Do you ever wonder why there’s so little interest, support or even information for those of us with PPMS?
Trials, tests and so called breakthroughs, new drug therapies etc always seem to be restricted to RRMS. A neighbour with MS died (from pneumonia not MS) over thirty years ago believing a cure was just round the corner! Not much progress then.
I’m still not thrilled with this “new” forum
1 Like
It’s not a lack of interest so much as finding a viable treatment is much harder. Even now, the only globally recognised treatment for PPMS (ocrelizumab) offers only a percentage of those taking it an opportunity to merely slow the rate of progression. Unlike RRMS where in some cases the disease mean be stopped (if not cured), PPMS can neither be cured or stopped. RRMS is “easy” by comparison as the treatments target and reduce inflammation but that isn’t possible if there is disease progression without inflammation, as is the case with progressive MS.
Things may improve: there are trials underway where recipients receive higher than standard doses of ocrelizumab, plus trials of several so-called BTK inhibitors (all ending in -brutinib) which operate in a similar way to ocrelizumab but promising reduced side effects. Also the BTKi’s can be taken as a daily tablet rather than by infusion.
1 Like
hi. i’ll get my cure when our good Lord takes me home… or performs a miracle down here
God bless
boudsx
2 Likes
Ok, so it’s too hard to find an effective treatment or cure. I understand that, but it sometimes feels like no one is trying.
That doesn’t explain the lack of support though.
Perhaps if I’d never worked and drunk, smoked or drugged my way to ill health I’d get all the help and support I needed.
Before you point out that addiction is an illness, I know. I spent 11 years married to a man who drank himself to death.
I pay for physio, wheelchairs, care visits, adaptations to my home. No doubt if residential care becomes inevitable the state will snatch my home to pay for it.
I don’t expect everything for nothing, but a bit of support wouldn’t go amiss.
1 Like
I read somewhere that the categories “RRMS” “PPMS” etc. were invented in the first place for the sake of getting funding for clinical trials. They seem to me to be slightly artificial.
The impression is that researchers have targeted RRMS because they think it’s easier to get a drug approved with that patient group. But it does leave a huge gap. And it’s quite hard as a patient, the first thing you read is that MS treatment has been revolutionised since the 80s, and just when you have taken all that in and are up for hitting it all hard, you have to learn that it may not be for you.
Ocreluzimab is also restricted to a subgroup of people with PPMS and I’m not sure what the reason for that is. Why must we wait, untreated, until we reach a level of disability? And why are some people “too disabled” to treat?!
I think it may have been Dr Giovanonni who gave the example of a pianist with PPMS. He’d presumably like to conserve his hand function. Too disabled to treat?
2 Likes
MS has gone through different phases but it does seem as though the medical profession now agrees that MS is one disease.
The numbers speak for themselves: 85-90% of MS cases are of the RR- variety and it is the “easiest” to treat as the DMT’s centre around targeted reduction of inflammation, to bring the symptoms under control if not actually cure the disease. In some RRMS people the DMT’s work so well that it can prevent relapses indefinitely; or almost.
Progressive MS is altogether more complicated. It is wrong to suggest that scientists are “not interested” in it, it’s just so much harder to treat. The disease may be the same but the mechanism of disease progression appears different to RR, as progression does not reply on inflammation.
The extreme of progressive MS is when the patient’s symptoms are clearly worsening but repeated MRI’s show up NEIDA (no evident inflammatory disease activity) - “smouldering” in ProfG-speak. I should know: in the 2+ years since diagnosis, my MRI’s suggest no progression and I’ve been ineligible for any meds. In its wisdom, UK NHS - in the form of NICE - has licensed ocrelizumab for PPMS but only for cases where focal lesion inflammation is evident (on MRI). As such, I’ve spent 2+ years in the cold whereas if you talk to Doctors in USA, they routinely offer ocrelizumab to NEIDA patients and say in a matter of fact way that “of course, there are lots of Progressive MS patients who show no activity”. All about money?
