Freaking out about tecfidera

Everyday living
1

Hi everyone,

Hope you’re all well and enjoying the weather.

I went to see my MS nurse yesterday and have been given my first batch of Tecfidera and am meant to be starting today. I was absolutely fine yesterday but now the time has come and I am freaking out.

I really really don’t want to start this medication. It sounds horrible and scary and people don’t seem to have the best experience on it. I am sure that some people are absolutely fine on this medication but it is still freaking me out.

I stupidly started looking into Tec and weight gain and a lot of people seem to have commented on this being an issue. I know it sounds stupid and vain but sadly it’s something that matters to me a lot. I used to have eating problems and issues and in the last couple of years I’ve managed to banish those demons and not go back down the eating disorder path but I am just so scared that weight gain could be the trigger to send me back there. Sorry if this just sounds so stupid.

I still don’t really even feel I have MS. I know I do, I’m not in denial about that, but honestly (and I am so grateful believe me) my life has not altered too drastically since this journey all began. I was diagnosed a year ago after having vision problems and my neurologist believes I had my second episode last summer where I had some fatigue. Since then she has wanted me to start medication and after having a new MRI with more active lesions she has pushed me even more to start. I know I should take her advice but I feel fine at the moment! I really am so lucky that I have not got any symptoms really since my original loss of vision and part of me feels why should I put myself on such hard meds when I am really not effected by my MS at the moment?

Anyway, I just wanted to post this to see if anyone had any thoughts about this. If they think Tec is the right decision even though I have no symptoms or their own experience on it? Just any advice or anything would really help because I really am starting to freak myself out massively (from an hour googling, i now hate the internet)

Sophia x

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MS didn’t offer you the option of saying, ‘No thanks.’ With DMDs, you do have the option of saying, ‘No thanks,’ and of course it is tempting - what a nice change it makes to be invited to choose! But MS is a brutal and dangerous adversary, I’m afraid. I know that is hard to bear in mind when you are feeling well, but please do try.

It’s all a wretched business, I know. But please give yourself the best chance you can.

Alison

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Hi, I am on my fourth month of Tecfidera, it’s been ok so far, no major side effects. Just a little flushing (pink face for half an hour sometimes, about once every two weeks).

Some people have said taking the lower dose for a few weeks or month can be a more gentle introduction. I just had one week of the lower dose then onto the standard dose. I’ve not had any weight gain. I am underweight and am encouraging myself to eat more xx

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Silly question I know but what are dmd’s? I get flushing of the face and i currently take pregabalin, napraoxen, Tremadol,omeprazole, and mevbeverine, just want to clarify what dmd’s are?

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Hi smurphy,

There is a lot of discussions on here about Tec - including mine…

I suffered really badly from nausea, stomache cramps and feeling ill - lost 1 stone in weight… I nearly gave up but wanted to perservere…

Its now been 4weeks feeling fine - I started eating porridge in the morning which I dont know if that sorted the issues, but Im keeping it going :slight_smile:

My advice - you may suffer from some side-effects, you may not - but if you can try and get through them with advice from other people and threads on here…

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dmd = disease modifying drugs like tecfidera, copaxone, etc

also you may not be feeling much changes but sometimes you may not feel anything or not notice it… taking dmds will help but its your choice :slight_smile:

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Hi all,

Thanks for your replies, I am feeling a bit more stable now. I just started freaking out and in all honesty feeling sorry for myself I guess as this all seems so unfair and I just want it to go away.

Some days I’m fine but then other days I’m just a mess, trying not to cry and am so angry this is the reality. But as i said before, I am lucky that I am ok at the moment and then that just makes me feel guilty for ever getting upset as I am fine!! Urgh it is just all so frustrating and today I just wanted to put my head in the sand and believe it wasn’t really happening.

Your advice has helped though and I know I need to start this medication. And May you are correct in saying that I can always stop it and maybe that’s what I need to keep telling myself.

Right, it is lunch time and I am going to eat and take my first pill! I can do this!

If you have any other suggestions for Tec then please let me know of what to eat and when to take, anything I should avoid or do etc.

Thank you once again for taking the time to help me. Deep breaths.

Heidi, DMD’s are Disease Modifying Drugs :slight_smile:

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Hi Spluff,

Thanks for the comment, we were probably writing at the same time!

So you think porridge did help? I am so bad at eating breakfast to be honest, I don’t think I’ve eaten breakfast since I was about 12 and just really hate it as a meal but if you think it really does help I will really make an effort to try to eat breakfast… Or do you think lunch could be just as good if I take Tec later in the day?

