Hi
I’m going around in circles and can’t seem to get a clear answer from anyone…inc the neuro and specialist nurse and it’s around future travel.
So I have Kesimpta in my fridge, I’m ready to go. I have some tummy investigations and my son’s birthday to get through but after 19/09 I can start.
However…I’d like to go on safari and go to South America sometime. You have to be vaccinated for yellow fever. Yellow fever is a live vaccine. You can’t have live vaccines on Kesimpta.
So do I get this vaccine now and delay treatment? OR do I take a break from Kesimpta when this travel may occur and then tackle it?
All I get back from the neuro is ‘we don’t recommend live vaccines on Kesimpta’ but no real answers around this.
Is there an alternative which isn’t live? All questions I’ve asked and tried researching but no one seems able to help.
Yellow fever is a one and done type of jab.
Any help would be so gratefully received as I feel like I’m delaying treatment unnecessarily but I have a young family who want to travel and I too want to see these places.
I’m on Tysabri and went through the same loop when we were planning a trip to Peru. The advice boiled down to: ‘don’t get the yellow fever vaccine, and don’t get yellow fever.’ We stuck to the highlands, avoided the high-incidence rain forest and I sheep-dipped myself in DEET night and day. So I followed both pieces of advice and got to go to Peru. 
You need to do your homework and make a judgement - it’s all about risk management rather than risk elimination.
Also worth remembering that a person floored by an avoidable MS relapse ain’t going anywhere. That would be priority number 1 for me.
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Thank you that is genuinely the most helpful advice I’ve had so far! Although I’m a mosquito magnet so I’m not sure how easy it would be to avoid getting bitten!
I don’t have relapses really but have silent progression. Just as bad and I hear your point.
So you weren’t able to come off of treatment for a period to accommodate the vaccination? Some countries won’t let you enter unless vaccinated.
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It never even crossed my mind to interfere with treatment for the sake of a holiday. But my back-story is important here: I knew only too well by then what MS could do to me and take away from me.
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Hi there. I notice on the NHS website that although the vaccine last for life , a booster is recommended if going to areas with a high prevalence of yellow fever and for people with a suppressed immune system. I don’t know enough about Kesimpta but I think it probably does suppress your immune system ( check this out!).
As Alison says, I think you are going to have to balance risks. If it was me, I wouldn’t hesitate on the treatment and would find other interesting but Yellow Fever free places to visit.
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Kesimpta definitely does suppress the immune system but I wonder how you get a booster when it’s a live vaccine and not recommended for someone on treatment 
.
I hear what you are both saying and appreciate your replies. I do think it’s really sub-optimal not to be able to get a straight answer out of the professionals on this.
What other vaccines should I have had that they’ve failed to mention?
I feel quite failed, and disappointed, at the moment as the sole aim seems to be to get me on the drugs forsaking all other considerations.
And I’ve already agreed to take the meds so why can’t they answer my questions properly? They actually seem put out that I’m asking questions. It is my life, no?
Am I grateful the drugs exist? Yes
Am I pleased about how they’re going to affect my life? Not even a little bit
Do I feel I need to take them right now? No
Do I understand why I have to? Yes
Do I feel I deserve answers to reasonable questions before taking on a lifelong commitment? Absolutely
Sorry I know I sound like I’m moaning and to some extent I am venting but it just seems wrong to not be able to get a clear answer.
Hi there and to get my apologies in first , sorry if this is going to sound like a rather matter of fact reply.
I think my starting and key reference point comes from seeing what MS did to my aunt - more or less bed bound in a nursing home for the last 8 or so years of her life, and pretty much house bound for the preceding 10 years ( until her husband could no longer take care of her).
I don’t know for sure, but you probably would be able to get a booster but personally I just wouldn’t risk that, nor going somewhere where I could catch a disease that apart from the dangers to anyone , healthy or not, could spark an MS relapse (personally I would want a cast iron guarantee on this - and again apologies if this sounds blunt but until an effective re-myelin treatment comes along, a relapse and damage to brain is for life, a holiday is for …….) .
