Last reply 1 year ago
Tecfidera break- advice

Hi- my hospital have made a blunder and ‘forgotten’ to release my prescription to the company who deliver my Tecfidera. The hospital can’t get the prescription signed until next Wednesday (because there’s so few pharmacists in a hospital…!) by which time I’ll have run out of Tec. I’ve been trying to sort this out for a week, I’m so cross. Anyway, I’ll be on holiday by next weds so I’m not going to receive the meds till at least 5 days later so I will have been off Tec for 5 days. Anyone know what I can expect? Any side effects from not taking it? Or from having a break and then going back on it? And is there any value in dropping down to one a day now so that there is still some going through my system every day rather than taking normal dose until weds then nothing at all for 5 days?

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stumbler
1 year ago

@niccis , this is unforgivable and the hospital should be falling over backwards to rectify their oversight!

Try contacting the Hospital’s Patient’s Advice and Liaison Service (PALS) department and see if they are able to expedite a resolution. There’s e-mail and faxes these days, so resolving this is not beyond the wit of man.

Otherwise, the cutting back to half dosage seems a reasonable alternative. But, discuss this with your MS Nurse first.


niccis
1 year ago

My husband has ranted loudly enough on my behalf whilst I’m at work and the hospital have agreed to put the tablets in a paid for taxi to bring them the 20 miles to my house. One less stress for today!


stumbler
1 year ago

@niccis , why do they make us shout so loud, eh?

At least it’s sorted now. So, enjoy your holiday. 😉


potter
1 year ago

For future reference my neuro lets me cut down to one a day when I have a sore throat from a cold. I get dry mouth especially at night from the Tec. I can handle it usually with dry mouth products and gum but when you add a sore throat it is impossible. Potter

@potter

Totally understand we need to do the best we can but I do wonder if your dr has reasons for that advice based on any data. I don’t think anyone has tested that. For a while my wife reduced dosage on tec due to gi issues and everything our dr said was there was actually some evidence that shows tec is much less effective at lower doses. I only worry because colds and illness often can increase the risk of an attack and since Tecfidera is so short lived in the blood it might be when you need it most.


potter
1 year ago

Californiadreamin I thinks it is a catch 22 thing, I wasn’t getting any sleep so I wasn’t getting over the cold. I have had a couple of colds that my husband brought home from work that turn into ear and sinus infections. So I am also taking antibiotics so it takes me about three weeks to get over a stupid cold. I am going on my fourth year of of Tec and have never had a relapse. Potter


lilbird
1 year ago

And so they should @niccis!

Glad you got that sorted how ridiculous that they let it come to that! Hope you have a lovely relaxing holiday now 😊

Seem to spend half my life shouting (or at least having stern words) with people @stumbler just because I unreasonably expect them to do their jobs! Doesn’t seem to matter what I’m dealing with it always manage to end up with some idiot who “can’t understand how this happened…”

Brief rant over, & breathe, & relax…. 😞


niccis
1 year ago

@lilbird I hear you! When I actually see someone for treatment on the NHS- GP, nurses, neuro etc- they are brilliant. I can’t praise them highly enough. But the blood, sweat and tears that patients have to expend trying to navigate unwieldy and ineffective NHS administrative systems is beyond belief at times!


cameron
1 year ago

@niccis, yes! And don’t you think that those unwieldy admin systems are now immeasurably worse because the likelihood is that every hospital department will have lost admin support. So – the chances of letters going astray, phones left unanswered etc. has increased exponentially.


motorhead
1 year ago

@lilbird I’ve been on the phone every day this week to the company who delivers my medication trying to get a delivery date for my next lot of Tec as I’m now down to my last weeks worth- today I got the “I don’t know how that happened, someone will call you later”

I’m still waiting….


niccis
1 year ago

They are rubbish in the face of a problem aren’t they?! My suggestion is ring the hospital- straight to the neuro’s secretary if you can. She/He will get it sorted- if only to stop you from pestering!


lilbird
1 year ago

Yes @niccis you quickly learn that you just have to be a real nuisance if you ever want anything to get done!

Have you had any luck yet @motorhead? No one anywhere apparently ever has any idea how any of these things happened, I’m starting to suspect the world is largely populated by idiots! 😕


motorhead
1 year ago

Yes @lilbird thankfully they’re coming on Monday- I called again on Thursday and was told my paperwork wasn’t there (even though the person on Wednesday said it was,) then they found it on somebody’s desk and called me later that day to arrange delivery.

I had an appointment with my Nurse on Friday, she told me she had sent the paperwork over 3 times to them.

I agree with you, I think most of the world is run by idiots- I just don’t think they realise how important these things are to us lol

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