My lemtrada experience

Has anyone else had Lemtrada? How is pob getting on now?

That is a timely bump as I saw my neuro for review yesterday. So far all seems to be going well - my blood and urine tests show things are functioning as they should so I haven’t had any of the major side effects. Quite interesting to see that my lymphocytes went to zero after treatment and platelets were well down but both now back up (although seem to bounce around a bit). I haven’t had any relapses although I’ve had a fair bit of fatigue recently so thats my main MS symptom these days (I know I’m quite fortunate compared to many).

Ianfalex - sorry to hear about your bad experience on lemtrada and generally. Seems you’ve had it very rough and hopefully you find a treatment that helps.

I had Lemtrada in May and I’m doing well. No relapses. I don’t feel any different post treatment but then I hadn’t had a relapse in a long time anyway and didn’t suffer with symptoms before. I guess only time will tell if its worked for me. Lamfalex, I’m so sorry to hear about your experience and really hope you improve soon. From my own reading it does seem the people with MS more effected to start with do take longer to recover. The infusions can reactivate old lesions, it did with me. The stem cell treatment they are referring to will likely be HSCT. It is being done on the NHS in London for people with highly active MS who have failed other drugs. There is a good facebook site with a few from the UK who have had the treatment. It is my plan B.

Hi Pob and Humbug,

Thanks for the comments, how do you find these stem cell therapy posts on Facebook I am not on it, I will have to get my daughter to use her account.

Look up Hematopioetic Stem Cell Transplant - MS & Autoimmune Diseases. If you type HSCT into the search engine on Barts MS Blog you will found info there too.

Another brief update from me. Had results of a recent MRI back yesterday which don’t show any new lesions - I’m delighted! Trying not to get overly excited that lemtrada has done the trick as my last MRI was about 6 months before the treatment but anyway - a year without new lesions is good news whatever the reason!

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That’s great news pob. Keep us updated & fingers crossed for the future x

Hi Pob i have been reading about your journey on lamtrada and it does all sound positive i was wondering how your doing these days. I am currently in a position where i need to change treatments and lemtrada is one of the options for me i have also inquired into the HSCT but im not sure if i had lemtrada that this would stop my chances of getting HSCT ive had ms for 14 years in the early years i was on rebif then had a break from meds before going on tysabri for the past 5 years i have now tested positive to jc hence changing treatment your journey has been great to read giving a good insight many thanks

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Hi Shirl. I’m doing ok - still no relapses although worth noting it has been less than a year since I had the treatment.

The last couple of years I’ve always felt like February was the worst time of year for me and sure enough I did experience some sensory issues recently - things like pins and needles in feet and hands going to sleep a bit too easily. Not as bad as previous years and hopefully not indicative of anything too sinister going on but I suppose it shows that I’m not 100% ‘cured’. I still feel positive about my choice though and look forward to blast number 2 in May!

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Sorry to hear about your Lemtrada experience. I have been on Tecfidera for 14 months now, I am progressing quite quickly, it is very painful to stand and walk but have had no relapses in that time.

I’m really sorry to hear this and hope you start to feel some improvement soon.

How soon after Lemtrada did you have the MRI which showed new activity?

It would not prevent you having HSCT although it would exclude you from the current Sheffield trial.

I’m doing ok. I have my next round due in May. I’ve not had my follow up MRI yet so I don’t know what’s gone on behind the scenes. No relapses though.

My thyroid is acting up. Possibly a side effect from the treatment but other than that no issues to speak of.

Hi all, I’m new here and this is my first post.

I recently had my year 2 Lemtrada infusions over 3 days, and currently have time off having had the treatment - advised by my neurologist as I work in a hospital so he didn’t want me exposed to too many bugs! SO i thought i’d share my experience.

I was formally diagnosed in October 2014 after INO in one eye then the other within about a week, I’d had an isolated event in 2010 while at university, but even then I knew if that makes any sense. Despite my neurologist at the time calling this an isolated syndrome he started me on treatment - daily sub sut injections (I’ve forgotten the name!) because both my mother and grandmother had MS so he sold it to me as better to start the treatment than not even though I can’t confirm a diagnosis.

My second round of treatment was a doddle compared to my first, even though the first wasn’t too bad.

The first time round I found myself very tired from day 4 onwards, probably because I wasnt getting the methylprednisolone any more but I’d have to sleep for a couple of hours each afternoon for about a week after the 5 days of infusions finished. Overall I think I tolerated it well though, I got the expected rash on day 4, which was gone by day 5!

This year seemed more straight forward, I finished the infusions last wednesday and have been absolutely fine since. No tiredness even, so being off work I feel like a total fraud because I’m fine, but as I’ve been told I must be off I will take the advice!

Since I started the lemtrada I have had no relapses and all my blood tests have been normal.

My current neurologist is very nice and did his research into Lemtrada as a registrar, he gave me the choice between Lemtrada and Natalizumab, I opted for Lemtrada as it wasn’t a monthly thing which I felt would interfere with work etc more. At the time I had done a lot of reading about the two most of which I’ve now forgotten! But so far I am very pleased with my choice.

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Hi Anon - no I’ve never heard of that happening and I don’t think I’d be satisfied if it was suggested to me. I would’ve thought the point of the 5 days in a row is that it takes that long to kill the offending cells and if you take a break in the middle they would have time to recover (NB I’m just a layman rather than a medical professional so please don’t take my view as fact!)

Also, its not like hospitals close for bank holidays so this seems like an odd thing for your nurse to mention.

Does anyone have terrible trouble after eating a meal, my legs get really bad and I cant walk at all even with my crutches, I have had to crawl out of the dining room before now. I am eating all the right foods, low carbs, no sugar etc.

Hi pob,

You have just confirmed what I thought although I was slightly less tactful in my decision in refusing this route. It also unfortunately also tied in with the planned junior doctors strike/ industrial action. I too, am a layman but it just did not seem right.

Thank you for the post. A newbie to this messaging lark so forgot to provide a visible user name (Anon). I would add that I hope the junior doctors follow through with their strike.

Hi there everyone!

Been reading your bloggs and they are very helpful. I’m due to go in to Kings Hosptl next Sunday for my first course of Lemtrada. I’m really nervous. Only diagnosed in Aug, but clearly my ms is very aggressive and continually active.

Any advice on what to take in with me and any supplements that might help afterwards? Any advice at all would be very gratefully received as the internet seems to throw up some terrifying stuff that is making me turn grey!

Thanks for your help, it’s good not to feel alone.

Raffs

I am getting increasingly in this as I get nearer to the treatment I am so hoping is going to stop my MS in its tracks. I hope prob and humbug will both post and tell us how their second rounds of treatment go.

I meant pob - spellcheck error.