Last reply 3 years ago
Fingolimod or Lemtrada.

Hi

I was wondering whether anyone could give me the pros and cons of their own personal experience on either of these two drugs?

I had another significant relapse so my neruo wants me to go on some better treatment, he suggested Fingolimod but I asked about Lemtrada after reading about it on here and he said I would be eligible for either.

I’m just taking a few days to think about it.

I am very interested by Lemtrada, what with the 75% reduction of relapses but the side effects are a little off putting and the added notion of blood and urine tests every month for the next five years isn’t very appealing. I’ve also read a lot on here about people who are struggling to get on this treatment and I kind of feel if it’s available for me I should give it a shot. Then again it might not be the best treatment for me.

Fingolimod is the option my neuro had in mind when he was thinking about my case but he hadn’t considered Lemtrada because it is relatively new to the area and there are only two people on it in the area and neither are his patients. There are obviously side effects to this one too and the reduction in relapses is 55% which is significantly more than Avonex which I was taking but significantly less than Lemtrada.

I feel very torn, I have researched both from a factual side, so I thought I would ask you guys to get a personal perspective?

Thank you so much for reading.

Kirsty

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tracyd
3 years ago

@kurst101 – some of the information I’ve compiled and learnt from.

@us-emma her blog on her treatment is here: http://lemtrada.blogspot.co.uk/
Emma has had her first treatment and is doing fantastic on Lemtrada

Glenn Scott was one of the first trial groups when Lemtrada was first used, I’m not sure if he has a blog, but he is hugely active on the Facebook Group : Lemtrada for MS Treatment at : https://www.facebook.com/groups/1723792797845130/

For the UK and Ireland Facebook group managed by the wonderful Tina Mc Gonagle which has a case file section with the individual stories of all the UK and Ireland patients who have had / are having treatment right now : Lemtrada, Alemtuzumab (Campath®) for the treatment of MS UK And Ireland at : https://www.facebook.com/groups/1537738223107805/

David’s story is a little different as he wasn’t part of the trial program but got the treatment because it had been promised during the trial period, also very informative here : http://www.davidscampathstory.org/

I’m now 24 days before starting treatment and I’ve started my blog early with the preparations I am making for the treatment. The project manager in me has to do everything I can to ‘mitigate risk’ which involves lots of Vitamin and mineral supplements to boost my bodies defences so it is in tip top shape when I squish my immune system, I’m also doing oxygen therapy which helps super-oxygenate your red blood cells to make them more healing – which lets face it with a squished immune system can only be a good thing.

http://tracyslemtradajourney.blogspot.co.uk/

Basically Lemtrada is a lower dose version of the drug also known as Campath-1H and Alemtuzumab – in much higher doses (each individual Lemtrada treatment is 1/12th of a single Campath treatment so over your total of 5 days It’s less than 1/2 a chemo dose) it is used as a chemotherapy treatment for Leukaemia.

You need to balance your MS, your lifestyle, your family and everything up against each of the treatments and make the best decision for yourself. I can’t comment on Gilenya (also known as Fingolimod) I haven’t had it, but with rather active and nasty IBS and numbness to my lower body from the MS, anything that makes my stomach bad or can cause Diarrhoea is completely off the table for me 🙁


tabbycat
3 years ago

Only tried fingolimod and there are no side effects at all for me and no new relapses in two years of taking it. I still have muscle cramps and very gradual increasing muscle weakness, but I think it has been very good for me.
Everyone is different and my personal worry is that as I am being forced to join the French national health service in the next month, they may not let me continue with it, as it is expensive.


us-emma
3 years ago

I went from Tyasbri to Gilenya in 2011/2012 due to PML risk. In 8 months on Gilenya I had 2 major relapses- I had been relapse free on Tysabri.

So in 2012 I returned to Ty despite the high PML risks for me. I never fully recovered from the backslides I had on Gilenya even after returning to Ty.

This is a common story. Gilenya just cannot hold a candle to efficacy and Lemtrada is safer AND more effective than Tysabri. I am working with a woman in Australia who has an almost identical story to mine & will get Lem in 10 days. There are many other examples.

In Jan 2014 my titer for the virus causing PML was SO high my doc was just not going to Rx it anymore. I had no alternatives in the US so researched and chose to seek care with Lemtrada in Dresden.

I had No idea I would see the improvements in my disease that I did. I started the blog- Lemtrada.blogpost.com before I left mainly for friends & family to follow & understand my journey. As things started to improve I was glad I had the format.

The purpose of the blog began to change into a place to let others know & understand the effects of Lem from a patient perspective (I am also a medical provider, retired due to MS). My tyre passion is patient education in plain language incorporating my experiences, that of others & research.

I have been doing the monthly trips for blood for a year now and it is really no big deal. When Lem gives you your life back- no fatigue, pain, cog issues or spasticity- all of a sudden a 15 trip for some blood work seems like hardly a bother 🙂

Good luck in your decision & please ask any questions. I am always happy to help!

Take care,
Em

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