Hey, interested to hear if anyone has stopped tecfidera and switched to an injectable. I’ve been on tec for 6 weeks and not liking it so far. I was a bit dubious in the first place and the nagging doubts about it haven’t gone away.
I haven’t had any dreadful side effects, but do get some flushing and nausea which has got worse as I’ve stepped up the dosage. It’s better if I eat a big breakfast and have really tried to keep doing that but I’ve given up - I just can’t eat that much, makes me feel overly full and lethargic all morning. I’d take a hot flush over feeling like I’m stuffing myself full of food.
My main complaint is constantly having to think about it with two doses a day, counting the hours between does, analysing what I’m eating, feeling nervous any time I have a glass of wine etc. That and the worry of serious side effects. I’ve also read that copaxone is more effective in the long run than they first thought, so is a more effective drug than the original trials suggested. But I don’t know if it’s just a bit silly to ask to switch at this point?
Try taking only one Tecfidera because there used to be someone on this forum called Paolo from Canada and over there they have a much slower start to beginning Tecfidera,
If your nasty side effects are reduced, then stay on one, let your MS nurse know what and why you are doing this.
You can add the other dose when you feel up to it.
there is no reason to avoid a glass of wine, I have got blind drunk with the only damage being falling flat on my face!
I suspect you’ll need to give Tecfidera a bit longer before asking to switch drug treatments. In any case, swapping from a category 1.2 drug to a 1.1 isn’t normally seen as a good idea, unless you are really suffering with side effects. Have a look at https://mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid
I don’t think Copaxone is a bad drug at all, quite the reverse, but although it might be better in the long term than generally accepted, it’s still not as good a drug as Tecfidera.
If you find after 6 months or so that you’re still unhappy with Tecfidera, ask to change drugs, but think about switching to a better (higher relapse reduction rate) drug rather than a lesser drug.
You could do as Carole has suggested and switch to one pill a day for a couple of weeks, but that would probably be seen as a bad idea at this point by your MS nurse or neurologist (since you’ve been tolerating it).
Thank you both of you. I think you’re right and I need to stick with it a bit longer, even if it means reducing the dose a bit, although as you say I doubt they will like that plan. I just like the idea of copaxone as it’s so safe, the potential for serious side effects with the other drugs plays on my mind and I wonder if it’s worth the risk. It’s hard to get my head around the idea that something making me feel like s**t is doing my body good!
Thanks so much for the blind drink comment Carole it’s made me chuckle. Good to know my usual one or two glasses of wine shouldn’t matter too much then!
I ‘suspect’ (probably more than suspect!) that I ‘may’ have been blind drunk on both Copaxone and Tecfidera. With no worse outcomes than falling over (same as Carole!) They doctors may suggest that drinking too much on Tecfidera (for example) is a bad idea, but then they’d probably suggest that drinking everyday is bad (obviously they do!) and that drinking more than 14 units per week is also bad (clearly they do this too). Unfortunately, some of us don’t listen. Not that I’m a total alcoholic, but I don’t always stick to the rules!
I’ve been on Tecfidera for 5 years now. At first the flushing and itching was awful, I had tummy problems too. It took about 6 months for it to even out. For the past 3 years I’ve been taking an aspirin with my morning dose ( with Neuro approval) and haven’t had any symptoms. Taking my Tec at breakfast and dinner time, it becomes habitual, you don’t even need to think about it. Oh and most importantly I drink wine too with no problems. I hope it works for you x
I have been lucky with Tec with no serious problems. Like Steph01 always take with food at breakfast and dinner. Pre COVID sometimes forgot when out in the evening, but a great excuse for a cheese and biscuit supper. Only once when away in a hotel did I take it without food, nothing terrible but I will go to the vending machine for a bar of chocolate next time!
Thank you for your replies. I’ll try and persevere. Good to know things can settle down. I won’t take aspirin because certain painkillers have really hurt my stomach in the past so wouldn’t be willing to add that to the routine, hopefully I’ll be ok without. I do notice the flushes seem to happen either right after eating or drinking or when my face gets hot like when I’m wearing a mask in a shop. Not much I can do about either of those things but it’s interesting it seems to have a trigger rather than happen at random.
