Freaking out about tecfidera

Everyday living
21

Thanks for all the advice and saying a bit about your own situations and opinions on Tec, it really has made me feel a lot more grounded and in control of my feelings and just a lot better! So thank you. It really does make me realise the importance of talking to fellow MS sufferers. I know no one that has MS and even though my friends and family are extremely supportive and are there for me, from what I know they also don’t know anyone with MS so sometimes I feel like a duck out of water really.

Hearing from all of you really does make me feel less alone, and that this is manageable.

I’ve thought a lot about Tec and done quite a lot of reading and am now coming round to the idea of it, I don’t think I’d ever forgive myself really if I had an awful episode and I had decided against it, that risk I guess is just not worth it in the long run, and if I have awful side effects I can always stop it.

My parents live in America and I am going out to visit them in 3 weeks where I am also going on a mini holiday with a friend who lives out there to Vegas (very exciting). However, I am now a bit apprehensive of going to Vegas just having started Tec and having to deal with any side effects out there. Also I am not planning to drink huge amounts but it does unnerve me drinking much at all at the beginning of this so I was wondering if you think it would make a huge difference if I held off starting Tec till when I’m back from Vegas at the beginning of July?

Thanks again,

Sophia x

22

As I’ve only just started taking mine, and I’m not on the full dose yet, I’m not sure how useful my opinion can be. How long are you meant to be on a lower dosage for? Mine is a week, but I’ve seen from what people on here have said that it varies.

If it was me, with my Tec experiences so far, I’d not be worried about going. But you’re not me so it doesn’t really count, does it, lol.

23

Hi Sophia. As another Teccie I just wanted to endorse what everyone has said. Do, do try it. I feel it’s a way of helping myself and having some insurance against the future.

Personally if it’s only about three weeks away I would start the Tec after my holiday. However I’m on the UK Facebook Tec group (do join, it’s very good) and I remember another member there asking peoples’ opinion about postponing starting Tec until after her holiday. She was told (fairly sharply, I thought) that she should get onto it immediately as it takes six months to properly work and get into your system so the sooner the better…Not sure I’d agree with that though.

You sound like you’re in the early stages of the emotional MS journey (I’m six months in and still on that road) where you haven’t yet come to terms with the diagnosis so don’t see why you should have treatment for it. Be kind to yourself…

Louise x

24

If it takes 6 months to work properly, not sure why my MS nurse would want me on it as in interim measure between Tysabri and Lemtrada. I feel I’m likely to be on Tec for 3 months, max? So I’m dubious about that, too.

25

I would defo start the Tec after your holoday - you dont really want to risk feeling bad on your hols - plus alcohol didnt agree with me when i started off…

Good news its fine now :smiley: :smiley: :smiley:

26

Hi everyone

My advise to everyone starting a DMD’ is just start it.

I would if I could but unfortunately I don’t fit the criteria yet, was dx in Dec2010 with loss of co-ordination of r side of body which after 3/4 weeks eventually returned almost back to normal , but I can feel that I have ms if that makes sense.

Ive also had sensory symptoms on and off and this year have had Optic Nuritus which also returned to normal after 3 daysThen in June this year had balance issues for two weeks.

I have a new Nuro who seems to be on the ball as he said as soon as I get anything else to ring Ms nurse immediately.

What area do you lot live In, maybe it’s a different one to mine, Im in Wiltshire .

Im keeping my fingers crossed that none of your side effects are too bad .

Annx

27

I’m in Lincolnshire but my neuro’s based in Sheffield, I’d be interested to know just how big an area he covers! I think he’s only in Lincoln for a couple of days a month.

28

Dear Smurphy4

I think if it were me I would start after my holiday, especially if you are worried about side effects - this is a marathon rather than a sprint.

for what it’s worth, I am on my fourth week on Tecfidera. I was told to take 25% for two weeks, then 50% for two weeks - so next week I will be on 100%. So far I have had zero side effects - nothing - and I haven’t been particularly careful about what food, or how much food, I take it with.

But I had a bad time on Avonex - which some people have found to be fine.

