I was wondering if anyone has travelled with MS and how they managed to do so. I’m looking to go travelling for around a year, however have just been told I’d need to physically come back to the UK in order for the NHS to give my next batch of medication. This depends on whether I stay on my interferon injection of Rebif, or change as suggested by the consultant to tecfidera, either being every 6 months or every 3. I’m trying to work out how if I plan to travel I can afford to come back to the UK every three months. I have Mild MS however was put on the disease modifying drugs after having two relapses in two years. I haven’t had any since starting, just a few flare ups and my normal symptoms. Travelling has always been something I wanted to do and I don’t want my MS to stop me. Any information or advice would be appreciated. Thankyou.
hi amy
you really need to get this urge to go travelling out of your system.
however you have responded well to rebif and it would be a shame to come off it.
it would be a bigger shame if you become depressed because you can’t travel.
tecfidera requires 3 monthly blood tests so that you don’t develop PML which can be fatal.
have a good talk to your ms nurse.
good luck
carole x
Hi Amy
You should definitely do it. Finding a way isn’t easy, but if you have to come home for your DMDs then that’s what you have to do. But don’t be tempted to come off them. Because it’s not worth the risk of relapse.
I agree with Carole, if you’ve been managing well on Rebif and it’s working, then I would say stay on that. You have to have blood tests at least every three months with Tecfidera to check your lymphocytes level. If it gets too low then you have to come off the drug because of the risk of PML. But if your lymphocytes did dip on Tecfidera, they can take quite some time to return to normal levels. Which basically means you are more at risk of catching viruses.
If you are at home in the U.K. with no DMD and low lymphocytes, it’s easier to stay away from viruses. If you are travelling, you are likely to come into contact with more viruses so could well catch every cold going as well as being more susceptible to other viruses.
This isn’t said in order to scare people from taking Tecfidera in the U.K. (or wherever their home is) or from travelling once they’ve been on Tecfidera for over a year. The action of Tecfidera is to at first temporarily lower your lymphocytes, but then they should bounce back, not dip further. And it’s not that unusual a side effect, so it is a risk. So if you’d been on Tec more than a year, your lymphocytes would have done whatever they were going to do and you’d be past the iffy period. It’s just that travelling just as you are first starting the drug isn’t ideal (imo).
So talk to your MS nurse about all your options and see what their advice is.
Sue
Before you go anywhere, I would ensure that you can get a very good, very thorough insurance policy or several that cover each country and check each country’s way of working. I travelled in my twenties with a back pack and found that the stupidest thing can send you back home, never mind if you have a condition too.
Are you travelling with someone? Do you know them very well? Being hooked up with one person travelling can be a blessing but also you will have rows at some point. We had travel three travel days then rest days. I had a plan B when I travelled. Everything was mapped out to the day but also plan B plotted what if the train is late, what if I can only hitchhike where will I stay, where do I get my money out? Plan B was very useful, ended up in Rome and the bus driver let us have two free bus rides because it was siesta, nowhere to get money from and we had the equivalent of £1.20. My only sandals which had tramped hundreds of miles broke outside a shop in Spain, the lovely man came out saw them and went in and fixed them. A storm of epic proportions washed my undies out of the tent, down the mud and was down the mountain whilst everything I had got wet and horrid and the boys in the next text who were drunk sang ‘Always look on the bright side’. I was ill twice (don’t eat any fish) and ended up in hospital. We missed a bomb in a train station by a day, a nuclear submarine popped up near the beach in Sardinia, we were going to catch the ferry then found the country had some sort of local plague.
It was wonderful, I did it when I was fit, but I have always had a plan B for everything.
I only did it once, it was brill, but if I was doing it now and had my M.S. I would perhaps do it in stages or do a bit, come home, recover. I went on a normal trip to Feurteventura last April which I know quite well, right down the bottom end where it is a bit wild. I knew it would be hard, doctors letters, medicine, permissions, priority boarding, getting on the bus etc. I can’t tell you what the room was like when I got there, I was dumped in a hole at the back of a hotel next to barbed wire. I was feeling poorly and tired. So I waited, without even having a drink of water and went down at 06.50 and told him what the room was like and carefully and quietly what was going to be very nasty if someone didn’t do something. I had a room by the pool by 11. Egypt, they gave me and my friend a room together, not on, he is a good friend but twenty years younger than me, so whilst they were arguing in their Egyptian with Ol, I said ‘Don’t sweat Ol, I’m going to get my things out and go to sleep on the lounge sofa in front of the main desk’. Well, they found a lovely room within ten minutes. I took my travelling cardi off to show my arms too. You need to also learn what not to do in every country, i.e. never point your thumbs that type of thing.
My Fuerteventura trip was wonderful. However, I could hardly move the second day and the ‘brain fog’ was awful. So I had to stay on the sunbed or in the room. If you get this you have to filter it into your journey because you are vulnerable when you are this tired. You don’t want to go on a trip and begger up the next year.
Thankyou for all of your reviews. I will take it all on board and see what I can do.