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lightning87
4 months ago

Aww so happy for you. I’m starting Tec next month – hopefully it won’t affect us too much.
X


shona12
4 months ago

πŸ™‚ will let you know
I just though they came yesterday so might as well bite the bullet πŸ™‚
so today is going to be a good day
x


lightning87
4 months ago

@shona12 good for you!! Mines are being delivered tomorrow but I’m going on holiday next month and thought maybe best to start once I come back.
All the best, keep us updated how you are getting on x


stumbler
4 months ago

Good luck with it. @shona12 .


vixen
4 months ago

Hello, I remember taking a photo of my fist Tec pack when I started taking it 18 months ago! At the beginning, don’t vary the rules at all. Make sure you take with plenty of fat and protein, don’t skimp on the food you eat with it. There are lots of tips on here if you use the search button. The good thing about Tec is that it doesn’t interfere with life style. If you work, keep a spare there in case you forget it. Another advantage is that it doesn’t remain in your system so, if it doesn’t work for you you can easily transfer to another medication. Good luck x


highlander
4 months ago

Hi @shona12
I’m chuffed that your getting started.
How long did it take from being asked what you’d prefer to actually getting it?
I asked 2 months ago and I’ve heard nothing in return except getting mri appointments which keep being changed.
Hope you get on with it ok.
Many thanks


shona12
4 months ago

Hi @vixen that’s great to know will try and keep one for emergencies after i get through the first pack!.

Hi @highlander I’m chuffed too, took a while to get there.
If I hadn’t chased my MS nurses I still wouldn’t be on the tablets yet.

From seeing my consultant it took about 6 weeks to get my MRI
My MRI was 20th May, I finally got the results read to me by the MS nurse in July, I managed to get a nurse that would chase up and keep me informed, and once she read the results she started talking about drugs and I asked to have a face to face chat with that nurse, which was set up the end of that week, which was the 20th July, we went through the different options the doctor had advised Tec, and they didn’t want to go all out as the MRI was stable.
I decided at that meeting to go with Tec, and managed to get my bloods taken there and then the nurse said if they were ok then the prescription would get written and sent to delivery service. You need to have a call off Lloyds (delivery service) to get all set up on there system etc, and so I got the tables got delivered yesterday from Lloyds.

Must say if I hadn’t kept chasing my results of the MRI and trying the nurses (once a week ish) then I didn’t actually get my consultants letter until the day after I saw the nurse and decided my drug of chose.

Sorry for the long reply, but I hope it helps as it wasn’t fast.

Best of luck highlander.


highlander
4 months ago

Thanks much appreciated.
I’ll start chasing people up.
Well you’ve put another concern to bed for me…..it hasn’t totally wiped you out!
Keep smiling


vixen
4 months ago

Also to the Tec newbies @shona12 and @lightning87; a bit after I started taking Tec I felt my walking and balance were a bit off. Through Shift I chatted with a few others who also said they had experienced the same (although the manufacturers don’t recognise this). However, it was short lived, so just to say no to worry if you do experience any weird things x


shona12
4 months ago

thanks @vixen
did anyone have a rash that itches?
I not sure if it’s an allergic reaction to tablet – took it at 7.40, and this came out at about 1pm???
Sort of feeling it’s unrelated as I have been hot all day (woke at 4 am hot!)
what do you guy’s think?
cheers

Shona


potter
4 months ago

I have been on Tec for 5 years and have never had a rash but I have heard of it with flushing the some people have. Did you take a aspirin before taking the Tec, I hear that helps with flushing. If this rash gets worse after you take the second one you should probably try to get hold of the MS nurse and ask about it. Potter


arbee
4 months ago

It’s only happened to me a couple of times but flushes are a common side effect, I wouldn’t worry too much about it.

I hope it works for you, the first couple of months are the worst but get through those and it should get much easier πŸ™‚


dannibrett
4 months ago

Great news, would be really keen to hear your updates as I start Tec on Monday πŸ™‚


shona12
4 months ago

Thank you all
believe it or not I have never had heat rash before!!!
my arms have calmed down so it must be the hotflush thing!!
O well roll on tonight and tomorrow
Thanks all again for listening to me

Cheers Shona


vivien
4 months ago

@shona12 Hi! I suffer from the flushes and prickly heat on the Tecfidera and had really bad fatigue from the 2nd to 8th week after starting it. I have much more energy now and feel more like me!

