Yes - thanks Lenney. I’m seeing my neuro in 3 weeks and am booked in for a further MRI in 2 months. I’m quite keen to skip the injectibles stage and go for induction therapy given MRI activity. Recognise that NICE guidelines need to be kept to. For the moment, and pending my referral back to my MS neuro to his NHS practice, the CIS diagnosis is helpful from an insurance perspective. If that is where the diagnosis remains then I’ll crack on with an injectable and then escalate as necessary. Otherwise, I’m keen to push for the good stuff ASAP.
All this watch and wait stuff is killing me though (and I realise I’ve had a pretty speedy experience compared to many). Have been researching what I can do to look after myself beyond DMDs. So far im taking Vit D3, B12 and Omega3 fish oils. In terms of diet, it was pretty healthy anyway and I’ve decided to stick with a balanced healthy diet, with more of the good natural stuff (in particular fish and flaxseed (and lots of veg)) and less of the bad processed stuff (refined sugars, gluten and heavy dairy) without excluding anything (as think I would struggle with the Swank/ OMS diets etc). I go to the gym regularly any way - so sticking with that- but adding a Pilates class (for core) and boxing drills with my trainer (for fitness, cognitive speed and anger management!). I’ve also got a “brain training” app for my daily commute to try and keep the brain fog away.
Very interested to hear if anyone else has any good tips / dietary supplements to help (try to) control this.
k x
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To me, an old lag, (diagnosed 2000), you seem to be doing all the right stuff. I was diagnosed in 4 hours.! It’s taken a few years, down, then a bit of recovery and then more MS illness.
Touch wood, I’m doing really well at the moment. The problem with ms, is that this can change very quickly. I hope you get a diagnosis soon and good treatment choices.
xx
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Thank you. Keep well. K x
Hi there. I was diagnosed in June and am on week 4 of rebif. I am struggling with the flu symptoms and fatigue. I thought if I took it at night I could sleep through the symptoms but it seems to be reacting the following day now. I am (or was) a keen runner and was training for my first half marathon but every training session I have takes a good 2/3 days to recover from so I have had to withdraw. Anyone else taking rebif and have any advice on diet and exercise?
Many thanks
In your shoes, I wouldn’t soldier on for too much longer before flagging up your problems to the MS nurse/neurologist. Rebif isn’t the only DMD show in town, and if it doesn’t agree with you there are others to try.
Alison
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Thanks Alison. The only concern is the side effects of the tablet form are worse than the injection from what I have read. I originally chose avonex but was advised to use rebif as it is clinically more effective. How long do you need to try these things for. My nurse was very clear that if I change I would have to wait 6 months before taking a new treatment???
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I changed from Extavia (interferon beta as is Rebif but made differently) to DMF (Tecfidera) (a pill). My switch was only couple of days. Tec side effects for me are just a very slight flush to my face.
I reckon your nurse is wrong. The only reason you’d have to wait a while before going onto a different DMD is if you had side effects that weren’t clearing up after you’d stopped the drug that gave you the unwanted effects. For eg, I had raised liver enzymes from Tysabri, I couldn’t start a new drug until my liver was better. Also, some people have lowered lymphocytes from Tecfidera, which need to recover before a new drug can be started (me included).
Generally, if you go from a beta interferon, that’s just not as effective as you want it to be, the switchover is immediate. I went from Avonex to Copaxone with no gap. Most people go from an interferon to Tecfidera seamlessly.
Sue
Thank you both. I will make contact with the the nurse as I am struggling with symptoms 2 days after injections which can’t be right.
Well, it might be that the overall statistical likelihood of nasty sides is greater for the tablets in theory, but in practice it seems that in your case the chance of nasty sides from injectables (one of them, anyway) is 100%!
For sure, they don’t want people chopping and changing before giving drugs a fair go, and quite right too. But I don’t understand the ‘6 months’ business when it has become clear that a change reallty is needed. If that is a clinical necessity (flushing out one drug before starting another), that’s one thing (although I would be surprised if it were - I had only a few weeks’ gap between stopping Avonex after 10 years and starting Tysabri, for goodness’ sake!). If it’s just how long it takes for them to deal with the paperwork, than 6 months is way too long to be acceptable, in my view, and I would question it.
Alison
Hi,
I can’t help massively with the fatigue problem, as I suffer with this myself (albeit it can be fairly mild - so I can’t complain!). But I feel I am completely in the same boat as you with the Lemtrada. I’ve been on Techfidera since March 2015 and recently have stopped taking it as the side effects were making me suffer terribly!
However I went for a medication review on Tuesday with a new nurse I hadn’t seen before - and basically the only other meds I’d even consider is the Lemtrada - the benefits of it seem amazing, and like you say; the prospect of a ‘normal’ life no tablets injections seems amazing. BUT the risks scare the hell out of me!!! I work at a hospital, so it makes me think I’d need to be off work for quite a while if I’m an infection risk?! My brain just feels fried!
Do you think that maybe in time your fatigue would improve after the Lemtrada though? I imagine it would take maybe even a couple of years?
I find my nurses/consultants are all very vague and it is very annoying!!!
Lauren xx
Having had my second course of Campath in August and no other DMD, I can confirm; a reduced feeling of old symptoms (hand/leg drag/slurred speech) and decreased fatigue. I run around after a 3 year old and do the school run for a 6 year old + housework/shopping etc. I now have 4 years of side effect monitoring, but who begrudges a full blood screening every month as you enter your forties?
