I can now start DMDs I have decided between Plegridty or tecfidera. I think Plegridty would fit into my life easier than tecfidera. This is because my youngest daughter is severely disabled and I am her main carer. I don’t think I would be able to commit to medication regulary twice a day depending on how she is etc. How are People on Plegridty? I have had all the pre DMDs bloods done and I have to contact my neurologist once I have decided. It’s such a scary place to be. We have respite for my daughter end of September and we are going on holiday. I am worried about side effects. Should I start the meds asap or wait another 7 weeks until I come home? I understand that the side effects can last up too 3 months! How are People on this drug I’m really worried because I know the disease is active in the background. Thanks x
Hello Rachy.
I have no experience of plegridy but i do take tecfidera.
if you have decided on the injectable drug, then good for you. but be advised that taking a capsule twice a day is not a big deal or an inconvenience. the same too can be said for the side effects of Tecfidera.
as for delaying your start of taking DMDs due to an upcoming vacation… i hear this a surprising amount. and i still find it bemusing because quite frankly, why the hell would anyone wait even one second?
the best of luck
Thanks for your reply Paolo in your opinion its that the better drug of the two? Also do you have to take them exactly 12 hours apart? Tec is a fairly new drug doesn’t Plegridty come from beta interferons which have been around for years?
Hi Rachy. Dxd last year I chose Plegridy for the reasons most people seem to do, easy, no real bothersome side affects, don’t like needles etc. Fine for the first month or two. A few muscle aches/pains but Paracetamol sorted that out in no time.
By month two I was distraught! The low mood/depression, although short lived, was unbearable. I would inject on a Monday and bang on cue, next morning I just “didn’t want to do it”. I just couldn’t/wouldn’t get out of bed until mid day. When I eventually resurrected I was miserable. Didn’t want to get dressed. Didn’t want to see anyone. Uncontrollable tears would roll down my face for no reason. it was awful and something I’d never experienced in my life. The strange thing was, it would go as suddenly as it came and would only last 48 hours. On the Thursday morning I would be wondering what on earth it had all been about.
I asked my Neuro to let me change to Tec. She was reluctant as she knew someone with PML etc etc. We agreed that I stay with Plegridy for 6 months to give it a fair trial. When that time had passed, I was so adamant that, that if she refused to prescribe Tec to me, I would not take anything at all. That’s how strongly I felt! She did prescribe it and I’ve been on Tec since March 1st, this year, without problems.
It was easy to use and i had no new lesions. It might be just fine for you, all I’m saying is, be aware of that possible side affect. As for waiting 7 weeks…personally I couldn’t start soon enough on my drug. My ms had lurked in the background for long enough before it showed. Now I knew it was there I wanted to make sure it didn’t take a further hold of my body. As for side affects of Tec, I believe a positive mind set helped me. I was gonna take it and kick it’s ass, no matter what! Plenty of advice on here from people on how to take it and avoid any possible affects. Mine only lasted a few days in the begining. Good luck with whatever you decide on.
Hello Rachy.
Your drug of choice is indeed a beta interferon, they have been around for a loooong time and they serve as a benchmark by which all new drugs are measured.
Consequently, we know from formal studies, that most if not all more recently introduced DMDs are actually better than interferons. After all, what interest would there be in a new product that is not even equal to long standing options?
At the risk of stating the obvious… no drug comes to market before it has been rigorously tested for several years. Of course some DMDs have been around a lot longer than others. but the insinuation of tecfidera being ‘quite new’ is that its efficacy and safety are not proven. this is simply not true.
Tecfidera is the better drug as far as performance goes. Although the potential for side effects vary from person to person, they are usually (ie. 99% of the time) easily managed, mild and short lived. You just have to give it try.
Facts of the matter are these:
interferon gives flu like symptoms; you have to contend with needles which in turn might present issues of health regarding injection sites (aka puncture wounds); you have to store the injectable solutions more carefully than a simple capsule; interferon is not as effective in reducing relapse rate or disability progression as dimethyl fumerate.
the ONLY rule for taking tecfidera = no two doses within 4 hours of each other.
