Is there a way to prevent SPMS?

miapi 14/04/18

Last reply 6 months ago

From what I’ve understand dmts cut down mainly on relapses -some on disability accumulation-, but none can prevent the onset of SPMS. Have I gotten this right?

Is there any hope on that regard?

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grandma

6 months ago

Hopefully there is now, when I was dxd 25 years ago there was no choice, soI was told the rrms would become 2ndp in 10-15 years, it took 23 so I’m not complaining but things have moved in leaps and bounds since then and so much has happened and so many things have changed, but each of us is so different and one size doesn’t fit all!

peterfrancis

6 months ago

I was diagnosed with Rapid SPMS late last year, seemingly bypassing the RRMS stage, although judging by my MRI Scan they believe I have had MS for several years unknowingly confusing the symptoms with Diabetes issues such as Hypos etc.

As far as I’m aware any Drugs/Treatments you are on are meant to delay/prolong the onset of SPMS/PPMS. I guess that it’s a case of trial and error, see what works and doesn’t work.

nutshell88

6 months ago

Thats worrying actually.
I have no answer to your question unfortunately.
But I hope someone answer me thus. Is MS meant turn to SPMS for all people.
I’m still living in my comfortable puzzle not sure where I stand.
Relapses never accured to me since over 3 years I was daignosed in 2005 and MRI showed atrophy and it keeps progressing negatively.
So do you think all people develope SPMS.
Specialy that as in my lazy complicated case I’m off treatments all my life except 2010. I dont suffer disability yet.

mmhhpp

6 months ago

@miapi

Hi I know how you feel….I am also type of person that likes clear answers, unfortunately in msyou wont see many….I guess people react so differently and it is so hard to predict how disease will progress… some are totally disable in few years some are not.

Personally i can say i havenot seen anywhere in 7 yrs anything that can stop spms, I think spms is always there. The best we can do Is medicating for relapses and hope we delay spms. I was on fingolimod for years , sure it did stop relapsesbut spms came hard and fast.

Does anybody develop spms? I think yes but different speeds .

Yo wont find a clear answer please tell me if you do….

miapi

6 months ago

@mhhpp
Thank you for your answer.
As far as I understand SPMS is linked to a couple of factors, and age seems to be one of them.

May I ask what SPMS means? (I know what it means, but I am asking more from a personal perspective.) Is it the case that each day you become more disabled? Or it can also be stable for a while?

Best
MiaPi

stumbler

6 months ago

@miapi , there’s a discussion on this subject here :-

http://multiple-sclerosis-research.blogspot.com/2014/06/do-dmts-delay-onset-of-secondary.html

miapi

6 months ago

@stumbler Thank you for the link.
In general it all seems to boil down to ‘go on highly effective DMTs if you want to have a chance’ -something that I am not able to do at the moment.

I also don’t know if I want this to change or not, as these treatments do scare me quite a lot (especially PML, which apparently from what I read is possible with all of these treatments). On the other hand, thinking that my (non-disabled) life might end around 40 is also pretty scary.

Does SPMS = bad stuff, or is it possible to live well with it?

I have so many questions, and the drs can be very vague when trying to provide answers.

mmhhpp

6 months ago

@miapi

Spms is bad, really bad. My rrms face was a honey moon.

In my case in two years i have been from walking with a rollator to be unable to walk, or stand, carer coming 3 times a day…. Continuous rapid decline…..the”best” doctors did is stopping fingolimod, i suffer now rebound effect again, i did go through this in the past, thanks to them i now lost my hearing in one ear, double vision returned, …… despite spinal tap showing inflammation is still there, mri no active lessions…for doctors 1 month wait is nothing for me is a life change. I lost my faith in them all

Waiting now for cladribine but lymphocites are not 1 yet…..Desperate…i was even denied stem cells last year when I could still when that was my last chace……

You don’t want to be here…….

miapi

6 months ago

@mmhhpp

I am so sorry to hear about your issues. It does sound tough, and I hope that you have love and support around you.

Is there anything that helps?

Is there any medication approved for SPMS?

Would you have any advice as someone who has been both through RRMS and SPMS?

mmhhpp

6 months ago

@miapi

Early days cladribine may do sth. ….. no other for spms at the moment.

Hstc not clear yet for spms i think

If someone knows about something please let us know

mmhhpp

6 months ago

Siponimod might be another one but i my opinion not big positive effects
@miapi

stumbler

6 months ago

@miapi , you’re right, Doctors are vague, because MS is so unpredictable.

I thought Secondary Progressive MS (SPMS) would mean an end to the relapsing/remitting rollercoaser of relapses and recoveries. But, now I’m reading about SPMS with relapses.

The whole picture becomes very hazy.