Have you checked out the range of other MS treatments (there is a lot of information out there) and discussed any of these with your MS team? They all carry side effects of different types. Kesimpta Seems to be one of the most effective but there are others. Although if I understand you correctly and if your MS is in progressive phase then the choice is limited. It all depends on what your priorities in life are .
I think I am sort of offering you some probably unwelcome and blunt personal advice - I most certainly wouldn’t do anything that might in any way reduce protection from the further development of MS
My best wishes to you
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Not at all. But my illness isn’t remotely progressive and that’s confirmed by neuro. This is why I’ve been struggling. My neuro has even said she thinks I’m likely in ‘the lucky 20%’ that won’t progress but of course she can’t guarantee it! This is why I struggle so much with all of this. I am ridiculously lucky in that this illness barely affects me BUT I’ve had 3 new lesions less than 0.01mm appear and now there’s a mad rush to medicate me.
Look I get it’s an insurance policy for the future and I need to do this BUT it’s a very hard decision.
That cognitive dissonance must be very uncomfortable. You’re right: you’re lucky that your neurologist wants to protect you BEFORE MS does irreparable damage to you. As you know, it is lamentably common to wait until the damage is done, by which time it is far too late. You know that intellectually, but naturally you wrestle with the very real costs of a condition whose threats must feel to you almost wholly abstract. In the context of MS problems, that’s a nice problem to have (and I know you know that too) but I do get how uncomfortable it must be and I feel for you.
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Thank you @alison100 i think you’ve nailed in entirely on what you’ve said. I appreciate your kind words. I’ve just read your reply (and yours @Hank_Dogs ) to my husband and we both agree that your responses have been kind, thoughtful and respectful. In a world where forums can become unkind I have found these forums to be a lifeline of support. Thank you so much both x
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Thanks Teddybear and I’m kind of relieved to read your comment - I was a little worried I might of gone too far! Everything was definitely said with kind intentions.
The rest of this is just chatting really. I understand your dilemma and frustrations. I’ve sort of felt the same. A little sadly travelling to hot places is off the menu for me these days - heat is really, really draining - but we tend to ‘head north’. We are both nature lovers and a few years ago took a 7-8 day cruise around Svalbard. It was a small ship (90 passengers I think) which meant it could get into small inlets and up close to the ice and wildlife. Have some great memories and photos of Polar Bears feeding on Seal, Walruses hauled up or on ice, and watching various whales. The facilities were a bit basic compared to the big floating hotels associated with cruises but it all made it feel more like an ‘expedition’ than a holiday cruise - as did having armed guides on each landing to protect from any polar bear attacks. Two of the landings didn’t take place because of Bear sightings near the beach.
The Hebrides, Shetland and Orkney are other favourites ( good wildlife plus amazing prehistoric sites and archeology on Orkney.
All the best
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I’m about to start kesimpta too, and I’ve asked about vaccinations… just general ones for being in the UK. I’d like to get the shingles vaccine, for example - I think the new one is not live, officially only available on the NHS for ages 50+ but authorised for age 18+ I think. Awaiting advice on all this.
On the travel, have you got travel insurance/sickness insurance? That would be a consideration for me if heading to Peru. I manage to travel around Europe thanks to work insurance, but with my MS diagnosis I had assumed travel further afield might be off limits. Am impressed that others have managed.
I’m probably a little like you in terms of starting kesimpta hopefully “before” things get too bad. But although it is disconcerting and a bit counter-intuitive to crash my immune system when clinically, things aren’t that bad, I have listened to the advice/experiences of others. I’d rather hit it hard, now, than be regretting inaction in the decades to come.
It’s a tough choice and I’m sorry you haven’t had clearer guidance from healthcare professionals.
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This sums it up perfectly @Leonora. Really hard to accept what we have to do when clinically so well but don’t want a future of regrets. I should probably get divorced too using that logic 
I want to thank you all on this thread too (another thread been truly helpful as well)! I think you have saved me from myself, genuinely.
On the yellow fever thing I finally spoke to someone medical who actually wanted to give a damn and the advice was pretty much as per yours @alison100. Don’t take the vaccine and if you travel somewhere, where it exists, don’t catch it!
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