Thank you. Thing is I’m already on anti depressants due to having a disabled daughter etc. I’m now wondering would my anti depressants keep me from feeling the way you felt or would I feel topping myself lol x
I also believe ALL of the ms drugs are relatively new and we are all just Guinea Pigs really. 10/20 years ago there was nothing. You were told you had ms, and there you go. The statistics for reducing relapses and slowing progression are around 30+% for Plegridy and 50+% for Tec.
They don’t have to be taken exactly 12 hours apart. Too much is read into a lot of these instructions. I believe nobodys day can be as structured as that. As long as there’s a gap of four hours between them it’s fine. They come in a card labled Morning/Night, even have a symbol of sun/moon on it!
So many people think this must mean “have to have with breakfast”, and then worry about eating breakfast when they are rushing out the door to work. I don’t do breakkie so I have mine at lunchtime and the last one either at dinner or whenever I remember it that evening. If it’s before bedtime and a while since I’ve eaten, I’ll have it with a snack of crackers and cheese and a glass of milk.
Another thing is people get hung up on is taking it with “high fat content” foods. ??? Just take it on a full stomach, if not you’ll possible just get cramps. That’s all, you won’t die!! 
Ok your making me want to go for the tech now. I was thinking because my disabled daughter is a rubbish sleeper would I end up being being absolutely shattered and having to then set my alarm for 7am to get up have breakfast then take it again at 7pm! That’s what’s been putting me off if I’m honest. Also do people gain loads of weight as well?
From this, i conclude that Plegridy sucks all the bawls! Sounds dreadful.
And a neuro who would not provide one drug to a person, because they ‘know’ another person with a separate illness? Good lord! Simply useless, flaccid logic on display.
Rachy i am concerned you are not hearing the advice… why would would you gain loads of weight?
Truly, honestly, sincerely, the ONLY rule for tecfidera = no two doses within four hours of each other. That is it.
Eat what you want, when you want, as much as you want, however you want. Swallow the tec caps with a swig of beer if you want. Eat anything, eat everything. take dose one at anytime of the day or night… just do not take dose #2 until at least four hours of passed.
Lol.
All the very best.
*have passed
(why still no ‘edit post’ button?)
It was just something my Neuro said at the time Paolo. She was just trying to convey to me there was a risk of contracting PML and she didn’t have a cure for it, as she said. She was never going to refuse me Tec (little miss dynamite that I am!), she just wanted to know I understood it. I had the response that as my bllods were going to be monitored every three month, the risk of contracting it were minimal. If my lymphocytes levels dropped and remained a risk, then of course I would have to accept being taken off of it.
As it turned out, my diagnosis is now considered ppms rather than rrms, so technically I should not be on any dmd. However, at my request, as a sort of insurance policy, she has agreed for me to remain on it///for now. I see her again in October for reveiw. We both know it is purely a psychological exercise.
Just to add to the debate Rachy, whatever you choose can be swapped later if you find it doesn’t suit you.
Tecfidera does have a better (ie lower) relapse rate when compared to beta interferon, and of course it’s a daily pill rather than an injectable.
However, as far as I’m aware, Plegridy does seem to fit into a busy lifestyle pretty easily. Once a fortnight subcutaneous injections, where you don’t even see the needle as you inject, sounds like a dead easy option.
You perhaps should weigh up how many relapses you’ve had, how active your MS is, whether you have a delicate stomach (Tecfidera can make people feel quite nauseous at first) and whether you want to take the risk of more relapses.
if you do opt for Tecfidera, try to get a few weeks worth of the lower dose. The protocol is to give you a half dose for a week, then move you up to the full dose immediately. This is what often makes people feel the full effects of nausea and / or other digestive problems. It is more sensible it seems, to go for a much slower start, with easy steps, so it takes you 4-6 weeks to get up to the full dose (Paolo will advise you on this I’m sure).
