Hi i have just been diagnosed and told to research DMDs. I am terrified of giving myself injections and have read alot on Lemtrada which i am considering but Tech is at the moment my preferred choice. I would like to know of peoples experiences on this drug…in particular 1 how do you manage side effects? 2 did you take a period of time off work when you started the drug to allow body to get used to it. 3 do you feel better on the tech than off it and on nothing? Energy levels mood etc 4 one for the girls does tech affect monthly cycles And finally have you found it works? Ie no relapses neda on mri’s etc Thanks Jo
when i was making my own decision back in 2008, i really didn’t want intra muscular injections but had no issues with sub cutaneous ones.
this led to me choosing copaxone, daily sub cutaneous jabs.
i felt really well on it and the only side effects were lipotrophy (dents) caused by me not rotating the sites properly.
then my ms nurse saw the lipotrophy on my arm and took me straight off copaxone.
i chose tecfidera next and it’s brilliant.
the side effects are stomach related.
i was warned about diarrhoea and told to stock up on immodium.
i didn’t get diarrhoea but was violently sick the first few times i took the full dose.
then i fiddled around with the food i ate before taking it.
it works for me to take it halfway though my breakfast - porridge / tec / toast.
the other side effect is flushing, again avoided by making sure i had eaten first.
i haven’t had a relapse with either of these DMDs.
my nurse said that if tecfidera didn’t work for me that i could have lemtrada
the fact that the side effects were a little severe made me think that it must be giving ms a kicking!
honestly jo, other people’s side effects don’t mean that you will have the same.
try taking tec for the first time at the weekend, then you’ll know if you need time off from work.
I seriously can’t believe that you’re scared of giving yourself injections and yet you consider something as relatively hardcore as Lemtrada. I will never understand people.
However, that aside, Tecfidera is an excellent first line DMD. Not too long ago there was a report on the Barts Blog (http://multiple-sclerosis-research.blogspot.com/ ) which indicated that Tecfidera works best of all when it’s the first DMD a person tries.
And as it’s an oral drug with an estimated 50% relapse reduction rate, it should be high up on your list.
Carole has listed most of the potential side effects, nausea, flushing etc. But the general rule is that you sandwich the drug between food. So eat something to line your stomach, then take the Tec, then put some more food on top of the drug.
Many people also recommend that if possible, try to start it very very slowly. Usually you are given one week of a half dose then go slap bang into the full dose. You could see if you can start it slower than that. Have a look for posts by Paolo - he’s the Tec expert. (Texpert!)
The fear of injections is based on previous experience for something different. Lem is considered given neuro offered it. Tech is definately front runner at moment just wanted peoples experiences. Thanks
I had bad experiences with injections in the past. Tech is definately first choice …only considering lem if consultant suggests i need it!
Sorry, I didn’t mean to be mean. I hope you get sorted with the DMD that is right for you.
Thanks …understand reservations about lem but read lots of positive things about this…so difficult to decide!
I am on day one, also I have done a full day’s work and no issues p.s had scrambled egg on toast with first dose & finenst ready meal for tea… (Including wine). Felt in need of a treat.