However, You’re here and now and having to deal with the present. Don’t worry unduly about tomorrow, as the future can take care of itself. Enjoy today. 😉

seanachai

6 months ago

HSCT halts SPMS also.

mmhhpp

6 months ago

@seanachai
Do you have any evidece of that? I am interested.

edgarleroy

6 months ago

SPMS means that your accumulated brain/nerve damage has passed the point where your nervous system can form connections to bypass the affected areas (neural plasticity), leading to disability. This usually happens after you have MS for a while.

Effective drugs will slow down the inflammatory processes leading to this end. Cladribine should especially be good since it is able to safely get into the brain and lymphatic system to kill the lymphocytes as well as being very effective at stopping acute attacks through the blood-brain barrier (relapses).

The earlier and more effectively you treat MS, the less damage occurs.

seanachai

6 months ago

hi @mmhhpp

This is an interesting one as it includes progressive…

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5744858/

There are many others…

I would recommend you join some of the HSCT FB groups which have tons on information.

Like every therapy its not 100% but trail data suggests 70% for progressive; might be slightly better for active SPMS … its pretty hard core, not cheap, criteria in UK very strict… but no other countries, which have been doing for a very long time…

seanachai

6 months ago

Forgot to add, the purposes of therapy is to HALT MS not reduce frequency of relapse so the success outcome measures are different…. people also report recovery, I think mainly on recent symptoms…

vixen

6 months ago

Lordy, I mean it’s late at night, but this discussion is way over my head! What I am picking up though, is that our understanding of parameters for SPMS is subject to change as our knowedge and awareness grows, and evidence changes, right?

mmhhpp

6 months ago

Thanks @edgarleroy
I cannot wait to start cladribine and see if it stops this s…it feels endless all this waiting….

@seanachai
Thanks for the link. I still think is early days fo hstc and spms, it doesn’t seem 100% stop ms procedure…. and even if not it would be difficult in my situation to get into uk hospitals and too expensive otherwise…..

@vixen it seems so……
4am….also late too…

cammo

6 months ago

@miapi
A while ago I asked my Neuro when I would change from RRMS to SPMS and can I expect this in the next 10 – 15 years.

He told me everyone with RRMS is already in SPMS it is just our ability to repair damage and use different neural pathways is better in earlier diagnosis. Especially when younger. As we progress and the damage gets worse your body also gets worse at repairing the damage.

It is frustrating that there are so many unknowns about this disease. Even trained “experts” don’t really know what is going on.

imbarca

6 months ago

@miapi as far as I can work out from reading and talking to neuros, there is no rrms and spsm. These were invented labels to help drug companies show an effect in trials. You can count relapses in short trials but it would take years to show an effect on progression.

In early ms, there’s lots of inflammation and much of the damage is below the surface so, as @cammo says, the damage is happening, we just don’t know. As we get older, our reserve gets used up and we can’t repair so well. They call it SPMS but there’s no magic switch that’s been turned on; it’s the same disease.

In theory, by reducing damage early on in ms, it should delay the age that symptoms worsen and/or slow progression. It’s so hard to test as everyone’s ms is different and no-one knows what they would have been like if they’d made different treatment choices.

To give yourself the best chance you need to be on a treatment that works for you and live a lifestyle that minimises inflammation and maximises repair mechanisms, so low stress, good diet, exercise etc.

miapi

6 months ago

@imbarca @cammo Thanks for your replies.

It does seem logical, this theory.

On another note, I just had an apt with my neurologist today and asked about the stronger treatments. I know this probably requires a new thread, but I wanted to ask your opinion on this matter.

Ok so, I brought this exact argument today on the table, about early inflammation etc.

What she said was: In the future if you get worse you can switch to a stronger treatment, but be ware: these treatments are very new in comparison to the first line medications, and we don’t know what happens in the future to people who take them. More specifically, about Cladribine and Alemtuzumab, she said that for example maybe you are completely fine for 5 years or 10, and then you suddenly get PML, or cancer. She said that the initial trials of Cladribine back in the day actually stopped because of cancer as side effect. Then they re-tested it years later and it was fine, but not on a longitudinal level..
So.. she s all about the watch and wait method.

She also brought up the Tysabri example, and the fact that a bunch of people had to actually die before we figure out about the JC virus levels rigorous testing. Sort of implying that ‘you can go ahead and be a guinea pig if you want to’.

Could I ask any of you who have taken Alemtuzumab or Cladribine about whether you were ever warned about this scenario? (Fine for years and then a random serious side effect strikes out of nowhere?)

I am not trying to be negative or scare anyone. Just trying to get some understanding of this..

Thank you beforehand.

stumbler

6 months ago

@miapi , it’s frustrating to hear the conservative views of some neurologists. It’s not them risking a relapse that could potentially disable them for life!

