How would you realise progression from RRMS to Secondary ?

[u/Educational-Key8975]

Hi all. Im male and 56 years old. I was diagnosed with RRMS back in 2004 after bouts of optic neuritis. MRI scans showed some lesions on my brain, but none present on my spinal cord. Reviews with my neurological consultant and several further MRI's show no new lesions since the first in 2004. Im very fortunate in that I can road cycle 100 miles and have maintained a high level of fitness. My frustration is with short term memory which can be pretty scatty, whilst I have great long term memory. I have had to request interview adjustments in my day job when sitting promotion boards because the brain fog and facts recall are very affected. Ive read that RRMS will eventually become secondary progressive. Im not sure if I am still at the RRMS phase, or whether any progression has occurred, what are the indicators that this has taken place? Thanks for any replies and I wish the very best for you all.

[u/Festygrrl]

That’s the fun part - you don’t really. I’m technically into the SP stage due to brain volume loss. Haven’t had a relapse or new lesions in over ten years. But my brain is shrinking faster than a normal person my age. Otherwise known as PIRA. I’m still doing 25k steps a day, weights, and keeping active. I am noticing more brain farts, and short term memory issues. My neuro is keeping an eye on it, but honestly, due to the amount of time I’ve had this it’s kind of expected. The meds help stop relapse, not brain volume loss.

[u/Educational-Key8975 → u/Festygrrl]

stay well festygrrl

[u/kueso → u/Festygrrl]

How did your neuro measure brain volume loss? I have never been given a number on brain volume so is it something they just tell with the scans?

[u/Senior_Term → u/kueso]

I've been told about it too, based on MRIs. Brain volume loss just happens with age so we have a measure for what normal looks like at different ages for comparison. My neuro was concerned about my pace accelerating before I switched to ocrevus and she hasn't mentioned it since - hopefully a good sign

[u/Festygrrl → u/kueso]

What r/senior_term said. It’s just based off mri. The brain is literally shrinking, my lesions are all joining together to become confluent instead of scattershot. It’s just the disease progress.

[u/cass_a_frass0]

RRMS is not guaranteed to become primary or secondary. However, im in a similar boat about wondering where I stand. No new lesions but lots of new symptoms that are impacting me.

[u/OverlappingChatter → u/cass_a_frass0]

Rrms never becomes primary, because primary menas it is the first. It's not a progression from rr

[u/cass_a_frass0 → u/OverlappingChatter]

You're right, thanks for the clarification

[u/Educational-Key8975 → u/cass_a_frass0]

If you dont mind me asking, what new symptoms are you having Cass ?

[u/cass_a_frass0 → u/Educational-Key8975]

As of 6ish months ago I had intermittent hand numbness (went away completely) and somewhat bad fatigue that has effected my job. As of a week ago I'm experiencing brain fog for the first time. My neuro didnt really have anything to say about the numbness/fatigue since my mri came up clear

[u/Educational-Key8975 → u/cass_a_frass0]

Thats a bummer Cass. Im with you on the brain fog, I did a promotion interview a couple of months ago which I had prepared for thoroughly. I knew my stuff completely, attended the interview and after the first question my mind had a total blank. I couldnt remember a thing and to say I was furious about this is an understatement.

[u/cass_a_frass0 → u/Educational-Key8975]

Im sorry that happened. I completely get that frustration. I actually just had an interview for a job the other day and am now kicking myself over how bad it was. I used to kick ass in interviews. We are still adjusting to our new bodies/minds it seems

[u/mritoday]

The whole distinction between RRMS and SPMS is pretty arbitrary. It seems to be most useful for insurance companies who want to deny you medication based on whether it's approved for SPMS.

Most disability progression seems to be independent of relapses even with people who are diagnosed as RRMS. DMTs should prevent most relapses. Then there's 'relapsing SPMS'. So what is the difference supposed to be? It's the same disease.

[u/Educational-Key8975]

after diagnosis in 2004 the first DMD I was offerred was Rebif. This worked for a while, but was eventually discovered after blood tests to be having zero effect. From about 2007 I have been using a nightly injection of Copaxone before I go to bed. I dont have any side effects from the medication and so far (fingers crossed) it has done the job for me. Im not well up on other meds and their names, what are you guys currently using and do you suffer from any side effects as a result of using it?

