Last reply 1 month ago
Starting Tecfidera in Ireland

Hi there, does anybody here have advice for starting Tecfidera?
Is it a matter of just taking the drug and getting on with it or is there a support network available in Ireland?
Thanks 🙂

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stumbler
1 month ago

@katiecog , subsequently, there should be regular monitoring requiring a blood test.

So you should be well looked after……


missy1973
1 month ago

@katiecog, hi I’m in Dublin and started Tecfidera. No major issues bar flushing a few hours after I take it in the morning every other day. Flushing lasts about half an hour. I’m going private and don’t have access to a MS nurse. But the pharma company’s nurse came out to me before I started Tecfidera and talked me through it. Then I had follow up calls from them every month or so for the first year. It’s important to get a full blood count every 3 months to check your lymphocytes don’t drop too low. Hope this helps. PS I found ShiftMs very useful to get information.


katiecog
1 month ago

Thank you @stumbler

@missy1973
Thanks for your reply, out of curiosity was it up to you to make first contact with the pharma conpanys nurse ?
Thanks


missy1973
1 month ago

@katiecog, are you approved for the funding under the Long Term Illness scheme? That’s the first step. Then your nominated pharmacy needs the high tech prescription from the neurologist. There was a bit of confusion on my part and I didn’t realize I needed the high tech prescription when I got funding approved. I emailed the pharma company myself and they came back the next day. They were very helpful. I suppose it’s in their interests!


vixen
1 month ago

Hi @katiecog, it’s most important that you take Tec with a mixture of fatty/protein food, and take it mid-meal. Try to space doses evenly; at a bare minimum you need to leave six hours between doses. If you work, keep a spare there so you don’t forget it, or keep a spare in your bag. Some people have gastro issues at first, and there are lots of tips on here if you do a search in the search box above. Most people have flushing at first which s a bit weird. I’m now in year 4 with zero issues, so all the best!


katiecog
1 month ago

Thank you @missy1973 and @vixen

You both have been very helpful.

Unfortunately I can’t find a direct email address for the pharma company, but if you could please pass that on I’d be grateful, I found a questionnaire which won’t allow me put in an Irish address.
I’m not the best with technology 🙃🙂 Thanks again 🙂


missy1973
1 month ago

@katiecog, I unfortunately can’t find the email address I used at the time to contact the pharma company. But I’m presuming you are using Biogen? I had a look at their website and there is a Ireland contact email address: [email protected]
Advise them it is a personal patient query and you’re looking to initiate the Active Nurse Scheme.


katiecog
1 month ago

Thanks for your help @missy1973 , I really appreciate that… put it down as your good deed of the month 😉
Take care 😊


missy1973
1 month ago

@katiecog, glad to help😀!


rhona74
1 month ago

Hi @katiecog.
My Neurologist automatically sent my details to Biogen. They made contact with me and told me to get in touch with them when I had Tec in my possession, then they arranged the house call on the day I started.
I only took it for a few weeks as it didn’t suit me. During that time I spoke to the helpline staff numerous times and they were very helpful.
Maybe you could ask your Neuro team if they have sent your details to Biogen?
I am in Ireland as well.

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