Has anyone found that taking a DMD reduced their fatigue ?, if so which one helped you.? Also, has anyone tried Lemtrada/Campath & how did you find it ?
My consultant feels I should be on a drug but he is very laid back about which one I should take saying it is all personal preference! He said none of them are designed to help with fatigue (which is my main ongoing symptom).
There has been much in the news recently re Lemtrada and I am tempted to try it as I am hopeless at inections, forget to take pills and to be honest I like the idea of only having to endure 5 days infusions in year 1 and 3 days in year two and then I can just get on with my life and daily living without the constant reminder of how I have MS.
I have accepted I have this condition but I really don’t want to be reminded of it with a regime of daily or weekly medication. Also I find it hard to accept that there is nothing that will improve the fatigue. I take modafinil which helps but if I take it too frequently it is not effective, I pace myself, have altered my working life and sleep for England! I can’t get through any day now without the fatigue getting to me hard.
Hey ho, such is life ! any thoughts greatly appreciated.
From talking to other people with MS on DMDs, sometimes they can feel more fatigued due to the side effects of the DMDs I know I can feel a lot worse thw day after an injection of Rebid. Sadly not much to take to try to help and what there is might not work or wear off quickly
Rebif massively helped my fatigue which was utterly crippling at one point - some days I would spend 18 hours asleep although I was trying to renovate a house, work full time and have a long distance relationship! A neurologist told me it wasn’t supposed to help fatigue but it really did as I could do so much stuff after about three months of being on it.
Gilenya has been reported to increase fatigue but I never found that - it just made me relapse all the time!
I’m at Addenbrookes on Friday and I’m going to be pushing for Lemtrada. I’m currently not on a DMD (now twelve weeks) and I’m really feeling it - in a constant state of exhaustion.
I’ve been on tysabri for nearly 3 years. It hasn’t helped with fatigue at all - in fact I am completely knocked out for several days after the infusion.
Finding anyone who is on Lemtrada is a bit like looking for a needle in a haystack at the moment with it not freely being prescribed yet although I know someone who did the trial and she hasn’t had a relapse since her first blast in December 2009 (she was previously relapsing every three months)
Hi, was wondering if anyone out there has started a lemtrada? I’ve got very active relapsing remitting(3 in a year that we know of!) new lesions every MRI. I’ve been on tecfidera since Nov and am still getting new lesions so have been strongly advised to try lemtrada as my last option to stop anymore damage being done! Although my life’s completely changed in the past few years, my left side is mainly affected and fatigue is immense and constant, I’m scared. I know my immune system is bad. I get infections easily and often have bad reactions to new things! I just feel like if I don’t do this now, in 5 years time, when things may be worse, I’ll wish I’d tried it sooner.
I’ve had my first round of Lemtrada and finished it on the 14th April. The results have been great. I’m back in work, albeit on a reduced contract and lead a fairly normal life. The fatigue can be quite bad at times and there’s a bit of heaviness in my limbs, mostly arms at times. Compared to what I was like before the treatment though I’m like a different man. Personally I think it’s a good route to take, although I’m fairly new to this game after getting the diagnosis in January and starting the treatment in April. Good luck with the route you choose and feel free to message me with any questions you may have.
I am sat in hospital having my third of five days lemtrada/ campath. Have had no ill effects or rash so far. Fingers crossed that continues! Too early to say anything else about it. I am just very grateful to me having a chance to fight back.
Hi oneshot, I very sceptically tried stuff from America and after taking it for one month, my husband couldn’t believe how much more energy I had! I have been very pleasantly surprised how my heavy dead arm now feels normal, I don’t get as many headaches and brain fog has improved so much friends and family have actually commented on the improvement. It’s totally natural and can be taken alongside your medication, the great thing is I am now medication free You’re maybe not interested but if you’d like to know more send me a pm and I’ll send you the info.
