DMD titration

Everyday living
1

Hi guys

I was wondering if any other forum members have had their DMDs titrated differently from the usual dosage. This is my first

DMD, and my ms consultant has decided that when I commence tecfedera next week I should remain on 120mg twice daily for

a month before stepping up to its full therapeutic dose. He states that this is likely to avoid some of the side effects and better

compliance in the longer term. I know that there is currently some research studies being undertaken which is looking at

changing titration times from 1 week to 6 weeks for tecfedera, but I have not been asked to be part of these. Has anyone else

been approached to commence their DMDs in this way?

2

I started my Tec habit back a few years ago, when the advice with the drug suggested that it could be ‘taken with or WITHOUT food’!!! Oh how times change…

All drugs are not typical in our regular diet and can provoke negative side effects, albeit for a ‘greater good’.

I figured the best plan of action was to adapt gradually to my new ‘dietary supplement’ and so i set upon a course of the 120mg capsules; 1 daily for week one; 2 daily for week two etc until 4 daily at week four.

if at any point i felt the side effects (if any) were intolerable / untreatable, i would regress back to the dose rate of the previous week. this would allow me to continue an intake of the positive poison, whilst developing a tolerance for the side effects.

ultimately, neurologists want you to be on something, anything that can help skew the odds towards a long and healthy life. it is much better for you to take a little for a long time, than a lot in a short time and decide to drop out altogether.

something is better than nothing and by taking the gradual approach, you can get there without a ‘rites of passage’ in the form of beetroot face and puking.

back when i started, the dosing advice was 2 x 120mg daily for week one and then full blast by week two. way too much too soon!

do not worry! you are benefiting from the experiences of others.

3

hi kt

i had horrendous side effects when i went up to full dose.

threw up so much it burned my throat from the stomach acid.

i wanted to continue but found out for myself that i needed to eat before AND AFTER the tec.

now it is recommended to take it 2/3 way through a meal.

new drugs need guinea pigs like us to figure out the side effects and ways round them.

it’s well worth persevering with.

carole x

4

Hi KT

I started Tec 3 weeks ago…low dose 1st week, then straight up to full dose…but no side effects at all.

Take it half way through breakfast…then half way through evening meal with half an aspirin before each dose.

BUT I have always been quite gastrically strong, not prone to sickness bugs etc…

Hope it agrees with you!

All the best,

Roobs x

5

Hi KT,

Wow, I have had a dreadful week on Tec and after consultation with QE at Birmingham no way no how will thy let me revert to the lower dose. They say it’s not therapeutic seems they prefer to adapt a suffer it and see approach aaaargh.

Thank goodness for box sets I say.

Hope all goes well for you

6

I say defy them. Let them puke their guts out.

Many in here can testify to the veracity of the gradual increase approach.

Phucking outrageous if you ask me.

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