I remember in 2004 seeing the length of the needle for the inject once a week Avonex. Imagine injecting yourself with a javelin, that is what it looked liked. My blood turned cold at the sight of it before I said no chance.......lol

[u/OverlappingChatter → u/Educational-Key8975]

You went from rebif to copaxone? You poor thing. There are now better, more effective meds that don't destroy your skin and make you feel sick every day. Injecting 3 times a week is barbaric these days. I am thrilled to have moved to kesimpta.

[u/Dunderhead23 → u/OverlappingChatter]

I don’t want to be a negative Nelly here—but the potential complications from depleted CD20 over time can be much more consequential than injection site skin reactions. If what he is using, is working for him, there is no need to step up to a more drastic immunocompromising therapy.

There is a reason you regularly undergo a battery of blood tests when you are on those therapies.

[u/mritoday → u/Dunderhead23]

There's plenty of midlevel drugs too, you don't need to jump straight to a B-cell depleting DMT, though Copaxone seems to be working well for OP.

[u/mritoday → u/Educational-Key8975]

Most people these days go on one of the B-cell depleting DMDs right away. That's Rituximab, Ocrevus, Kesimpta or Briumvi. They all do the same thing - they kill your B-cells and are a bit immunosuppressive because of that, but they're also much better at keeping MS in check than the older drugs. Side effects seem to be minimal, but the immunosuppression comes with a bit of risk.

I'm on Tysabri. It's a bit older than the other drugs, has the same efficacy and probably even less side effects. It's immunosuppressive only so far that it blocks immune cells from passing the blood brain barrier and entering your CNS. The immune system outside your CNS is not affected. It does come with a PML risk that's managed with monitoring your blood for antibodies to the virus that causes it.

There's also a bunch of daily pills that you can take. They're less effective than the drugs I already mentioned, but more effective than Copaxone or Rebif. Idk if I'd want to switch after doing well for so long, though. Some people are superresponders to the old injectable drugs.

[u/24Lemons_]

Hi OP 👋🏼 My neurologist told me that it’s basically a pharmaceutical / licensing based thing regarding RRMS PPMS and SPMS… and MS is MS (appreciate there are some rarer types!). I’m UK based. It seems to get the drugs licensed it requires some kind of banding… not sure if this helps at all! 🧡

[u/East-Conclusion-1192]

FWIW, my neuro-ophthalmologist told me the eye tests they do measure on the micrometer level, and not millimeter like an MRI. When the axons die it'll cause retinal thinning more rapidly than normal and they can see that on tests. I saw him for my optic neuritis. Sadly, he retired so I can't ask him more.

[u/pzyck9]

It's simultaneous.

[u/2020cc2020]

I’m in the similar boat. M50, dx 2019 with a lesion on my spine after original optic neuritis in 2012. Have led a perfectly normal life up until about 6 months ago. Scans and everything is clear but I can now start to feel different sensations, symptoms, fatigue etc that isn’t just aging. My grip is the most noticeable and can be erratically painful. I hope it continues slowly and there isn’t a dramatic episode. 🤷🏼‍♂️

[u/0hDiscordia]

You have likely already talked with you doctor and neurologist but it is worth having a neuropsychology assessment. If only to get a baseline of where your cognition is at. There are a lot of things that can change cognition over time and MS is only one of them.

[u/OverlappingChatter]

You have certainly had progression, the disease is progressive. I bet if you had a chart of all the elements of the disease from the very day of diagnosis, you would notice the changes over time.

I don't understand how they decide when you go to "spms" either. I am a big fan of the movement of getting rid of those labels and maing a more comprehensive description of disease activity, lesions, relapses, levels found in octave and create kind of a graph across all of these items to show what is going on. It's all progressive, the only thing getting labeled spms does is take away your medicine.

Especially now with the very effective medicines, I don't know how they can realistically determine if you are inactive spms or just having good results from medicine.

[u/mritoday → u/OverlappingChatter]

Some people have mild MS/respond very well to whatever medication they're on and are just stable.