I think there may be a need to try options before finding the right one - but in principle I am persuaded that if DMDs are offered, it is wise to take them.

best wishes with everything

David

29

From reading all of the other posts, here is my opinion (and that is all, so take it for what it is worth):

a vacation is no excuse to postpone starting something that might help you for the rest of your life. it is true that this battle is a marathon more than a sprint, but the reasoning for the postponement of therapy is the fear of side effects. these side effects are so minimal, if not completely absent, that you will find they were a poor excuse to deprive yourself. but ultimately, it will be as you prefer. a vacation is to be enjoyed after all.

the starting of a new drug should be done promptly, but conversely, the increase of dosage to 100% of Tecfidera should be drawn out. I would definitely NOT endorse getting up to 100% within a week or two, even if you are initially side effect free.

your body requires time to get acquainted to this new ‘dietary supplement’. that you start it is good enough. but as with all things, each person (and their body) is different. you will probably suffer no side effects at all.

with this in mind, my usual (virtually) fat free diet, and enjoyment of alcoholic rehydration have continued without amendment nor ill-effect.

the claim that tecfidera needs to accumulate in the body over a period of six months before it is beneficial is something i have not heard of before. also, considering that tecfidera has a very brief residency time in your body (ie. it is completely out of your blood system after a mere matter of hours) would suggest someone is full of expletive.

I expect that nugget of mistruth is merely to motivate those suffering side effects through the early days; ie. “here are your drugs; take too much too soon, feel like crap but persist with it; in six months it will work and your body will have grown a tolerance to it.” this strategy will probably work, but there is a much less uncomfortable method available (from my personal experience of taking this narc for over 9 months now).

the brief residency also means that if you do suffer unbearable side effects, you can stop taking the drug and you will recover in less time than it takes to rid yourself of a hangover!

at the end of the day; tecfidera is good for you. the things that frighten you will be no where near as bad as you expect. you will kick yourself later if you do not start ASAP and you have a relapse.

fortune favours the brave. good luck and all the absolute very best!

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30

My entry from September last year was just like yours. Stared at tecfidera for weeks, too scared to try. When i finally did, nothing happened. Ever. No side effect at all! It can work this way. Give it a shot, not literally, that’s the beauty of oral tecfidera.

31

Hi. Thanks for this thread,

I’m awaiting delivery (next Saturday) of my Tec, its pretty scary, as someone who hasn’t even touched even an aspirin (allergies) in 20 years, taking the amount of drugs I have been prescribed (I’m on neurtriptolin for pain) is a bit of a shock! I would seek the advise of your ms nurse about delaying until post holiday. I had 2 weeks of being back and forth on trips and was told by my ms neuro that it would be preferable that i was within the uk whilst my body adjusted. Enjoy your trip and fingers crossed that we ddon’t have too many problems acclimatising!!
eac(((a

32

I’m not sure what happened at the end of my post above!!

33

I was diagnosed with MS in June . This has been a creepy journey. I know nothing about this nor how i got this . Im a dancer so im more concern on long i will be out . The symptom i got were the unsteady balance & not being able to walk for a long time. I feel as if the hospital made it worst by making me lay in bed for a week . Next Wednesday i should be starting my medication and hopefully everything goes well . I can’t lie & say that im not scared because i dont know what to expect. I havent been outside in months because of the embarrasement that have take place . Can someone give me a run down on this ?

34

Hi Rashaad3987 #.

Commiserations that you have joined the ranks of MSers but welcome!

Because this thread is old (started on the 11 June 2015) people may not notice your post. It may be better to start a new thread - the “New thread” button on the forum main page, Everyday living - MS Society UK | Forum.

re. "I know nothing about this nor how i got this "[MS]
The state of medical science seems to be that you have genes that made you susceptible to key environmental factors. Exactly which genes are not known - over a hundred have been identified so far. Also the environmental factors are not known beyond a few things that make the possibility more likely.

MS varies from person to person so it is certainly unsettling, to say the least!

My post will “bump” this thread so others with more (better) advice may see it, but it is probably best to start a new thread.

Best wishes!

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