Hello eveyone,
I’ve recently been diagnosed with RRMS (October) and have been given a choice of disease modification drugs to choose from. I’m quite overwhelmed about having to narrow down the drugs and choosing one that is very effective. I’ve been looking at Lemtrada, Ocrevus and Mavenclad. Has anyone been/is being treated with any of these? If so, could you share your experience of them (pros/cons and side effects)?
I’d appreciate your feedback.
Lisa
Hi Lisa, sorry to hear of your diagnosis and welcome aboard. Everyone is really supportive here.
I can’t comment regarding medication but if you look under the everyday living forum and search under Lemtrada, there is a post explaining experiences with this medication with lots of comments too.
Good luck in finding the right medication for you x
Thank you for your reply and pointing me in the right direction x
Hello Choosing MS drugs is horrible - as none of us know what the progression of our disease is likely to be and that makes it hard to make the risk/benefit assessment considering the different (and scary) side effects of the drugs. Good news is that you seem to have a progressive neuro who is prepared to consider the newest drugs available. Have you found the MS Trust decisions tool yet? This will allow you to compare the drugs directly. The search function at the top of each of the discussions boards should also allow you to pull up past threads discussing each drug (although you’ll need to search separately on each of everyday living and newly diagnosed) I’m a Lemtrada girl - and there are a few posts of my experiences on the board. I was diagnosed in 2016 and lemtrada was my first (and only) DMD and I’ve had a very positive experience to date. Very happy to answer any questions. When I made my DMD selection I pushed for lemtrada as despite very mild symptoms, I decided I was more scared of MS than I was of side effects and wanted the most effective drug available to me even if that came with the biggest risks. At the time neither Ocrevus or Mavenclad were available - and would have given me pause for thought - but the long term trial data on lemtrada (and in particular its impact on brain atrophy rates) means I would have probably still opted for lemtrada over Ocrevus or Mavenclad. My neuro did ask me at the time whether I would be willing to go on an Ocrevus trial (phase 4 open trial - so I would have been guaranteed the drug) so I did look into this a little bit. One of the things that put me off Ocrevus at the time was that it would require on-going six monthly infusions. I was concerned that there may be issues remaining on Ocrevus for the longer term that were not currently understood and that there could also be problems with subsequently withdrawing from Ocrevus to switch to another therapy. This has been an issue for Tysabri (monthly infusions). This wouldn’t be an issue with mavenclad or lemtrada. There are facebook groups for each of these treatments - so they may provide some more useful information. I would also look at Bart Blog as there are a number of posts on there looking at these treatments (although as yet not a direct comparison) Hope that is helpful (rather than adding to the confusion). K xxx
Hi Katy,
Sorry for the slow response, I appreciate your reply and your experience of the Lemtrada treatment. It sounds very positive. I will check out your other posts, thank you. Yes, I’ve found the MS decisions tool and used it to research and compare. It’s brilliant. As you mentioned it’s a very difficult choice since you don’t know how you are going to progress and whether you’ll be affected by the serious side effects. How have you felt after the treatment and have you experienced any of the side effects. What I’m worried about is developing other autoimmune problems, such as thyroid problems. Also do you have to have regular blood tests after treatment?
Mavenclad seems very effective although, I’m cautious about it because of it’s risk of cancer. The side effects from taking Ocrevus don’t seem as severe as Mavenclad. I didn’t realise that there would be difficulty switching therapies, so that is definitely worth consideration.
I feel the same way to you about wanting the most effective treatment. I’ve had a few mild attacks and one bigger one, although my symptoms are mild. I want to prevent the progression as much as possible with one of the most effective treatments.
Lisa xxx
Hi Lisa, To date all has gone well for me. I’m 15 months post R2. My body tolerated the infusions very well with no real reaction (a rash and a mild headache which passed with paracetomol and anti-histamine). I recovered quickly and was back out running within a week / at full time work with in two weeks (I felt well before this, but I communte into London each day and decided to avoided the germs of crammed public transport!). I didn’t succumb to any bugs or viruses at all whilst my immune system re-booted. I also didn’t have any pseudo-relapses as a result of being under the weather or suffer any dips in energy whilst I was recovering. I was sensible and followed the diet as requested by my team and that may have helped - but also celebrated coming off the diet by tucking straight into all the rare meat, seafood and shell fish I’d been missing. My immune system recovered gradually each time - I think I made it back into the bottom end of the normal range over about a 9 month time frame To date, I have had no indications of a secondary auto-immune condition. I have my bloods (and wee) taken monthly and see my MS nurse every three months and my neuro annually (with an annual MRI) so I am closely monitored - and hope that if any issues do arose they will be spotted quickly and will therefore be manageable. However, its still early days here as I have another three years of monitoring to get through. Fingers crossed Importantly - no relapses, no progression, no sub-clinical activity on my MRI (new lesions), no active lesions and signs in my latest MRI that my existing lesions were less pronounced. Whilst I don’t know whether this would have been result if I had been on a milder/less scary drug or even no drug at all - I do believe I have given myself the best possible change of limiting the impact my MS has on my life. If I do get another autoimmune condition as a result of MS, I’ll cross that bridge when I come to it. Hope that is helpful? Please do shout if you have further questions. Obv I can only speak from my own experience, and not everyone has had as smooth a ride as I have. However, from the anecdotal evidence of FB and from the experiences of friends I have made along my experience is by no means unique - it is not even unusual. The FB group also has a number of people who have picked up thyroid problems etc and are managing with them just fine - and have no regrets on their lemtrada decision given its impact on their MS K