Disease Modifying Drugs

Everyday living
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Hi I would like information on disease modifying drugs. I have RRMS and neurologist has recommended this. I have decided to try Tecfidera and would like to hear from anyone who has been taking this and their experience . I am concerned as I was 60 this year and have had MS probably since my early 20s although not diagnosed until 2000 so wondering if may be a little late to start and also apprehensive about the side effects. would appreciate any input thanks everyone x

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Hi Laralynn

​Have a look at the MS Trust decision aid tool: MS Decisions | MS Trust It might help you to know all the options open to you. I would think that your neurologist has made the judgement that you still have active relapsing remitting MS and so therefore a DMD would help to ward off further damaging relapses.

I wouldn’t think in that case that the age of 60 is any bar to starting on your first DMD. And haven’t you heard, 60 is the new 40 (or some other nonsense like that). Essentially, regardless of your current level of disability, if you can avoid further nerve damage, it’s well worth starting a DMD.

I’ll let others who are currently taking Tecfidera tell you what to expect and how best to start it.

Best of luck with your decision.

Sue

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hi laralynn

i am just coming up to 12 months on tecfidera.

the first week you only take a low dose and it’s easy peasy.

when i started on the higher dose i was sick.

nowadays people are able to ask for more of the low dose tablets so that they can have a gradual introduction.

even though i didn’t have extra low dose tablets, the side effects went after the first month.

give it a go, once your body can tolerate it, it’s brilliant.

so ask for more of the lower dose, stock up on meds like omeprazole, immodium and an anti-emetic.

make sure you eat before taking it.

if you get the flushing, a paracetemol or aspirin will sort you out.

it reduces the risk of relapses by 50%.

carole x

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Yes Sue have heard the saying but not sure I feel it ha ha! Thanks for your advice will certainly look at the MS tool

Lynn x

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Thanks Carole for the information and your experience on Tecfidera. It’s interesting what you say about maybe staying on the lower dose for longer. Will have to see how well I tolerate it and of course I may not have the side effects- thinking positively!

Lynn x

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Tecfidera is an excellent choice.

  • It is simple to take.
  • Has no constraints on diet or behaviour.
  • Has few side effects and if you do get any, they are easily and quickly managed and short lived anyway.

From personal experience of almost 2 years of use, the above is true if:

  • you take an aspirin 30 minutes before dose one.
  • you always take your tecfidera with food (unless last thing at night, in which case just go to sleep)
  • ensure that you are provided with only the low dose capsules (120mg) to begin with
  • start taking tecfidera very gradually: 1 pill daily for week one; 2 pills daily for week two; 3 pills daily during week three and then full strength only once you’re happily into week four. if any point you get intolerable side effects, revert back to the previous week’s dosage.
  • switch to the 240mg once you are confident in your tolerance of a full daily dose

Should you get any of the side effects:

  • come in here for specific advice
  • take a paracetamol for stomach cramps
  • take an anti-histamine for any flushing or itching
  • have a snack if any sort of side effect comes on (typically four hours after daily dose one)

Special notes:

  • some will state a certain type of food is to be eaten with tecfidera (eg. high fat; high protein, etc) this is not true
  • THE ONLY RULE - take no two daily doses within four hours of each other

All of the above might be a helluva lot to get used to. Be assurred, it is child’s play and the tecfidera is the best first line drug out there.

Congratulations on your diagnosis; whilst not good news, it is what it is and at least now, you KNOW what it is and thus what can be done to help ensure your future remains as optimistic as possible.

Good luck!

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Thank you so much helpful and sensible information

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Great reply Paolo

Picked up my Tecfidera from chemist today,been reading up on various forums about how it affects different people

First dose in morning,your reply has put my mind at rest

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Hi folks, just thought I would let you know that since my first ever relapse a few weeks ago which is improving but slowly, I have just been told by my ms nurse that I will not be offered any dmd as it will interact with cancer treatment I am now having. The tumour was removed with no lymph node involved therefore no chemo but start radiotherapy on Monday. I know I am very fortunate to be in the position I am in the terms of the cancer diagnosis but kinda nervous about ms and having another relapse. xxx sorry for the rabble AGAIN

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Good luck! I understand most people are fine x

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Hi, my experience on Tecfidera was not a pleasant one I’m afraid. I tried to persevere for a good month but the stomach issues were horendous. I did loads of research beforehand to try and minimise the side effects but nothing worked so unfortunately had to stop taking them and am now considering Plegridy which is a 2 week injection. Hope your experience is much bettter. Oh, and I’m coming up to 50 and it was my first treatment after 10 years so age shouldnt make any difference!

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Hi I’ve recently started Tecfidera and am now six weeks in. No real problems so far for me, a couple of hot flushes early on and a bit of indigestion, a bit of bloating here and there but all in all I’m really pleased. The capsules are easy to swallow and can be taken between 4 and 12 hrs apart. I take mine at breakfast and evening meal which ensures I have a full stomach.

They don’t need to be stored in any special way as long as below 27 degrees and in original packaging and also have days of the week printed on the box as well as am and pm to help you remember when you take them.

Its really that simple,don’t worry about the side effects as you may not get any, keep a positive mind and you’ll be fine.

Good luck

Ann x

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Thanks Ann- feeling positive x

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Hi, I have been on Tecfidera for six months now and I tolerate it really well. The odd hot flush but that’s all. It is meant to reduce the number of attacks one would have over a period by 50% so well worth trying.

Good luck.

Trev

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Thanks Trev good to hear x