Well I had it in 2009/2010 and it has certainly made a difference to me. No it is not a cure and I still have the disabilities I had before taking it. My walking was getting bad before I took it and has greatly improved afterwards.Unfortunately I got an over active thyroid as a result of taking it. You have to have blood tests every month for 3 years after taking it , so you are well monitored. To anyone offered it I would say go for it. Heather.
Hello all, I have been off the boards for a bit, hope it is ok that i am back to seek help. So I have been offered lemtrada and am having serious problems making a decision. MS was fairly benign… 3 attacks in first 8 years only one of which was serious but in past 3 years have had 4 attacks, one biggie, two medium one minor. But each has left its mark with sensory issues, increased fatigue and an occassional limp if I really over do it. But, I am am still walking fine, have a decent social life and work full time at a job I love. My dr has said if I want to make sure things don’t get worse I really need to switch to lemtrada. Avonex and now copaxane not doing the trick anymore. The real stickler is that I am being given 4 year window… Apparently more than 15 years after dx and I won’t qualify under current rules. Main issues are the side affects, do I risk all the horribleness when I am still doing relatively ok? I know my ms will get worse, but I would rather the next 10 years with just the devil I know, which I and my family have come to accept psychologically, than a degree of MS plus god knows what. Also, there are issues around having kids…as a new treatment, well, I was told it could have an impact here too in terms of complicating pregnancy, that there are a lot of unknowns etc so I should have children first. I want to have kids soon, but dealing with newborn, plus treatment plus side effects, too much maybe? In two minds about it and could just do with peoples friendly advice. Thanks all.
Never heard anything about this fifteen year “rule” before…? Is that because people will probably be SP rather than RR at this point? But personally, I would say if you are being offered this drug, go for it for the reasons I stated above. And if you’ve got a neurologist willing to prescribe it right now then bite his hand off would be my advice! I won’t be hesitating if they offer it to me - I think I would kiss them with relief. I’m in a similar kind of boat - nine years on Rebif (overall good) but the last two and a half years (including the last on Gilenya) have been pretty crap with six relapses in total, all sensory, but have left their mark - but I still work, walk unaided. I did a little bit of homework about pregnancy too with it (although I think this was as a leukemia drug) and from what I read, you can get pregnant four months after the first treatment - although where this would stand you in relation to the second blast of it a year later, I don’t know. But in theory, you could have the two treatments - for example June 2014 and June 2015 - and then start trying October 2015 if what I read was correct which doesn’t seem that long to wait. Can I ask what area you’re in? (just so I know where this very helpful neurologist you have is!)
I will reply properly later. News on now. Bye for now Jan
This drug sounds amazing to be honest! I’d try it if i was given the oppertunity. I was diagnosed with RRMS around18months ago and was put on rebif last september due to the severity of my relapses, i am currently recovering from a relapse atm which was quite a severe one and this is while i’m on rebif, so if i was offered lemtrada i think i would most definitely accept it! Hol x
Just a question hol - would you choose campath over tysabri if you could choose between the two?
I know you’re not asking me 
but yes, I would choose Lemtrada over Tysabri no question. The PML risk is scary and I’d much rather have two short courses of treatment than an IV every month that I’d have to schlep nearly two hours away for. I know that Lemtrada is not risk free (but what drug is?) but I think it’s the better drug. Plus I’ve seen what it’s done for my friend who did the trial. It’s hard not to feel jealous when she’s going all over the place whilst I’ve probably been out about five times in the last six months apart from work and appointments! I’m not beat yet though. Tysabri is out for me anyway - I’ve already been told by an MS nurse at Addenbrookes - as I have no active lesions. Really praying Lemtrada won’t be for the same reason - I’m going to put up a bloody good fight!
