Forum

Taking a break from DMD

Hello all

I have been on Rebif since my diagnosis 4 years ago and haven’t had a relapse since. However I want to take a 3 month sabbatical and feel that lugging 3 months supply of DMDs will really be an inconvenience - not to mention storing and carrying sharps bins too! I have a very mild form of MS and so far when I did have relapses they were tolerable, or atleast for me. I am planning to backpack around central America for 3 months and don’t want the responsibilty of taking the medication…

My neurologist said that that taking a break isn’t impossible but obviously comes with a risk of having a relapse. She then recommended getting in touch with MerckSereno (the makers of the drug) to see what they say but they couldn’t give me any more information as its not their place which was fair enough.

Has anyone got experience of traveling with DMDs and/or taking a break? I would love to hear from you.

Look forward to hearing from you

Billy

Hi Billy.

Sorry cant offer any advice on DMDs, as I`ve never been on them.

But I did want to congratulate you on your forthcoming trip and hope it goes well.

luv Pollx

I have been to the US with three weeks’ worth of Avonex of the mix-it-yourself sort so it did not need refrigeration, and that plus a mini sharps bin took up very little space and was no trouble. But we are talking Premium Economy and a hire care here! Your situation is totally different, though, and I do not think anyone can help you with your decision, really. You either decide to risk it, or you don’t. Realistically, if you are going backpacking in S America, you are going without your meds, I guess. If there was a good place to start relapsing, the back of beyond in S America probably wouldn’t be it, and that is the risk you would have to accept. On the other hand, passing up the chance to do something amazing would be painful, no doubt. It is a tough call. Good luck with whatever you decide. Alison

A couple of things occur to me. Travel insurance. If you get into MS trouble when you are not taking the DMDs that have been prescribed to you, what would the chance be of them paying out? These guys are rarely awash with the milk of human kindness. Secondly, I would not want to be a backpacker in S America trying to cross a border with needles on board, however many letters on fancy headed paper I had to go with them! Alison

I stopped beterferon for three months prior to trying to get pregnant with my daughter. About two months after stopping I had a relapse. Quite a bad one that really effected my eye sight amd balance. I then had steroids that worked really well but ment I had to wait even longer before trying to get pregnant. I don’t want to scare you but it a big thing to stop them as I hadn’t had a relapse for years prior to this. I would see if you can work out a way of going on a fabulous trip and taking your meds with you. I am on avonax now that is a weekly injection but intramuscular. Good luck

Hi Billy Ultimately the decision of taking a break from DMD is yours and one to be carefully considered. Do you use the rebismart as that is not too bulky and for 3 months you would need 36 needles which if I remember where quite small but I do appreciate that backpacking in S America would not be the ideal place to transport meds etc… I stopped taking rebif last June and was DMD free until mid September when I began copaxone so that was a 3 month break for me and To be honest I felt fine,better than I had for ages. Good luck with your decision and hope you have a fab trip. Cathy