Ocrelizumab (Ocrevus) not the answer in PPMS - far from it.

Discuss Ocrelizumab, a monoclonal antibody treatment for MS.
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Re: Ocrelizumab (Ocrevus) not the answer in PPMS - far from

Post by centenarian100 » Wed Jun 08, 2016 6:59 pm

CureOrBust wrote:You appear to have confused PPMS (Primary Progressive) with SPMS (Secondary progressive). In PPMS you have no relapses, but SPMS you still have relapses. see NHE's post above.
Primary progressive multiple sclerosis just means that the onset is a slow progression without a prior history of relapsing multiple sclerosis before the onset of progression. People with PPMS can still have relapses and make active lesions sometimes. "progression" is simply a clinical term. Secondary progressive multiple sclerosis is a slow progression of symptoms with a history of relapsing multiple sclerosis prior to the onset of progression. Hence, the progression is "secondary" to a history of relapsing multiple sclerosis. Both primary and secondary progressive multiple sclerosis can have relapses and new MRI lesions. This varies from person to person. However, as people get older and have a longer history of progression, they are less likely to have relapses, gad+ lesions on MRI, and new or enlarging T2 lesions on MRI.

It is relatively rare for people with multiple sclerosis in their 70s and 80s to have distinct clinical relapses. Although, people can have fluctuations in symptoms which are perceived as being "relapses" (pseudorelapses). Of course, there are always exceptions to what is typical.

The overwhelming evidence suggests that PPMS and SPMS are the same disease. The lesions are similar in appearance, and on 7T MRI, the lesions often have a central venule in both conditions. Both people with SPMS and PPMS have an 85-90% probability of having >1 oligoclonal band unique to cerebrospinal fluid on spinal tap. The average rate of progression varies widely from person to person, but it is similar on average in both SPMS and PPMS. SPMS and PPMS also have a similar average age of onset of progression (though people with SPMS may have had relapsing disease for many years prior to the onset of progression).

Many experts feel that people with PPMS simply never experienced a clinical relapse but may have had the underlying subclinical pathological condition of multiple sclerosis for many years prior to the onset of clinical progression. Some individuals with RIS (radiologically isolated syndrome) will be stable for many years and then develop PPMS.

My point above is that the distinction between SPMS and PPMS is somewhat arbitrary and should not necessarily influence treatment. If you have progressive multiple sclerosis but have significant relapses and develop many new active lesions on MRI, there may be a role for these medications (if you are willing to risk the side effects). If you are somewhat older, your decline is very slow and insidious, and your MRI scans always look stable despite clear clinical worsening, the benefit of any disease modifying therapy is dubious.

Are you hot or are you not?

I at least appreciate the honesty of Dr. Freedman in stating this. However, I do feel for 1eye because it sounds as though Dr. Freedman may not have the best tact and bedside manner, and I know we have all experienced this. My experience with my husband's neurologists is that they are usually socially awkward.

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Re: Ocrelizumab (Ocrevus) not the answer in PPMS - far from

Post by centenarian100 » Wed Jun 08, 2016 7:08 pm

CureOrBust wrote:You also use the language "have less relapses". Less relapses means you are still having relapses. Most diagrams I have seen and descriptions i have read show that people "progress" (ie move) from RRMS to SPMS to PPMS, as they reduce in frequency of relapses and move to a general decline. As in the diagram above linked by NHE. You will also note that the relapses are less distinct in the above diagram once you move to SPMS. But they are still happening.
I mean "have less relapses" on a statistical average. Some continue to have relapses. Some have absolutely no relapses. There is just a tendency towards fewer relapses on average. You don't move from RRMS to SPMS to PPMS. You can move from RRMS to SPMS but not from RRMS or SPMS to PPMS. By definition, if you have a history of relapsing remitting multiple sclerosis and start progressing, this is call SPMS, not PPMS.

Of course, there is an intermediate subtype call "single attack progressive multiple sclerosis" where someone has a single relapse immediately followed by progression. Some people will call this SPMS, and others will call this PPMS. However, if you have a clear established history of relapsing multiple sclerosis prior to progressing, this is not PPMS. This is SPMS.
The actual definition between the stages of RRMS/SPMS/PPMS (and also PRMS etc etc) is not absolutely defined/agreed/acepted between Neurologuists, and hence I heard that there were PPMS patients in the Ocrelizumab trial who had enhancing lesions, which other neurologists would not consider valid for a PPMS diagnosis.
Semantics aside, I think this is a reasonable criticism. What these detractors are trying to claim is that if you really want to prove that something works in the degenerative aspect of multiple sclerosis, you have to test it in people with stone cold non-relapsing progressive multiple sclerosis with quiet MRI scans. Ocrelizumab/rituximab are extremely effective in preventing Gad+ lesions, but this doesn't matter if you aren't making them anyways.

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Re: Ocrelizumab (Ocrevus) not the answer in PPMS - far from

Post by 1eye » Fri Jun 10, 2016 3:59 pm

I am tempted to recuse myself from MS altogether, because since my CCSVI procedure I have had few relapses and little progression. My problems are much the same as they were in 2005. Some better. Not the holy grail of MS medicine, but not to sneeze at. Not very primary or progressive.

On a happier note, I got an email from the Energy Minister of Nova Scotia today, saying the petition I signed has had an effect, and they will not be using their biomass plant to turn trees into electricity anymore. Voice matter.
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