I’ve been on Campath for three years now, previous to the first infusion I was literally having constant relapses despite being on Tysabri for over a year (and weekly injections of Interferons for 3 yrs before that). For the first five day infusion I was in a wheelchair when I went in the hospital and I was walking on crutches when I left a month later - though that might be the 2 wks of steroid infusion I had at the same time :). When I got my first infusion, Campath had not been approved for MS treatment yet and had actually been taken off the market to be re-branded so I was very lucky that my neuro was able to get his hands on some (I had to travel from Glasgow to Birmingham for the second treatment as it wasn’t approved for use in Scotland until the following year). The treatment now involves a 6 month course of anti-viral medication during and after, allergy medication during and the infusion of campath is immediately preceded by a steroid infusion making the total time you’re tied to the machine a whopping six hours a day! The first time I was given Campath they were still working out the procedure so the steroids were administered for five days prior as well as during so thank god they trimmed that down, lol.
After the first infusion I was relapse free for two years, a massive improvement as I had been relapsing at least every 3 months since 2007 - being able to walk for the last 2 Christmas’s has been a joy as before that was the period for my worst relapses. I had a third course this year as I had a minor relapse involving my sight and my nuero thought it best to have another round just in case.
I can’t praise Campath highly enough, it has been a life saver for me and I have not had any side effects so far - the worst side effects I’ve had have been from the IV steroids you get along with the Campath I have noticed some improvements in the damage relapses have left, and my nuero tells me that my last brain scan showed no new lesions as well as some improvement on old ones, so it was definitely a good decision for me to risk the side effects. Monthly blood tests for four years after a treatment seems like a small price to pay for me.
I still have fatigue symptoms but my doc put me on Amantidine which works great for me - I’m now an early riser and able to handle light housework for the first time in years Apparently Amantidine is for Parkinsons but has been shown to be effective for fatigue symptoms in MS, but it doesn’t work for everyone so doesn’t get prescribed much.
Hope all this blather helps, sorry for rattling on
TBH, I think your best bet is to concentrate on damping down disease activity. My own experience is that life is just a lot easier when my MS is quiet than when it is active - and that tends to correlate roughly with fatigue levels too. Not perfectly, but sort of.
I would be asking my neurologist what she/he thought was the most effective option for me, considering how my MS was behaving, and go for that one. If there isn’t anything that has a primary effect on fatigue - and there isn’t, I don’t think - then the best thing is to knock the MS activity on the head and hope that improvement in energy levels will flow from that.
Good luck.
ALison
p.s. don’t be tempted to stop the modafinil if you think it is doing you any good at all. It is becoming awfully difficult to get hold of for people who aren’t lucky enough to be on it already.
I saw a neurologist once who put the decision in exactly those terms. He said “if you were my sister I’d recommend you go on Tysabri rather than Gilenya”. At the time I had been referred to him because he had a Gilenya clinic set up which my Neuro didn’t then (he does now). I went on Tysabri after a long wait, and had severe liver problems with it and had to stop!!! So some doctors do see things and recommend effectively, but in the long run it’s not always helpful!
My neurologist said (today) that he thought it would “not be unreasonable” for me to try Lemtrada. I have been on Tysabri for 4 years. In that time, I have gone from being able to walk with one stick and cycle and drive to only being able to walk (very slowly) with two sticks and not drive or cycle. I am very scared about what is going to happen to me next, if I don’t change anything. Also pretty scared about having Lemtrada.
I’ve not been on here since diagnosed last May, but I have had one course of Campath, my second this summer, and have not had a relapse, from having some very aggressive ones at the start of my journey in Feb last year. It is an expensive treatment, but now re-branded the support and monitoring are highly evolved and important to the drug company (and to you) so am giving blood monthly and self monitoring for SE’s. But if you can get it, do it. It is an early doors preventative of further disabling effects of attacks, and any of the side effects are treatable and worth risking for the sake of working limbs/eyes or whatever could be affected in an attack.
