@slockha2

Last reply

slockha2

Tecfidera - 7 month wait

Hello. My neurologist has recommended I swap to Tecfidera (been on Betaferon for 13 months but it's not working very well). I've just been told I have to wait 7 months to see the MS nurse to talk about the drug and will get it a month after that. Apparently there is a long waiting list for it. 7 months seems like a long time and I just wondered if this was usual? Has anyone else waited this kind of time? Thanks

Stumbler

@Stumbler

Hi @slockha2 . I do hope there isn't a waiting list for Tecfidera. Just think of all the MSers that are presently taking it - I do hope there are supplies available for them! I'd contact your MS Nurse now to discuss this. If the Betaferon isn't working, then you really want a treatment straightaway that may be more effective. There's a school of thought in the medical profession that believes that you should treat MS with the most effective treatments at the outset - why risk acquiring disability whilst taking treatments which only have a 30-50% success rate. Do your own research into what's available. This booklet will explain the present treatments, http://support.mstrust.org.uk/file/MSDecisionsWeb.pdf . Then ask for the treatment that fits best with you.

slockha2

@slockha2

Thanks @stumbler, will call the MS nurses and see what they say! I did talk to the neurologist about Lemtrada but he didn't think it was appropriate :(

potter

@potter

Can you see another neuro and get a second opinion, in the US it takes about 3 months to get a appointment with a neuro. That would be shorter than 7 months to see a MS nurse. Potter

Hels99

@Hels99

After diagnosis earlier this year I was told if I chose any treatment other than an injectible I would have a 3 month wait to see another MS nurse and then another month or so for treatment (I'm in London). I thought that was too long (there had already been a lot of waiting). 7 months seems a really long time.

Amy_Johnson

@Amy_Johnson

Hi, I have just started Tecfidera. I had an appointment with my MS Nurse a week after seeing my neurologist and him discussing treatment with me. It then took 6 weeks for it to arrive after I confirmed with my MS Nurse that I wanted to go ahead with it. This is the timeframe my neurologist gave me when we discussed it. I do hope you don't have to wait 7 months, that seems like a very long time.

Spikelives

@Spikelives

I waited a month after stopping my Copaxone DMT, to allow it to flush out of my system. Then I started on the Tecfidera. This was 2 1/2 years ago, and I'm still stable on the Tecfidera. I would push back hard on the neurologist or get a new one!! I fired my first neurologist for several reasons. Much happier with my new one!!

Addick

@Addick

It only took me a month after seeing my Neuro/ MS nurse to be put on Tecfidera. Had to wait for 2 weeks for Copaxone to flush out of my system, then started. I am glad i changed drugs as been on it now for 10 months without major problems.

slockha2

@slockha2

Thanks everyone. Right, you have fired me up for some foot stomping tomorrow! Will phone the MS nurse and consultants' secretary (tried today but just got answer machine!)

slockha2

@slockha2

No luck guys. Apparent the waiting list is just that long as so many people are trying to get on it. I've asked if I can have a cancellation if one comes up but it didn't sound hopeful! Apparently there are people waiting for an appointment who were approved for it last year! Madness

Stumbler

@Stumbler

@slockha2 , I'd have a slow read of this document, so that you can see where the NHS are failing:- https://www.nice.org.uk/guidance/cg186 . Then, as suggested above, contact your MP. They'll have a webpage, where you can send a message. You could point them to the NICE Care Standards. Then, just highlight that MS is a chronic, degenerative condition and that if treatment isn't provided in a timely manner, it may accelerate your disabilities, making you a bigger burden to the welfare state sooner than both you and they would want! Sometimes, you just have to rattle these cages! :wink:

slockha2

@slockha2

Thanks @stumbler. I don't know if this has made me more angry or just sad. So for me it's been an epic fail from the very start in terms of the help and advice this says I should have received. Hopefully my new neuro will be better. I will go back again