I’m fortunate in that I’ve joined a clinical trial where the meds are being provide by Hoffman-La Roche, the pharmaceutical company, not the NHS. Might be worth seeing if you can join a trial?
Thank you@Leonora. Very well put. I’m probably too disabled now to qualify for anything. Certainly anything I’ve researched I’ve not been eligible
1 Like
GCCK, what’s the trial called? I’d be interested in joining if I do end up with PPMS (not clear yet).
I think some of us suspect that RRMS gets the limelight because it’s the majority of cases and the typical patient is a young woman, in the bloom of youth, in whom MS will be labelled “tragic” a la Jacqueline du Pre. But perhaps that’s my cynicism…
Very interesting to hear that in the US they just get on with ocreluzimab. I wonder what happens in the rest of Europe.
As for NEIDA - there might be no evidence of new inflammation, but what about things like brain atrophy? If they bothered to measure, perhaps they’d find evidence. Clearly something is going wrong, or we wouldn’t have symptoms…
1 Like
When you’re sure what sort of MS you have, have a look on the clinicaltrials site. It’s a US-based site but studies tend to be global. Ideally look for a phase 3 trial. Ideally talk to your MS Consultant / Nurses about suitability and they might make intros for you.
1 Like
Thanks, will do. For my sins, I also have ulcerative colitis, so they may not want me. If you have PPMS and UC, I think there really is no treatment, whatsover… I just hope I have RRMS. It’s hard to feel completely powerless as you sit by and wait for your brain to disintegrate.
1 Like
Way back 2007 ish PPMS was called ‘the Cinderella disease’. How many times was I told in ten years they will have some help for us poor ba**ards. Will I get away with that? I go from frustrated to damned angry (fit whatever word you like for damned). it’s our ‘guts’ well if that needs changing get some of us (volunteers, guinea pigs), nothing that can do much harm. Change the biome, get more than a few (your usual rubbish number) try thousands of us. Add live yogurt, kerfit … give us a choice of diet. Don’t kill us but CHANGE DO something
1 Like
Great common sense Leonora, see my previous post ref biome. Let us in great numbers try certain diets!
Change the gut biome M
I was diagnosed in 2006, and told very bluntly there was no cure and no treatment, something my neurologist reminds me at every annual review.
Around the same time I joined an MS Society forum which preceded this one, when someone predicted that stem cell treatment would be available in five years! He wasn’t very happy with me when I didn’t share his optimism, because he thought his opinion gave people hope. A forlorn hope as it turned out. I’d settle for something to help even a little bit.
1 Like
I was told by a neurologist (2007) learn to learn to ‘grin and bare it’ has anything changed?
At least we have each other. M x
1 Like
Cynical? what a club we are part of -
*cynical, misanthropic, pessimistic mean deeply distrustful . cynical implies having a sneering disbelief in sincerity or integrity. cynical about politicians’ motives. misanthropic suggests a rooted distrust and dislike of human beings and their society. Did you chose the right word?
Too expensive and no point to MRI us? Thank God we have each other . otherwise I could be more depressed. M x
1 Like
in no way is rrms easy there are people who are severley disabled by it
ms is not fatal
Hi, I’m replying to this as someone with SPMS, so I apologise if I shouldn’t. But you’re talking about nothing except maybe 1 for PPMS, which is shocking, but there’s nothing for me either, I don’t have relapses, so can’t get any DMT’s, I’m just progressing and having to deal with it myself, which is hard for me and my hubby, who’s my full time carer, I’m in a wheelchair full time, have bladder and bowel issues, high levels of fatigue and suffer with chronic nerve pain, so all in all pretty rubbish, what defines SP and PP ?
Jean x
1 Like
Hello Jean. No doubt someone can enlighten us as to the difference between SP and PP but as I see it the reality is that there’s no difference for those of living with it.
1 Like