I’m two months into my tecfidera treatment, and am feeling increasingly awful. My nose is running constantly (I don’t have a cold), my fatigue is a problem and I’m feeling weaker and weaker. I’m not due for my first blood test for a month, but could low lymphocytes be a reason?
Any ideas gratefully received!
Best wishes
Sarah x
I have heard of runny noses before… but have not heard of people complaining about fatigue etc. (which is a very common symptom of MS to start with).
This is not to say tecfidera / low blood counts / this time of the year etc are not potential factors.
Just curious but… How did you increase your tolerance to Tecfidera? Was it a gradual increase to the full daily dose? You say you are two months along, but some people take that long to just get up to 100%.
Good luck. I hope you are able to stick with it and things improve with time.
Did 2 weeks on the low dose, been on higher dose for 6 weeks
I took tec for two months, I suffered a lot of leg muscle problems when I next saw ms nurse I was told to stop taking straight away,I’m now waiting to start lemtrada in the next few weeks
Hi
ive been on Tec 5 months so far. Still get occasional flush but rarely now, my indigestion side effects have now settled down too, whether it was down to Tec I’m not so sure as I have gallstones and too much fat in my diet gives me indigestion on and off anyway. Ive now started taking Yakult so hopefully I can stop taking Ppi tabs and I’ve cut out chocolate for new year.
I have fatigue at the moment too, I don’t feel to good either just feel off colour this has gone on since just after Christmas.
Im totally fed up with it to be honest and hoping it won’t last to much longer.
Does anyone else get this? Could it be the Tec I’m not due another blood test until beginning of February and that will be my 6 monthly one.
Ann x
That’s interesting, I’ve had shocking cramp in my left calf for of a month. Saw my neurologist today who saved it all away with “well, there are a lot of bugs around, it’s probably that”. Didn’t seem bothered that I’m so weak I can hardly move, can only manage one meal a day without feeling full, and that my nose is running without being congested. Sigh.
hi
i’m glad that i’m not the only one with a runny nose.
it is clear like water and pours like a tap.
my poor old dad panics when he sees me with a tissue (which is constantly) because he and his partner have ailments which mean they have to avoid colds.
i’ve been on tecfidera for 3 years (i think - why can i never remember?)
so sorry for the horrid time you are having and thank you paolo for the info on my runny nose.
my husband noticed that my fatigue was a lot worse on tecfidera than it was on copaxone.
i’m sticking with it though.
got a fab cleaner who cleans the house so thoroughly.
i told her that it’s only the muck holding it together and it now might fall down.
carole x
Oops I’m not anonymously posting just pushed wrong button.
Ann x
Carole I wish I had a cleaner …if you don’t mind me asking how much does it cost you each hour etc.
Ann x
Hi, I hope everyone’s as well as possible with this damn disease! I’ve been on Tecfidera since Feb 2016, the runny nose started within the first few weeks & its still running, some days its better than others though. The other problem I seem
to have is hair loss, both these things only happened after I started Tec. I also have fatigue but I’m not sure if its worse now as I had this before. I have been prescribed a tablet for it but, haven’t been to my g.p to collect prescription yet. My consultant didn’t seem to have any faith in the medication but, said I could try it anyway & see. I reported runny nose & hair loss to the consultant & she said she’d report it to the Tec people. Oh & my lymphocytes are low .0.62 but the consultant didn’t think this was the reason for any of these problems. Regards Helly.
What medication were you prescribed Helly?
I to have fatigue and I’ve tried Amentadine, it didn’t really do anything except make me feel a bit spaced out. It does help some people so if this is what your getting give it a trial as it may work for you. Good luck.
Ann x
How is your fatigue today Sarah? Are you still feeling weak?
Ann x
Hi Ann, yes it is Amantadine, I can never remember the names of these meds. I will try it…nothing ventured nothing gained. x
hi ann
my cleaner charges £20 for 2 hours.
the best £20 i spend all week.
carole x
Thanks Carole
That at least gives me an idea if I decide to get one.
Annx