Aren’t the statistics higher for tysabri being more affective though? My neurologist gave me the statistics at being 67% at reducing relapses for tysabri and 55% for campath on a 2 year study basis. I know the risk of pml with tysabri but it’s a small risk and increases over the period in which you’ve been on the drug and wether your JC negative or positive. The risks on the paperwork for the campath I was given by the neurologist seemed a lot worse and there is a risk of death with campath too. The list of risks for campath against tysabri was much longer which surprised me. I’ve got an option of this drug next year if tysabri doesn’t do it’s job but the side effects are scary!
been on copaxone for over a year now, think i want this campath/alemtuzumab. You think they will give it to me? or will i have to whinge the face off them?
On the campath Tysabri thing, I’m on Ty, and it was being discussed at my last infusion. The nurse there said that campath is only 40something% (can’t remember exactly) effective, whilst Ty is closer 67%, and new studies are showing it may even be in the 90’s% at reducing relapses. You can also go from Ty to campath, but not from campath to Tysabri (don’t know why). With all the horrible side effects (she was saying it really does make you feel dreadful when you’re in, not surprising as it’s used for treating cancer too I guess), I’m inclinced to hang tight until more people have been given the drug, and more is known about it. The accuracy always improves over time.
Forestmistheater exactly my point! I don’t understand why people would choose a drug that is only around 50-55% odds at reducing relapses with a lot more side effects than tysabri that’s around 67% odds at reducing relapses with less side effects. I thought I was missing something because everyone was going on about campath so much but when my neuro have me the statistics and the information in black and white tysabri kicks campath a butt!
Well, if there is a “fifteen year rule”, I really need the best option available to me as I’m thirteen years diagnosed. And, like I said, I’ve already been told Tysabri is not an option for me. Lots to discuss though at my Addenbrookes appointment three weeks tomorrow with a new neurologist. I’ll have been off Gilenya for twelve weeks at that point and need something as soon as possible to try and give me my life back. Can anyone shed any light on this “fifteen year rule”…?
I think some of it is a lifestyle choice as well though. I can only have Ty because my work will work around it. Not everybody has that, and not everyone wants to be tied to an infusion every month. I had to miss a family wedding for it this month, so it has it’s down sides. It’s just weighting stuff up. As for the 15 year thing, I don’t know - maybe try lookinng up the NICE guidelines. If it exists, they’ll tell you.
Forest x
Thanks. I’ve had a look through on their website but I can’t see anything. I’m sure I’ll find out when I go to Addenbrookes and actually get to speak to a neurologist about what is actually on offer to me.
Hi all, Sorry, should have been clearer. I use this board because lived up in the uk up until a few months ago and it is still where I feel most comfortable coming of for advice. But am in canada now since the new year and that is where I have been offered the drug. The 15 year rule might be unique to here… Was told there was some science behind it, but I reckon there might be a cost cutting issue behind it too. Might be worth asking your neuro about it just in case. I am on the rrms turning progressive edge and I think that is why it is being offered. My neuro is telling me it is the absolute best, better than tysabri, but I am going to really investigate further as reading all this, this is being questioned. The lit I have been given on lemtrada also notes a risk of PML. Thank you all for your help and advice. Still haven’t made up my mind but this has been really useful. Stay well x
Sorry, cant get there.
Hi RR,
I THINK THE 15 YEAR REFERS TO BENIGN MS.
Benign MS is not really a ‘type’ of MS as such. It begins with an initial attack that leads to a diagnosis of MS but then symptoms subside and there is no further activity and no serious disability. This complete recovery is known as remission. However, this does not mean that the MS will always be completely inactive. Further relapses can take place; they may be infrequent, sometimes a number of years apart, or symptoms may worsen in later life. By its very nature, benign MS can only be diagnosed after a long period of time with little disease activity. Estimates as to the number of people who have benign MS vary from 5% to 20%.
G
Thanks for the input G. I understand benign MS but I was referring to a specific point made by another poster that said you can’t have Lentrada if you’ve been diagnosed for more than fifteen years. This has now been clarified that this was said by a Canadian neurologist.