Forum

Tecfidera

Hi,

I am new to blogs and forums etc so forgive me if I dont get it right first time :slight_smile:

I was diagnosed with MS in the summer of last year. Initially I was on Copaxone daily injections but I gave up on them just before Christmas for various reasons.

I am about to start on Tecfidera and I’ve read up on it all but I have one question? What is the reason behind the blood tests? From reading between the lines I have guessed that the medication affects your white blood cells which can make you more prone to illness/infection??

Also I am only 30 and have a 3 year old daughter. Obviously MS is a progressive disease and will worsen over time. Has anyone who has lived with it for a long time have any advice on what I can do personally i.e. diet etc to try and fight this! I am quite a stubborn lass and I have the view that I dont have MS, it has me and good luck to it as I dont go down easy :slight_smile:

I hope you are all well and I look forward to nay replies,

S x

Hi Sadie, I have just replied to you on my post too. I’m 29 and have a 3year old son. Haven’t got any answers to your questions as only been diagnosed for 3 months but wanted to say hi :slight_smile: xx

Tecfidera reduces your lymphocyte blood cell count. It is an ‘immuno-modulator’.

As such, it can make you vulnerable to a very nasty bug which you possibly have already been exposed to. This world is a dirty place and our natural immunity keeps us safe despite already being ‘infected’. Any potential change to this natural balance needs to be monitored.

But do not worry. This is something everyone is aware of and it takes a long time to develop into something worrisome. Hence the blood tests at least every 3 months. Tecfidera is not something that would cause you to suffer twice as many flus each year, or to make colds persist for twice as long etc…

As for MS being ‘progressive’… well yes… it can be. But by that same token, it might not be. So be optimistic.

For a lifestyle change, i have committed to the Swank diet. There are buckets of free online resources for guidance on what is and is not allowed. There are other diets out there and certainly other people in this forum will name them (i genuinely do not recall them right now).

What appeals to me about Swank however, is that it is not too restrictive (although i do miss cheese) and test subjects have reported favourable results (ie. no progression) for over fifty years!

As you are a self-proclaimed ‘stubborn lass’, i would suggest this… live up to this name. Positive mental attitude is simply the single best weapon at your disposal. Fight every step of the way and even indulge some denial of the diagnosis if it makes you feel better!

Good luck, be well and never surrender! :slight_smile:

I’ve given up refined sugar as i’ve been reading that a high sugar diet may suppress the immune system and increase vulnerability to viral and bacteria infections. It’s been a few weeks now and I feel good. There a huge campaign on anyway called Change for life: Sugar Swaps for the general population especially children, it’s about swapping high sugar cereals for sugar free cereals. Swapping chocolate for fruit. Fruit and honey are still sugar but fruit when eaten whole has fibre which is good. I’m aiming to be as healthy as I can be even though I have MS. In some ways I must be healthier now than i’ve ever been.

Hello, I’m 34 and have two kids who are 8 and 5. I was diagnosed four years ago and have not had a relapse since then. I have been on injections and switched to tecfidera in October and that is going well for me.

I have followed the paleo diet since my diagnosis and go to pilates twice a week and am generally kept active by the kids.

Hope you get on ok with Tecfidera, there is a really good FB group for people on the drug or about to start it where there is loads of advice and support.

Hi Guys,

Thank you for all the comments, they are all really helpful. My start date for Tecfidera is Monday so fingers crossed it all goes well. My doctor advised that I should maybe take some time off work but I’m not doing that, no point in me sitting at home idle, need to keep going.

I dont follow a diet as such just all good, home-cooked, fresh food. Nothing processed and no alcohol :frowning: lol. My daughter keeps me busy when I am not working but I am also going to try and get a bit fitter with some exercise classes etc. Although staying in the Highlands with the weather we have been having, going back out at night time is the last thing I want to do. I’d much rather cosy up with my other half and watch the TV :slight_smile:

I hope you are all well and thanks again,

S xx

Your doctor advised you to take time off work? Sheesh! Nothing quite like a mothering attitude to make you feel things are about to get ugly.

You have chosen to ignore this advice and i would agree.

It is wise to anticipate certain side effects. Even if mild, it is best to be in a location with (perhaps immediate) access to required ‘facilities’. That is why i started my doses on a Saturday. I gave myself a whole weekend to get used to this new regime, without having to miss a single moment of paid employment.

Hi,

good luck with the Tecfidera. I’ve been on it for about 4 months and had no major side effects to speak of, so you may be luck like me. Not sure about the blood tests, our group had them before starting but haven’t been called up to have any more, though I do have a clinic appointment in a few weeks so they may do it then. Telling you to take time off work seems very defeatist of your doc!

Good luck and stay positive,

Gxxx

Taking time off work does seem a bit dramatic. I felt a little bit sick on the first day (but I took it on a saturday so I wasn’t working anyway and could have help with the kids) however it didn’t affect what I did that day, I just felt a bit nauseus. Tec has never stopped me doing what I want and need to do, just get a bit hot now and then but it is no biggie.

I have been on Tecfidera for about 2.5 weeks now, at first no side effects but the last couple of days I have had a hot face and feel very slightly nauseas but it hasnt stopped me doing anything i am just hoping it doesn’t really worsen in any way. I think this is a normal point to start feeling side effects but again its only very mild so I wish you luck with yours. I personally dont follow any diet, i am 29 and was diagnosed about 4 years ago and was on Rebif up until Feb and I also have had no relapses so far i have had what i call echoes of the ones i had previous such as when i sat in a hot tub for too long but was only very brief! :slight_smile:

try aspirin before dosing for the hot flushes or an anti-histmine when a flush comes on