I’m allergic to aspirin but have found out anti histamines after dinner reduces the severity and duration of the flushes for me, completely by accident as I needed the antihistamines for hay-fever this year! πŸ˜…

I learned the hard way that you need protein and fat before you take the tec, so suffered a week long bout of colitis. It’s harder for breakfast than dinner, but I’m down to half a bowl of cereal with plenty of milk, then 2 rashers of grilled and trimmed bacon πŸ₯“ in the mornings before mine. If I feel a bit nauseous 🀒 then I nibble on some raw cashew nuts and I feel better within 5 minutes!

If I have dinner early, then I’ve found that eating a cereal bar is enough when it’s time to take my tecfidera later on.

I’ve been on the tecfidera for 6 months today and I have found sticking to a routine makes it easier to remember to take the pills!

My 3 month checkup was fine and I have my 6 month checkup on 29th, so fingers crossed 🀞 I’ll be OK to continue.

I’ve found the Living Well with MS group, run by the MS Society really helpful and I’ve learnt how to manage my fatigue and what actually triggers it and the advice and support is invaluable, as well as here on shift. Ms @stumbler and @grandma are especially fantastic, and always point you in the right direction!

Good luck and let me know how you get on, and please feel free to message me if you need a chat!


highlander
4 months ago

Wakey Wakey!!!
You’ve got pills to take!!
How’s it going?
Keep smiling.


shona12
4 months ago

Good morning
pill taken, still had a reaction again last night but I have taken an antihistamine this morning so I hope that works! I still have a red face and skin feels a little itchy but I wonder if that’s psychosomatic??
@highlander – thanks for the reminder!! smile is on my face after laughing πŸ™‚ so thank you πŸ™‚
@vixen thank you so much I will try that group as well.
I am trying boiled eggs and toast for breakfast! hope it works better than yesterday.
hope the next test goes well.
I think my weight (creeping up all the time at the moment!!) can weight for the moment while I work out how the tablets work with me!
thank you all so much
will keep you updated
keep smiling πŸ˜€


highlander
4 months ago

Hi @shona12
I know it’s Saturday but it’s that time again Wakey Wakey!!
How you going?
Keep Doing the opposite of frowning!


andyturner
4 months ago

Good luck.. 😁


dawnmg83
4 months ago

Hi I’ve been on Tec for almost 4 months now. I remember my first day, I was at work when taking my pill and after about an hour I just went really hot and red all over and started to panick. I had never had a hot flush before that and thought it only happened on your face. I first felt my ear burning from there it spread down my body and lasted about an hour. After that I got them quite regularly, not every day but it’s only been in the past month or so they have calmed down. This week I have had a few mini flushes but i think thats as i didn’t eat enough before taking my pill. Luckily I have had no other side effects, and waiting for my first review to see if they are working for me. I’m still learning but things are getting better. I hope it works for you too good luck with everything πŸ™‚


lightning87
4 months ago

@vixen thanks that’s so good to know as knowing me I’d think it was something else rather than the Tec.

Thanks this thread has been so useful x


grandma
4 months ago

Been on Tec for 6 mths now, had the most horrendous red, scratchy itching 1/2 hr after taking tablet for the first few days, itching disappeared quickly, flusging took a but longer (2-3 weeks) and don’t forget the dicky tummy in week 5-6. All passed by wk 8 , and nothing since. I’m 62 yrs old, don’t know if that has any significance, but all info is power so they tell us. Good luck in the future😍


shona12
4 months ago

@grandma, @lightning87, @dawnmg83 & @highlander
made it through my first weekend!!, taking antihistamine first thing in the morning, I am hot most of the time, people have started to worry when i am not flushed!
I was expecting the first flush about 30 mins after tablet but it took 3 hours!! so I panicked! it last 2 hours as well.
apart from that so fair so good touch wood!
will try not taking the antihistamine when I’m working from home one day this week as I take enough tablets as it is!
but all good really πŸ™‚
thanks all and GOOD MORNING πŸ™‚


lightning87
4 months ago

Aww glad to hear everything is going pretty smoothly bar the flushing. Will make sure I have antihistamines and aspirin when I start them. Not looking forward to the flushing but if it keeps my nervous system from attaching me then it’ll be worth it. Who knew we could be our own enemies?? Haha. Keep well and keep us updated xx


lightning87
4 months ago

Attacking!


