a cane in 4 years, you now have a chance of not being on the cane in 5 years. But as data shows in 16-18 yrs with or without DMD (inc Ocrevus) you will be SPMS if RRMS or similar if PPMS. This is different to having MS halted for a number of years, no activity….

10 months ago

Was diagnosed when I was 17
Now I’m 31
I’ve never accepted torturimg myself with dmd’s
They never made any sense why eould gylinea put my life in risk
Tecfifers tysabti cause brain infection
Thry were supposed to make the opposit
Im a simple girl but my life is great
Cant accept to ruin my mood with rubbidh dmd’s as its been said

10 months ago

My opinion there is no need to take any sort of immune suppressor
Im looking at me right now healthy skin heart stomach heart ect
The only thing got ruined is the brain
Something must of been wrong reached our brain bad enough to drive our immune system go mental against it
The mistake is in the nerves
They must do more research about that
These are words

10 months ago

I’ve never accepted to be a trial
Altho dnd’s are freein my country Saudi Arabia but I was aware that 1 interferron injection. Costs 3000 Riyals
Why so pricy if all these DMD’s are all about money as main goal and still cant stop relapses
My MS has been quiet friendly 1 relapse a year or several years
So why dmd’s. whats meant to be the eye will see.. sorry for multiple replies but i loved your topic and i strongly agree with it

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