38M diagnosed with RRMS roughly 4 months ago.

I finished the first 5-day course of infusions for alemtuzumab (Lemtrada) a week ago. Before I started, I wasn’t able to find much information on what to expect, so I hope this is useful to anyone in a similar position in the future.

Your mileage will almost certainly vary (the MSer’s credo) but

Below is a day-by-day breakdown of how treatment went, along with a (very) short-term summary of the after effects.

I plan to make updates to this post at the 1 month mark, 2 month mark, etc.

Patient profile

-First signs ~11 months ago: back pain, leg weakness, balance issues
-Previously in excellent health, physically active with “high reserves” for compensating for disability (very hollow consolation)
-Estimate of current general capacity: 75% of healthy baseline one year after onset
-MRI with contrast showed medium lesion load all over brain + at least one gadolinium-enhancing lesion; nothing on spine
-Two relapses since initial symptoms, incomplete recovery from each
-Qualified for alemtuzumab due to highly active RRMS as described above

Pre-alemtuzumab symptoms + treatment

Main symptoms:
**-**Spasticity in lower back, weakness and instability in right knee.
-Partial numbness in both feet (causing balance issues).
-Moderate fatigue and insomnia, severe depression.

Handling with:
-Daily exercise program (stretching, weightlifting, cardio)
-Daily meditation practice (30 min vipassana sits)
-2x weekly physiotherapy sessions
-Occasional psychotherapy appointments
-Alternating melatonin + lorazepam for insomnia

Infusion days

Day 1 (~8.25 hours total)
-Infusions took place at local hospital in a private room, as there are no infusion centers nearby (if this is an option for you, highly recommend it for privacy and proximity to bathroom.)

-PICC line installed in inner bicep to make subsequent infusions simpler and reduce wear/tear on veins. Process took around 30 minutes: nurse used an ultra sound machine to find the right spot, then applied local anesthetic to arm before inserting tube. Felt a little weird but not painful.

-Premeds delivered once PICC line installed: corticosteroids, paracetamol, antihistamine. Took ~1.5 hours.

-Steroids left a copper taste in mouth, but easily solved with breath mints. Slight boost in energy was quickly counteracted by antihistamines.

-Short “flushing” period after premeds before starting alemtuzumab (~20 minutes).

-Alemtuzumab infusion took ~4 hours. Vitals monitored via diodes the whole time (eg. tension, cardiac frequency, respiratory frequency, blood oxygen, etc.) so no need for 2 hour post-infusion observation.

-Suggestion: wearing a button-down shirt makes it easier to be relatively comfortable with all the wires and tubes attached to you.

-Normal appetite through the day, mild drowsiness but no “knockout” effect. Bringing tons of books and podcasts felt like overkill.

-Infusion reactions were mild: deep cellular fatigue, occasional twinges in back and knees, little bit of nausea once finished. Temperature fluctuations through the day (eg. hot for 20 minutes, cold for 10 minutes, etc). Mild flu-like symptoms upon arriving home.

-Eating ginger chews helped with nausea. Paracetamol and water were enough for flu symptoms. Went to sleep early because of fatigue.

Day 2 (~5.5 hours total)

**-**Noticed a trend with blood pressure: seems to rise a bit after premeds, and when alemtuzumab begins. Not a big deal, no action needed.

-Premeds seem to be infused at slightlyvariable rates, depending on how the body reacts. Sometimes there’s a 10-15 minute gap between meds. In general the whole process still takes ~1.5 - ~2 hours.

-Antihistamine + steroid combo felt less strong today, nurse suggested the body is acclimating to meds?

-Same for alemtuzumab: little big of elevated temperature but no major changes in mood, appetite, energy, brain fog, etc.

-Post-infusion monitoring for 30 minutes before going home. No issues. Felt normal when going home, took lorazepam to help sleep (neurologist confirmed no interactions with alemtuzumab).

Day 3 (~8 hours)

-New order for premeds: paracetamol, then antihistamine, then corticosteroids.

-Feeling more feverish today, drowsiness more intense. Blood pressure was higher but no action needed.

-No headache but still have twinges in back and legs (maybe just due to lying on bed all day?)

-Feeling tired when going home, but generally fine. Normal appetite, mild brain fog.

Day 4 (~6.75 hours total)

-No corticosteroids for today, but 2x the amount of antihistamines (100mL)

-Definitely makes a noticeable difference, much sleepier than previous days

-Napping a lot and heart rate is low, which triggers alarming beeps from the machine… but seems to be normal according to nurses

-Adding a tiny bit of salt to lunch seemed to make the heart rate go back to normal? Wasn’t sleepy after that. Nurses are very calm and maybe this is all just a bunch of noise / no signal

-Not freaking out about every fluctuation on the vitals screen = helpful for sanity

-Tiny bit of irritation (rash?) on lower back, but overall feeling confident about an easy wrap up tomorrow

Day 5 (~7.5 hours total)

-OK too confident: rash intensified today, all over lower back, legs, and arms. Not unbearable itchy but noticeable and uncomfortable.

-Neurologist stopped by room and instantly ordered more corticosteroids, which weren’t planned for today.

-These resolved the rash almost instantly (nurses also gave a bottle of talcum powder, which wasn’t needed)

-Midway through the day, had the first/only blood draw of the treatment to see if alemtuzumab was killing off the problematic blood cells

-Once corticosteroids were infused, everything proceeded smoothly. No issues of any kind except mild brain fog, which might also just be due to psychological stress of the week.

Post-treatment thoughts and observations

-One week since concluding treatment, I haven’t noticed any significant changes in any symptoms.
Maybe a little less parasthesia in the upper limbs and feet, but it’s not like killing the problematic B and T cells instantly erases the MS. I didn’t realistically expect this to happen but a part of me is still kinda disappointed

-I definitely feel more tired and stupid after treatment, though this is improving a bit each day. I resumed daily walking and PT exercises about 3 days after treatment ended and this seems to help

-I also went back to work 3 days after treatment. But I work from home and the end of summer is a slow time…if I was working on-site in a busier environment, an extra week off would probably be necessary

-I’m masking when I go to crowded public places like supermarkets, and hand sanitizing like a demon whenever I touch anything. But I’ve also gone out to restaurants twice since treatment ended for sanity- and relationship-maintaining reasons.

-Cleaning my cats’ litter box is less of an issue than I feared. N95 mask + open windows + common sense (don’t touch the shit / wash hands vigorously anyway) seems to do the trick.

That’s all for now… I hope that in a few weeks I’ll start seeing some improvement to disability levels as described in the CARE MS trials.

And if you’re considering alemtuzumab I hope this is useful to you in some way.