Forum

long term Tecfidera

I’ve been on Tec for two and a half years now. I’m changing hospital/neuro to one which is nearer home, and I have the appointment tomorrow. I’ve been preparing a one page summary of everything as I like to push this over the desk and go through it with the neuro. As it’s an NHS appointment I always want to make every minute count, as I can’t imagine he would have had the time to read my notes beforehand!

Most mornings I wake up with stomach pain - sort of a bowel pain even though it isn’t that - and I’ve had some bowel issues recently.

I will mention this but have any of you long-term Tec users experienced this? There was some talk with the previous neuro about changing to Gilenya. I had a relapse last summer and he put me on a steroid course two months later to see if there was any 'sub-clinical inflammation ’ that would warrant a change to Gilenya.

Just lining up my ducks in a row!

Thanks

Louise

Hi lou62. Unfortunately I have only been taking Tec for around 3 months now so I can’t help you with any long term side effects.

The stomach cramps sound awfult though, I know how much pain I am in if I don’t take the tablets with food with a high enough fat content. A spoonful of peanut butter is the magic ingredient for me.

I would be really interested in hearing how your conversation goes.

Hi Louise, I have also been on Tec for two and a half years.

I recently had an MRI scan so I’m waiting for the results. My neuro said if I have any new lesions I need to think about changing DMT, possibly to Gilenya or Lemtrada. Tec is my first DMT. I’ve not yet decided which I might go for.

I occasionally have bowel problems, I used to get loose bowels on occasion. Now I get constipation occasionally but that might be down to me being dehydrated. I also get flushing a few times a week and indigestion in the mornings.

xx

hi

i had shocking pain in my lower abdomen on sunday.

it turned out to be trapped wind!

a somewhat noisy remedy and it was fixed.

if you think you may have the same put a hot water bottle on it and you should be good to go.

as my old nan used to say “let the wind blow free, where e’er it be. church or chapel let it rattle”.

carole x

I had an appointment with the new neuro on Tuesday. He was fab and treated me like I was a new patient, including the whole taking history and neuro workup thing. Of course he didn’t have most of the info from the previous hospital (although they told me they’d sent it over) including the last two MRIs. The NHS…sigh…

He thinks I may well have gone into SPMS in which case he might not want me on the Tec anyway. He pointed out that I have a left foot drop (which I didn’t realise) and referred me on to physio there as well as the MS nurses. I’m to carry on with the Tec for the moment.

The bowel and bladder things are the most annoying aspect of my MS for me. Fortunately I’m under the care of a very good bladder clinic and that helps keep a lid on bladder issues. I do still wonder about the Tec though but generally OK with it. I still get the flushes though about three or four times a week!

Louise