minnemouse08 10/04/17
Last reply 8 months ago
Family member recently diagnoised

Hello
A close family member was diagnosed with Ms last year , On a recent hospital appointment has been asked to start taking Tecfidera. They have no symptoms so are very confused as to what to do . As the medication seems very aggressive . side effects etc.
Just wanted advice from other people please as we are all still in shock .

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kate4
10 months ago

The prospect of taking medication with potential side effects which could be worse than the condition (at that time) is a very daunting thing. I did a lot of research and was leaning towards Tecfidera before I met with my Neurologist. I had decided that even though I felt ‘asymptomatic’ after 2 distinct relapses, it was important to be doing something, especially when damage can done even without there being obvious symptoms.

Tecfidera seemed to me to offer the best balance of possible side effects and efficacy. The fact it is a tablet also appealed. It also coincided with my Neurologist’s first-line choice and I have been taking it for around 6 months now. I have been lucky to have had really no side effects. Many people find this to be the case.

I’m waiting for the results of a recent MRI scan but haven’t had a relapse for a year now.

Which treatment to choose, or whether to take any treatment, is a big decision. I would say don’t be too put off by reported side effects though. They are often ‘worst case scenarios’ and there are alternatives if they turn out not to be suitable. Good luck!


redrighthand
10 months ago

Presumably your family member had a relapse that led to their diagnosis…? If they’ve made a full recovery and don’t have any symptoms right now, that’s fantastic.

I’m in a similar situation. I was diagnosed in October last year after developing sudden double vision and balance problems. I was diagnosed with MS after this, together with previous neurological episodes (which had previously been attributed to a bad reaction to medication) and an MRI showing a number of lesions. A second MRI in January showed new and expanding lesions and gave a more certain diagnosis.

I’ve made a full recovery from the symptoms of that relapse (although I have serious detachment issues from the shock, but that’s another matter…). It was never a consideration for me to not go on medication. MS is a progressive disease so, if left untreated, is just going to keep getting worse. We can hopefully slow it down until there’s a cure. All evidence suggests that people fare best when treatment is started as soon as possible.

I started taking Tecfidera four weeks ago. I, too, was terrified of the side effects. I know it can be different for everyone but I can tell you how it’s been for me. I’ve had no gastro issues at all, not even any slight discomfort. I’ve had a few instances of flushing but only really noticeable on a couple of occasions. As for PML, there have been only three or so cases among the hundreds of thousands of people taking Tecfidera. It’s really up to your family member to decide whether that’s a risk they’re prepared to take. For me, the chances of Tecfidera preventing the disease from doing more damage outweighed that.

I hope this helps.


minnemouse08
10 months ago

Thank you both for your replies .

So nice to hear from other people x

She had problems with one of her eyes last year after lots of tests and mri scan it was diagnosed ms.

Her eye completely recovered with no medication taken.

Since that time she has had no visible symptoms but another mri scan was done 6 weeks ago and further lesions were found.

Hence why they say she should start medication.

In herself she is fit and well at the moment .


stumbler
10 months ago

@minnemouse08 , MS is a frustrating condition that can keep “nibbling” away at your Central Nervous System (CNS). Not all this damage can be seen by an MRI scan and not all damage will result in noticeable symptoms.

Obviously, the recent MRI has shown that her MS is active and action needs to be taken before a disabling relapse is suffered. Adopting a Disease Modifying Treatment (DMT), e.g. Tecfidera, aims to reduce the frequency and severity of future relapses.

The latest thinking on treating MS is to hit it hard and hit it fast, with an aggressive treatment, before the MS can cause too much damage. The phrase, “time is brain”, has been quoted to reflect this policy.

A DMT is like taking out an insurance policy. You hope that you won’t make a claim, but it “helps you sleep” to know that you’ve done something to mitigate a risk.

It’s good that you’ve joined us to support a family member. There’s a lot of useful information here to help you understand this condition :-

https://support.mstrust.org.uk/shop

But, feel free to ask further questions here.


potter
10 months ago

I have also been on Tecfidera for four years and Rebif for five years before that. I had seen what my aunts that had MS had gone through when there was no treatment available. When I was diagnosed the first thing I asked was when can I start on some medicine. I haven’t had a relapse since I was diagnosed, any of us on Tecfidera will be glad to answer any questions on taking it during the first months. There are some things you can do to lessen side effects during your bodies adjustment period. Potter


minnemouse08
10 months ago

Thank you all for your replies ….. the advice you have all given has been extremely helpful . Just feel in a daze at the moment as we know nothing about MS and what is on the internet is not great . x


stumbler
10 months ago

@minnemouse08 , stick with the MS Trust (https://www.mstrust.org.uk/) and the MS Society (https://www.mssociety.org.uk/) for anything you want to know about MS.

Or ask us ……….. 😉


vixen
10 months ago

Hi there,

To the above I would add that, although it’s a huge wallop to be diagnosed, on the scale of life, being diagnosed today is not the same as being diagnosed thirty, or even twenty years ago. As a recently diagnosed person, groups like this are invaluable; not to spend every waking hour wading through, but to dip into for when you need comfort, reassurance and the feeling that you’re not alone!


minnemouse08
10 months ago

Thank You

Everyone has been so kind x


tracyd
10 months ago

@minnemouse08
As has been said above with MS being a progressive disease, stopping it’s ‘march’ through your system early before it starts taking little pieces of your life away is really important.

In the past this wasn’t possible, but we have wonderful treatments now.

When I was diagnosed my logic was that a good DMT was the equivilent of :

‘blowing up the bridge before the advancing enemy gets to it’ rather than waiting to see if they slow down, turn back or deciding at the last minute when I realised that they had snuck across in the night and stolen my stuff’

You already have offers to talk about other treatments, mine was Lemtrada and my experience with diagnosis, the treatment and life is all documented for people to read at http://www.tracyslemtradajourney.co.uk
I’m happy to share contact details if you or your family member want a chat. You have a friend request 🙂


minnemouse08
8 months ago

My family member has been on the medication for just over a week ( Tecfidera )
The last 3 days they have had really bad stomach pains, so bad they have made them cry 🙁
Is this down to the medication ?
Today we are ringing the ms nurse to ask for advice .
Has anyone else experienced these pains ?

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