Hi All
I have recently been diagnosed with Relapsing remitting MS and have been provided with 2 courses of action to take.
I have been offered Techfidera and Lemtrada as my options and wondered if anyone could advise of their experiences that may assist in my decision regarding the best possible course to take?
Blimey, they’re as like as chalk and cheese.
Tecfidera is easier to take, being a daily pill and having very few long lasting side effects. It also clears from your system fast so on the off chance it didn’t suit you, it’s easy to stop it and reverse any bad effects.
Lemtrada on the other hand has the benefit of being way more effective for most people. However, there’s some very nasty side effects and for some people has a worsening effect on their MS and disability. It also takes a long time to clear from your system, this is why it’s only given once a year for two years. Therefore it’s not so easy to repair any side effect damage.
I don’t think anyone can really properly advise you as it’s a big decision. The best thing would probably be to research both of them as well as you can. Look at potential effectiveness, expected side effects and read people’s experiences.
I’m on Tecfidera. I haven’t had terrible gastric effects as some have, but I have got ongoing problems with my lymphocytes. It’s not something that there are any experiential effects from, but it may cause me to have to stop the drug. I have no experience with Lemtrada, nor will I as I’m not a good candidate for it (partly because I’m nearly 19 years into MS, am really quite disabled, plus have had Graves’ disease previously which is one of the expected side effects).
However, if I were 15-20 years younger, were less disabled and weren’t ruled out because of previous thyroid disease, I would take the chance on Lemtrada. That’s just my opinion. Ask as many people for their thoughts, do as thorough research as possible, weigh up the pros and cons, then make your decision.
Best of luck. Sue
Thanks for your comment Sue.
I only found out in Friday and spent hours reading the pamphlets and researching online so appreciate any additional information I can get from those with direct experience.
At present I have not been experiencing too many of the symptoms and so was contemplating techfidera as thankfully I am not severely affected at this time.
I see lemtrada as more of an escalation drug and so I suppose the option is always there if I still suffer relapses on techfidera. Obviously have no experience of either so anything to tell me others experience can help in my decision making process.
I wish you all the best Sue and thanks again
Tec comes with a range of SE too including PML - The EMA has just posted an update on it with new recommendations. Lem leaves your system quickly actually. Lem is more effective than Tec statistically but both have + & -. Read as much as you can. The MS Trust MS Decisions | MS Trust is useful for a basic overview of the pro’s and cons. Barts MS Blog is fantastic if looking for more comprehensive information http://multiple-sclerosis-research.blogspot.com/.
Will add I went for Lemtrada as I wanted the most effective drug but many people on Tec say good things about it. Lots of posts on both on the Shift MS site. It gets more traffic than this forum.
Hello Everyone
I was diagnosed with RRMS in 2011. I’m not sure that anyone living with MS can be described as fortunate, but I was told that ‘fortunately I had a mild episode’.
Just over 2 years ago I started having discomfort in my left breast. An examination at my GP surgery found no lump and my GP said it was due to medication I was taking for heavy periods (sorry if that’s too much info ). My GP prescribed evening primrose oil. Last March I had a hysterectomy and thus the menopause began. I still had the breast discomfort which my GP said was now due to my hormones. It got to the stage where I was being awoken by a tightening feeling in my left breast. After lots of tearful visits to my GP he finally gave the go ahead for me to have a mammogram last November.
Fortunately (there’s that word again!) I was given a mammogram and ultrasound and the results came back as normal. I was therefore able to relax. However for the last 4 months the tightening has returned with a vengeance - to be honest it never really went away. Throughout I have continued taking the evening primrose oil and, on occasion, have resorted to painkillers.
I was assigned a local MS nurse when I was first diagnosed but she is currently on maternity leave with no replacement. I don’t know where to turn as I feel my GP will think i’m wasting his time…again
Could this be MS related?
Thanks. How have you found lemtrada?
I found it fine. I don’t like being in hospital but other than that it really was fine. I had a bit of rash during infusions (expected),and my sight deteriorated slightly during and for about a week after (not uncommon to have a flair up of old symptoms) but all manageable. Steroids knock me about more than Lemtrada.
I was back in work just over a week later. I have felt tired at times but than again I did before. I still have MS at the end of the day.
My only gripe really is I’ve had 3 UTI’s since. To be fair though I’ve always been susceptible to them and they are getting flagged up now because I have monthly check-ups. I had the treatment at the end of May and so far so good.
Emjay I’d start your own topic as this may get lost. What you describe doesn’t sound typical but I’m no expert. Could be related to what is known as the MS hug?
Thank you, Humbug.
Back on topic… i vouch for Tecfidera.
However, i have no clue what Lemtrada is and i do not believe it was one of those products initially presented to me following my diagnosis.
In any event, ignorance is bliss; i have nothing negative to report with regard to Tecfidera and i find it hard to believe that anything requiring a hospitalised infusion would be comparable, at least as far as convenience is concerned.
I would also suspect that such a medication would be better retained as a ‘second line’ drug, should a first choice oral medicine be found inappropriate / inadequate.
Good luck with your research and decision, but frankly, throw those pamphlets and marketing bumf out right now.