And if you opt for Plegridy, make sure you follow the general advise re paracetamol to compensate for any possible flu like symptoms the day or two after
Its very difficult to compare the two drugs, only you can ultimately make that choice. But find out as much info as you can before hand so that you can make an informed decision.
As far as making the decision when to start the drugs, to be honest, whichever you decide you’ll end up second guessing yourself. If you start the DMD and have side effects, you’ll regret it, but if you delay and have a relapse you’ll really feel annoyed with yourself. The decision might depend on which DMD you choose.
Sue
Lol ok. So taking one that is 50% effective would make sense. I was just worried about all side the side effects there are out there although surely not everyone has them all! How were your side effects Paolo and if I had any do u still have them?
Ditto everything said already.
I’m 56 and weigh 10 stones, same as I have done for the past ten years or more. I don’t do regular exercise but try to stay as mobile as I can. I still wear a bikini or go topless when on holiday and have NO intention of letting either my ms or my medication, change that!!
I eat as sensibly as I always have. Nothing’s changed there. Why should it? If anything I eat more fibre and drink more water to prevent constipation. I wouldn’t use my lessening mobility as an excuse to stuff my face with rubbish and pile on the pounds. Keep a positive attitude!
Hi Rachy.
Tecfidera is defo the best ‘first line’ option out there at the moment. And for me (being a puss) anything that doesn’t require needles, is a sure fire winner!
I had some side effects over the first three weeks. But i promise you, all were mild, short lived and very easily managed. The official list of possible side effects is vast, but not realistic. The list exists to cover the pharmaceutical company’s derriere! Biogen do not want to be sued because they failed to list something.
More recently, i sometimes i get a mild, prickly sensation in my face / neck. This usually comes about 4 hours after dose #1. It is always indicative of my being hungry! The solution is simply to eat a snack (but it is usually lunch time by then anyway).
I would recommend that you start tecfidera as soon as possible.
Try to get a supply of the 120mg capsules for as long as you like. That way, you can increase the amount you take daily very gradually. If side effects come along and you struggle, you can dial back the daily dose. Once you know your tolerance to the drug is fine, you can request a supply of the full strength 240mg caps.
The critical thing is that you are able to take something, as opposed to refusing to take anything! Some MS nurses insist that you get on the full dose after a week or two and that any side effects this causes are to be endured. I do not agree with this attitude.
In any event, do not wait. Sooner is better. The next relapse could be the one you are not able to walk away from.
Good luck!
I’ve been on interferon (Extavia - injection every other day) and am now on Tecfidera.
I found Extavia fiddly because of a clumsy hand and tablets are so easy to take. The interferon flu-like side effects weren’t much for me but Tec. is less even less troublesome for me.
You don’t have to be that regimented with Tec. 12 hour gaps is optimal but as Paolo says it only HAS to be 4 hours apart. I have seen depression as a contraindication for interferon. The MS Soc. page on Beta interferons mentions this too,
“It’s possible beta interferons can make depression worse, so you might not be prescribed one if you’ve had depression in the past.”
Has your neuro/nurse taken this into account?
I do make sure my stomach isn’t empty when I take Tec but eat normally.
The advice above seems good .
Good luck!
Hi Rachy
Lots of good advice here. Your main concerns, which are very understandable, seem to be about taking the pills at the right times and the potential side effects. So addressing those points…
I have an unpredictable schedule but now have a good habit of taking them sometime in the morning and sometime in the evening. I don’t worry about what I eat or when I eat it - it makes no difference in terms of the drug - and I have zero side effects and no further relapses.
I realise I am very lucky and I am grateful for that but this is how easy Tecfidera can be. For me, Interferon was another story!
Hi thanks for your positive reply. How long have you been on tech for. I’ve tried phoning my MS nurse with my decision. Typical they are moving offices so can’t really get hold of anyone today! I’m definitely going down the tecfidera route. Despite side effects too many people think it’s the best thing.
Rachy, Send an email instead. My ms nurse is drowning in patients. A huge area to cover. I find my voice messages get forgotten about and unanswered but emails always answered. Positive attitude with the Tec remember. It works.