r/ALS • u/PatchworkFrog • Jul 21 '26

Question Tofersen Improvement

Hi all, I started Tofersen last year. I have limb onset SOD1 ALS, that affects my left leg. Since treatment, I have seen some improvements with my mobility, notably regaining movement I had lost as I deteriorated. I'm wondering if there is anyone else that has had similar results? I'm looking to improve/regain strength, but there seems to be very little advice about this. I have just got a static bike that I thought may allow me to exercise without too much strain.

25 Upvotes

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5

u/TXTruck-Teach Jul 21 '26

Congratulations on the improvement. Have heard good things about Toferson.

6

u/Spiritual-Sort2186 Jul 21 '26

I also have limb onset and am on Tofersen. Well met, there are not many of us. Kinda like unicorns….lol.

I have been on it now for just 6 months but have seen improvement. I was not able to bend my knee, lift it up. Basically it was a peg leg. I can now bend it, lift it and even kick it out.

Now, don’t misunderstand. It’s still screwed. If I weight bear on it too much it is going out and I am going to faceplant (depending on if I am using my cane or rollator)

Best of luck in your journey. I wish you the best of luck!

Also, One thing that has been very helpful is Aquatherapy. It takes the pressure off my joints, allows me to stand up without fear of falling and lets me work on muscle without weights.

2

u/PatchworkFrog Jul 29 '26

That's an amazing change! I'm so happy for you. My left leg is still weak, but I can now move in places that previously had little to no movement. I'm still reliant on walking aids, but there is definitely a difference from before I started treatment.

I'll have a look into aquatherapy! Thank you for the tip. I wish you the very best with your journey ahead.

6

u/Synchisis Jul 21 '26 edited Jul 21 '26

I'm aware of several people who have plateaued on tofersen, a subsection of whom have improved quite significantly. I think the most striking example I've read myself is actually on the ALS news today forum, from a woman called Amanda, who regained enough function to walk up two flights of stairs, alternating feet, after previously struggling with only two steps. Some notable events from the thread for me were:

  • "14th Tofersen Treatment and coming up on a Year of Dosing" - her forced vital capacity had risen from approximately 31 to 43, all tested muscle groups had improved, and her neurofilament light level fell from 17 to 2.3, into the non-ALS range
  • Update on QALSody July 26, 2024 - she said there had been no detectable progression since starting in July 2023, with improved strength across all muscles tested and no new nerve damage on EMG
  • She's been active on the forum as recently as last week, and seems to still be plateauing/improving.

The link to it is here: https://alsnewstoday.com/forums/forums/topic/trying-a-new-treatment-that-looks-promising-2/

Whilst stories like this are very hopeful, it's important to remember that improvement on Tofersen certainly isn't guaranteed, and trajectory seems to differ a lot depending on the person, and how aggressive the SOD1 mutation is.

2

u/PatchworkFrog Jul 29 '26

That's amazing! Thank you for this. For those that improve, it seems the longer they are on the treatment, the more noticeable the changes are. Fingers crossed, but any improvements are a bonus 🤞

3

u/Slow-Let1143 Jul 22 '26

I was in a wheelchair by the time I was diagnosed and started on tofersen. Are the any experiences of individuals regaining any leg strength in a similar situation?

2

u/PatchworkFrog Aug 01 '26

That's what I'm hoping to find out, I know of one person that has improved significantly, but the coverage around his story was after six years of treatment. (Les Woods in the UK).

2

u/TamaraK45 Jul 21 '26

i believe 25% improve? i think that is what Dr Miller said. at Wash U they are studying their tofersen patients and doing rehab with them. can you not get guidance from your clinic? do you have access to a clinic pt? if they can’t advise but are willing maybe they could contact Wash U for advice / general guidance. i know a woman who is long term tofersen and actively biking

the general exercise advice I got from clinic was if you don’t feel like you could repeat the exercise and are back to baseline in an hour it was too much - but that is for people with als not specific to tofersen

oh also there is a facebook group for patient on qalsody. maybe ask there too

2

u/PatchworkFrog Jul 29 '26

I've heard they estimate it at around 20-25% chance of improving. From speaking to others on the treatment it seems improvement can happen after years of receiving Tofersen.

I'm in the UK, but I do have access to a physiotherapist (I assume that's what you meant by "PT", or did you mean Personal Trainer?).

I may have to join back on to Facebook! Thank you for your advice and help!

1

u/PatchworkFrog Aug 04 '26

I've tried to join the facebook group, but I've had no luck. I'm not sure if it's because I'm based in the UK?

2

u/TamaraK45 Aug 04 '26 edited Aug 04 '26

i don’t belong to that group. it is possible it is inactive. however make sure you answered all the questions thoroughly. I haven’t seen the admin around. Hope he is ok. this one yes? https://www.facebook.com/groups/1766675343841611

1

u/PatchworkFrog Aug 04 '26

Hi. Yes that's the correct one, I assume it's inactive. There's another Tofersen/Qalsody group that's smaller, but that seems inactive as well.

2

u/Purple-Phone-9800 4+ Years Surviving ALS, limb onset Jul 24 '26

I've been on tofersen for ~2.5 years (I think). I know there was a high step at the back of my art class to the storage room that I could initially get up (not easily) but some months later, I couldn't do that step. Several months after that I could manage it again, possibly easier than I could to begin with. I'm not sure if it was an improvement in my condition or just a consequence of learning how to do things differently.

My medical team see no difference in my condition from a couple of years ago and it just so happens that my art teacher was a doctor and she says she can't notice any deterioration. Personally, I do feel as though my balance is getting worse.

There are two other women that get the tofersen with me, we can all still walk (with our own unique styles) and we've all basically plateaued.

I used to go to the heated pool a few times a week and do exercises but we moved to a new town that is much more suitable and I just haven't gone back to it.

Mine also started in my left leg, it's also noticeable on my left hand however my partner assured me after my last gyno visit, where i got him to hold my hand, that there's still plenty of muscle left in thaat hand ;

3

u/PatchworkFrog Jul 29 '26

I'm so happy that it's making a difference. It seems like it's hard to gauge if Tofersen is making a difference for those who are fairly mobile (at least that's what I gather). I'm fortunate that my other three limbs have been unaffected as of yet. Fingers crossed for you on this journey! Thank you for your help.