Recent convert from Limboland
Hello all - long time lingerer but first time poster! I’ve just been ‘officially’ diagnosed with MS but was CIS for nearly two years so Dr wants me on some dmds as my last MRI had A couple more lesions. I have been offered Aubagio and Tecfidera (as well as some injectables - ummm no thanks!) and my question is to you all is how long should I expect to wait for the drugs. I have to let my MS nurse know next week which one I’ll pick - will i get them this side of Xmas? I received an appointment through on Fri to see nurse in May - will I have to wait until then? I’ll ask the nurse this when I call her next week but just want to have an idea! Taaaaaaaaaa Love you all btw - love this forum 💓
@msimon - welcome to our exclusive club. Entrance is free, sense of humour helps (lets face it if we didn't laugh we'd cry). I'm one of the old codgers dxd 25 yrs ago, was on the very first DMT as a trial patient (Avonex- Beta Inferon) was on it for 23 years, it stopped working last year (they did tell me when I was dxd that rrms would become spms in 10-15 years, took 23 so not complaining) so am on Tecfidera, have been for 11 mths, fantastic only having to take a tablet twice a day instead of sticking a ruddy big needle in myself once a week! Only have experience of Tecfidera so you need to do your homework, find out all you can about drugs, side effects, etc., spy glass in top left hand corner gives you info (all anecdotal but never the less useful) on everything. My personal experience with Tecfidera is great, usual problems as expected first few weeks, after 8 wishes all plain sailing and were on month 11! As for when supplies start, almost as soon as you have made your decision (certainly with Tecfidera, haven't had the other so don't know) if you go for Tec, nurse has to take blood and urine samples every 3 months, but drug is delivered by post, doesn't have to be kept cool (had 23 yrs of full fridge, having to arrange for cool place for it to be left in if I wasn't going to be in etc., so I assume when you see your ms nurse next week and you start the ball rolling it could be before Christmas, but a word of warning, I had exactly the same thing a year ago, drug had been delivered and was due to start. Delayed by 10 days, didn't want possible side effects, worse in first 3-4 weeks to ruin Christmas and new year, so started on 1.1.2018. Suggest you do the same. I'm canvassing for our friend @highlander who is trying to get 12 of us misers together to do a calendar girl type calender for next yr to raise money for shift ms, were on 11 and need 1 more fella, how are you fixed, read his post about being famous. 👍😛😜😍
Hi @msimon and welcome. Your MS Nurse is the best person to advise you on delivery times, but they may not be 100% sure. But, you may want to follow @grandma 's advice and enjoy Xmas before you start. I'm providing a link below of all the Disease Modifying Therapies (DMTs) that are available, ranked in order of effectiveness, so this may help:- https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid Always here to answer questions.