crossroad in therapy
dear community,
I am looking for advices, experiences and possibly critiques to my stream of thoughts. I know each individual's MS progresses differently and this is why I am asking to you
Background:
diagnosed in 2017 with RRMS. Life was already too complex at that time. I wasn't prepared to accept I had 11 lesions, the diagnosis of MS and therefore a therapy with DMT.
I didn't start any therapy with DMT and symptoms disappeared very quickly. I kept my body very active, adopted a whole foods diet, no dairy, no gluten and all these suggested diets, no alcohol, no tobacco. I wanted to avoid any inflammation.
However, last year (2023) I believe I started to see what is called PIRA (progression independent of relapse activity) so I decided to check how my MS was doing, and started a DMT, because I understood the importance of thinking on the long term.
Facts:
1) between 2017 and 2023 my MRI scans had NO new spots, and my EDSS score didn't increase. However, I know that I went from running 10k three times a week to just walking, to walking less and less by spring 2023. Brain fog started to be an issue as well.
2) in october 2023 I began taking Tecfidera. Brain fog got worse and I was fatigued all the time. Additionally, I had 2 fevers, after which I felt "different" in a significant way.
3) after taking Tecfidera for 7 months, in april 2024 I went to my neurologist for a checkup. The MRI showed 5 new lesion (one in the spinal cord, dammit) and the neurological tests showed an increased EDSS score.
4) After that the neurologist told me to do some analysis (that I am currently doing) to see which would be the best High Efficacy DMT for me.
4b) in late april I decided to stop taking tecfidera because It didn't make me feel good at all.
5) Likely by next june the neurologist will tell me the new therapy plan
And here we are ...
I have to admit I am a bit scared. I feel I am in a loop of thoughts in which I attempt to foresee the future and how my body will react.
These are the things I keep telling to myself:
1) High efficacy is linked (?) to severe side effects. To what extent?
2) 6.5 years of no dmt since 2017, no relapses, no new spots on mri, no worsening in EDSS score, BUT, six months on tecfidera instead gave me a relapse with 5 new lesions , and a severe worsening on the quality of life. What should I infer from this facts?
3) other than slowing the progression of the disease, are there other benefits in taking a dmt? For example an improved quality of life, or some symptoms that get better.
One thing that I didn't like about tecfidera was that, despite my high motivation in doing workout/walking/etc, I was exhausted instantaneously and couldn't do much for 6 months. However, after I quit tecfidera in mid april, my energy came back and I am walking and exercising as much as before taking tecfidera. Instead of being sad and tired, now I smile and do many things.
My questions would be:
1) how did you react by finding out to have new lesions while taking dmts?
2) which positive benefits did you encounter after moving to a new treatment?
3) where the expected side effects present while being on your DMT?
Thank you very much in taking the time to read my message and write back <3
Hi I have ppms also diagnosed 2017. I started DMT in 2021, I was only offered Ocrevus infusions which is a 6 monthly infusion. I'm not sure whether they offer this DMT for RRMS. I did have new lesions after 2 yrs of ocrevus infusions. But now my 3rd year of Ocrevus and no new lesions, so I guess it is now taking hold and working. Although my EDSS score is much worse now, I'm presuming this is because I have PPMS. Good luck for the future.
I can’t offer any advice re DMTs as I was diagnosed with SPMS from the get go, and am not eligible for the one treatment that is available for SPMS, however I just wanted to send support as I do know that is it scary dealing with MS progression, dealing with new symptoms etc. There is a lot of good support on this forum .