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@cljackson 

Last reply

cljackson

newly diagnosed and confused.

Hi all, I've just been diagnosed with ms recently and I am feeling a little bit confused by it all, the neurologist has asked me to go away and research 11 DMD's which I have done but I am still no closer to choosing a drug to start on, my family are amazing and trying to help but I feel that by talking it over with them is hard on them and that I am a burden to them which I know is silly and not how they feel. I guess I'm on here to hear about others experiences with DMD's if you don't mind sharing me as I do understand that it is a very personal matter. thank you very much.
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@Aliga
@Aliga
 

Hi @cl-jackson and welcome. I was diagnosed in March this year and, like you, found the whole range of DMDs confusing. My neuro suggested tecfedera for me as it cuts the relapses in half. I have found this site a great place to ask questions, seek advice and talk to people who really understand what you're going through. One of the members suggested that I take a probiotic along with tec & I can honestly say that the SEs that I've experienced, now that I've settled in with the drug, are minimal (a bit of nausea & some dramatic flushing). I can't comment on any of the other DMDs as I've just had tec, but for me tablets are easier to take than having to remember to inject myself. (even at that I've had to set phone alerts to remind me to take the tabs!). Give yourself time and space to come to terms with your diagnosis. You'll find the Shift community extremely friendly and helpful and ready to answer any questions. I hope that the replies will help you in your choice. There are folks on here with a lot more years experience of taking DMDs than I have. I should just say that I've not had a relapse since starting in April. :) I hope this helps a little, Ali

@StrictlySoca
@StrictlySoca
 

I would recommend the Barts MS blog for some proper information. Try their posts "Clinicspeak" as a starting point. The Barts treatment paradigm is early and effective treatment rather than the previous ideas which are to start on something "old school" like beta interferon . Personally I started on Avonex 2 years agowhich rendered me a depressed droopy idiot the day after every injection - it lowers relapse rate but not by much but at the time of development many years ago was a breakthrough. My soon to be ex Neuro is ridiculously cautious. I wouldn't even bother with the so call CRAB drugs. Have had Tecfidera which was much better and made me feel "well" and I managed to recover some functions unlike Avonex. Still had a relapse and now I am on Gilenya which seems to be effective and I am starting to feel "well" again. I would have preferred to immediately start on Gilenya as its much better at preventing brain atrophy but when I was first diagnosed I did not know what I know now from lots of reading.. Was quite desperate to get Lemtrada whe it was approved so after my last two relapses I tried to get it but the Neuro was definitely against it. he would have offered Tysabri if the MRI showed new lesions on the last one (don't get me started about that!) Now I am not so sure about Alemtuzumab due to more reports of thyroid problems. It's great that your Neuro has given you a choice of all the options.