Hallo
I was wondering if anyone has had experience of starting a DMT for the very first time when older, (eg. aged over 50)?
I’m thinking in terms of tolerating the side effects?
I’ve been looking at a few MS videos in YouTube but I think most of the MS sufferers who were reviewing their drug were quite a bit younger than me when they first began treatment.
My MS started many years ago, but no treatment necessary so far. Following a recent MRI scan it’s now been recommended that I start a DMT.
I was only diagnosed last December, and after changing neurologist so I could start treatment. My first neurologist was very dismissive of my symptoms having several lesions on the brain and a brain stem lesion that has caused loads of issues. I’m now 56 and have been on kesimpta since October, for me it was a case of going on a high efficiency DMT or be in a wheelchair, as I’ve had 4 relapses since diagnosis, have suffered with Trigeminal neuralgia since diagnosis, can’t stand the heat or the cold, weakness in left ankle, SVT high blood pressure urine retention , reflux, and several allergies MS just keeps on giving.
Since starting kesimpta I’m trying to remain positive that things will improve. If you look on the site on Facebook it’s mostly positive feedback for this medication, it’s one of the newer medications for MS it’s attacks the b cells to stop them from attacking the myelin of you nerves, it’s meant to slow down progression and amount of relapses.
Hey! Starting a DMT in your 50s is totally doable. Side effects really depend on the specific treatment and your overall health, not just your age.
Good luck, I hope things improve for you. Kesimpta is one of the drugs I’ve been recommended (Ocrevus was the other). I’ve heard that when you first start taking the drug it can make you feel a bit rough (UTIs etc)? I guess it varies from person to person.
Yes so scary, I’ve held off as long as I can as medicines generally don’t agree with me, even everyday stuff.
My legs seem to be getting weaker and a recent MRI scan showed cause for concern. I should be seeing the neurologist again soon. Last time I saw them I was offered Ocrevus or Kesimpta.
Have been googling like mad to see which MS drugs generally have the fewest side effects and best tolerance rate!
Fingers crossed but so far I’ve not had a UTI whilst being on kesimpta. The loading doses increased my fatigue but that’s usually what happens to most people. From diagnosis I’ve had issues with bladder retention, so I’ve had a series of UTI but since self catheterising 3 times daily this has improved. I was offered orevus as well but preferred to not have to go to hospital for treatment. Hope you decide which treatment is better for you?
Hi there, I was around 51-52 when I started on Avonex. I will be 71 in early summer next year and yes, I began to feel the side effects a bit more in my late 60s but I think that in the main the extent to which you feel side effects will depend on your general health and your general physiology - as with any medicine some people react mor than others
The thing about possible drug side-effects is that one is politely invited to risk them or leave them alone. In contrast, MS barges into one’s life rudely and without the option and leaving no choice at all.
Personally, I try to think of it that way when weighing up risks and benefits of medication to protect me from the ravages of uncontrolled MS.
Of course.
Just grateful to get people’s feedback as I haven’t found much info about this specifically, anywhere else on the web, so far.
I’m in the same boat - 53, not really had any really bad attacks, but it is creeping up slowly on me. They want to start me on kesimpta - which I believe is quite a strong meditation.
I’ve got about 4 months to go to finish all the injections first. (Shingles etc) - I’m glad they’ve finally tested and admitted I have it - but worried how it’s all going to change my life when it gets going.
Hiya paulgerfen,
The reason I started kesimpta is because I’d had 4 relapses in the first 9 months, I wasn’t pushed regarding having shingles jabs, but my doctors surgery are not very forthcoming you have to fight to get anything done. For me personally it was important to start a DMT before MS took anything else from me. We are all different, and this medication effect us in different ways but I’ve found taking paracetamol with injection and preferably take the injection in the evening then you can sleep it off. I have to say, I started in October and I have noticed an improvement. I will take that small win, as it’s the first in a very long time.
I wish you well when you start Kesimpta.
Previously being on Kesimpta an anti-
CD20 dmd, it is highly effective, not as strong as Lemtrada an anti-CD52 dmd I’ve also tried though.
I’d say all medicines have unwanted side-effects but, not all patients will suffer them.
Hello. I was diagnosed with RRMS when I was 62. Started on a DMT and was on it for about 18 months. I didn’t have hardly any issues with that. It was tablet form.
I wasting started on a once a month injection. Had very good instructions from the company who produces it. This is a doddle as it’s only once a month. Same date, same time.
My last scan showed vey little in the way of change. The guy contacted me every month for 6 months. It was reassuring that he was there and I could contact him directly if needed.
For me, it seems to be working very well. Good luck which ever way you choose.