New diagnosis

Hi. Well after nearly a year of waiting, I finally had my diagnosis through today. Now my prognosis is good because it’s been caught early and it affects my nerves and not my mobility which apparently is a good thing. Just wondering what are the best drugs to take with the least side affects and better prognosis for warding off MS? Thank you.

Hi Chezy,

Sorry to read about your diagnosis. I received my own in June. My symptoms to date have been numb toes (cleared up with steroids) - but my initial scan (March) showed a fair few lesions and a second scan (June) showed one new one (no new symptoms) indicating the disease was active.

I decided that, even though my symptoms are mild, there is no such thing as mild MS. I wasn’t going to bet my chips on being one of the lucky 10-15% who can look back in hindsight and say their disease was benign - especially as benign MS frequently turns progressive eventually. I also wasn’t prepared to pay what felt like a game of Russian roulette with my brain, hoping that the next lesion wouldn’t be the one to do some more debilitating damage and slowly loosing my neural reserve through brain atrophy in the meantime.

As as a result I’ve decided side effects be damned (!) im going for the most effective treatment I can get - which for me was Lemtrada. I had my first round of infusions in August and am just coming up to 3 weeks post treatment. I’m back at work and back to the gym and feeling good. However, it is very early days and one of the downsides of Lemtrada is that it is the only licenced DMD where you can’t undo wanted side effects by stopping the treatment. Once it is in there is no taking it back out. The list of side effects is reasonably scary at first blush (e.g. a one-in-three risk of a thyroid problem) and you have to agree to a five year monitoring programme (monthly blood and urine samples) to look out for these side effects. However, this should mean they can be caught early and be simply managed. For me, for the reasons above, these were risks worth taking. I would far sooner manage a thyroid problem than have my MS progress unchecked.

One of the problems with the DMDs is that they hold fast to a risk/ reward scale. The more effective the drug the more potential side effects. Unfortunately, there isn’t a risk free option for us. Taking no DMD means accepting the greater risks associated with MS. Choosing the right one is a tough and personal choice.

If haven’t found it, the MS Decisions Toolkit on the MS Trust website has a good breakdown of the drugs in the UK and the stage your MS needs to be at to be eligible for each one. It also has information on other factors, such as ease of administration, side effects and whether the drug can be taken in pregnancy.

If you are interested in Lemtrada I’m very happy to talk through my recent/ on going experiances. The best resources for me on this drug are:

  • David’s Campath Journey (12 year blog summarising the experience of a chap in the original trial. This gave me hope when I was first diagnosed)

  • blog from Tracy Doust (Tracy D’s Lemtrada Journey) (very detailed blog from a lady who has just had her second round of treatment and is doing brilliantly. The blog is also an e-book (proceeds go to shift MS))

  • Lemtrada (Alemtuzumab) treatment of MS in the UK facebook group (closed group of people considering, going through and living post treatment. Super helpful and positive)

  • Barts Blog (medical researcher and neurologist views on the different treatments, including Lemtrada and pipeline drugs)

Am sure others will be along shortly to talk about their experiences with different drugs.

Hope some of that was useful!

Good luck!

Xx

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hi chezzy

i take tecfidera - 2 tablets a day.

it carries a risk of the same disorder caused by tysabri (sorry - the words run away as soon as i try to type them).

it is managed by being seen by a ms nurse every 3 months.

i feel confident that my safety is being taken seriously.

i was on copaxone daily injections for 6 years until my injection sites became a mess.

it is a very personal decision, which at the time i wished someone would make for me.

i asked my ms nurse how she would decide and was given some guidance.

what i ended up doing was looking at the different side effects and eliminating the ones that i couldnt stand the sound of.

narrowing it down to 3 and finally choosing.

take your time making your choice.

carole x

Hi chezzy

​i too am just newly diagnosed and about to enter the minefield of what DMD to take. Today I’ve received my appointment with ms nurse 10th October. Was also sent out info pack on the various drugs so got some reading to do. Unfortunately Lemtrada info wasn’t sent out so I’m not sure if this is an option for me in Glasgow. This was the one I would have gone for without a doubt and I will ask about it when I meet with nurse. Neuro wants to hit it hard so I’m hoping they’ll give me it

mags

Hi Chezy (and Kenzie)

Have a look at MS Decisions | MS Trust which Katy mentioned. The idea of the decision tool is that it gives you the merits and potential risks of each drug.

