Thanks. Typical he’s annual leave until Monday! Yes must try to be positive xx
really glad you’ve chosen Tecfidera, it would seem the best choice to enable you to stay as well as possible to look after your daughter.
just go into it with a positive attitude, yes you may have a few side effects initially but the benefits to you will far out way them.
I started in March I had sickness and stomach aches for 2 weeks, but stuck with it and now take it with no problems at all.
good luck
When you do get your first supply of Tecfidera, it’s definitely worth asking if you can start slowly, having more than one weeks worth of the half dose is a really good idea, and helps many people get over the gastric side effects that are common when you move to the full dose after only one week of the half dose.
Paolos advice, starting week one with just one half dose pill, then moving on to 2 half doses in week two, and so on, is really excellent advice. As is the advice to make sure you eat with the tablets, meals/tablets don’t have to be a full 12 hours apart, just more than 4 hours.
Good luck with it, if you do have trouble in the first weeks, come back to the forum, there’s always someone who will have experienced the same problems, and if there’s a solution, someone is bound to help you find it. (Quite often Paolo, he’s the Tecfidera boss!)
Sue
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I’v been on both Tecfidera and Plegridy. My Med history with ms is : - COPAXONE (2yrs). REBIF (3yrs), TECFIDERA (4months), AVONEX (6 months), PLEGRIDY (8 months) and now TYSABRI (5 months).
Tecfidera appealed greatly to me because it would mean no more jabs (which to be honest, really didn’t bother me as I tolerate them very well - but a pill twice a day was just too good an option). But unfortunately I was very ill on it. The stomach cramps were horrific and very debilitating (I was virtually bed bound for most of my time on it) and the headaches and flushing were just as bad. I took it for over the ‘3 month’ recommended for side effects to lift but I couldn’t take any more as I was just so ill on it.
It obviously just wasn’t for me so my MS nurse advised Avonx which I found very easy to inject and the flu like symptoms were very minimal (I just took my injection whilst going to bed and slept through any discomfort).
After 6 months I found out about PLEGRIDY and the thought of injecting myself just once a fortnight was too good a chance to miss. Once again I tolerated it well but the flu like symptoms for this were a little different. As its a slow release med the symptoms don’t tend to kick in for a couple of days. Doesn’t matter what time you take the injection at, so its a little harder to judge and I also find that the day after I take my injection I feel like crap, so that became my ‘duvet day’ lol. But on the whole I had a very positive experience on it.
Unfortunately, I took 2 extremely bad relapses last year and it was discovered I now have Highly Active Relapse Remitting MS and therefore none of the above meds I mentioned were of use to me anymore. Through many Neurologist and MS Nurse appointments and lots of great advice it was decided the best course of action for me was TYSABRI. I was very anxious and nervous about starting it but I had one of the worst years of my life last year (which ended up with me being wheelchair bound for 3 months) and drastic action was needed or goodness knows what the future would hold.
Its always scary starting new meds - especially as they start to have greater side effects and potential risks the stronger they are but my life without these meds would have been so much worse - so I will always be grateful that we live in a world where they exist.
If you’ve managed to read my typically long comment - then thank you and well done lol. But the basis of it for me is: -
PLEGRIDY, PLEGRIDY, PLEGRIDY lol
Good luck and warm wishes to you whatever you choose.
Steff
xxx
Sorry to hear that Tecfidera gave you a rough ride Steff. It is quite possible that it simply wasn’t the DMD for you, but i do wonder how you managed the drug and the side effects which it provoked?
Did you always take it on a full stomach?
Did you take aspirin before hand?
Did you increase the amount of Tec taken daily, gradually over a course of several weeks?
Did you use paracetamol to resolve the stomach cramps?
Did you take anti-histamines to cure any flushing experienced?
The basis for this post, is i would be concerned that your experiences result in your recommending an inferior product (plegridy), when in the cold light of day, it wasn’t tecfidera which failed you, but the advice and guidance you were given during those fateful three months.
Sincerely, i hope the above doesn’t put you on the defensive; i am genuinely not trying to insinuate that you are giving bad advice in this thread. It is just that i am aware of and have experienced some of what you mentioned when taking Tecfidera and i can appreciate what a hellacious three months you must have endured. However, i am also very aware of the dreadful advice which is still be offered with this DMD.
All the very best of luck to you, especially with tolerating your latest medication. I hope it is ‘the one’!
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Yay finally spoke to my MS nurse who has been on hols and they’ve been moving offices. All confirmed starting Techfidera. He’s putting an order into pharmacy and company will be in touch to arrange delivery. Mentioned about my hols in September and he said it was up to me but he knows a lot of people who have had nasty stomach problems. If it was him he said he’d wait until I returned to start it! Especially as I’ll be abroad. I think I’m going to do this. I mentioned about what if the next relapse I don’t walk away from and he said there is that but this medication doesn’t help with day to day symptoms and also it takes 3 months to start working which I didn’t know! Think I will wait but it’s good to have all your advice to hand should I get side effects but I’m hoping I’ll be one of the lucky ones xx