Sophia x

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Sophia,

I’m a bit like you - I was recently diagnosed, and apart from very odd sensations in my feet I don’t actually feel ill, and it seems odd to take drugs with side effects that may require more drugs for something that doesn’t currently make me feel awful. I’m trying to think about it in terms of future defence, not immediate impact, especially as I have small children.

I started taking Tecfidera a couple of weeks ago and have had no gastric side effects at all. I have had quite a lot of hot flushes, but it’s fine, and I’ve only needed to take an anti-histamine once when I went extremely blotchy too. I’m terrible at eating breakfast, but have made myself do it so that I can take the Tecfidera in the morning, just find anything that works for you, even if it isn’t a ‘breakfast’ food (hard boiled egg and a slice of toast seems to be ok for me).

Take care of yourself.

R

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Hi

Unfortunately everyone is different, so what one persons experience is, may not be the same for you. However quite often, as has already been said, people often post when they need help because things are not going well on a med and if things are fine you tend not to post anything, so you don’t always hear of the positive experiences.

I have been on Tec for nearly four weeks now. I was given four weeks of lower and four weeks of higher when I collected my first batch. I read all the posts about Tec and took up the porridge idea as I can weigh porridge and keep to a diet on it but also be full up which seems, from other posts, to be important before you take it. At weekends I am going to start experimenting with different options but for me porridge does the trick. So far I have had three weeks at 2 x 120mg a day and am just finishing week four of 1 x120mg in morning and 1 x 240mg in evening. Apart from a little bit of flushing which for me, so far, is visible as a red face but not extreme heat to go with it…it comes on a couple of hours after pill then goes…it has all gone well. I have one more week of the 120mg/240mg option then on to full dose. All I can say is so far so good.

This is my third DMD, so I dreaded going through the side effects again but having had a big relapse that left me with problems I wanted to give myself the biggest chance I could, of keeping relapses at bay. If you are feeling well at the moment it is the perfect time to consider DMDs. They don’t prevent relapses but they help stop a good percentage. It is the relapses that can cause the damage so keeping them away for as long as possible is the reason I am giving this third option a try,

good luck with them.

mish x

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Good afternoon.

I am in the exactly same boat as you regarding Tec. I, like you feel that I don’t need it at the moment but may do in the future.

One minute Im all for it, then I read something else and change my mind. But my main concern and it really does nag is the rare side effects, the main one being PML. I searched the Internet for hours researching Tecfidera and this site was the most informative (for me anyway), its up to you if you want to to have a look.

https://www.tecfidera.com/pdfs/full-prescribing-information.pdf - I

When I last saw my MS nurse and obviously the subject came up, she told me to look at it as an insurance policy but I am still not convinced.

This is one of the hardest decisions I have ever had to make so Im not taking it lightly. Research Tec until you go blue in the face (I have) and I still cant decide. After all my research, I have got a list of questions as long as my arm, so when I see my neurologist next week, I will put him through his paces and hopefully then I will make an informed decision which is best for me at this moment in time and hope whatever my decision is, it does not come back and haunt me sometime in the future.

Ang

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Definitely understand DMDs are not for everyone, especially as I had bad side effects from first two I tried.

I had two minor relapses put down to trapped nerves becore one big one forced me to go back to GPs when I lost the use of my hand and arm, balance, etc. I have never fully recovered. DMDs may not have stopped it but it would have helped my body at least to put up a fight against it. I wish I had known I had MS before my big relapse, so I could have put up more of a fight.

Just a thought :slight_smile:

Mish x

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I understand the worry about weight gain. Before I started the drug I was thinking I would put on loads of weight if I had to start eating two breakfasts etc. What I decided to do initially was to have a small bowl of porridge then Tecfidera then toast or a bagel with peanut butter. I then didn’t really eat lunch, just an apple or a yoghurt or something. As I got used to the drug I gave up the porridge and just had the toast & peanut butter. Just lately I’ve changed it round a bit - have very little for breakfast but then have the Tecfidera at lunchtime with a cheese sandwich. Mostly this has been the best solution, less nausea. I haven’t put on any weight as I’ve just changed the times I eat the same amount of food.

I would strongly recommend a DMD, most side effects you are likely to have are reversible. The exception is PML but the risk factor is much more fine tuned these days. You could only get PML if you test positive for the JC virus and they test everyone every year. The risks are not as great now as they once seemed. (There’s now a method of working out people’s risk in more detail than just JCV positive.)

The effects of a severe relapse are likely to have a much more serious effect on you than side effects from the majority of DMDs. I know this from experience.