Sorry if this is long forgotten or dead discussion from 6 months ago, but I was just looking for any content relevant to my treatment and thought would chip in.
is lemetrada often offered as a first DMD? I have just been diagnosed so haven’t spoken to any specialists about DMD yet, (app with ms nurse isn’t until end of April, and ms specialist won’t be until after that!) but because of my age (I’m only 24) and my resonably quick diagnosis (first symptom sept 2015, do March 2016) I am hoping they will support my case for lemetrada. Though i haven’t been too badly affected I see this as the best way to keep this thing at bay…but is there a best way to approach this without coming out all guns blazing? I am in Scotland if that helps! I’m
I ended up under Addenbrookes care as I live near Cambridge, the site of the development of Campath for almost 40 years. So I guess this was lucky for me, I was actively pushed to get on the program for my best chances, but also for their research, and now Genzyme’s as they own Lemtrada. I have heard mention of this postcode lottery aspect, but this suggestion for me came straight after quick diagnosis from my Neurologist (diagnosed in May from major attack in Feb) and was on the course by August. This may have been luck in timing/location on my part as Lemtrada had JUST gone to market. I know each 2mg infusion costs £11,000 so I will have done 8 by the end of august. Take it up with the nurse then specialist, if they can get you on it I am sure they will, good luck!
The MS Decisions page says it is highly effective. It is for active relapsing remitting MS.
I asked my MS nurse 15 months ago if I can go on Lemtrada and was told it would be considered if other DMT’s didn’t work. This was incorrect advice. I think it was more to do with the higher cost initially.
I’m in a similar (ish) position - I’m currently “only” CIS but with numerous brain lesions (dawsons fingers), a lesion on my brain stem and lots on my spine (including some enhanced active ones and dull ones), I’ve been told full diagnosis is very likely. The only symptoms clearly linked to the lesions are pins and needles in my foot. However, I had an episode of vertigo last summer. My GP diagnosed this as BPPV - but the neuro is querying whether this was in fact my first attack caused by the brain stem lesion.
My tingling toes were a month ago. In the last four weeks I’ve had 2 MRIs, two appointments with normal neuro, an appointment with the MS specialist neuro and seen my GP. My reaction to all this has been to research everything I can about how this disease can be managed. I had a productive initial discussion with the MS neuro about drugs and we are due to have a follow up talk in three weeks. Lemtrada was discussed.
If Lemtrada is available I’m pretty sure that’s the option I want - notwithstanding the “mild” clinical symptoms I have to date. I’ve read a lot about the increased efficacy if the treatment is taken early - and have no desire to see what damage my next lesion can cause or wait for further brain atrophy. The side effects are a pretty scary list - but the regular blood tests help identify issues early so they can be managed. I understand in order for Lemtrada to be available you need an “active” RRMS diagnosis - which requires two relapses over two years. I’m hoping I can count my vertigo (rather than having to see what the next round of relapse Russian roulette brings).
I’m reading what I can about the treatment to make my case, and make sure I fully understand the risks. If you haven’t found it yet, there is a very helpful Facebook group for people going through/ considering treatment in the UK (it’s a closed group so you need to request to join and then the admin check out why you are interested). It is full of people asking questions on treatment and side effects, and giving updates on the progress they’ve seen (positive and negative). There is a lady who has written a very full blog of her journey through Lemtrada - which she had proscribed as her first DMD (Google “Tracey’s Lemtrada story”). She is just coming up for her second infusion and doing well. And my favourite is “David’s Campath Story” - a blog written by a guy who took part in the original UK trials 12 years ago - which offers a lot of hope.
If you have a diagnosis of CIS you can get a DMT though this is only an injectable DMT. Then you could start on the injectable and if you get a diagnosis of RRMS following a relapse then change DMT.
The other thing is if you have an MRI scan in six months from you last MRI scan and it shows new lesions you could be diagnosed RRMS that way. Even if you have no new relapse symptoms.
I know I can feel a lot worse thw day after an injection of Rebid. Sadly not much to take to try to help 
and what there is might not work or wear off quickly
You’re maybe not interested but if you’d like to know more send me a pm and I’ll send you the info.