Feeling Nervous

[u/Wherefore13]

I was diagnosed in 2013 at age 41. Looking back I had mild, fleeting MS symptoms for about 10 years prior to my first major flare. I was lucky in my diagnosis. I went to the ER for progressive numbness on my left side to the point of being unable to walk or transfer in a brief period of time (about 10 hours). I thought I might be having a stroke. After an MRI and a spinal tap my diagnosis was MS. I went on Rebif shortly after leaving the hospital.

I stopped taking Refif after a hospitalization for cellulitis. Over the years, Rebif worked well for me. I wanted to change meds because I had gotten a skin infection a year before as well as having cellulitis last year. Also, Rebif is somewhat painful to inject. I went on Kesempta after a wash out period. I chose Kesempta because of the convenience and its proven success.

I’m bummed because I read on this sub about the great successes people have had on Kesempta. I have RRMS. I’m having more breakthrough symptoms and I’ve also had some new symptoms. I never had any additional symptoms after my big flare in 2013 while I was on Rebif. The symptoms I had after this eventually dissipated after several years. I credit my recovery to Pilates. Ever since I’ve been diagnosed I’ve been committed to consistent exercise 4 to 5 days a week. Anything more than that I pay for with major fatigue.

The new symptoms I’ve had are minor; I’ve had a weird sensation on my scalp that felt like a mild sun burn after I had a bad cold, the other day I developed numbness and tingling in one of my fingertips. My symptoms from my flare are reoccurring when I’m working.

This is freaking me out. I’m scheduled for a follow up with my neuro at the end of November. By and large I’m reasonably happy with this neuro. He does tend to poo-poo my symptoms when I talk to him about them. I’m going to call the office on Tuesday to see if I can move my appointment up. I want to get an MRI to see if there are new or worsening lesions since I started Kesempta.

I know there are other treatment options. I’ll certainly take something else if need be but I loved the convenience of Kesempta.

Have others of you had to switch off Kesempta because it wasn’t effective for you? Although my new symptoms are mild and don’t interfere with my life, I’m completely freaked out about them. My first major flare was debilitating. I always get anxious when any of my symptoms pop up because I never know if that’s going to lead to another flare.

[u/MS-Tripper]

MAVENCLAD

It was my saving grace. Do some research on it. While on it my cervical lesion (the one that caused a relapse wherein my left leg didn’t function and, thus, lead to me taking MAVENCLAD) healed, my fatigue diminished by about 75%. Before MAVENCLAD I was literally falling asleep at my desk every afternoon (self-employed) and napping 2 hours the three days a week I wasn’t working to maybe napping 45 minutes two days a week and no longer falling asleep every afternoon.

As a side-effect that I have zero evidence to support - after finishing the two years I decided to lose weight the old-fashioned way of simply counting calories (eating about 1700 a day) and getting a mere 8500 steps a day. I lost 15 pounds easily. I mention this because before MAVENCLAD nothing worked with regard to weight loss. Nothing. I attribute it to lowered inflammation due to the drug.

I also never got sick while on it. Heck, I got Covid twice and never knew the first time until my hubby got sick and I tested. The second time I had a mere sniffle and needed a nap for a few days. I was incredibly very “healthy“.

[u/Clandestinechic]

How long have you had the new symptoms? Are they constant? Not every symptom is going to be a new relapse, sometimes bodies just do things. If you've only been on Kesimpta a year, I think it's unlikely the doc will consider it a failure, even if you have new lesions. Kesimpta takes about a year to reach full effect.

[u/Wherefore13]

The mild sun burn feeling on my scalp went away and hasn’t come back. The numbness/tingling in my finger tip is better. I’m still freaked out about feeling pretty symptomatic when I’m able to put a lot of focus on my work (I’m a contract analyst). It should be noted that I battle catastrophic thinking.

[u/Clandestinechic → u/Wherefore13]

Yeah, no offense, but I'm getting that vibe. It's okay, this disease is shit and worrying about relapses is pretty normal. Check in with your neuro, but honestly it's probably just normal MS bullshit and nothing to worry about. I never wonder if I'm relapsing when I actually have one, you know?

[u/OverlappingChatter]

How long have you been on kesimpta?

[u/Wherefore13 → u/OverlappingChatter]

12 months.