Don’t forget you can start a treatment and stop if you find the side effects are costing you more in terms of your lifestyle than the benefits are worth.

Sue

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Hi Heidi

It stands for Disease Modifying Drugs.

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DMDs are used for the long term strategy. They will not help you today, aside from giving you a sense that you are not about to let this bastard thing called MS ravage your life without you putting up a damned good fight against it.

It is an investment in your future. A good DMD will reduce the relapses and thus reduce the progression of disability. You feel fine now, but in ten years time, you might feel very much unfine! On DMDs this sense of unfine might need 20 years to materialise. That is why we take them.

For tecfidera… the side effects are few and far between. You will find a disproportionate number of horror stories from all aspects of life on the internet; it is human nature to whine and complain. All DMDs have side effects and most come with needles.

Tecfidera is new, but thoroughly tested and is nothing to worry about.

Not a single aspect of your life needs to change to accommodate it. You don’t eat breakfast? fine. you like a bit of booze in the evening? fill yer socks! You like porridge? nasty! but okay… someone has to.

and so on…

you are likely to suffer side effects. from my experience (and every one is different) none of them were severe. no runs and gurgles, no puking, no beetroot face, nothing anywhere near to the horror stories found online.

my stomach cramped once or twice. paracetamol and they were gone.

i had itchy patches of skin. anti-histamines and they were gone.

i get prickly skin sometimes. i eat something and they are gone.

the prevailing advice:

take the tecfidera on top of and food; i find at about the 75% stage of a decent sized meal (decent sized, not super sized).

i take an aspirin half an hour before dose one. i take dose two (sometimes on an empty or beer filled stomach) at bedtime.

do not be in any hurry to get to taking the 100% daily dose. i took 120mg daily during week one, 240mg daily week two, 360mg daily week 3, full dose week 4

everything else is child’s play and absolutely nothing for you to get freaked out about.

good luck. be brave. get on with it. all the very best to you.

1 Like
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Hi Smurphy and everyone! I’m starting Tec soon so I read this thread with interest. and these threads are so helpful! One thing I’ve noticed, and I think I’ve been in denial about, is that it seems DMDs don’t improve any symptoms you have, is that right? My walking has really deteriorated and methylprednisolone doesn’t seem to have had any affect. I’m new to all this but could this still remit? Will the Tec stop it getting worse? Sorry for my ignorance.

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DMDs will do nothing for you short term, aside from perhaps giving you an positive attitude when appreciating that you are being proactive in what will be, a life long fight against this bull5hit called MS.

There are other drugs to help you with your most immediate symptoms / concerns. DMDs should work to ensure any relapses are fewer and less severe over the many years to come.

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Thank you Paolo. You’ve helped me be more prepared and realistic.

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I started on Tecfidera on Wednesday, here’s my tale so far!

I’m sat here eating “breakfast”, (it’s midday) Granola with added flaked almonds and fresh blueberries. Also coconut milk, just to make use of this tin that’s been sat in the cupboard for months, just looking at me…I’ve eaten half of the bowl so I’m taking my Tec tablet now.

On the 1st day I had the granola, took the tablet then ate a piece of toast and peanut butter afterwards. A couple of hours later I started flushing. Lobster pink face, just like sunburn. Arms and legs had a more blotchy flushing. Only felt heat on my face though, and it wasn’t uncomfortable, just there, didn’t make me sweat or anything,and went away after a few hours. 2nd tablet with dinner produced a far milder and shorter-lived bit of flushing.

Yesterday I took the 1st tablet with just the bowl of granola and had no problems, same with the one with dinner.

Right now I can feel mild warmth on my legs, but that’s going already, just popped up to say hi while I’m typing this out.

So I’m hopeful that I’ll get through the lower dosage with nothing unpleasant going on. Next Wednesday when I step up to the full dose will be the test :slight_smile:

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Oh, I forgot…

My thoughts on DMDs is that while they can’t do anything themselves to fix things that are wrong; in slowing down your relapse rate they give your body more chance to recover.

Me for example, I’ve been relapsing with gay abandon since December 2012, the furthest distance between relapses being that one and the next in July 2013. That 6 month timeframe gave me a chance to get 95% back to normal. I could run again (though not until the end of June) I could carry small pieces of furniture out to customer’s cars at work, cognitively I was back on form.

Then I relapsed again, and since then the relapses have been too frequent for me to stage much of a recovery between them. Now that I’m on a different DMD, which I’ll hopefully be responsive too, I hoping that I won’t be relapsing again within just a few months, and I’ll get a chance to get a bit closer to normal function again.

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