That said plenty of common sense things all help to make me feel better (on top of the treatment for which I am eternally grateful) -
A diet with no (or little) refined sugars/pastry
plenty of oily fish/nuts/fresh fruit and vegtables.
Portion control and reduction in wheat intake
Easy on the booze/late nights
Not over doing freetime exercise (occasional run and use of vibroplate)
Omega 3/6 and vit D supplements.
A positive mental attitude. Considering Why Not Me instead of Why Me? Recognising how lucky you are to have the things you can do and not dwell on those you may have lost.
Very helpful wife/parents/in-laws.
But all these require (a frequently absent) willpower and effort.
I wish you all luck in your quest for Campath if you are just diagnosed and your area can afford it. And everyone else: that you find or have the DMD/lifestyle that works for you.
x D
Hi!
Im going to start Lemtrada on 31st October as my first DMT after being diagnosed with RRMS in March, has anyone got any advice? Im a bit worried about it as it seems pretty harsh! Thanks 
Hello,
I’m 5 weeks post round 1. People’s experiences of Lemtrada/ recovery are much like our MS - highly individualised. However, from what I’ve seen most people seem to do pretty well pretty quickly - and don’t have too many problems whilst receiving the infusions themselves. There is a facebook group for people considering/ undergoing treatment Lemtrada for MS in the UK which is a great place to see a spread of people’s experiances, talk to people treated at the same hospital you will be to know what to expect (each hospital has a slightly different protocol) and touch base with people who will be receiving treatment at the same time as you (so you can cheer each other on, count down the days together and swap rash photos (!)).
For what it is worth, my experience has been very positive. I was treated at Kings as an in-patient. Save for a bit of a head ache and tiredness (helped by drinking lots of water) and the mother of all rashes for a couple of days I had no issues with the infusion itself (other than boredom - breaking bad on Netflix was a life saver!). I decided to follow my nurses advice and latke two clear weeks off work post treatment to avoid the germy london commute for at least the initial stage. Whilst I was tired for a couple of days, I felt pretty strong pretty quickly and was back out running Parkrun in the second week. I’ve now been back at work and the germy gym for three weeks and so far so good. My personal trainer also confirmed I’ve not lost too much strength/ stamina from receiving the treatment and time off. I had my first round of monthly bloods taken but no results yet. Fingers crossed! Taking each day as it comes as recovery may not be linear and side effects have 5 years to show themselves but for today I feel well and positive.
Good luck!
Oh and both years the time write off was about a week post treatment. Week after (2nd week of August) could potter, then the next week (mid August) back on the beat.
Pre - treatment - get lots of books, a pre film loaded tablet (in case of no Wi Fi) a notepad. Fruit/vegtable crisps (and my guilty boost was granola bars in case you miss a hospital meal or the gap is too long). Some mints for the metal steroid taste, but ensure you get regular water jugs, as soon as they come NECK THEM! You will end up unplugging and weeing all day, but it keeps your temperature and blood sugar (and lurgies in your urine) down. Avoid snacking on sweets/chocolate, they may feel like a sugar pick me up, but steroids will make your blood sugar spike and could make them re-think your readiness to start infusions.
It’s like a really boring flight (made better with a good flying partner) where you end up where you started 6-8 hours later. Get on the nurses to get your cannula in, first bloods and urine taken so when the consultant swans in to ok your meds you are ready. Otherwise the hours can tick by and you are sitting there getting forgotten about as you are non-priority (if the infusion room is on ward like at Addenbrookes).
Look into staying in the hospital grounds to save ferrying everyday - you won’t be able to drive at the end. Arrange drop off and pick up, and if you can afford it a hotel, but if not (like me) addenbrookes has a hostel within the student buildings you can stay in for free if you pre-arrange. They are basic and clean. Get your canula wrapped and sealed well to save having a new one everyday…you can get 3 days out of one so you can avoid what is the worst bit for me of good vein finding and jabbing. Also get a rubber glove for showering.
Hope this helps! x D x
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Hi all havnt been on here for ages, recap, diagnosed in june 2012, started avonex, changed due to on going side effects, commenced on plegridy and had to stop due to adverse skin reaction. I have not been on any disease modifying drugs since April. I feel Okish I suppose. Going to see neurologist on the 11th to discuss future treatment options. Any advice would be appreciated
Ta
I am extremely frustrated with the feeling day in and day out fatigue…I HATE IT!!
I found these at Walmart that I want to try and see if they help…TRP Chronic Fatigue Therapy - 70 tablets for $12.98 …After I try them out, I will let you guys know if they help or not…
I had my second shot of Lemtrada last November, first treatment i was offered after diagnosis, as for just having it and forgetting not so true you have to monthly bloods to monitor you, but defiantly worth having although i was ill through Xmas due to no immune system for 3 months, so much i could type about it and the fatigue side but would take forever, if you want to know more about how it worked for me im more than happy to forward my Number via PM and chat if you like
Hi there I’m currently on Avonex inject once a week were looking at changing to plegredy which will be to inject every second week hopefully this will help me with the side effects anyway I started drinking a cup of hot thyme ( fresh every morning i started to feel better after about 4 weeks the fatiugue wasn’t as bad I drink it every day with out fail it really helps and I havnt had any infections coughs or colds been drinking it for almost a year hope this helps x