Hi all, I am looking for advice on what has worked for you (keeping in mind we are all different). Have just had a change in MRI and confirmed MS. Neuro has left it up to us to decide on medication or not… so hard to decide. What about managing MS via diet? Gluten free, Dairy free, Sugar free? What has been your experience? We have also been given some brochures on medication - Copaxone and Tecfidera… what has been your experience on these medications? Thank you in advance for your help/suggestions.
I think if you want to tinker with your diet, you can do that and take a DMD. Personally I have no faith in diets per se as a means of warding off relapses. But disease modifying drugs are designed to do just that.
So I’d look at Copaxone and Tecfidera. Tecfidera is a better drug than Copaxone in that the average relapse reduction rate is 50% as opposed to 30% for Copaxone.
But if you are going to try cutting foods out of your diet like gluten (which I think is a mistake unless you have Coeliac Disease, but if you want to give it a go, it’s your choice), Tecfidera might be hard to take as you need to sandwich it in between bits of starchy food. So breakfast could be tricky.
Then again, if you aren’t needle phobic and are going to follow one of the MS diets (Swank, OMS, Best Bet etc) you might find it fits better to take Copaxone.
I’ve had both, Copaxone didn’t give me any side effects, nor did Tecfidera overtly, but sneakily it was depleting my lymphocytes (a reasonably common side effect).
Good luck with making your choice.
Hi Lala. Smoke drink and eat loads of meat dump 3 sugars in your coffee, and thats my daily life lol. I started on tecfidera was on that for a year but it messed my bloods up so i was taken off them. Ive been on copaxone ever since no problems easy to inject not sure if its working but in the mind it feels better its like a comfort blanket it just makes you feel more secure. Best Wishes Iain.
In my early years of MS I existed on a diet of cigarettes, red wine, the occasional M&S sandwich and cheese. Oh and red meat. Plus Copaxone. I did fine until MS decided Copaxone wasn’t quite good enough. Since then every other poxy DMD has failed me and my body has taken the toll of living without DMDs. Even though I now eat properly and regularly and cigarettes left my life 7 years, 3 months and 7 days ago (yes I know exactly and still passive smoke whenever given the opportunity!).
Enjoy the fags, the sugar and the red meat Iain.
Agree with Sue and the diet. Just of interest, when I was taking Tecfidera, I used to take it at lunchtime, between a sandwich, soup, roll and/or Yoghurt. If I forgot it with the evening meal, I’d have it with a snack of Crackers and cheese etc before bedtime. Don’t complicate it. So long as you keep about 6 hours between doses you’ll be fine.
Good for you Iain, MS is carp enough without it taking away all of our little pleasures too! I battle between the ‘life’s short so I will do what I damn well please and enjoy myself’ mantra and the ‘Good god woman you need to shift some weight as in the future your husband might need to lift you and you’re going to put his back out and then where will you be?’ On no occasion have I seriously considered giving up alcohol lol!
I have just started Tecfidera (week 3 on Tuesday) I have found it super easy so far and have just taken it with whatever I happen to be eating at the time. I have taken it in the morning with toast and a banana, egg and bacon and just plain yoghurt and not had any side effects at all really (a flush on day one) In the evening I have had it with a main meal but on one occasion I was out at a family reunion and took it after eating 6 hrs previously and 4 large glasses of wine and was perfectly fine!
I think if following a special diet makes you feel better or more in control there is nothing wrong in doing that but I would suggest doing it in conjunction with a DMD. I can definitely see the point of eating healthily to try and stay as well and fit as possible but cannot imagine how any diet could ‘mend’ the damage in our brains.