highlander
4 months ago

@lightning87 I want my nervous system to stay Attached!
@shona12 I’m happy your managing it pretty well.
Getting my bloods done today so won’t be to long till I’ll be feeling the same as you hopefully. πŸ™‚


shona12
4 months ago

@lightning87 – I think the only thing is to take the leap! not sure my timing is quite right but why put of what you can do today???
I know I’m my own worst enemy!! didn’t think my body would take that as read! πŸ˜›
@highlander – good luck for the bloods then it’s just a bit more waiting and you move forward πŸ™‚


shona12
3 months ago

Hi All
Well I haven’t been around for a week also as I was on holiday (stakeation) ended up staying at home due to ill dog πŸ™
in the end it turned out lucky as I didn’t feel my best!
Hot flushes a bit better now but tummy not great and feeling sick quite a bit (which could be good for my waistline!!)
How are you all doing?
x


stumbler
3 months ago

@shona12, not feeling good and having to settle for a staycation doesn’t sound too great.

And a poorly dog as well. You haven’t been slipping your Tecfidera into the dogfood, have you? πŸ˜‰

I hope you’re both feeling a bit better now…………


shona12
3 months ago

Thanks @stumbler it was ok I got a rest so all good really

No I wouldn’t be that unkind!! πŸ˜›

thank you πŸ™‚ sure all will be fine


highlander
3 months ago

Hi @shona12
Can you send me the directions to STEAKcation please!
Glad you and the dog are feeling better now.


stumbler
3 months ago

@highlander , you don’t know Steakation? It’s a popular place for a meat-up! πŸ˜‰


vivien
3 months ago

@stumbler, @highlander, I believe @shona12 was probably meaning staycation πŸ˜‰ as she was nursing her poorly pooch, who I hope is fully recovered?🐢

Welcome to the world of tecfidera! Has the fatigue kicked in yet? I didn’t realise how bad my fatigue was until it started easing off around 10 weeks in!

I get my 6 months checkup tomorrow, which is where the tecfidera should be fully working in my system, I’ll let you know how I get on! πŸ˜‹


shona12
3 months ago

@vivien – LOL you are right yes english is my first and only language – the world is in trouble if you actually read what I would write without spell check!
I blame the parents – Dad dyslexia and mum for the bad tummy, but I have no one to blame for the MS so that’s all me πŸ˜›
@vivien good luck for today cross fingers for you.
I am always tired and found I needed to take the Tec in the afternoon or lunch so I can take sleeping stuff in the evening.
this Tec life is an ever changing cycle I feel so roll on the next test!
I have my MS nurses next week so will see
O and Good Morning all


grandma
3 months ago

So glad all seems to be going ok. Keep up the good work😍


vivien
3 months ago

@shona12, checkup went fine, annual mri is being brought forward, as last one was after optic neuritis and gave Ms diagnosis, so they want to stick with 12 monthly. I had a 4 month gap between last mri and starting dmt, which is another reason to not wait until January…….

Hope you’re doing well and beginning to level out on the tecfidera?

I’m managing to work full shifts for the first time in 19 months!


shona12
3 months ago

@vivien so glad check up was fine, good to now they are monitoring you well πŸ™‚
I’m still up and down trying different food with it but all in all I can cope and not everyday so all good I think!!
shifts!! I think that would kill me so well done you.
My only worry is I am going to the US for work and worried about sleep as only for a week and full on training but hay I can keep going for a week πŸ˜€
so as always Good Morning and chin up πŸ™‚


highlander
3 months ago

Hi @shona12
Have fun in the states.
Don’t eat to many jelly beans!
They’re very more…ish.

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