Ive been taking Tec for about 2 years with no side effects at all. I take them twice a day with food. Breakfast and dinner works best for me. I remember my MS nurse saying certain meds didn’t work well with Tec, Naproxen or Ibuprofen, no mention of aspirin though.
Hi, I was diagnosed with RRMS last summer. Lots of meds carry side effects, but to me, what am I willing to put up with? I had to come off tec after nearly 12 mths as my lymphocyte count started to drop, carried on dropping & didn’t pick up. That was a side effect I couldn’t ignore! I am told I can restart it (if I want to) when my levels reach a certain point, which I want to. It’s taking time… Not much improvement since I stopped it, so I’m meds free at the moment. However… for me, having a choice of meds is incredible. I wanted a treatment regime that was clinically more effective. Copaxone sounds ok, but it’s not as effective. For me effectiveness versus side effects was an easy choice. If I was you, I’d really try & pull out all the stops to hang on in there & if you can’t, at least you tried hard x
I gave up Copaxone for Tec - best thing I ever did. I get hot prickly flushing which is uncomfortable but it passes. I also get gastric side effects from Tec but try to manage those with the Imodium.
I have just been told that I need to stop taking Tec (been on it for 2 years) as my lymphocytes are too low. I have been told that the only option now is to switch to Copaxone as everything is else will also hit my lymphocytes and I have to let them recover (my nurse said this could take two years!!!) I am gutted as I have found Tec really easy and had no relapses! Yes I have had the odd flush and prickle and in the very early days a free gastro issues but other than that I have been really happy. The idea of switching to a lesser effective drug is really scary for me plus I was on plegridy before (which i relapsed on) and it gave me low mood/dark thoughts. What I am saying is I would give anything to be able to stick on Tec.i always take my morning pill now on an empty stomach with zero problems and drink whenever I want to.! If I were you I would definitely give it a bit more time x
Thank you for your reply, really interesting to hear others experiences. Sorry you’ve had to come off it after liking it so much. I know copaxone is thought to be much more effective than original trials suggested so hopefully it will be an effective alternative for you. Good luck! Xx
Hi Belle 69, I know some of your pain, I was taking tec as a 1st line DMT for RRMS but had to stop for the same reason. Low lymphocytes. I’ve not taken any other meds.
I was told I could try taking tec again as you can get a different reaction 2nd time round. Your count can take a while to pick up but I was told best case & worst case. Mine was less than 0.5 in Sept & now it’s under 0.9. It’s improved then decreased, then improved. If I was you I’d ask why you can’t try tec again. It clearly suited you . Good luck xx
Hi, yes I shall definitely be asking if, when my lymphocytes recover , it would be possible to go back on Tec. I was only told by my MS nurse last week and I am waiting to hear back from her to arrange an appointment to discuss Copaxone and to clarify if I need to stop taking Tec immediately or to continue until I switch as the neurologist didn’t clarify this in his directive to her.
It is really encouraging that your lymphocytes have recovered somewhat (I too have been hovering around the 0.5 mark for the last 6 months) Did they give you a number that your lymphocytes would need to be at before you could recommence? How often are they checking your bloods?
Hi, they were just under 0.9 in March. I was having them done every 3 mths. They carried on dropping. Once they reached 0.4 I was told to stop the meds. I know of others, like yourself who have waited 6mths when the level is low. Not sure why I was told to stop but I did! Since Sept, I’ve had bloods done every 4 weeks. They initially came up a bit, then dipped, then improved. I’m told once they are above 1, the neuro will reconsider me starting tec, but they’ve already said in principle I can try tec again if I want to. I will ask to carry on with monthly bloods for a while so we can quickly pick up the effect of tec on lymphocytes again.
That sounds very promising for you. Hopefully you will be able to back on it before too long.I was on it for well over a year before they started dropping which off.i think initially they thought it was a blip.it would seem wise, as you say to request monthly bloods just to make sure. Fingers crossed that your lymphocytes keep behaving themselves!