Yes, there are risks, just as there are in everyday life. That’s why we look each way before we cross the road. It’s our prerogative to weigh up the risk of adopting a therapy that has a better future for our health against something that isn’t as efficient.

We also need to be aware of misinformation. Alemtuzumab , in its previous incarnation as Campath, a treatment for leukaemia, is now approaching its 40th birthday.

It does need to be your choice.

miapi

6 months ago

@stumbler
That’s exactly what I am in search for: valid and (as much as possible of course) unbiased information.

Everyone has their own reasons to behave in a certain way, I understand that. But as a patient, I deserve to feel that I am in good hands.

My neurologist literally said ‘I will prescribe to you anything you want if things change, I don’t mind. It’s your choice’

Do you know what this sounds like to me?

‘I don’t want to get too involved, I wash my hands’

I asked her: which drug could we then switch to in the future? Just to have an idea. And she said ‘maybe an interferon’ : |

‘I can also give you Cladribine if you really want to, but you are responsible for the risks’

How am I supposed to feel hearing that?

It’s great that she is open for the future of course, but this kind of attitude made me feel sort of alone in this. And not very reassured I must say.

In any case, thank you to all of you being here. Sounds silly, but to me it is a relief to be able to express these thoughts.

edgarleroy

6 months ago

From the Barts group in London that has done a lot of clinical work with cladribine:

“Cladribine is as safe as any DMT:

In comparison to highly active MS drugs, it is notably safer!

Cladribine does not cause secondary autoimmunities like Alemtuzimab or Daclizumab, which may occur in up to 50% of people.

Cladribine has not been shown to cause PML, unlike fingolimod, Dimethyl fumarate or anti-CD20 and notably natalizumab, where there is up to greater than 1 in 100 chance of this developing. Mitoxantrone has a 1 in 25 risk of causing leukaemia.

But the cancer risk…?

We have undertaken a meta-analysis of all pivotal trials and found that the occurrence of cancer is no higher on Cladribine than any other drug. What was unusual about the CLARITY trial is that there were no malignancies in the placebo arm, but three in the drug-treated arms. In subsequent studies of Cladribine the lack of a cancer signal was confirmed in ORACLE MS (see above) and the ONWARD study. Nevertheless, the MHRA (the regulatory equivalent of the EMA/FDA in the UK) informed us that another trial, and then post-marketing surveillance, would be required to convince them to award Cladribine a license. That was in 2013, so may be their views have changed since Alemtuzumab has been licensed in the meantime despite significant safety issues?”

Here’s the link for the above quote: http://multiple-sclerosis-research.blogspot.com/2015/10/suppose-there-is-therapy-for-ms-that-is.html
Since that was written, Mavenclad has been approved to treat MS in Canada, Europe & a few other countries.

While nothing is guaranteed, cladribine should be safer than the other higher efficacy treatments. Infection risk and lymphopenia should be watched for by your medical team. When I took cladribine starting in 2016, I took antivirals to prevent infection & adjusted the amount dosed to prevent lymphopenia.

miapi

6 months ago

Thank you for your reply @edgarleroy.

Were you warned about any potential increase of cancer risk when you took Cladribine?

Regarding PML: http://multiple-sclerosis-research.blogspot.com/2017/12/pml-warning-on-cladribine-by-mhra-has.html?m=1

So it does seem possible actually.

Also, I saw you are SPMS. Did you take Cladribine before or after turning? And may I ask how are you doing now (2 years later after Cladribine)?

stumbler

6 months ago

@miapi , your Neuro is correct to be reticent about Cladribine, at the present time.

It has yet to be approved by NICE, so the present use is “off-label”. Your Neuro may ask you to sign a disclaimer to obtain this DMT at the present time.

edgarleroy

6 months ago

I was aware of the cancer risk. Since it’s off-label here in US, I had to convince my neuro to prescribe it, so it was on me to decide. As with all things drug related, the dose makes the toxicity. As a blood cancer treatment, cladribine is given in much higher doses than for MS, greatly depleting the immune system cells. At the lower MS doses, the risk is much lower for cancer and PML. The T-cells are still around to monitor the brain for JC virus.

My MS is quite advanced, started in 1985 when much less was known. So far, so good in slowing things down. Wish I could have tried this back then.

seanachai

6 months ago

hi @mmhhpp

70-80% chance to halt MS, you won’t get anything remotely close to that with any other treatment, so not sure I would agree HSCT has a “long” way to go. The numbers are higher still for active RRMS. Keep in mind DMTs only reduce relapse and the stats for SPMS and DMTs are not great.

The results vary depending on disease duration, age, EDSS etc. etc. Obviously the higher all of them are the less effective the therapy is, its the same for all therapies sadly.

mmhhpp

6 months ago

@senechai

If I had RRMS I would go for HSTC unfortunately with SPMS The choices are limited…… when I said a long way to go I meant for SPMS……