Can anyone else share their experience of what happens beyond the 5 years of blood monitoring? My neuro team have not recommended any follow ups and I guess I continue as normal unless I relapse??
Hi everyone, I have recently been diagnosed with RES MS as I have had 3 relapses since the disease onset in June. I am due to start treatment very soon, hopefully in January. I have been told that I need to choose between Lemtrada or Tysabri (depending on whether i'm JC +/-). Please can you advise m...
Hi my computer skills are atrocious they didn’t use be, just another symptom. This is response to the new chap who asked about two medications.
I was on Tysabri for nearly 6 years,a wonderful drug helped me to stay at work, Only came off due to the change in my JC virus test. Unfortunately my vei...
Hi all. I’m overwhelmed, looking for input. DX in 2019 and started Tysabri. Stayed on Tysabri for 2 years and was stable. Switched to copaxone for family planning, and eventually found out we have male and female factor infertility. We’ve been working with a specialist, trying to get everything sort...
Hi All,
I finished receiving R2 of Lemtrada this past Wednesday. (Of note, I had R1 in 2017, got pregnant, delivered healthy baby 2019, and had new activity as of Summer 2022, hence the non traditional time frame.) Is it safe to smoke marijuana at this point? Would edibles be better? I have my medi...
After 2 rounds of Lemtranda my 5 year monthly Bloods draws are done.
I was lucky no major side effects (apart from an infection)
And the nurse who drew my bloods also had MS and was on the same treatment as me.
so the journey begins today- sitting here waiting for my treatment to start- feeling positive only real concern is being away from my little girl (6 months old) for so long everyday!!
I am hoping this will bring the ms to a halt for a long time and maybe even improve some symptoms.
i know 3 people ...
Hi, I have RRMS and have had to have a 3rd round of Lemtrada, I was told it wasn’t common to have a 3rd.
Has anyone else out there had 3 rounds? I’m scared I’ll need a 4th l.
I’ve had both rounds of lemtrada and just recently a family member noticed I had bald patches at the back of my head could this be a side effect from the treatment?
As I was searching for this before my first round I thought I would add it for others in my situation.
I experienced hair loss such as clearing my hair brush much more often and hairs on my clothes ect for about six weeks after round 1 which worried me as it kept happening so long after the treatm...
Hi all!
About to start Lemtrada in 5 weeks and feeling pretty optimistic. I’m still getting mixed messages from the nursing team about shielding and the recovery process. I’m 27, otherwise healthy, and hate being stuck at home. I’m keen to get out as soon as I can afterwards, but will obviously not ...
Hi, after being advised to come off Ocrevus because of Covid concerns, the MDT has approved me for either Lemtrada or Mavenclad. How do you choose between 2 very different treatments! Obviously Mavenclad is very attractive because taking tablets is very convenient compared to going into hospital for...
So after a less than illuminating meeting with my neurologist on the 5th I went for a chest X ray and (eventually) blood work. My JCV still wasn’t back but I was feeling really overwhelmed and didn’t know where to turn. I reached out to the nursing team and had a phone consultation yesterday. I expl...
Hi on this beautiful Saturday! I got a call from my MS nurse just over a week ago saying that my neuro Dr Gnanapavan was advising people to switch from Ocrevus to Lemtrada as there has been some fatalities from Covid! I said yes, and now I have a blood test booked. Have got used to Ocrevus, had 5 i...
I was curious, because I had such a good outcome after my first 2 courses I am hoping for the best with my 3rd..Had a bad bad relapse with symptoms persisting for about a year now since I was pregnant..
Got me from working 3 long days a week as a nurse to using a cane.my walking was never exceptiona...
Hello, against advice from my neurologist I got pregnant in my second son while between first and second rounds of Lemtrada. If anyone wants to ask me about this situation no worries, anybody being offered Lemtrada and want to know more please contact. #we can do it