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Disease Modifying Treatment Advice

Hi,

I am a newbie to all this.

I was diagnosed with RRMS in March 2014. I experienced symptoms of paraesthesia in my right hand, arm, and leg in November 2013 that was treated with steroids in December 13, this improved in the ensuing months but I still do experience mild discomfort and numbness in my right hand. In November 2014 I developed optic neuritis in my left eye, this was also treated with steroids and cleared up in a matter of days.

My neurologist did the usual tests and everything is pretty normal - my EDSS score was 1.0, and all bloodwork is normal (save for a slightly low Vitamin D level).

My MRI scan still shows a small lesion load in the brain and upper spine and this, coupled with 2 ‘episodes’ in 12 months, has led her to recommend disease modifying treatments. She has recommended Copaxone, Beta Interferon, and Tecfidera. She has explained to me the pros and cons of all 3 and left me to make the decision.

My lifestyle (mainly workwise) is pretty hectic and so I am wary of daily injections and the daily discipline involved. I am not needle phobic so that is no issue, the main issue is finding the right time and place to administer the injections.

So Tecfidera, being an oral treatment, would seem to be the best for me but I am concerned with the potential side effects of the treatment. These include abdominal pain, nausea, constipation, diarrhoea, vomiting etc. and can last up to a month.

Has anyone been on Tecfidera and experienced these?

Is anyone still on Tecfidera?

Anyone have any other recommendations or advice?

Many Thanks,

R

Hi, I don’t have any experience of Copaxone or Tecfidera but I was on Beta Interferon for a number of years. I had good results with it & found the side effects easy to cope with, for me it was ‘flu’ like symptoms (paracetamol dealt with it) that lasted a few weeks, gradually fading as my body got used to the drug.

I had no problem with the injections & did them three time a week, in the evening, using an auto injecter pen, it’s very easy & so quick that I could use it anywhere…I’d inject Mon. Wed. Fri. & have the weekend off.

Not sure if any of this has helped you, good luck with your choice

Rosina x

hi

i was on copaxone for 5 years with no problems at all, then my injection sites became so bad that my ms nurse switched me to tecfidera so i’ll tell you about both.

copaxone - ok it’s daily but there is no set time to do it.

it takes 5 mins which includes applying hot pads and cool pads.

it is a simple procedure which could be easily done in the staff toilets.

i felt really well at first and had more life in me.

tecfidera

simple to take but the side effects take some time to get under control.

i had horrendous nausea and actually vomited the first 2 days.

i hadn’t realised that i could have requested more time on the lower dose because it was the full dose that made me sick.

i was given 1 week supply of the low dose then went onto the full dose.

maybe it would be handy if you had a spare packet of the low dose which you will have to request.

the trick is to eat something substantial, take the pill, then eat something else straightaway.

so i have cereal or porridge, tecfidera and then toast.

both are simple to do - i find that the tecfidera requires more planning but not much now that it’s settled down.

tecfidera has a higher reduction of relapses if that helps you to decide.

you will be fine.

get on one and show ms who’s boss.

carole x

Thanks Rosina for your help!

Thanks for the advice Carole,

I think I am going to take the plunge and go for Tecfidera.

I am a little worried by two relapses in a year and so just want to hit my ms on the head! i guess it is just short-term pain for long-term gain.

good for you rafi87

whatever side effects you experience are temporary so stick with it.

have a supply of gaviscon, immodium, baby aspirin and anti-histamines for the gastric issues and the flushing.

carole x