Had my meeting with Neuro today and got the okay for the changeover. So pleased and relieved. I mad an uninformed choice last July, when I was given the 6/8 drug booklets and told to take my pick. I chose what I thought was the simple option, one injection every two weeks. Easy. It was only after reading on here and gaining so much knowledge, I understood the better percentages of reduction in relapse and slowing of progression etc.offered by Tec. The infamous Paolo’s advice and confidence re affirmed my decision to change. Neuro refused three months ago telling me I hadn’t tried plegridy for long enough and pointed out her reservations on the risk of pml. I put my point across and we agreed a review after another three months and after further mri scans. The good news is she told me plegridy was working. No change in scans. However, there was no way I was prepared to endure the depression and the spectacular site reactions. I’m a stubborn soul and persisted with my knowledge of risk etc, and to my delight she’s agreed. Two weeks flush out and I can start Tecfidera! I did offer my hands up and say if I can’t get on with it, I’d go back with tail between my legs. I’m confident it will work out fine. Thanks for so much info peeps.
good for you poppy
tecfidera is brilliant once you’ve got past the side effects of the first days.
ask for more of the lower dose as paolo explains how this country expects us to raise the dose quickly.
Thanks Carole. I’ve read nothing but mainly good reports of it on here. The ms nurse told me previously that there’s are only ten people on it here… I never asked where, my town, the county, in the republic?! Anyway, now there’ll be 11. You can’t imagine the relief I’m feeling at changing!
I’m ‘infamous’! Is this a good thing?
The very best of luck Poppy.
I have every confidence you will take to Tecfidera with ease!
I sure hope so Paolo. I appreciate your informative Tec posts and I’m sure I’ll have plenty of queries.
Taah Daaah!!! Today’s the day!
I just had my first Tecfidera tablet and I am feeling full of confidence and trepidation at the same time. I actually had a busy morning. Collected script from Pharmacy where the Pharmacist told me he had “quite a few people” on it, but they were all new so he hadn’t much feed back. I promised him I’d provide lots.
Watch this space!
Called in to the Physio place in town as I was passing, and asked was there any exercises I should be doing that might be helpful, now I’m certainly not as fit and active as I was last year. I came out of there with another crutch “for spares” to have one in my car and one in hubby’s! She also asked me to get a referal from my GP and she would do a whole new assessment, now I have my diagnosis. She wants/needs to monitor my mobility and any changes. As it was, my foot was very, very heavy today and I don’t know why.
Hi Poppy, I’m so happy you managed to switch to Tec & I sincerely hope it works for you! I’ve been on it a month now with no problems. Paolo was & is so helpful with his advice so, yes Paolo being famous for giving support & help is a good thing! Good luck Polly !!!
So far I just had the “beetroot bonce”! Took first tablet during my lunch and had the flushing about 4 hours later. Second tablet during dinner and no flushing yet. Happy days.
For the four hour flush, i would suggest eating a snack. Nothing major, just something quick and easy like a simple sarnie.
Tecfidera is a slow release drug and i (only sometimes) get an onset of prickles about 3.5 to 4 hours after dose one.
It usually occurs because i either had a light brekkie, or woke up bloody hungry and my usual brek was inadequate.
In either situation, the tecfidera felt lonely in my belly and started to play up.
Note that in the early days, a simple snack might not be enough as your tolerance is not yet up to pace. There is nothing wrong with taking an anti-histamine to help reduce the rosy cheeks!
Yep, that’s on my list for tomorrow. I don’t mind being rosey right now, indoors. It’s cold, grey and wet outside, so it’s extra heating.
You can’t beat getting checked out by a decent physio, but these exercises are probably a good start. Improving core strength can really help to improve stability.
Thanks for that Whammel. Still taking the ldn. No miracles…yet, but I am getting a good sleep at night since I’ve been taking it.