Generally Lemtrada is only given to people with highly active RRMS, which is why Katy’s been given it. I totally agree with her decision to hit the MS with the biggest stick available (ie the most effective DMD that you’re offered). The potential side effects should always be weighed up of course. The risk of PML from Tysabri and Tecfidera is now extremely low, since with Tysabri, you’re tested for the JCV antibodies and given a real idea of your personal risk factor, and with Tecfidera your lymphocyte level is checked regularly.

It’s entirely possible that any given hospital doesn’t offer every single treatment, but if you have highly active MS and would otherwise fulfil the criteria for Lemtrada, it’s possible to be referred to another hospital where they do offer it. And in Glasgow there must be at least one hospital set up for it. After all, the proportion of people with MS in Scotland is very high.

There will always be people who are particularly keen on one drug as opposed to others, both individuals on this site and neurologists. Try to get a good overview of each drug if you can, look at its effectiveness, weigh up the risks and potential side effects and think about what will fit into your lifestyle best. Then ask your neurologist / MS nurse if it’s possible for you to have drug A or drug B, depending on what you prefer.

The days should be well behind us when we used to either be told, “this is the drug you will take”, with no options given; or “here are some videos/booklets about 4 drugs (the 3 beta interferons plus Copaxone), pick one, they all have about the same reduction in relapse rate”. (This was the option I was given 15 years ago!)

Nowadays, the choice is much wider, but that can make things quite confusing.

Best of luck with the decision.

Sue

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Hello!

Lemtrada is licenced for use as a first line DMD in the UK for anyone with “active” RRMS (so the same test as for techfidera). However, neuros seem to vary as to whether they are prepared to prescribe it as a first line drug for people with only “active” (two relapses in two years) (as oppose to “highly active” (two relapses in one year)) or people with mild symptoms. There flexibility to do this is reflected in the 2015 ABN guidelines on prescribing for MS where, as Sue suggests, it is noted that neuros may want to hold Lemtrada back for more aggressive disease.

I’m formally only “active” - not highly active. I’ve been pretty lucky as my neuro has supported my push for aggressive treatment notwithstanding that I’ve only had one definitive MS relapse (numb toes for a few week). We used the new lesion on my second MRI as evidence of a “active disease”. My neuro was also prepared to suggest that an episode of vertigo I had the previous year (diagnosed as BPPV at the time and seemingly fixed by epley (physio for the inner ear)) was probably an undiagnosed initial relapse as further supporting evidence of an “active” label.

I was very clear from the outset that I wanted lemtrada, and could show that I understood both the risks and the benefits, and so my neuro was prepared to support this decision.

The Lemtrada facebook group has a number of people in a similar position as me - recently diagnosed with mild symptoms and “active” disease. Some of them have had to push their neuros harder for the treatment than I did - but they did get there.

So my advice would be if you have active RRMS and you want lemtrada, let your MS nurse upfront and be clear that you understand the risks.

Good luck!

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I think you’re absolutely right to go for the Lemtrada. I went to a lecture about it soon after my diagnosis in about 2002/3 (when it was still called Campath and had only been given to a couple of people, it was that new). I emailed Dr Coles who gave the lecture (the Cambridge neuroscientist who developed it) to ask if there was any possibility of getting it. Sadly, it was very early days for the drug, and it didn’t get a license for a good long while - more than 10 years went by before it was approved by NICE. By which time it was too late for me, notwithstanding that I probably would never have been a candidate for it as I’d already had an overactive thyroid.

So I am firmly in your camp, you’re fortunate to have a good neurologist who’s supported your choice of DMD. In my opinion, more neuros should behave like this. Making the case for the strongest drugs, where the patient understands the risks and is very positive about the therapy.

Sue

Hi. Thank you for all of your replies and advice :-). When I saw the neurologist, he said the interferon dmd would be the best ones for me. I’ve had two attacks in 2 nearly 3 years. My second one left me with on and off numbness down my left side but I have dealt with by getting healthier :-). I have my appointment on the 13th October moved forward from December. I only have 2 or 3 lesions in my spine s it’s very early onset. Would this be closed as rrms? Xx