Question/ Advice Please…
I’m newly DX with RRMS… Now it’s time to get on the meds, however, after meeting with my MS nurse. I have been given three treatments to choose from. Those are either Tecfidera / Betaferon or Glatiramer. I asked her what she felt I should go on but she said it was up to me… So with booklet in hand I’m doing the research. But, I would value some input from you good folk, as I’m sure some of you are on one of them… Many thanks.
hi lammy
i was on copaxone (glatiramer) for 5 years with no problems and felt great.
however this is the 6th year and my injection sights are a mess.
therefore i’m about to switch to tecfidera.
so if i was starting out i would probably be tempted to use copaxone because i’d be unaware of the site reactions.
do you meet with other msers?
if so, ask them about their experiences.
i’d show you my worse injection site.
carole x
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I chose avonex because it was only one injection per week and least injection site problems. It’s worked for me, no relapses for a year. I get really anxious about the needles though so in January I’m hopefully changing to tecfidera.
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ah wilf,
i’m due my first delivery of tecfidera and now i’m starting to panic about side effects.
these are not that common.
flushing - take a baby aspirin.
the runs - eat a protein rich fatty meal (peanut butter sandwich)
hair thinning - lots of things on the market for that.
hey ho…
good luck with whatever you decide.
carole x
Lammy the reason they start with the milder first line treatments is that the side effects or long term issues on the stronger drugs might not be worth the risk. So your MS might be better but they can cause other bad health problems, so its about finding the balance.
I was on extavia injections for three years and have now switched to tecidera, pleased so far to not be injecting 3 x a week and no side effects really. I feel a bit hot once a day and that’s it, I had been so worried about starting but in the end it was fine.
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I always ask the question to my healthcare providers:
“If it were you with MS, what would you be doing? What medication would you take?”
I’ve had an internationally respected and published expert on MS tell me that he would take Tecfidera. This was echoed by my own neurologist.
People with long-term health problems tend to be more knowledgeable about their condition, and this can be used to have a frank conversation with your healthcare providers. I find them very honest when you’re able to break the barrier between ‘patient / doctor’ to ‘human / human’.
I’ll be starting Tecfidera in a few weeks time and I won’t have any qualms about doing so. There are side effects to all drugs, but it must be weighed against the potential benefits. Tecfidera is shown to be effective in reduction of relapses with relatively short-term and limited side effects.
I am starting on tecfidera at end of January. I spent a long time considering the different options and the reason I have chosen this one is that I am a part time primary teacher and I understand that the injections can make you feel pretty rotten for at least twenty four hours and I can’t work with 32 8 year olds in that state. I do have reservations about tecfidera as the common side effects are upset stomach and I already have chronic IBS although neuro says this won’t necessarily mean that I am more likely to get this side effect than people not currently suffering with IBD. I also don’t fancy the hot flushes, although neuro says generally both these side effects settle down after few months. Good luck with decision.
There seem to be a high demand for tecfidera in Oxford so my start date is postponed to end of feb 
I started tecfidera in september. I was so worried about side effects. I never had any though and my blood test came back clear two months into it. I am so happy, for me it’s like taking a vitamin. I know this isn’t always the case for everyone though. It’s my first DMD but I’ve had MS for 10 years… My MS neurologist said he’d choose tecfidera himself.
This will make you laugh. I came off rebif. Now on copaxon. Supposed to be starting tecfidera. But when I asked my ms nurse when I was starting she said it was to much trouble for her to sort out ?? Do you feel sorry for her too? Lol
Tecfidera has a reduction in relapse rate and severity of about 50%.
The other 2 are about a 30% reduction.
Tecfidera has been proven to be the more effective drug. I am on Tecfidera now and doing better on this drug than on the injectables.
Good luck with your decision.
I’ve had ms 10 years. injecting rebif for 9yrs. On Tecfidera since August - its the best first line drug available at the moment.
T.x
no brainer. tecfidera.
who needs to deal with the additional problems caused by application of medication via injection sites?
pop a pill and be done with it. side effects are minimal, mild and short lived.
aspirin for flushing, if that is inadequate, take an anti-histamine too.
gastro-intestinal problems are resolved by eating something substantial (NOT necessarily fatty or protein rich) to ensure a ‘full’ stomach.
too bloody easy! (IMO)