Hi, I have spent quite a few weeks thinking about this, maybe someone can tell me what they think? I was dx July 2015 with RRMS & started taking Tecfidera on February 8th this year. I am 60 years old. The neuro thought I’d probably had MS for years!! A relapse which made walking, standing, balance & effected my fingers was why I went to the doctors in the first place, other, than those things I felt ok. Since I’ve taken Tecfidera I don’t feel well most of the time, I have the odd good day but more not so good, I luckily haven’t had any side effects eg flushing. I know (no one can know) that I may have had a relapse without Tecfidera but maybe I wouldn’t have had. I want to know if I decide to give up Tecfidera do I just stop? I am seeing my MS nurse on Wednesday 15th & wll speak to her about it. I am going to ask her if I could try Cladribine which I assume would mean transferring to Barts. I had asked for Lemstrada originally but consultant neuro wasn’t happy with that as I’d had Graves disease, so already on thyroxine. I am lucky as I have no pain just slight tingling in fingers & legs. I also had a relapse the week before I started taking Tecfidera which caused a blind spot in my right eye but, it has improved over the last few weeks. I just wish I could know that if I stop taking Tecfidera that I would be ok at least for a few weeks as I think I would feel better as I did before taking it & enjoy my holidays this year. Help please!
Hi Helly
If you’re not happy with Tecfidera, then you have every right to swa to another one. I first started out on Betaferon, but it was horrible - didn’t do anything to stop relapses, and the side effects were awful. So I stopped it & swapped to Rebif, which was loads better - much fewer side effects, and very effective. If/when you do stop it, you’ll need to wait awhile to get it fully out of your system before you can start on something else. Obviously, during that time you will be at greater risk of getting a relapse, but no one can know how likely that is. But then, you may feel better as you’ll not have any side effects.
Talk it over with your MS nurse though. It may be worth writing down all your questions beforehand, so you don’t forget them during the appointment.
Dan
hi helly
someone else posted the exact same question.
the replies said that tecfidera doesnt stay in the body long - less than a day (i think).
good luck
carole x
Hi Helly
I can’t help re Tecfidera as I chose to start on Plegridy (fortnightly injections) but I wanted to reply just to say we have many things in common - I was diagnosed beginning of July 15 too, RRMS. Started Plegridy in Jan 16.
I am almost 59 years old, and it’s thought I may have had MS for a few years, was first mis-diagnosed with a TIA following weakness in left leg, tingling in right hand index finger and thumb and a blurryness in my right eye causing blind spots.That’s mostly gone now and only re-occurs when I exert myself. My main daily symptoms are balance problems, some pain when walking and agony in lower back when standing still for more than a couple of minutes.
I have osteo-artheritis too in both knees and left hip so I don’t know if the pain on standing still is from that or MS.
Hope your appointment goes well on 15th and that you get the answers you are looking for,
AngC
Nowadays there are so many DMDs available that it should be a simple matter to swap. But that’s when you swap to another first line drug. The bigs guns (Lemtrada, HSCT and Cladribine) are somewhat more difficult to get hold of. Maybe you could get Tysabri as an alternative to Tecfidera? As has been already said, try talking to your MS nurse initially. I don’t think there’s a strong likelihood of a rebound relapse after stopping Tecfidera. So it should be a simple matter of stop and get on something else.
Sue
I don’t think Cladribine is hard to get hold of - once you get referred to the fantastic MS doctors at Barts, it’s easy. It didn’t even take me very long to get an appointment with a doctor there (please PM me if you want his name).
It is a bit of a pain having to go all the way to the Royal London to have the Cladribine injections. The injections themselves take less than five minutes to do but it takes several hours for me to get from my home to the Royal London. I did ask if I could have the Cladribine couriered to my GPs and get them to give me the injections. I was told that the Royal London is the only place which is licenced to give Cladribine to people with MS.
Hi, thanks to all for the replies. I hope I can change to Cladribine & thanks Sewingchick I will pm you for the doctor name at Barts . At the moment I am going to stick with Tecfidera because we’re going away for a few weeks in July & again in August & I’m afraid I’d have a relapse way from home. I wil speak to the MS nurse & see what she thinks. My neuro was going to let me have Lemstrada if I didn’t already have a thyroid problem so I don’t think there should be a problem…fingers crossed.
Hello helly.
If you don’t like the Tec, just stop taking it. There is no ‘weening off’ process and the drug will be out of your system in about 16 hours.
But with that being said, if you want to share the reasons for why you are not getting on with it, some forum members here might be able to recommend a few strategies to make your life a bit easier.
DMDs are supposed to be life enhancers and you certainly don’t want to have to put dampeners on things like vacations because of them. But the one you are currently on is supposedly one of the best and so perhaps some ‘best practice’ advice might allow it to become more tolerable for you?
good luck and bon vacance!
Hi Paolo, I am not giving up Tecfidera until at least after my holiday …I’m afraid of having a relapse while I’m away. Its hard to explain why I would even consider giving it up, I don’t have any of the usual side effects but, I just don’t feel well. I was feeling better in myself before I started taking it. More days now I don’t feel well enough to go out, even getting dressed is a chore. Other days I want to go out & just walk around the shops have a coffee & feel glad to be alive! Also I feel the fatigue is worse than before. I almost hope the MS nurse says that there is something wrong with my last test results because I had such hope for Tecfidera. Hope this makes sense ‘just not feeling well’ is hard to explain. x
Given that you are not suffering the listed side effects of Tecfidera, and those things which are currently making you feel less than perfect are not listed as possible side effects, both point to one conclusion:
Tecfidera is not making you feel like crap and you will only invite the risk of feeling much worse by quitting it.
What is your diet like? Taking any vitamin supplements? Getting enough sleep at night? (You don’t need to answer any of these Q’s… i’m merely trying to suggest that you might be shooting yourself in the foot by dropping the Tec, when in all honesty, nothing suggests doing so will improve your situation.)
It’s so easy to blame the high powered, expensive, prescription poisons when something feels less than optimal. In the early days of my taking the Tec, i would dread any sense of nausea and find it as being indicative of the drug not being right for me… whilst completely ignoring the dozen beers and the blue meat kebab eaten the night before…
All the very best.
Hi Paolo, I think my diet’s ok except like you the kebab eaten the night before…rare. I’m taking vitamin D3 only but, had a blood test last week asked for by my GP & will get the results tomorrow. The test was only for my thyroid, B12, folic acid & D3, she said the hospital where I have blood test regularly don’t share the results,… strange I thought they did so will speak to the MS nurse about that on Wednesday. I sleep as usual, I have always been a night owl so go to sleep late but, sleep late so get eight hours almost every night. So having given it a lot of thought I intend sticking with Tecfidera until September unless of course the MS nurse tells me different. Thanks so much for trying to help, your a star with all the help & advice you give. ************ x