@DeeC_Dublin 

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DeeC_Dublin

My First Year on Tecfidera - I'm a newbie!

Hi Everyone! I'm new to this space and the world of MS. I’m a 43 yr old Mum of 1 from Dublin and having suffered 2 clinical incidences in 2021 was diagnosed with RRMS Aug '21. I was prescribed Tecfidera in Sept '21 and thought I might as well try it. Like everything in our world the advice you're always given is – “You may never suffer another MS attack again, or you may have them regularly.” You may have some side effects or none at all. My journey right now is in the land of 'Vagueness'. Anything I'm advised is based on a “may or may not” scenarios. So having debated and fought with myself I said I'd try Tecfidera and see how I got on. Initial advise was NEVER take on an empty stomach and you may or may not experience Flushing for the first few months which we expect to eventually disappear. Food may or may not play a factor in the flushing; but the golden rule was to ensure you had something decent in your stomach for the tablet to land on. So easy peasy and off we go. One year later, here's what I definitely know about Tecfidera! The flushing never went away for me. My MS Pharma nurse was 'surprised' but told me to keep going and to try taking Disprin around the time I'd usually flush; if I wanted to avoid flushing. My GP on the other hand didn’t want me taking Disprin every day as that had other complications that I didn’t need. Around the same time as I started the treatment I developed Rosecea on my face (a skin condition that causes reddening and texturing of the skin on your face. Possible symptoms include blotchy, reddened skin, bumps, pustules, a burning sensation, pain and discomfort and, in the worst cases, it can cause swelling and changes in the facial tissue). I was convinced this was due to the flushing however my MS Pharma Nurse disagreed as there was nothing documented about this condition and Tecfidera. Now correct me if I'm wrong but for those of you who have experienced Flushing I can't see how continual flushing wouldn't have an effect on your skin. For me the flushing would start on my face, spread to my scalp, neck, chest and on particularly bad days, if I was tired or stressed, it would spread down my arms on to my hands - the itch on my hands was so bad! So while I had no stomach issues (which is fantastic) I Iooked frostbitten due to the Rosacea and suffered incredible tiredness after each bout of flushing ,which usually lasts around 30-60 mins at a time. Oh and Peri-Menopause decided to join the MS Party... ladies Flushing and Flashing simultaneously is a bit of a hoot!!! Just keep hydrated and rest until it passes! So 4 weeks ago my Neuro Guy called me of a Friday evening, while I was wandering around Aldi, to tell me to stop taking Tecfidera. My last MRI had shown something in my lung and I'd just had a CT to take a closer look. (the 1 MS Silver Lining in my story – I’m scanned every 6-12 months so anything sinister can be caught early!) Since then I've seen a Respiratory Consultant (Kevin the Lung Guy) who have informed me that I have a Nodule on the lung that they're going to track for a few months, just to ensure it doesn't change shape or grow. The concern is that I picked up an infection and it couldn't fully heal due to the MS Med's. But again, who knows where it came from or why. Possibly COVID or some past infection scarring – it’s really difficult to say. Either way it doesn’t bother me right now. The plan going forward is to start Brabio and keep an eye on said lung for the next few months. While chatting to my MS Nurse/Angel 'Nadia' about the change in med’s we spoke about headaches, so she put me in touch with the Headache Nurse 'Sharon'. For the month of Oct I'm to keep a calendar of headaches (I'm a migrainy type person and daily headaches are nothing new to me) and IF I have more than 15 headaches a month I should go on preventative meds like Candesartan to see if that helps. So that’s where I’m at right now but what have I learned in the past year. Well, as we already know nothing is certain and everything in our world is more than likely given a 50/50 value. Even my sentences are vague! The flushing never went away and having discussed this with Sharon the Headache Nurse she advised me that people who are classed as 'Migrainous' may be more sensitive to medical side effects than those who are not. Is this the reason why the flushing never stopped??? No one could tell me but logically it makes sense. AND finally since coming off Tecfidera the Rosacea has regressed dramatically. Yay for me as I’m getting married at the end of November! For anyone considering Tecfidera this is not a post to deter you but purely my experience and what I learned in the last few weeks. We're all different and have different experiences with MS but if you're armed with a bit more information, you can figure out the why's and how’s thus making more informed decisions. You know your own body and despite a medical professional telling you that the computer says no to your question this doesn't mean it’s not because of your condition or the medication itself. Keep recording and reporting these experiences so we can all learn more! I wish you all a good week!
@Abz671

Thank you so so much for sharing your experience - I should be starting Tec soon so always looking to hear other peoples experience on it. Wish you well on your medication journey x

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@Aok33

Hi, how did you get on on your new meds. I had to come off tec for same reason!