ClinicSpeak: managing expectations

What are you expecting ocrelizumab to do for your PPMS? #ClinicSpeak #MSBlog #MSResearch

“In the past I have always warned that we should not expect too much from the first effective DMTs in progressive MS. They are unlikely to be miracle drugs. I therefore would like to prepare you for the ocrelizumab results when they are presented. In other words I want to set realistic expectations.”

“I agree with all the comments from yesterday that the announcement of the positive ocrelizumab in PPMS trial results was great news; probably the best news we have had in a decade or more. However, I would like to remind you of a survey we did on this blog a few years ago (see slideshow below). About 40% of progressive MSers are expecting an effective DMT to improve their functioning or to result in a full recovery; this is unlikely to happen. At best ocrelizumab will stabilise your disease or more likely slow down the rate of disability progression. What this means is that progressive MSers on an effective treatment may not notice much. Getting worse more slowly may be difficult to notice on a background of progression. However, ocrelizumab is a start and will allow us to begin to target different processes in MS with the hope of developing add-on neurorestorative therapies. Innovation tends to be incremental; having an effective anti-inflammatory therapy for progressive MS provides the base of the pyramid; we now need to add the neuroprotective, remyelinative and neurorestorative tiers.”

CoI: Multiple. Please note I do not at this stage know the results of the PPMS ocrelizumab trial.

27 thoughts on “ClinicSpeak: managing expectations”

  1. When someone asked me yesterday whether I thought that Ocrelizumab might lead to improvement in my condition, I said no – it's about slowing or stopping the damage. I have often thought that, if I could just know that my condition won't become any worse due to PPMS, that would be enough for me. I am under no illusions about the fact that I have spinal lesions of 15+ years that are probably covered in scar tissue and can no longer be remyelinated. But just not getting any worse, not losing the abilities and skills I still have would be a dream come true. So do not denigrate Ocrelizumab if this is all it can be proven to do – safely. It would still be a wonder drug, in my opinion.

    1. I think all progressive MSer would benefit from immune inhibition but you dont get it because it is not considered cost effective because it wont deal with all progression. i know i bang on about this but generic cladribine would serve this function it is a b cell depleter. The effect on t cells is less marked than with alemtuzumab.$350-500 a year or £800 a year.If merck brings it back $20,000. unlike antibodies it gets in the brain

    2. "…the announcement of the positive ocrelizumab in PPMS trial results was great news…"But according to MD above, it is actually no announcement at all for people with PPMS. Because the benefit won't be considered dramatic enough. Because it costs too much. I can't hear / read this stuff any more. Off to make a cup of (hopefully neuroprotective) green tea.

    3. You are putting words in my mouth… If the ocreluzimab tiral is positiver and they will have collected the cost effectiveness and they will make a case for cost effectiveness….in the other trials the drugs failed and they could make that argument

    4. I have no idea how much it will cost either, but the fact that Roche have one anti-CD20 for MS and another antibody for Cancer tells me the plan is not to have to do a Genzyme and they will wring as much cash out of MS

    5. Why, yes, things always look better after a cup of tea. And do we actually know that something like Ocrelizumab is not enough to significantly stop progression on its own, without additional neuroprotectives etc.? Perhaps in younger people or people with good general health it will allow the natural repair processes the time and opportunity to function? But I will reserve judgement and meaningless, pointless speculation.

  2. What this drug means for newly diagnosed PPMSers or those with minimal disability is enormous. It will change the way MS in all forms is viewed – hopefully with a less dire prognosis. This will only be the case if it is applied as it should be. EARLY. Not waiting to fail other DMTs & when more damage is accrued. With an expected better safety profile than Alemtuzumab, let's hope neurologists are more prepared & willing to prescribe it early & before other first-line maintenance DMTs.

    1. wouldnt it be funny if rather than charge to most and spend years as a second line and get a slice of the pie they price it at the lower price change and take all the market. Would you spend money on something that is over twice as bad and has to be taken every day/week.This wont happen because although it is a Roche drug biogen gets a slice of the pie. They will not support something that cuts out their revenue on something where they get all the cash like avonex.

  3. Risks on the side, how does the efficicacy of Ocrelizumab compare to current high-efficacy DMT (says Natalizumab)?

  4. Maybe gaining access to this drug (if it does as hoped) is what will finally get the MS community more active in campaigning – I know some campaigning is done already but what is needed are greater numbers and louder voices

    1. Re: "Surely you, Prof G, wii be campaigning this as a drug for an orphan disease?"Ocrelizumab will almost certainly get a license for relapsing-forms of MS therefore it will not need a orphan-designation for PPMS; i.e. the drug will already be out there. The latter is a problem as it spoils the field for any other drugs hoping to enter the space under the orphan-drug umbrella. We have tried once in the past to make the argument that PPMS was an orphan disease; unfortunately, the community didn't buy into to it at that time and are unlikely to now that we have a positive study with a drug that works in both the relapsing and non-relapsing progressive phases of MS. Please note I think PPMS and non-relapsing SPMS are the same disease. I wonder if the regulators will have the same opinion; if not SPMSers will be in limbo – unless the ASCEND (natalizumab) SPMS trial is positive.

    2. At least SPMS has the "advantage" in the MS-Smart trials – which will hopefully come up with something. It's about time PPMS got some scraps from the researchers' table. PPMS usually seems to be left on the shelf.

  5. From an RRMSer, it would be interesting to know how many of that 40% actually expect a cure-like outcome, and how many PPMSers just ticked the box to hold your feet to the fire.

  6. I am possibly in the early stages of PPMS no clear cut diagnosis yet as only spinal lesions and clear LP. Had a little episode of l'hermittes 25 years ago – so possibly SPMS. I would love this drug now as can still walk even with the foot drop. Dont want to wait several years when there is a life raft out there now. I am only 50.

  7. If Orelizumab is a neuroprotective would you not add on an infammatory treatment too based on the pyramid above – and if so which one ?

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