@Henrietta

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Henrietta

Newly diagnosed - which DMD?

Diagnosed yesterday (by phone of course, thanks COVID) with RRMS. Was expecting it so not surprised. Now have to decide between Aubagio and Tecfidera. I’m tending towards Tecfidera but would welcome feedback / opinions / advice. Thanks 😊

Vixen

@Vixen

Hi @henrietta, boo to the diagnosis! I can only speak for Tec. Have been on it three years, no problems. I feel it's not invasive at all and fits nicely into work, travel and general life. You need to take it with food, which should be a mix of protein and fat. Lots of folk on here take it, and there are lots of tips for when you first start (use search box above for past posts) as it does cause some gastric problems early on for some. Always been good to me though. Good luck with your choice! :-)

Henrietta

@Henrietta

Thanks that’s really helpful. Sounds like I’ll have to start having breakfast then! 😉

Vixen

@Vixen

@henrietta, a good fry up for a treat! Or, if veggie like me, my breakfast for three years has been fruit, greek yogurt and nuts. I forgot to say, it's good to space the two tabs evenly if possible, and certainly a minimum of 6 hours apart

Henrietta

@Henrietta

@vixen thanks 😊 I’m a coffee and croissant kind of person but yogurt fruit and nuts sounds much healthier so win-win I’d say!

wellbelle

@wellbelle

Hi, @henrietta I started tec in June. Intermittent flushing side effects which are uncomfortable but bearable and are becoming less frequent already. I haven’t changed my diet. Really pleased I went with tec as fits around life’s routines well. I never have breakfast and so means I can have with my lunch and dinner. Had a Pub meal out last week and was able Reschedule med times so that I didn’t have to take meds whilst out (and was able to enjoy a drink or 2!)

Henrietta

@Henrietta

@wellbelle That's so helpful, thank you! Does the flushing last long? I’ve started flushing when I have a glass of wine (ahem, maybe two) and I hate it so am a little put off by that side effect. But it’s probably worth the discomfort, may wear off and I guess I’m kind of used to the sensation already...

wellbelle

@wellbelle

Hi @henrietta, I’m finding lasts max 30-50 mins. Flushing when I have had it ranges from pink in face/hot skin to full body flushing/blotchy skin/itchy skin. The full body flushing has only occurred a couple of times for me and it pretty uncomfortable. Side effects have happened in public and I have just tried to carry on as if nothing is happening or unusual. My family say when it does happen it generally doesn’t look too bad. only had stomach cramps a few times when I first started tec and realised that if I take the tablet halfway through my meal that seems to avoid any stomach issues.

Henrietta

@Henrietta

@wellbelle thanks again, getting all this info is helping me a lot 😊 pretty sure I’ll opt for Tecfidera over Aubagio

alleyMcG

@alleyMcG

Almost forty years with MS, myself (but who's counting.) Always choosing treatment with as few drugs as possible. Never took steroids as I was mis-diagnosed for such a long time. I had already stopped working by then.) Only drug that I now use, has been shown to limit MS progression - (something called low dose naltrexone.) No needles and very inexpensive, when used in a liquid method. For info online, check ldninfo.org. only side effect with LDN, (sleep disturbance, for a few days)

valerie98

@valerie98

Hi There, Was just diagnosed in feb 2020 with rrms. Started Aubagio 2 months ago. No side effects at all 🤗 . Easy as one tablet every night. Now just need to cross my fingers as I hope it does what it promises.....neuro says it has a 3 months lag périod (Before it starts working). Good luck to you😁

Henrietta

@Henrietta

@allymcg thanks - I wasn’t offered that as an option but I’ll check it out... @valerie98 thanks for this, maybe I shouldn’t dismiss Aubagio just yet then, was a bit put off by the way it apparently stays in your system for two years if/when you stop it

Emma_1

@Emma_1

Hi @henrietta, I’m sorry to hear about your recent diagnosis. I was on Tec for 3 years and for 2 years I had no new lesions which was unheard of for me! I suffered with hot flushes for the 3 years but I was so pleased my MS wasn’t progressing. I had no other side effects. The flushes could be uncomfortable, frustrating and embarrassing sometimes but certainly not unbearable. Aspirin (and antihistamine) can help prevent them, so if I didn’t want to worry about having a flush, I’d have an aspirin in advance. I tended to get them around 4 hours after taking my tablet. Good luck with your choice, and if you do go for tec please do feel free to get in touch if you have any specific questions!

Henrietta

@Henrietta

@emma_1 it’s the flushes which are putting me off, but I guess it serves me right as I was way too smug about not having any hot flushes during the menopause 😂 and seems like they’re a price worth paying if I do get them...

sarah21

@sarah21

Hi @henrietta, I’ve been on Tec for 18 months. Main side effect is the flushing, was quite dramatic in the first few weeks but glad I stuck with it as it does get better. I still get it sometimes but very occasionally and usually if I change the time of dose or forget a dose. Happens 4 hours after taking. My tips would be definitely take with a good meal and for some reason half way through the meal does make a difference and spaced out a least 6 hours as others have said. Good luck 😉

helndowlinghotmailcouk

@helndowlinghotmailcouk

I'm on Aubagio for 7 years and have been very well but in march had a relapse and was in hospital for 5 days. Waiting to see ms consultant t

Henrietta

@Henrietta

@helndowlinghotmail-co-uk Thanks for that, really sorry to hear you've had a relapse, hope you don't have to wait too long to see your consultant... @sarah21 That's very helpful, especially about sticking with it... I'm still undecided but it's only been a few days since diagnosis and my consultant said I needed to get back to him within 2 weeks so I've got a bit of time.

wellbelle

@wellbelle

@emma_1 Thats a good idea about antihistamine. Had a chat with my MS nurse today and she suggested it also. So I’m going to give it a try.

Isa_Elfers

@Isa_Elfers

Bit late to this thread but my mom takes Aubagio and loves it. She is a totally changed person from the very sick & exhausted parent I had growing up. I can't vouch for it personally because I'm still muddling through the diagnostic process, but would recommend just based on the great effects I've seen it have on her.

helndowlinghotmailcouk

@helndowlinghotmailcouk

Thanks Henrietta

Henrietta

@Henrietta

@isa_elfers Thanks, that’s good to know 😀